Treatments

On this page I list the alternative treatments that I have come across and that appear to have had a significant impact.

So you won’t see anything on Botox (botulinum toxin) injections, selective peripheral denervation, or deep-brain stimulation (DBS) here.

Let me know if you have found another alternative therapy that looks really effective. And if you happen to try one of these treatments with good results, kindly report back!

Another thing I would like to mention here is that this page is by far the most popular page of this blog. Although I understand the reason for that – people want to find a clear method to heal – I personally consider the information on this page to be marginally interesting. The really interesting pages of this blog – which are hardly ever read, according to the web-traffic statistics – are: Phenomena and Perspectives. Basically, on these two pages I explain the cause(s) of CD. So far, all people who read those two pages, were shocked to recognize themselves and to understand the real cause of their suffering…

 

 

Natural non-medical self-treatment

This method is developed by Abigail Brown. Among other things, it consists of specific exercises and massage techniques, diet, and correct posture. See the below video.

http://www.youtube.com/watch?v=hn0tDRnlfcM

http://www.spasmodictorticollis.org/index.cfm?pid=318&pageTitle=Christine-Scheidler

http://www.stclinic.com

(From my own experience I can say that this therapy definitely works and brings significant relief.)

 

More all-natural treatments 1: Proprioceptive exercise

Jordi from Barcelona developed his own recovery program, consisting of different elements. One element is therapy to address the anxiety and psychological issues that CD sufferers normally have. Another element is the intensive training and re-education of the neck muscles through specific proprioceptive exercises. He has spent several years to recover, in the beginning with 6 hours of exercise per day. He is now 99% symptom free and only does 5-10 minutes of exercise per day.

http://www.camins-neuronals-disfuncionals.net

 

More all-natural treatments 2: Cross therapy

This German clinic, founded by Ms. Cross, is specialized in straightening out spinal imbalances  without surgery and medication. According to Ms. Cross, the root cause of most spinal problems is pelvic distortion. During the past 25 years, the clinic has been treating over 750 CD patients from various countries and many have completely recovered. Apart from physical therapy to realign the pelvis and entire spine, the patients also need to do repetitive exercises with their head/neck.

There is a testimonial on the German Dystonia Forum of a man who has greatly benefited from Cross therapy and whose brother (also with CD) was completely healed thanks to Cross therapy.

http://www.cross-therapie.de/neupage-2/torticollis-dystonie/

http://www.youtube.com/watch?v=RDS0K4Q_Bgo

http://www.dystonie-forum.de/viewtopic.php?f=4&t=850

 

More all-natural treatments 3: Light running

This German man reports to have cured his CD/ST by ‘light  running’. With a searchlight attached to  his forehead, he used to go to the woods in the dark and run after the dot of light on the ground. Every day, thousands of times. And he used to do spinning in the gym very frequently. At some point, his CD had gone and his head was straight.

http://www.dystonie-forum.de/viewtopic.php?f=4&t=1326

 

More all-natural treatments 4: Rebirthing

This French woman has suffered from severe CD symptoms until she decided to take a crash course in Rebirthing deep-relaxation techniques. She says that after 3 months her symptoms were 95% gone, and what remained was invisible to others and perfectly controllable.  In conjunction with positive thinking, it has allowed her to live almost symptom free for over 30 years now.

http://www.atoute.org/n/forum/showthread.php?t=7248

http://www.rebirthingbreathwork.co.uk/brs_what.html

 

More all-natural treatments 5: Indian approach

The man in the below video has been to a clinic in India, where he got an all-natural treatment consisting of exercise, massage, diet, physiotherapy, some manipulations, yoga, meditation, and a bit of panchkarma. The clinic claims that the results are long-term.

And even if they aren’t it’s still an attractive option for CD/ST patients, since the place looks gorgeous and costs are nominal (starting at 500 euros for 21 days, all inclusive, i.e., food, stay, and treatment).

http://www.youtube.com/watch?v=z1kP5djXQ1M

http://www.ananddham.com/

 

Functional CerebroSpinal Therapy (FCST)

This method has been developed by Dr. Young-Jun Lee. He adds several alternative treatment methods to his approach (such as acupuncture, cupping therapy, Korean herbal medicine), but the key ingredient of the treatment is about balancing the joints of the jaw, and therewith the upper vertebrae of the neck. In Dr. Lee’s view, TMD (temporomandibular joint disorder) is the main physical cause for CD. See the below videos.

http://www.youtube.com/watch?v=PUyVuN_hOwY

http://www.youtube.com/watch?v=I1vf_v_oDFw

http://fcst.co.kr/

In May and June, 2012, I have been at the clinic for treatment. After an initial improvement, I was still bothered by symptoms, getting even worse by the end of my stay. In hindsight, I had put too much pressure on my healing process, getting too many (heavy) treatments every day, retraumatizing my body.
However, I have seen several people with CD getting completely healed in the clinic! The main difference between them and me was that they had no time pressure, taking many months to recover, and they did not get as many subsequent treatments as I did, allowing for recovery periods in between treatments.

 

More TMD treatments

TMD = Temporomandibular joint disorder. In the USA, there are several doctors / orthodontists who have started treating CD/ST by jaw alignment. Their approach is predominantly based on trial and error, using an appliance/splint in the mouth. Also, it seems that they need to make permanent adjustments to the teeth in order to make the positive effect last.

http://www.youtube.com/watch?v=pfDYLYyoUyw&feature=related

http://www.youtube.com/watch?v=7f8cdEPR5Vo&feature=related

http://blog.midwestheadaches.com.ns130.alentus.com/?p=122

 

Hypnotherapy

Hypnotherapist Jacqueline van der Voort deploys hypnotherapy to get the head and neck aligned. I have heard though that it took dozens of sessions to achieve the results as shown in the below video.

http://www.youtube.com/watch?v=rAveCqCBXJs

http://www.hypnosisclinic.org.uk/

 

Ganoderma

The young Colombian man in the below video claims that his CD/ST disappeared after taking Ganoderma  Lucidum (traditional Chinese: Língzhī, 灵芝; Japanese: reishi, 靈芝; Korean: yeongji, 영지) for several months, 6 caps a day. The video is in Spanish, and is obviously meant as an advertisement for the manufacturer (and the man now actually started selling the products himself). But who knows, somehow it looks genuine, and there are more serious testimonials of Colombians on Youtube, recommending the use of Ganoderma for various health problems. I have recently (July 2012) been in touch with this man, asking for more details. He told me that since making the Youtube video, he has experienced a slight relapse of his CD, but then continued to take Ganoderma and is still symptom free. At this stage he doesn’t need to take the capsules anymore, but only a chocolate drink that contains some Ganoderma. He also told me that, to date, he knows no other CD patient who has tried Ganoderma…
By the way, Ganoderma Lucidum can be purchased in multiple places, even via online pharmacies.

http://www.youtube.com/watch?v=23lgq0bFIHo

http://www.ganoexcel.com/

 

AFA blue-green algae

Steve Zarren says he fixed his blepharospasm with AFA blue-green algae. He has started to market the supplement, that apparently provides great relief to CD sufferers as well. I have the impression that he works with probiotics and enzymes to cleanse the body prior to the AFA algae. This treatment doesn’t provide a cure, but an alternative to Botox. Steve has submitted some (commercial) comments to this blog, but didn’t reply when I asked him to provide more details about this treatment and more information regarding the CD patients he claims to have helped.
Personally I have taken AFA blue-green algae during one year. Then I stopped. During the time I was taking the algae, my CD was gradually improving, but it continued to do so after I stopped taking them! So I think that for me it hasn’t done much, if anything.

http://www.mydystoniastory.us/people-ive-helped.html

http://www.dystoniadisease.net/

 

Valtrex / Acyclovir

Throughout the past years, CD sufferers have reported significant relief from taking anti-herpes drug Valtrex or Acyclovir. The finding/invention has also been genuinely patented! This doesn’t provide a cure either, but apparently a good alternative to Botox.

http://www.patentstorm.us/patents/5677308/description.html

http://distoniacervicalcuracion.blogspot.com/2012/01/distonia-cervical-torticolis.html

http://neurotalk.psychcentral.com/thread91603.html

http://www.askdocweb.com/valtrex21.html

 

Medical marijuana/cannabis

Although there is no in-depth study into the effect of marijuana/cannabis on dystonia, there are several reports of CD sufferers who find great relief from the use of this substance.

http://www.mcsocal.com/blog/dystonia-and-marijuana-cannabis-therapy

http://www.420magazine.com/forums/medical-marijuana-facts-information/76700-cannabis-treats-spasmodic-torticollis.html

http://www.dystoniacanada.org/news/resources/as-smoke-clears-tories-liberals-react-pot-ruling

http://www.ocgreenrelief.org/medical-marijuana-for-cervical-dystonia-medical-marijuana-doctor/

http://www.nap.edu/openbook.php?record_id=9586&page=115

http://norml.org/library/item/dystonia

 

Removal of mercury amalgam dental fillings

It is known that heavy metal poisoning can cause dystonia. Removing multiple mercury amalgam fillings has helped this woman to get rid of her dystonia.

http://www.toxicmetals.info/case_laurie.htm

 

Acupuncture

Dr.Arthur Yin Fan uses acupunture to alleviate the symptoms of CD/ST. See the below video.

http://www.youtube.com/watch?v=cOE19MfFStY

http://www.chinesemedicinedoctor.us/

 

Trigger point dry needling (TDN)

TDN is a technique that uses a very fine acupuncture needles to deactivate painful or knotted areas in the muscles. There is a woman who gets a TDN treatment every two weeks, as a natural alternative to Botox. This allows her to live free of pain and CD/ST symptoms.

http://www.spasmodictorticollis.org/index.cfm?pid=206&pageTitle=Treating-Cervical-Dystonia-With-Trigger-Point-Dry-Needling

 

Chiropractic therapy

Dr. Joseph Lawrence, Chiropractic Neurologist, uses eye movements, chiropractic ajustments, and nutritional testing, to alleviate the symptoms of CD/ST. See the below video.

http://www.youtube.com/watch?feature=endscreen&v=ywpv-04Nik4&NR=1

http://fibromyalgiaottawa.com/

 

Deep-tissue massage (NMT)

On the below forum, several CD/ST patients claim that deep-tissue massage (or more specific: neuromuscular therapy, NMT) has put their CD/ST into remission for multiple years.

http://www.metta.org.uk/forums/genf/showsubj.asp?subject=Spasmodic%20Torticollis

 

 

Other treatments I tried personally

Neurofeedback
Immediately after falling ill, I stumbled upon a testimonial of a woman with CD/ST, who had greatly benefited from neurofeedback (http://www.brainstatetech.com/). Before the treatment she couldn’t walk. When the treatment was completed, she literally skipped away.

I did 10 (expensive) treatments. After that, my brain patterns were perceivably more balanced indeed. And I did feel better, less stressed. However, this wasn’t the breakthrough I had hoped for. I might have achieved more with more treatments, but that option had become prohibitive by that time.

Radon therapy
A few months later I tried radon therapy, deep inside the Austrian mountains (Gasteiner Heilstollen: http://http://www.gasteiner-heilstollen.com/). A handful of fellow CD/STers appears to benefit from this treatment. The treating physicians told me that the therapy should have a very good effect on muscle spasms.

I went into the mountain 10 times. It wasn’t recommended to go more often, due to the accumulating dose of radioactivity. I felt it didn’t do much for me. The spasms didn’t go away within the predicted time window of 6 weeks. It was a wonderful experience though, and a very relaxing one as well.

EMDR
Another few months later I tried EMDR in order to solve issues from my past. This didn’t work very well in my case. Probably because EMDR works best for one-off traumatic events, not for the more complex situations. The idea behind EMDR still is very appealing, but there are alternatives better suited for CD/ST, which I will mention elsewhere on this blog.

969 thoughts on “Treatments

  1. I have found a couple of other possible treatments that I will share with you, and see what you think.

    The first is a woman who cured her dystonia by chelating the mercury out of her system, she was poisoned by her dental work. This might often be the case with neurological disorders, heavy metal toxicity.

    http://www.toxicmetals.info/case_laurie.htm

    Here is another link to a story of a woman whose symptoms go away for 2 weeks using a method called trigger point dry needling. A natural treatment instead of botox.
    http://www.spasmodictorticollis.org/index.cfm?pid=206&pageTitle=Treating-Cervical-Dystonia-With-Trigger-Point-Dry-Needling

    I have also found information claiming that cd can be caused by a virus or mycoplasma invading the neurological system in the brain. But I don’t have a link to this.

    • Good finds! I will surely include these in the list of treatments. The fact that there are several completely different natural approaches to relief and/or recovery, confirms that we are looking at a complex disorder that manifests (and cures) itself in different ways from person to person. I think that every disease occurs when balance is disrupted, but for CD the imbalance is even more pronounced; CD literally is imbalance. So getting recovered is all about restoring balance. And I think each individual has different, specific needs for that, and therefore benefits from different, specific triggers. I also had my amalgam fillings removed (OK, only 2 weeks ago), and although I think it will definitely help to get more balance, it is not my cure-all…
      Yet, I think that all CD patients greatly benefit from a method like Dr. Lee’s, that continuously and consistently bombards the system with little stimuli for spinal alignment. Also, I think that all CD patients will greatly benefit from conscious detoxification of their psychological burdens. I think that such detoxification will happen anyway in the course of a physical treatment such as Dr. Lee’s (since body and mind are one). But it will help if done consciously. In the coming days I will write down my views on this aspect, as I think that most – or even all – CD patients have one important thing in common: trauma.

      • I look forward to more of your thoughts on detoxifying our psychological burdens.
        I do believe that all disease and disorders have this in common not just cd people.

      • Yes, I see you have added them!!
        That was one of the articles i read yes.
        I read a couple of others, people who got better taking a perscription antiviral, which I didn’t even know existed, I forget the name if I come across the articles I’ll post them here.
        Feeling hopeless today about possibly never being able to see Dr. Lee, I decided to look for natural cures for the tmj problem. I came across these exercises wouldn’t it be nice if they worked, or would that be too easy?
        http://www.ehow.com/how_2352238_cure-tmj-jaw-exercises.html

    • It’s a long one…

      Amongst so many other things about HSV1, the way that HSV1 attacks the nervous system and lies dormant until triggered by stress makes me think that it could be significantly related to Dystonia. HSV1 at this time appears to be incurable as is Dystonia. If we *suppose* that there is a link between HSV1 and Dystonia then using America as an example:

      - There are 514 million people in North America.
      - 80% of them have HSV1.
      - 300,000 people in North America have Dystonia (http://askjan.org/media/dystonia.html).
      - therefore approx 0.06% of HSV1 sufferers have Dystonia

      *If* all of those with Dystonia have HSV1, then why do only 0.06% of HSV1 sufferers get Dystonia? There must be another commonality – possibly a *physical* commonality since HSV1 is the *”nerve”* commonality. S
      So, we need to either cure the HSV1 or cure the other commonality (maybe there are more).

      Curing HSV1
      According to SFS’s post a day or two ago, the meds for HSV1 do not work well because they don’t penetrate the brain blood barrier. This recent breakthrough allows meds to penetrate the BB http://www.newsmaxhealth.com/Health-News/brain-pathway-fiu-hiv/2013/05/07/id/503221?s=al&promo_code=136A9-1. This article shows that HSV1 may be linked to Alzheimers http://www.alzforum.org/res/for/journal/detail.asp?liveID=188. If there *is* a connection then we know that they are working madly to find a cure for HSV1 – hopefully a cure is imminent.

      If we can’t cure HSV1 then, possibly, if we can find and fix the other commonality then we could fall back into the x percentage of people that have HSV1 but do not have Dystonia.

      “INTJ” commonality
      Is “INTJ” Personality a commonality? There are a number of us “INTJ’s” on this forum but it seems that a high percentage of “INTJ’s” frequent forums in general (read this somewhere) because online forums suit INTJ’s introversion and love of research. How many other people with Dystonia out there are *definitely* not INTJ? It seems that INTJ’s prefer not to use Botox, however there are many sufferers using Botox. If we’re not all INTJ and, especially if many people have “Feeling” instead of “Thinking” as part of their personality, then personality might not be a commonality. Maybe not everyone (i.e. those that are not INTJ) “shut down” when the trauma took place? Maybe – just maybe – it’s a physical and not emotional commonality?

      We need to find out (we need everyone who signed up on the forum to take part so that we can include all personality types)
      - Do we all have HSV1?
      - Are we all INTJ? Take the free Myers Briggs world standard personality test http://www.humanmetrics.com/cgi-win/jtypes2.asp.
      - What other physical commonalities are there amongst us?

      Other physical commonalities
      I have always been curious as to whether other Dystonia sufferers have or suffer similar physical similarities/characteristics. CCD, you have compiled a huge amount of reseach, but I’m curious about specific questions. There may be some very strong similarities that we can investigate. What do we have to lose? Of course there has been huge research into this, but probably not by those suffering from this condition. We know ourselves and have an insider intuitive sense. Even if we can’t cure it this way, we might at least find a commonality that we can focus on to alleviate until they find the imminent cure for HSV.

      Here are some questions we could ask – these are all all pertinent to me. We could allow a month to each come up with questions and then create a final list of questions. I used to do web development and could set up a private online area where we could create anonymous profiles and answer the questions. Is anyone else keen to do this?

      When we finally answer the questions, we should try to do this – if you can identify a possible trigger for your Dystonia (i.e. emotional trauma/physical accident), try to think back to the state you were in around the time the trauma took place.

      Head
      - Which side does your head turn towards?
      - Do you or did you have any teeth missing on the side your head turns towards? Detail if nescessary.
      - Do you or did you have any teeth missing on the side your head turns away from? Detail if nescessary.
      - When did you start getting grey hair?
      - Is your jaw inset, protruding, unbalanced to the side (if unbalanced, which side is lower and how does this relate to the side your head turns?)
      - Do you or did you have any mercury fillings? Did you have them when the trauma (if you can remember trauma) took place?
      - Do you or did you have problems breathing? – Have you had problems breathing your whole life? Describe problem.
      - Do you have forward head position? Most people probably have fwd head these days, but mine is quite severe. Try get a chiro to assess the percentage forward head position you have.
      - Have/do you have breathing problems? Yes or never? Are you a shallow breather? Do you wake in the middle of the night feeling like you’re suffocating?

      Other
      - Do you get writers cramp and in which hand? Do you get it in the hand that your head turns towards or away from? (i.e. I get it in my right hand, which leads up to the right SCM, which makes my head turn to left)
      - Do you build up muscle quickly?
      - Is your one wrist/lower arm bigger than the other and which side? According to the woman who made my wedding dress, my right wrist/lower arm was unusually bigger than the left.
      - Do you have very stiff hamstrings and hips?
      - Weight at time of trauma (underweight, normal, overweight, obese) or in general around time you got Dystonia.
      - Do you have scoliosis? If yes, is it mild, moderate or severe? Describe the bend and how it relates to the side your head turns towards.
      - Is one side of your body bigger than the other? How does this relate to direction your head turns?
      - Do you hold more weight on one side of the body than the other?
      - Are you vegetarian – were you before the trauma took place?

      - Do you or did you used to have what you would consider to be abnormal panic attacks/anxiety?
      - Do you know if you have/had a Magnesium, zinc deficiency?
      - Do you suspect the trauma was related to a physical accident (and therefore stress) or an emotional, but not physical event?

      I know we can cure this, but we need to bond and help each investigate. Let’s do our own research and find the cure.

      • LeeAnn,

        I would not hold your breath on “THEM” finding a “cure” for HSV1 or CD.
        You may already know this, but
        I will explain this part as simply as I can. Medical Science is ran by the pharmaceutical Industry. Also known as “Big Pharma” . They have no interest what so ever in finding “cures”, cures do not make them money. They are only interested in coming up with toxic drugs that may help alleviate symptoms, that give you lot’s of side effects,meanwhile you have to keep buying them because they do not address the root cause of an illness. And since the drugs give you awful side effects, they then prescribe you more drugs to counteract the effects from the previous drug. This makes them lot’s of money, and there is no incentive to cure people.

        In other words we have to cure ourselves, and that is exactly what you are already doing right?

        HSV1 may have a link to some of our symptoms, take a look at essential oils as they do pass through the blood brain barrier and I’ve read that they can kill a virus. Valtrex is not effective because it cannot kill a virus only try to slow down the replication process, this way you have to take valtrex for the rest of your life, a perfect money making scheme.

        I think all of your questions above are valid, but I don’t see how they will lead us to a cure, because I think that they are the result of the condition not necessarily the cause.
        If you haven’t already done this I highly recommend watching Noel Batten’s video’s and reading everything he has on his website. He explains what happens in our lives before these conditions appear. The stress, the emotional loss , the physical causes, ex: bad postural positions, or accidents, trauma etc.
        He leads people into recovery by fixing their structures, this is where the cure lies. We have to realign our skeletons, so that the nervous system can function perfectly again. This is the “cure”. As far as I know, nothing in a pill or bottle can realign our bones.

        A virus or a bacteria I believe sometimes can cause a torticollis. The South American guy that was cured with Ganoderma is an example of this. I read that Ganoderma is effective against the HSV1. It is worth a try!

      • Lee-Ann, this is a Long One indeed! You may not be the most frequently commenting visitor on this blog, but you definitely beat us all when it comes to number of words per post! Perhaps you could start using the acronym LLA (Long Lee-Ann) ;-)

        I appreciate your efforts and you are welcome to pursue them via this blog, but I won’t be participating because I don’t see the point.

        As far as I understand, you are really trying to find a mechanical and/or chemical cause for CD, so that a mechanical/chemical cure can be designed. That is what allopathic medicine usually does. But that is a very limited perspective, which completely ignores the always active LOA. It simply doesn’t take into account any holistic aspects behind the patient who has the problem. I designed this blog to make the following mechanism plausible.

        (Childhood) trauma => leading to more accumulating trauma => leading to coping through rigid control (INTJ) => until system breakdown = CD

        So far, almost all visitors of this blog have confirmed this general idea. So the real commonality is: trauma + personality type.

        Some remarks regarding your list.

        - HSV1 is very common indeed. So it makes sense that many people with CD have it as well. Yes, outbreaks occur in times of stress. But that doesn’t mean it is intertwined with CD, because almost ALL disease can be linked to stress! As far as I am concerned, we who have CD are vulnerable and more likely to get some other ailments as well. HSV1 might be one of the obvious candidates. Once we fight the HSV1 symptoms, it will make us feel stronger and do some good for the CD as well. But HSV1 isn’t the cause of CD. Otherwise this line of research wouldn’t have died a long time ago…

        - So far, all the people who took the MBTI test, were INTJ. (Weren’t you the first one to bring this thing up?) Several people sent me an email to confirm that, instead of posting it on the blog. So far, not a single person who took the test was something else than INTJ! Yes, INTJ are likely to visit online forums. And I think that INTJs are also likely to develop CD if they have childhood trauma.

        - As for all the mechanical/physical commonalities, these are all linked to the collapse of the spinal structure. So they are all telling us the same thing: we are thoroughly out of balance and literally cannot take it anymore.

        - Our breathing problems and anxieties are symptoms due to trauma. This is a well-known phenomenon.

        Enough said. (Otherwise I might produce another gigantic post here.) Since you are actively working with the LOA, I would like to encourage you to think some more about what that means for upward causality and hence for the way illness comes about and can be cured …

    • Hi there

      We had a great Feldenkrais class on Friday. I only managed to video her demonstrating the exercises – will try get audio on the rest of the class next time. I’m battling to upload it to utube, but will let you know when up.

      I sign up to Newsmax health newsletters and this came in this morning http://www.newsmaxhealth.com/Headline/Dick-Van-Dyke-mystery-illness-dental-implants-titanium/2013/06/03/id/507736?s=al&promo_code=13B2F-1

      This led me to articles by a holistic dentist on the effect of titanium implants http://www.drlinagarcia.com/articles.php. Of particular note in this article http://www.drlinagarcia.com/view_articles.php,t=30 she says ” In my clinical experience, however, women seem to be more affected than men. ”

      Another very interesting article on root canals http://www.drlinagarcia.com/files/2/WhatYouNeedToKnowAboutRootCanals.pdf
      which describes how “a root canal tooth is always infected regardless of it’s appearance and symptoms” and (on page 6) that a large number of patients may become ill straight after root canal, but others with stronger immune system may remain in perfect health for years. However when these individuals suffered a severe accident, had serious flu or were placed under great stress their immune system became so compromised that they proceeded to develop a degenerative disease.

      It has significance for me as I have 2 root canals (think both on right side) and an, I suspect infected, implant on right lower jaw (my head turns to left) and 3 mercury fillings.

      • Wow LeeAnn,
        I guess now you have to think about more dental work to remove it all.
        In the mean time Essential oils would be great for you in dealing with low grade bacterial infections from root canals.

    • Hi Everyone

      Google Burt Goldman. This guy is amazing!! Listen to one of his videos on what he does and then do this
      http://www.youtube.com/watch?v=olOEKtNU_HQ
      I’ve done it 3 times and can’t believe how deep into meditation I went. It has definitely brought me relief. He has been in spiritual field for 50 years and has so many incredibly useful tips of how to release fear, stress..everything.

      • Thanks LeeAnn,
        I’ll check it out!
        I have a meditative practice which is 2.5 hours a day. Sometimes I do less. But I always notice improvements when I get up from the practice if I have successful meditation, like, when I can keep the focus and get into that “meditative zone” not allowing the monkey mind to kick in.
        And the improvements stay!

      • Hi Lee-Ann,
        Thanks for this great find! Burt Goldman is also into transcendental consciousness, using quantum principles. I downloaded some of his materials and am enjoying it so far. Thanks again! By the way, I have just written a new post, quite in line with what Goldman propagates.
        CCD

        • Glad you’ve found him interesting, CCD. I’ll look for your post. I finally bought Burt’s program through Mindvalley. Something else that’s very interesting is Christie Marie Sheldon.
          http://www.youtube.com/watch?v=GiIo9w8qEVA&feature=player_embedded

          Particularly interesting because lately I’ve been coming across info on vibration (through “Silent Furnace”‘s free video and “Proof of Heaven” book – a neurologists experience of spiritual life while in a coma). It seems to all come down to vibration/frequency. The way to improve areas in your life is to increase your vibration, which Christie Marie Sheldon focuses on. Very interesting…! Watch her video above – she does a meditation towards the end, which seemed to clear some of my ‘stuff’.

          • Hi LLA, fortunately there are so many people propagating this message these days. I also like: Gregg Braden, Jude Currivan, Peter Russell, Amit Goswami, Bashar (Darryl Anka). Especially the latter is a great source of inspiration to me. Google them and/or find their videos on Youtube. I had not yet heard of Christie Marie Sheldon but I will check her out!
            Yes, vibration is an essential quality. Everything and anything vibrates at certain frequencies. Changing our frequencies, resonating with more wanted vibrations, will change our experiences.

      • Someone else has captured it perfectly

        ” I am both a physician and a spiritual practitioner. As a physician I specialize in integral psychiatry and work with people in a holistic fashion (physical, mental, emotional, and spiritual) to get to true cause in the matter of their suffering. In over 15 years of practice I have not found a guide that helped myself or my patients to such an extent… to face themselves and their own undigested emotional experiences from the past.

        In contrast, I have read many of Eckhart Tolle’s books; but like Krishnamurti, Tolle’s work is more a description of a level of consciousness and less a set of specific and ongoing instructions that lead you there in a relatively ego-proof manner. (The instructions “Listen to silence. Observe your thoughts. Be in nature. Be aware of your breath as often as you are able” are insufficient in the face of our unconscious emotional discomfort and the ego’s desire to avoid real change.)

        The Presence Process is a simple, direct, how-to manual to finish your emotional past so that you can stop reacting to it; stay in this glorious and eternal present moment; and respond to life. It is a very powerful tool and the most rapid and effective tool I have found to empower you to heal your inner emotional discomfort. It is that inner emotional discomfort that drives addictions and illnesses (physical, mental, and emotional) AND that keeps us from being here now for any significant length of time. You can acknowledge the power of now and say “yes to what is; however, the unconscious pain of the past keeps drawing us away from the present moment through constantly asking, “What happened?” because it was so painful and, “How do I keep it from happening again?” This drives our unconscious needs and wants which ever drive us from this moment. “This isn’t it” is the way of being we are stuck with until we face, embrace, digest, and integrate the emotional past.

        Simple and difficult. Challenging and exciting. Not for everyone. But if it is for you and you do it… you will be astounded.

        Highly lucid. Highly effective. Highly recommended. “

        • Thanks for this recommendation Lee-Ann, I’ve put it on hold at the library. There are so many resources out there on letting go of emotional issues or programming, and I think different approaches work for different people. I’m intrigued by this one because of the review.

          I mentioned elsewhere on the site that I’m reading a book now called “Breaking the habit of being yourself,” by Joe Dispenza, which I’m finding is a very practical and clear approach for me. His approach is based on quantum physics, neuroscience and genetics, but it’s really all the same thing. One concept relevant for us is that while we may have a genetic predisposition for something like CD, it’s not a sentence, since gene expression depends largely on the environment, and the environment includes our own thoughts, beliefs, and feelings towards ourselves! So while a gene may be turned on by years of one state of being (anxious, controlling, etc.), that can change when our state of being changes, and the “environment” changes.

          • I totally agree with your observations regarding the malleability of genes. Even stronger: our “environment” simply is the reflection of our inner being. It does not include our thoughts, beliefs and feelings, but it is created by them. Our genetic expression does not depend on our environment (that still is the old-fashioned materialist, upward-causation view), but it depends on our consciousness, which also causes our environment…

          • Thanks, Leigh. I’ll look out for Joe Dispenza’s book.

            I cannot recommend “The Presence Process” highly enough. Just order/buy it and read the first few pages and you’ll see what I mean. I took 2 weeks to read it and am in my first week of the process. Slowly over the last 3 weeks I have felt significant improvements. This really is IT. I cancelled all my “heath” email subscriptions and stopped my search after starting to read the book. This is the absolute fundamental – not putting a plaster on the problem. The author has an incurable neurological condition and has healed through this.

        • Funny, I was just reading another book this morning by an author I really admire, who also recommended that book, so that’s two clear signs, enough for me! Lee-Ann, I’m so glad that this approach is helping you, I hope you’ll tell us more about it as time goes on.

          • Great, Leigh. It’s definitely right for me and I hope it’s for you too. I’ll let you know how I go.

        • LeeAnn,
          I went to Amazon to read some reviews on the presence process and found this one, I was wondering what you think of what this person said:

          “Note: this is NOT a book on technique. You’re not going to learn tricks to put emotional charge “aside.” This is really about being more alert to charge when it surfaces, and being able to discharge such distractions completely so the energy doesn’t have to be contained. And you get to feel truly connected to more people, and yourself, and even experience “unconditional love.”
          For something more technique-oriented, and less deep, try David Rock’s “Quiet Leadership”

          • Hi Sunflower

            I’ve been through all the tricks and gimmicks etc and although some of them worked they never dealt with the *core issue*. No more tricks etc for me – the way I feel right now this is all I need. This deals with the fundamentals – our emotions and reactions are based on our emotional imprinting up to the age of around 7. All our reactions since then are based on this. All the situations that we encounter are a reflection of this and unless we integrate these situations/reflections will keep occurring. By a simple method it teaches you how to integrate the emotions so that they don’t keep repeating – less negative situations will arise as you integrate. It’s a lifelong process, but I felt the effects very quickly.

        • Hi LeeAnn,
          Thanks for the reply. I am so glad you have found the right method for yourself. I actually went on You tube and saw a lot of Michael Brown’s videos and I’ve been to the website and have read some of his articles as well, I am impressed!
          It sounds good to me as well, maybe what I am looking for. I’m trying to get the book from a library, and give it a try.
          Also he says that the Transformational Breathwork sessions will really help with the TPP.
          Good luck with it, and thank you, it’s a great find!

    • Hi Everyone

      I just wanted to let you know that I am having huge success with Transcendental Meditation. I did a course last week. I felt the effects immediately after the first meditation I did (calm, clear head, very peaceful) and on Friday and today my head has not been turning. I usually can feel a slight undercurrent “CD vibration” in my system, but cannot feel it anymore. It has been proven to calm down your nervous system and clear out stresses (past and current). A huge amount of research that has been done on the effects. Google it/watch some of the videos on utube and look at the official TM website for info. Even if it does’t cure your CD it will definitely help you in your life.

      • Hi Lee-Ann,

        Nice to hear from you again. And with such a short comment ;-)

        TM sounds very good; I am sure it should help. Did you do TM with mantras? Can you give some details on the particular technique(s) you learned?

        And what about the presence process? Still ongoing?

        Have a nice weekend!

        CCD

        • Hi CCD

          TM needs to be taught by a qualified TM teacher and there is only one standard process that is followed. It does not have any religious connotations contrary to what some people may think, although it is an ancient form of meditation that comes from India. The dramatic effects have been proven by quantum physicists and neurologists. It does involve a mantra, however the mantra is merely there because of the effect of the vibration of the mantra on the nervous system. No hocus pocus, spiritual meaning etc. If you have access to a TM teacher, go and have a free session to see all the research results. You can then decide if you want to do it. I was completely sold when I saw it – and all the effects they mentioned happened after my first meditation. The fact that my head stopped turning was completely unexpected. It is the most incredible thing I have experienced and I have this for life (you meditate twice a day for 20mins)! When we undergo stress, the nerve fibres (might not be correct jargon) get tangled. This untangles them so that they become normal again. Basically all that old stress leaves your body. My body and mind feel completely free and I am back to my old self again. Seriously, give it a go.

          I haven’t gone through this but this may help give you some facts.
          http://www.tm.org/research-on-meditation and more by David Lynch http://www.davidlynchfoundation.org/scientific-evidence-that-the-program-works.html.

          • HI Lee-Ann,

            Wow. So you don’t feel any symptoms anymore? It feels like being completely cured? That is marvellous!

            Unfortunately, TM is very expensive. But in your case it seems to be completely worth it! I have not been able to find similar stories online from people with dystonia. So perhaps you struck something here.

            By the way, I very much doubt that the effects of TM have been proven by quantum physicists (being one myself). I do know that quantum physicist John Hagelin makes associations between quantum effects and the state induced by TM, and he might very well be right. But he merely gives commonalities (like I do in my latest post Remission Revisited), no proof.

            I am still curious to know what happened with your recent enthousiasm for the presence process. Did you drop it in favor of TM?

            Keep us posted!

            CCD

          • Sorry I forgot to reply re The Presence Process. I did it for 2 weeks and then had people to stay and that went out the window. I’m definitely going to get back to it again after a month of TM. I first want to make sure that my neck stays this way for a month before I try something else. Have you got the book?

            You may be right re the proof. I may not have worded my explanation correctly. I should just have said that extensive research has been carried out.

            It’s very reasonable over here – about 200USD. Besides stopping my head turning, the other major effect I’m experiencing is that I used to feel overwhelmed by the smallest things. Since then nothing is an effort – I’m doing things that I don’t enjoy but have to be done automatically with no resistance. That is one of the many positive effects they mention. Maybe it’s time for a TM holiday in Mauritius??

          • Ah, is that an invitation? ;-) Sounds good. The official TM course costs over USD 1300 here!

            It is tempting to come to Mauritius, indeed. But I might first try a DIY, as described here:
            http://www.bahaistudies.net/asma/tm_mantras.pdf
            Or a resembling alternative, described here:
            http://www.brainyogatm.com/BrainYogaTM.pdf
            Do you think those are worth a try?

            Anyway, great that you are doing so well! So it feels like being cured? No CD anymore? Please reconfirm.

            Yes, I got The Presence Process and it does look interesting. Haven’t had the time yet to look into it more deeply…

          • Of course! If you visit you will have a place to stay :) It gets even cheaper!

            My TM practitioner advised that one must go to a qualified TM practitioner, however if it’s too expensive then the first link might be a good alternative. It looks pretty comprehensive and along the lines of the process I went through. I don’t know…read it thoroughly and then maybe give it a try. The process was very thorough and repetitive. It’s important to have 30secs of resting time (eyes closed) before starting and then 2 minutes after the 20 mins with eyes closed resting (not repeating mantra). Let me know how it goes if you do. Apparently it works no matter what and I don’t think it matters if you believe or not either, but I would advise being open and not sceptical just in case…

            I haven’t spoken long enough to anyone today to notice, but it’s not turning that I can notice on my own and I still don’t feel it in my body.

            Good to hear you got the presence process. You will be blown away when you read it.

          • I will keep that in mind, thanks a lot!

            Yes, it makes sense that your TM practitioner told you that. I would do the same in his/her place ;-) But you can judge if TM really can’t be learned from a guide…

            Keep it up and I will keep you informed!

            CCD

          • Hi CCD and Lee-Ann, I’ve been following your conversation about the TM. Thanks for bringing this up Lee-Ann – I’ve been reading about it and seeing how it compares to the types of meditation that I do already. I can see some possible benefits to this approach, which isn’t really a mindfulness technique or a focusing technique, but a way of relaxing the mind effortlessly. I’m trying to bring in some of these techniques into my daily meditation and do find it helpful. I’m finding that thoughts tend to “dissolve” on their own more with this approach.

            Lee-Ann, it’s so great to hear that you’re doing so well, clearly you’ve come a long way and you sound really happy. I really appreciate you sharing your progress.

            I’m also having some good results with various things I’m doing, and hope to share more about it soon. Lots of good stuff happening on this website!

            Leigh

          • Nice to know you’re always there in the background, Leigh! Tell us more when you are ready! CCD

          • Hi Leigh

            Good to hear from you and that you are also trying a few things. Let us know how it goes. By the way, they advised that this form of meditation shouldn’t be combined with other meditation (i.e. don’t do two types of med in one session). Re thoughts, with TM you allow them to come & go – don’t try to eliminate them or blank your mind. No forcing anything – everything that occurs is completely natural.

            So, my update is that I had lunch with 3 friends last week. I sat opposite two friends who I have confided the most in. I was so disappointed to see that my head did turn. So, it is still in my system. However, the turn was very slight and I didn’t have to touch my chin to get it to turn back. I was relaxed but I did feel like they were watching for it. Last night we had drinks with my husbands old school friends who didn’t know anything about my condition and it didn’t turn once. So, it’s still in my system, however I’d say only 5% there and the constant vibration I used to feel has gone 100%.

            With the TM it feels like a cloud has lifted and I ‘m back to my old self. I am so much more open, no resistance, happy, chatty and not scared to say anything in a group of people. I’m back to my old self – my memory has improved hugely too. This is what this form of meditation does. I don’t care if CD is still in my system – I now have the tools to cope with it. I have book club on Wednesday so I’ll see how I go, but so far NO FEAR!! I’m away for a few days so may not reply to any replies til I get back.

    • Hi

      Just thought I’d update you on 2 interesting things I’ve come across.

      According to my Feldenkrais practitioner, the natural movement of the eyes should always follow the movement of the head. So if head turns to the left, the eyes should look to the left. If the eyes move in the opposite direction then this is in resistance to the natural movement and can strain the muscles. I guess resistance is good sometimes, but not constantly. This was a hallelujah moment for me as I used to suffer terribly from eye strain especially when trying to keep looking at someone when my head was turning. I was constantly massaging the muscles to the side of my eyes. Just wanted to let you know in case you’re having eye problems – try to allow your eyes to follow the movement sometimes to stop the resistance. I started taking vitamins for eyes and since doing my TM course I haven’t had a problem with my eyes. When my head does turn very slightly I try to allow my eyes to follow.

      This interview with Anita Moorjani is also incredibly inspiring. I read about her about a year ago. Yesterday I looked up her site and what she says resonates so much more with me now http://anitamoorjani.com/nderf-interviews/

      This is also very interesting and seems to back up what Anita talks about http://www.ted.com/talks/jill_bolte_taylor_s_powerful_stroke_of_insight.html

      • Following on from the link I posted on Jill Bolte Taylor (brain scientist who had a stroke which temporarily shut off left side of her brain), these 12 video interviews with her and Oprah are mind blowing http://www.youtube.com/watch?v=k9Phy9C5Ees. I found videos 9 and 10 particularly interesting. Well worth watching if you have time.

        • Hi LA, Your link only goes to one long interview, i.e., I do not see the 12 separate interviews? Nevertheless, interesting story! CCD

          • CCD, the other videos should come up within utube when you have the first one I sent a link to playing, however I’ve just checked and they don’t for me. Strange. I think the link I sent you is for the whole interview whereas the ones I watched were broken down into 12 parts.

          • Right, I thought something like that. Well, I can’t listen to that overexcited woman for too long, but the message is clear. When shutting down part(s) of the brain, perception of reality changes, e.g., losing the idea of separateness and feeling one with all that is. To me that is not so mind blowing, to be honest. We all have the capability to feel that, if we allow ourselves to feel it (and then the brain will harmonize with that decision by activating certain areas that correspond in terms of functionality).

      • Hi Lee-Ann,

        That is interesting indeed. But of course I am convinced that the real cause is not of mechanical nature, as she claims. However, her belief and determination did the trick, and fueled the collective consciousness so that it helps others as well…

        No TM for the time being. I have read the Presence Process and will start that first, sometime soon.

        How about you? Any news? Still recovered?

        CCD

    • Hi there

      This is very interesting. I need to read to in more depth. The points about elevated calcium and toxic metals (copper in my case) are noteworthy for me. I had a hair mineral analysis done about 1.5/2 years ago and my calcium and copper levels were extremely elevated. I definitely didn’t get enough vitamin D living having lived in the UK for 10 years and my sleep used to very often be disturbed at night – waking up feeling starved of oxygen.

      http://articles.mercola.com/sites/articles/archive/2014/05/08/heavy-metals-glyphosate-health-effects.aspx?e_cid=20140508Z3_DNL_art_1&utm_source=dnl&utm_medium=email&utm_content=art1&utm_campaign=20140508Z3&et_cid=DM44269&et_rid=513508229

      • Anybody know a nifty way to escort heavy metals out of the brain? I know Bentonite and IP6 are good in general. But, I am trying to avoid iron, too. I have one friend with Parkinson’s who just submitted to a very expensive battery of electromagnet field therapy. He hasn’t seen much change in his symptoms at all. I hope he hasn’t wasted his $. I have not been a big believer in magnets for anything except holding pictures up on the fridge ;-)

        • Hi Maureen,
          Removing heavy metals from the brain is tricky business, can be dangerous, and so much controversy on the topic.
          Be careful, you may need professional help.
          I personally am leaving it up to emotional healing to escort the heavy metals out of the body :)

          • I wonder if the best way to remove heavy metals in general is to fix a sleep disorder which would enable the body to cleanse itself more efficiently? Fixing my sleep disorder has been a part-time job for me for the last 20 years! Anybody have good suggestions about that?

        • Hi Maureen,
          I’m sure not sleeping properly is part of the picture.
          From personal experience, medical marijuana just before sleep is very very effective. Only use the Indica plant (relaxing), not the sativa which is mentally stimulating.

          Also I’m posting a link to a breathing device that may help you relearn how to breath and then sleep better.
          http://www.breathslim.com/

          I would also suggest for your friend with Parkinson’s to read and watch video’s at http://www.noelbatten.com/
          Noel batten has helped many parkinson’s patients into recovery. He explains the why and how it happens, and he also places great emphasis on emotional healing as the most important aspect of healing this condition.

        • Hi there

          I started yoga with a new Himalayan yoga instructor two weeks ago. This is on a par with TM and Reiki as to how quickly it takes effect. I am now able to do an entire spinning class breathing in and out through my nose. Before, I used to gasp for air through my mouth and hyperventilate – I could barely take one breath through my nose. My posture is improving dramatically – effortless standing taller, shoulders back and down and super calm feeling afterwards. The instructor keeps on reminding us on how amazing yoga is for your glands. I didn’t think about it but finally put two and two together when I read the article that the yoga must be helping my thyroid (underactive) and also pineal.

          I googled yoga and the pineal gland and came across a very interesting article on how to cleanse the pineal gland. To read the article you need to go to
          facebook com/jananivivek (you need to be logged into FB) then click on the link “Here it is! step by step procedure to cleanse & activate….”

          Might be of interest…

          • LeeAnn,
            What a coincidence, I have been seeing so many articles on cleansing the pineal gland lately, but since you have also brought it up, it must mean I should read about it! :)
            Great to hear you have had great results with hatha yoga already. You can breath through your nose now while spinning!!
            Yesterday I went on a great bike ride, with a lot of steep hills, and I was also able to keep my mouth shut and breath through my nose the whole time, I believe this gives us a lot more stamina. The steep hills were easy for me!

            Thanks and take care!

          • Great to hear, Sunflower. Interesting that you’ve also seen info on the pineal gland. We seem to be on the same mission! Let us know if you find anything else interesting…

            Take care

    • Hi Everyone

      A book called “The healing codes” by Dr Alex Loyd was recommended to me today. Google it and watch some utube videos on it. It sounds *amazing* and seems to have worked for thousands of people curing cancer, depression etc. Also, look at the Amazon reviews for testimonials. I haven’t read it yet but am going to find a utube demo and do my first 6 minutes tonight. Why wait…? If you’ve read it and it hasn’t worked for you, please don’t say anything. It might put someone (i.e. me!!) off it.

    • Interesting stuff. So this is about acyclovir as well! So that Mexican guy wasn’t an isolated case after all. The strange thing is that this report/patent is really old. Since then, not much is done with it, although I did find two or three other stories about CD/STers who found alleviation from this drug. I’ll look into this some more.

  2. The Rebirthing technique is very interesting. Great find!
    Wish I could understand french to read more into the woman’s story.

    Thinking about using oregano oil to see if i can kill a possible virus. Although I think the what ever antiviral you use it would have to pass through the blood/brain barrier.
    Natural antivirals are safer and more effective than the drugs.

    • Alright, I just quickly translated her two posts for you. It’s not perfect, but you’ll understand. =>

      Hello lady bird,

      I also suffer from spasmodic torticollis for 32 years. After it having been an insurmountable problem, I live without too much difficulty with ups and downs.
      Initially I was treated in the neurological department of the St. Anne hostpital in Paris, with injections of botulinum toxin. After initial signs of effectivity, the treatment appeared not to be working. Physiotherapy sessions and physiotherapy exercises at home were more effective.
      Then I was asked to do a session of deep-relaxation Rebirth. By the end of the course I was much better and especially in the three months that followed, the assiduous practice of deep relaxation and also the application of positive thinking removed 95% of my torticollis. I had a few spasms per day, fully controllable without fatigue, and totally invisible to others.
      It lasted 10 years, after which I had a relapse. After a new stage of relaxation the problem had been settled for another ten years. And again four years ago it came back, but it is very tolerable and when I’m not going very well I force myself back to some relaxation sessions and the problem becomes quite manageable. People who do not know me well do not know that I am a victim of this disease.
      I said that before the relaxation I turned my head every second or so, I had spasms that caused a rotation of the entire upper body. I could no longer drive and was almost about to stop working because it was socially impossible.
      I think there is great hope in relaxation techniques. From what I understand, deep relaxation allows the secretion of endorphins, which appease the problem considerably. One can find relaxation CDs in good bio shops or esoteric bookshops. I personally use CDs of Yoga Nidra by Micheline Flak.
      Good luck, you see you can get by, even if we have to remain vigilant and take care of yourself.
      Greetings

      PS: I no longer take any medication, valium or other for 25 years.

      ====================================================================

      I took a little long to reply again to Lady Bird because I was not sure what to add to what I had said the first time.
      I think there is a way of healing through physiotherapy and relaxation.
      When I was treated at St. Anne’s neurology department, there was a physiotherapy service led by Jean Pierre Bleton. He was very friendly and the physio sessions made ​​me better than injections of botulinum toxins, which I quickly abandoned. Jean Pierre Bleton has written several books on dystonia, including “spasmodic torticollis”, a work of a hundred pages, very interesting and also “the writer’s cramp” or another book on Parkinson’s disease.
      But in my case it’s the relaxation that helped me the most and allowed me to continue my business for thirty years of business consulting and teaching; activities, however, that are quite stressful.
      Paradoxically, now that I’m retired, I am again a little more bothered by a stiff neck, although this is very bearable. I promised myself to be more serious about relaxation, but as many pensioners I am overwhelmed by my various activities.
      To practice relaxation one can use relaxation CDs or watch relaxologists, or sophrologists of yoga teachers.
      I can recommend you the CD of Micheline Flak, yoga teacher, specialist in Yoga Nidra – the relaxation yoga. (http://www.satyanandashram.asso.fr)
      There are also CDs with annie Marquier, edition of Gondor (www.idp.qc.ca) or those of Dana Gibon (Dana@mascaret.com).
      I send you my greetings and my wishes for healing. That this year 2009 allows you to find the solution to your worries.

    • Interesting interview indeed, although it seems to me they overdo it a little. But who knows, maybe this really is a great find?

    • Are you suggesting that you feel you aren’t breathing enough? Personally, I breathe very, very little, and very slowly…

      • My breathing is too shallow, not deep enough. I am training myself to breath deeper belly breaths, instead of shallow lung breathing.

        • Wow, you too…

          “Breath is intimately connected to the flow of energy coursing through our bodies; reduced, shallow breathing leads to reduced emotional experience, which leads to low energy in our body, which often leads to not feeling powerful or safe. Difficulties in our respiratory system indicate emotional fatigue caused by large amounts of emotion stuffed inside us. Outwardly we may be dealing with distressing events, such as tragedies, domination, heavy expectations or violent punishments. Inwardly we may feel like we are drowning or suffocating in sadness, anger or fear. It is as if we have a difficult time dealing with air, because we have “no room to breathe” emotionally.”

          • hello sunflowersprout and CCD,

            That is really very very interessting. I always had a great problem with breathing. When I was 14 I was an athletic champ in 100 m and jump (distance and high). But it was never ever possible for me to run a long way (I was just good in aerobic condition, anaerobic condition was always a desaster to me) My trainer tried again and again to make me breath correctly but with no result. And my breathe problem still exists. I breathe slowely and sometimes noisely, sometimes I hear myself breathing, even often in relax situation (at work, after a consultation I tell people to sit down and I write down my notes; and then I often hear me breathing, then I think “when I can hear me, they can hear me too” and then I nearly stop breathing. The problem was always present so I was never really thinking about it, when we not breath correctly we also change the pH value (sagt man das so?) of our body.
            It would be interesting to know if others of us also have problems with breathing.

            enjoye a nice sunday (in Luxemburg we have sunshine today)

          • Things that make you go “Mmm” indeed! But is your breathing also shallow, minimized? I guess that’s my problem, as well as sunflowersprout’s and Carrie’s.
            Shallow breathing lowers the pH level of your body, making the blood more acid. Like acidic food and negative emotions and stress…
            Today I ate pork for the first time in a year, because Dr. Lee said I could do it, occasionally. And this evening I ate beef, by accident, because I didn’t understand a thing of the menu of the restaurant of my choice. It was delicious, but I can now feel that my body isn’t used to meat anymore. Hope I won’t regret it tonight!

          • mmmm……..makes a lot of sense. Although i always had lot’s of energy.
            If you watch a baby breathe they naturally breathe with their belly’s. This is the way we start out life, then gradually everyone looses this innate ability, particularly if there is any level of child abuse, we start shallow breathing.
            Amelia maybe you have environmental sensitivities?
            Does Luxemburg have a lot of air polution?
            I am glad you have a sunny day to enjoy. I live in the SW, US, it is unusual not to have a sunny day.

          • I have trouble with proper breathing also, at times I have felt near panic about it. I think this is in part due to the position of the head/neck restricting proper air intake, but I do agee must also be an emotinal reaction, like a vicious cycle, one of many that occurs with this disease. I practice diaphragm breathing 15 min each day lying on the floor with a rolled up towl under my neck. I have not seen a lot of benefit from this yet, but will keep on.

          • Thanks for your feedback. It seems we all have issues with breathing. I am curious wether your exercises will help you. I guess the most effective way would be to deal with the emotional congestions so that you get new room to breathe. I have the feeling that my breathing is somewhat improving, now that I am addressing these emotional blockages.

    • It *must* have something to do with breathing. Too much of a coincidence that so many of us have this problem. I have breathed too shallowly all my life. When I get stressed, am hungover or while I’m eating I feel starved of oxygen and find I can’t get a deep breath. Sometimes in the middle of the night I have to get on my hands & knees, let my stomach relax and only then can I get a deep breath. It’s got to have something to do with this! I’m also quite an anxious person (people may not really notice, but it’s definitely a major personality characteristic) – think this also has something to do with it.

      I think we need to set up a spreadsheet with questions so we can do our own research and find commonalities like the breathing.

      • With reference to my post below, I seriously think we need to do a spreadsheet in which a number of us can volunteer to take part.
        I.e.
        - Weight: you have a weight imbalance on one side. Those that take part could get their weight balance checked and we could report back. Maybe a weight balance over a certain amount has an effect?

        - Breathing difficulties since CD or all your life?
        - Mercury fillings – how many?
        - Any teeth missing? I have 2 teeth (!) missing at the back of the left side of my mouth (one recently and the other from about 15 years ago), which is the side my neck turns to
        - How do you suspect it happened? I had a traumatic bicycle accident (fractured left shoulder) and my neck started to turn 2 months after this. To me it’s obvious that mine is linked to the accident. I.e. do you think that a trauma caused it?
        - Have you always been an unusually anxious person?
        - Jaw bite – I have an underbite (think that’s what it is) where my lower jaw is slightly further back than normal. Does anyone else have this?
        - Is one side of your body bigger than the other? My left side is quite a bit bigger. I know everyone has this, but maybe it’s more pronounced in CD’ers.
        - does any exercise make it worse? Walking screws me – probably because of my imbalance. If walking makes it worse then could the imbalance itself have something to do with it?
        - Does it get worse in social situations? Is it worse when you’re with people you’ve told you have CD or better?

        So many times I get an idea in my head and I want to know if any other CD’ers have the same thing.

        Not everyone has access to the treatments you mentioned above. Each of us could opt to try a treatment, monitor it and report back.

        I think we need to be systematic, work by process of elimination and carefully monitor whatever we try. Yes, the researchers have gone through all this, but there’s no harm in seeing what correlations we can come up with. I, like, you am so detemined to beat this. In the back of my head I *know* I will. I am stronger than this – this is not me. I refuse to treat it with Botox or anything toxic or unnatural. I truly believe that we have all the tools to heal ourselves. It has got to be something within our capability. You have the website and all the followers. I would be happy to set up the spreadsheet and we can ask fellow sufferers to submit topics/questions. Maybe when you get back??

        Let’s gather together and BEAT THIS!!

        • I think that after reading the sections Phenomena and Perspectives, you got most of the answers to these questions? Let me know if that’s not the case.
          Good that you are persistent! An important quality that you need in order to heal.
          CD isn’t you, but it is part of you. Don’t try to deny it or fight it in a kind of head-on situation: that will only make it worse. Understand where CD comes from, acknowledge that it stems from a defense mechanism to protect you, and then devote a lot of time, care and love to heal yourself. ;- The actual treatment you select isn’t the most important thing; I’m convinced of that. There are many ways to heal. Look for the way that suits you best, and feels best!

          • You’re right, CCD. I just get worried that if I ‘accept’ it then it may get worse, but I do hear what you’re saying. What you said in Phenomena and Perspectives was quite a revelation to me and definitely rings bells and makes sense.

          • Sorry for the very late reply! Due to my holiday…
            I completely understand what you say about accepting it. Well, there is a difference between accepting a symptom and letting it do its thing. I cannot recommend the latter. I do try to keep my head straight, but I also try to accept the symptoms as a message from my body to me, telling me something important. And I try to gently ask the symptoms to make place for new patterns…

        • Hello Lee-Ann
          I try to answer to some of your questions
          1) problems with breathing, yes even before CD, as you I also wake up some times in the night because I have the feeling I suffocate , I stand up with arms in the air and try to breath slowly and deeply
          2) teeth lost, yes I hadn’t enough place for all off them, so they took 2 out and I got I teeth bracket for a year (all of that not long before cd started
          3) mercury filling, I guess like the most of people
          4) social anxious, yes what makes me angry about myself, for exampel I go to a parent forum, and I am anxious, I know that a) my IQ is higher then at least 95% of them b) my social back ground is good c) I have a doctor title and a good job d) I am not uglier than most of them. but I am there like a little frightened mouse (but curiously at the work, on the phone… I am not shy or anxious at all.
          5) walking makes pulling stronger
          6) if somebody is speaking to me about cd, for exampel “oh your neck looks better today” bing, that never misses
          7) cd started the first day of pregnancy

          hmmmm I think that’s all (for my weight balance I can check with my son’s Wii balance fit , perhaps that could be a good thing for all of us, because there you learn how to balance your body; never thought about it)
          If you have some more questions, don’t hesitate.
          greetings, have a nice day

          • Hi Amelia

            Amazing, you seem to have exactly the same physical problems as me. I understand many people may think they have breathing problems, but ours seems to be unusually bad. I don’t know anyone else who wakes in the middle of the night feeling like they’re suffocating.

            What side are your teeth missing on? Are they missing on the side your head turns towards or the other side? My teeth are missing on the side my head turns towards. I also definitely feel like my jaw is involved (either part of the cause or an effect). Just wondering, is your lower jaw set back a bit? I also think my eye movement is too connected to my jaw. When I look left or right my jaw moves slightly at the same time. Maybe that’s normal though.

            Socially anxious…it’s too terrible and I really empathise with you. I had to give up networking as I couldn’t handle the 1 minute talks we had to do. Now I’m facing terrible anxiety at my book club just having to talk about the books I’ve read! I am fine one on one, but if there is more than one person and I have to talk publically with people watching my mind just goes blank and I feel like I’m going to choke. It only really happens in those organised social situations (like regular book club/networking meetings), not so much when meeting with friends etc. It’s the *regular* event that I stress about. I’m sure that people probably don’t even notice. I just wonder why no one else seems to have this problem. All the other 13 people in my book clib can talk completely naturally when talking about their books. They can talk and *think* at the same time!!

            Check your sons WII balance. It would be interesting to know which side relates to the side you turn towards.

            Take care
            Lee-Ann

          • The social anxiety is very common among us! I also suffered from it (and had to overcome it many times). It’s linked to the childhood trauma. We are afraid to show others who we are, because we deny to ourselves who we are. We rigidly control our lives, afraid that we have to face ourselves and the hurt inside us. The social events function like a mirror, so these scare the hell out of us…

        • hi lee-ann,

          if you like add me on skype myfight_on_skype and I would tell you my answers more personal and detailed.

          spoke with many cd patients and all of them agreed cd occured when the whole system became an overload. as mentioned body and mind are one system. you need to make both side of the body same equal and refreshing mind card by re-programming brain.

          i have seen and spoke to recovered people but it is a long hard way, as mentioned healing means changing destiny and change the way you move physically and mentally. if you check yourself you will find out that you are not standing in the middle of your body (a little bit more on the left or right, on the front or the back of your foot and so on) recovery is possible) another example remember if you were sitting straight or the most on one body half..

          it only goes about the middle, brain has to find the middle new and the spasm will go down step by step. i have seen it with my own eyes and felt so much progress within program of only two month.

          healing is possible, defenitely. but hard, long and individual.

          stay strong, cheers from germany

          • let me add some more.

            found out that all the cd´s are searching for something (most time ourself) it´s so hard finding out loosing harmony of own but that´s a key and there is a way back. no one would underwrite that something is wrong inside (but it is), the people better go searching for reasons that this or that is the reason. it´s inside and individual. “just” my opinion..;-)

          • I like how you said, “healing means changing destiny and change the way you move physically and mentally.” I think the mental part is harder to change. I agree that working on the weight is effective to correct the posture. I think many CD’ers probably lean forward as I do. It seems very simple but It took me a week or so until I was able to correct the weight towards my heels, working bottom-up. My head still tips forward while walking – so I’m still working on centering (and relaxing).

          • Hi myfight

            I’ve been thinking a lot about what you said about balance in the body and I definitely think it is related. I think we should all go to a chiro to find out which side relates to which side (side head turns towards). It would be interesting to see if there’s a pattern for most of us. I’m going to try and go to a chiro next week. I remember the last chiro telling me that one hip was higher than the other. I know this is normal for most people, but it would be interesting to understand if mine is abnormally higher. The chiro also said that my forward head was 100% forward – really bad. This sounds like a common program for us CD’ers. I’ve been doing some exercises and really trying to watch this. I wonder if we all have this unusual forward head?

            I completely understand about reprogramming the mind. I might look into NLP.

            I would love to hear more about your program. So glad to hear that it’s helping you. Have you thought about taking a video of yourself (maybe reading a passage in a book) and then re-reading the passage after a month to video the progress?

            I will add you to my skype.

            Cheers
            Lee-Ann

      • Thanks for all your messages!
        CD definitely has something to do with breathing, but perhaps not as directly as you suspected. Shallow breathing is an indicator of the freeze response: it’s like inhaling and then holding your breath, pretending you’re dead. You can perceive what goes on around you, but cannot express yourself. Impressions can come in, but nothing goes out. All this is due to (childhood) trauma.

        • I relate 100% to everything you have said above, CCD. I inhale and hold my breath so often throughout the day. Can definitely relate to the freeze response. I cannot for the life of me think what trauma I had as a child, but then maybe it wasn’t such a big thing, but big for a child. I’m just thinking that holding my breath is also because I continually hold my stomach in because, although I’m slim, my stomach always sticks out – i would look 6 months pregnant. This is due to my bad posture (my back is very curved…oh, my listen to me…the list goes on) which I’m trying to work on with Feldenkrais.

          • Well, most often we ‘forget’ the trauma because it was too painful. Once you start working on it, you will get notions of it, but not necessarily. As for the way you regard your body: just love it, the way it is, and take care of it. Forget about model bodies and such; those are unreal.

  3. I hate to ask because I know you are on a ‘journey’, but how much does it cost for this treatment? It is very cool that the treatment / healing is so far reaching!

    • No problem. It’s not cheap. You have to think thousands of USD. But the pricing has recently been amended. Based on your personal situation and needs, the clinic will offer you a package deal. So you really have to contact the clinic via Dr. Lee’s email and then they will send you a proposal.

  4. These are great information about alternative treatments!
    Here are some other stuff I personally think that may be beneficial for some people with CD. None of them are made for the CD treatment nor direct approaches like FCST but some of them may work as supplemental care. All of stuff are which I did or knew before I found myself as the CD.

    Alexander Technique (AT):
    This is to calm tension of muscles and nervous systems and to improve the body movement by learning correct body use based on mind-body connection. Frederick Alexander developed this principles in 1890s by closely studying himself in the mirror about relations of mind and body movement in order to cure his own problems that doctors couldn’t. Many people start AT to relieve pains or tension in certain part of the body. It’s not necessary to have a teacher and can learn from books or DVDs. I met a certified AT teacher for 3 times when my neck started to pull and before I knew I had the CD, but it didn’t help much and the teacher didn’t knew about the CD. Before that I read a couple of books like “Body, Breath & Being” by Carolyn Nicholls (very basic) and “How You Stand, How You Move, How You Live: Learning the Alexander Technique…” by Missy Vineyard (more detailed case studies). I use the audio CD that came with the Nicholls’ book for the daily short practice at home. Personally, I think my tension and spasms would be worse if I didn’t practice the AT. The AT use little muscle movement, and it needs some patience until noticing about the benefit.
    The key concept is: mind moves and muscle follows. For example, it encourages or gently ask (in mind) muscles to lengthen (from crown of the head to tip of the tows) and widening (shoulders and hips), but never force to do so. The practice is based on intension rather than actions. I know it’s vague so it’s recommended to read a book to understand, if anyone is interested.

    I think these exercises also would be beneficial for people with CD. Although I’m currently taking a break, I hope to go back some of them soon.

    Swimming:
    Lap swimming is like meditation time to me – I can totally forget about CD conditions. (As for crawl swimming, I later realized that I always breath in the side which my neck is pulling, so next time I should try the other side when breathing.)

    Yoga:
    Also benefits for mind-body relaxation through stretch, muscle work, and meditation. It really helps encourage good postures, too, since yoga instructors repeatedly tell us “shoulders relax, back and down,” “chest high, open the heart,” “hipbones front, tailbone down,” “neck long” “relax jaw,” “engage with the core,” “breathe,” etc. An instructor said that “Let breath guide each movement” and “To do yoga is to practice letting go.” Personally, I like Hatha yoga. Finding a favorite instructor is important since each has very different teaching method even with the same yoga style.

    Tai-chi:
    (In my interpretation) it helps improve efficient and smooth movement by reducing tension and promoting energy flows based on yin-yang philosophy. I think what yin-yang mean in tai-chi would be about tension-relax. My tai-chi instructor (9 years ago) who was a Chinese tai-chi master used to say that tai-chi benefits the Parkinson’s patients since the complex movement stimulates the brain. He also always said that we should practice 10,000 times to master the tai-chi movements. When he performed tai-chi, he moved so smooth as if he was dancing.

    Here are a couple of books that can promote positive thinking!

    “The Power” (The Secret) by Rhonda Byrne:
    Basically it says that “by giving 51 percent love though your good thoughts and good feeling…you then multiplies itself by attracting more love through the law of attraction.”
    There is also a chapter for health:
    - “When you have bad feelings, the tension causes your nerves and cells to contract, the vital chemical production in your body changes, your blood vessels contract, and your breathing becomes shallow,…”
    - “To see your health improve, give love to health more than fifty percent of the time. Just 51 percent is the tipping point from sickness to health.”
    - “Your body will change into whatever you want, through your feeling of love and gratitude.”

    You can also subscribe to Byrne’s free weekly mailing list (Secret Scrolls) for short reminders of her concepts. Here is the most recent one:
    “Look for the gifts in everything, especially when you are facing what appears to be a negative situation. Everything that we attract causes us to grow, which means that ultimately everything is for our own good.”

    “Forgiveness – The Greatest Healer of All” by Gerald G. Jampolsky, M.D.:
    Based on research of relationship between forgiveness and health.
    - “Forgiveness is the most powerful healer of all.”
    - “…physical problems that may be associate with an unforgiving mind: headaches, backaches, pains in the neck …”

    • Wow, I am impressed with your findings and insights! Good that you posted this! I like the concept of the AT: asking your muscles (not forcing them) to elongate. After all, your muscles are your dear servants and shouldn’t be forced but treated in a gentle way. Also, your remarks about positive thinking are very inspiring to me. Thank you so much for posting!

      • Hi

        I love your website. It’s great to see how pro active your being.

        I have been studying to be a teacher in the Alexander Technique for 3 years on a full time course. Which is really an intensive course for oneself (as to be a good teacher you have to first work it out for yourself). I have one term left to finish.

        I got diagnosed with ST 1 year before starting the course and imediatly started botox treartment (my time before being diagnosed is very simialr to others, a desperate time). I found the alexander technique to be the best way for me to work with myself. Moments with a teacher helping me I would feel so much lighter and mobile physicaly and mentally. After one term I had stopped taking the botox that had significantly helped but not cured the spasms, as the symptoms had reduced greatly. Ever since I have been steadily working with the dystonia and am basically free from it in name. What I mean is I don’t have the symtoms that would mark me as having ST but still have a strong habit towards that which I need to keep managing. I still get a bit of a shaky head sometimes when I’m stressed but it is hardly noticeable to the outside although it feels very significant still to me (almost as if I have re-calbrated to the lessening symptoms).

        It’s very hard to put down in words what the Alexander Technique offers as words our interpreted so differently by people. That is why touch is so useful in the technique to help teach it. What I have learnt is a way to give myself space to choose, so that moment where you have the iris-table urge and chatter going on to see if you can let go of that to the point where you can make another choice. Also I have learnt which way is up and which way is down, as in to start with I didn’t understand all the tension patterns i felt but now I have a much better understanding of where I want to release and where I want to be directing my energy (what i have found is the tension pattern is throug your whole body and it is more productive to start working in other areas to your neck to start indoing this pattern).

        So that is a bit of an explanation of my experience with the Alexander technique
        http://www.stat.org.uk

        • Hi Mal,
          Wow, your another inspiring story. It’s great to see people heal themselves even though we’re told this condition has no “cure”.

          Can you tell us a little more detail, like:
          How free is your walking? do you still have a lot of tension and do you have any pulling while walking?
          How is your driving, do you feel any symptoms in the car?
          You say after one term of your AT course you had stopped botox, how long is one term?

          Congratulations on healing yourself and becoming an AT instructing.
          Thanks for sharing your success story!

          • Hi again

            One term is 3 months. I used to have a lot of pulling walking and driving but now I don’t at all. I only get a slight tremor when in a stressful situation such as giving a presentation.

            If i get stressed driving I sometimes need to give a bit of energy to thinking the space in my body and allowing my legs to release out of my hip joints and this does the trick. I had quite a fight with the driving it took me a good year before I worked it out and it was a lot about the way i was trying to force myself to be right in the car.

        • Welcome to this blog and thanks a lot for sharing your experience! Other visitors of this blog are also applying the Alexander Technique to get relief. But it is great to know that you have been able to (almost completely?) recover with AT! Was this the only thing you did? Or did/do you also change your diet, take massage, practise meditation, work on your traumas, or any other kind of exercise?

          And now, how much maintenance do you need in order to keep your current state? Do you need to be careful with certain activities? On a scale of 10, how much do you feel healed?

          What do you mean when you say that touch is useful in the technique? Can you elaborate? Do you make use of the sensory trick?

          • Yes I don’t think it is a quick fix but it does give the opportunity for real change.

            I have used other things to help:

            I go to Chiropractor sometimes when I get locked up he works with my jaw but this is now mainly for my lower back but it does ease off any uneven tension patterns in my jaw that can also cause a tremor in my neck.

            I love swimming and have been following the Shaw method that uses the Alexander Technique principles. I find this very much like meditation and is really good for my back.

            I have found cranial sacral therapy helpful too.

            I haven’t done anything with diet but don’t drink coffee as this makes me nervy and shaky.

            I would say my Cervical Dystonia was 9/10 healed but I’m still working with the root agitator of it in terms of different passed traumas i have had to work with. So the goal has shifted

            In term’s of maintenance I need to continually work with myself. So swimming or lying on the floor for 10 minutes is the kind of thing i will do.

            I still have not masterd computers (ha ha) I find them a real challenge but it is much better and is a work in progress.

            In terms of touch. The sensory trick was what brought me to the Alexander Technique. Touch can communicate a calmness and also a direction. So you can understand instantly that you can let go and that moving in a certain direction is easier from the touch of a teachers hands. It gives you feedback that can help make sense off a confused area.

            I hope that goes some way to answer your questions. Out of all the things you have done what would you recommend to help with ST?

          • Well, for someone who hasn’t mastered computers, you succeed very well in participating in this blog :-) Do you mean that your CD is an obstacle in working with computers/keyboards? Or are computers simply not so much part of your life? What is your age if I may ask?

            Anyway, thank you very much for your feedback! Interesting to know that you have been working on your jaw as well. Is the reason behind this to reduce pressure on the nerves in the temporomandibular joint? Have you noticed immediate changes after manipulations on the jaw joint? And can you describe the type of manipulations?

            If I understand you correctly, you are now more focusing on the trauma work than on the body work, correct? How do you address the traumas?

            Very interesting to hear that you have been using touch with AT. Are you willing to describe some AT exercises in more detail, also showing the role of touch and sensory trick? (Have you seen the contributions of Jordi in this section, who propagates proprioceptive exercises, also to be accompanied by touch to make the movements easier?) And what do you mean by the teacher’s hands? Is your teacher helping you with the AT?

            On this same page you can see some of the things I have tried to improve my CD. At this stage I am still doing the STRC program, which involves stretching, specific fitness, massage, and alkaline diet. This already helps a great deal. To that I am adding Somatic Experiencing to address the traumas. I think this is essential in getting better. Recently I have added some QiGong. I think QiGong, AT, Feldenkrais, have a similar (healing) impact on CD.

            I am very interested to hear more from you!!!

        • Hi Mal,
          The Alexander technique sounds so very interesting, unfortunately there are no teachers anywhere in my area of the world. Is there a DVD you would recommend to learn from?
          Can you tell me, since you are 90% healed, which is incredible! How normalized are the muscles in your neck ? are they soft and supple like normal?

          The chiropractor that you see is he an upper cervical chiro?, the kind that do precision adjusting on the first and second vertebrae? I believe this is our physical cause and correcting this when the muscles are normalized could provide a complete healing.

          Can you tell us the reason why you feel you acquired this condition?
          Did you have a physical trauma or were you in bad postural positions at work for many years?
          or do you feel like it was mostly emotional trauma or both?

          Hope you don’t mind all the questions, and thanks in advance for you answers!

          • The Alexander Technique is really best learn’t with a teacher just because you are dealing with habit and it’s quite hard to catch your own habits sometimes. A good book is “How you stand, how you move, how you live” by Missy Vineyard she gives some exercise in the back for exploration which are good.

            I would say i still have an in-ballance is some of the muscles, the levator scapulae maybe, I will still lift my shollder sometimes.

            My chiropractor is part of SOTO (Sacro Ocipital Technique organisation). it is not a cure but relief for me.

            I think it was emotional trauma, but it all got much worst when i had a disk prolapse, then it was both combining to be bigger than their parts. I can look back to when I was 15 to social shyness being the start of it.

            I hope that helps, off to yoga again see if I can not manage it without injuring my back. good luck finding more and I think feldenchrist is excellent too and has a lot in common

          • Hi CCD

            Thanks the questions keep coming, i’m glad i’ve got so much interest. although it does mean more time behind the computer :-)

            I’m 33 and yes I find computers kind of suck away my attention and it can wind my neck up.

            With the work with it was SOTO chiropractor which is to do with the Sacral and Occipital joint, it is a bit of a black art to me, it involves massaging muscles around the jaw for me to balance it out and is aimed at releasing my pelvis.

            I have been dealing with anxiety and shyness within the alexander technique. It plays out in my body and visa versa.

            The AT exercises are just every day tasks and seeing if you can to them with greater ease and more freedom. You might have met the chair work :) this is just a simple task you can work at your co-ordiantion which will filter into all other areas of your life. I’ll be intrested to see Jordi’s notes when I look them up.

            As AT theachers you train to give clear direction through your hands . So this is great for us with ST as it really helps us work out what muscles are doing too much when you feel the difference with the hand contact.

            I have done some Feldenkrais and found it great too!

          • Thanks for your feedback! Wow, 33 and not into computers! Well, we need exceptions to the rule I guess ;-)

            What you say about the upper vertebrae and the jaw makes sense to me. This is along the lines of FCST (see elsewhere on this blog: align the entire spine and pelvis (with the jaw playing a pivotal role there) and resolve CD symptoms.

            I am very interested in hearing more details about how you work with anxiety and the body. Could you give a more detailed description? I suppose that there are similarities with somatic experiencing.

            And what do you mean by the chair work?

            Also, if you can give examples of how (the teacher’s) touch works with the neck, that would be great.

            Finally, how do you think AT and Feldenkrais compare? What are the commonalities and differences?

            Sorry to ask so many things, but I have the feeling that I can learn something from you here!

        • Hello Mal,
          I agree with you that the AT would help in reducing CD symptoms to some extent. To my understanding, the core of the AT is the “free-neck” (no tension on the neck), which I found it’s very challenging as a CD’er after about a half year of self practice – semi-spine, monkey, breathing, etc. (I read a couple of books about the AT and took some lessons by a certified teacher before I self-diagnosed as CD.) Could you please explain a little more about how you achieved the “free-neck” with AT? Did Botox help a lot as well?

          I’ve read that there are two kinds of AT teachers – one is teaching general AT concept and the other is helping the student’s special needs. My teacher was the former so it didn’t help much (I could from the book). Did your teacher was rather the latter type? I’m wondering how many CD teachers recognizes about CD or even dystonia. I guess it would be not widely so, but I think it will add more value and needs for the AT if CD is recognized or included in part of the teacher course. What motivated you to pursue to be an AT teacher rather than staying as a student?

          • Hi This is a really great point you have brought up. I think with ST we want guidance and hands on around our head neck whilst we work at freeing the neck from our feet up. So getting a good base to release our neck from. If you try and direct your head with the clasical directions of neck easy so your head can go forward and up you can easily just overcook it as we are pretty muddled up in this area to start with. So I have only recently started giving directions to my head and neck before it was just too much. You can still work to release the neck through approaching it indirectly.

            There are lots of AT teachers some might suit you some will not. It is just a question of trying different ones until you find someone you connect with. I don’t think there are different types there are two different training schools. The main one i’m with is stat the other is ITM I don’t think either specialise with special needs.

            I became a teacher just because it gave me the chance to really have the time and space to work with ST and in a course you end up having to confront things you might avoid dealing with if you could avoid it.

            I have had brilliant teachers who just seem to work well for me although they have no experience of CD.

          • Mal. thank you for sharing your experience. Now I think CD’ers indeed need a good teacher’s help to learn and master the AT (like you mentioned that “You can still work to release the neck through approaching it indirectly.”), and it’s hard to learn just from books (I read Vineyard, too) or CDs like the way that usually works for non-CD people.

            I believe you learned precious lifetime skills through the AT to deal with physical and mental challenges in life – I congratulate on what you’ve accomplished!

    • Thank you Dolphin, all very inspiring!
      I also like Louise Hay’s work, for positive thinking, she’s got some youtubes that are inspiring to watch. There are people that claim total body healing from illness through her daily affirmations.
      It’s worth a try and it doesn’t cost anything!

    • Glad you liked it! I just heard from my good friend about a book, which I thought interesting:
      “Spontaneous Healing : How to Discover and Embrace Your Body’s Natural Ability to Maintain and Heal Itself”
      by Andrew Weil.

    • By all means ;-)
      Interesting stuff indeed! I have friends who improved their health a lot by eliminating gluten. So it definitely could have an impact as well, considering that dystonia benefits from detoxification in general. Not feasible for me though, at this moment. I often don’t even know what I am ordering in the restaurants here, English menus being scarce!

  5. Since many of us following this blog do not like the idea of pharmaceutical drugs/Botox, ect. I have heard of cannabis oil/ hash oil that has many curative properties. It can cure cancers and according to this article, if you read further down, it states may be helpful for neurological/movement disorders.It is also good for pain and I imagine it would be a great muscle relaxer instead of botox, and it would actually be good for you instead of bad. This oil only affects the body it does not give you a mental high.
    Fortunately it is readily available here in the US if you can get a medical marijuana card from a doctor, which is fairly easy to obtain.

    http://articles.mercola.com/sites/articles/archive/2011/05/07/medical-marijuana-becoming-blockbuster-drug.aspx

      • I’m assuming she was smoking it, they never really said. I wouldn’t want to live life high…that might really make me jump off the bridge at this point. :)
        The oil on the other hand only affects the body.

        • Well, not a lifelong high, but who knows, for a little while ;-) Not for me though, I have had a very bad experience with the stuff when I was younger; it triggered too much fear.
          Anyway, I am curious what you are going to try, of all the possibilities that we found between the two of us!

          • CCD it’s all about money and time! When I return from Sante fe I will find out how much the oil is, maybe I can try it and let you know. Eventually I will also do a heavy metal cleanse. I read yesterday that all neurological disease has heavy metals involved. Mercury, aluminum especially. We have a lot of “chemtrails” here in the US. Planes spraying chemicals, they spray aluminum everywhere. Heavy metals deposit in fat tissue, I have no body fat and neither do you, so it went to our brains which is all fat. I also had my silver fillings taken out, 15 years ago,But you still need to cleanse it out of your system.After heavy metal cleanse, a serious antiviral protocol. Also I think it is important to eat super foods like the AFA blue green algae. I have eaten blue green algae and spirulina before and they are very powerful, they will make you feel very healthy! I am now gluten free completely and I am alkalanizing my body with sodium bicarbonate/baking soda.
            And last but not least I must get started on the Somatic Experiencing and relaxation music.
            I too have had some bad experiences with cannabis. It can make you paranoid, it happens to everyone, it depends on the quality of the product. I have had wonderful experiences with it also, frolicking on the beaches on Maui with drums beating in the background, dancing to the sunset. My life that I took for granted has somehow slipped through my fingers. But I have a voice inside of me that says I am going to be alright, I will overcome, it will just take some time, and perseverance. In the meantime i must appreciate the lessons to learn, and know everything happens for a reason.
            Hopefully I can make it to Korea if the above does not work. I feel the way you do even though the strc program can bring me into recovery, I want the ultimate cure, and we will find it!! :)

          • With your perseverence and acumen I am sure you’ll get there! Let’s keep at it. Yes, everything happens for a reason. Once you are truly convinced of that, anything that happens becomes acceptable. (Maybe not painless, but that’s another story.)
            Please don’t overdo it with the alkalizing. You need some acidity as well ;-)
            And thanks for your messages in the guestbook!

  6. Hallo CCD!

    Bin seit September 2010 diagnostiziert (Torticollis mit Tremor – nur leichte Symptome) – bin (typisch) weiblich und 45 Jahre alt. Auch ich bin auf deinen Blog gestoßen. Gute Arbeit! Respekt!

    Ich möchte auf ein interessantes gedankliches Modell hinweisen. Ich praktiziere täglich Bewegung (seit 1999 Taiji/Qigong). Im Rahmen meiner Suche nach Struktur half mir ein Seminar mit Daniele-Claude Martin zur „Biotensegrität“. Die Begriffe Spannung, Entspannung, schief und gerade haben sich seitdem neu definiert.

    Nun etwas Theorie:
    Der Körper wird oft mit mechanischen Modellen erklärt. Ein hartes Skelett mit festen Knochen wird übereinandergestapelt und verbunden mit Gelenkbewegungen, die in bestimmen Richtungen definiert sind. (Scharniergelenk – ist eine Bezeichnung, bei der ich ein Scharnier einer Tür vor meinem inneren Auge sehe, und ich finde ein lebendiges Gelenk ist unendlich komplexer). An der festen Struktur wird dann alles Weiche: Muskeln, Sehnen, Bindegewebe, Haut … angebracht.

    Das Modell der Biotensegrität legt das Tensegrity-Modell der Architektur (z.B. Kenneth Snelson/Needle Tower) zu Grunde. Es beschreibt eine Struktur, die durch Zugspannung und Druckspannung in einem stabilen und beweglichen Zustand ist. Druck wird über Züge weitergeleitet und breitet sich omnidirektional (in alle Richtungen) aus. Beim Turm sind das Stäbe/Druckspannung und Seile/Zugspannung, die sich in einem sich selbst stabilisierendem System halten.

    Wir bastelten zwei Modelle mit Holzstäben und Gummizügen, um es zu verstehen. Das war kompliziert und unübersichtlich. Mit dem letzten Zug entfaltete sich dann doch das Modell eines beweglichen Raumes. Es war gut diese Art der Beweglichkeit in den Händen zu spüren.

    Das Biotensigritätsmodell ist ein Bild mit dem ich nun gerne beim Üben arbeite.
    In der langsamen Bewegung denke ich in die Verspannung hinein und lasse genau an dieser Stelle riesige Räume entstehen (von der Erde bis zum Himmel). Ich stelle mir Druck und Zugspannung in meinem Körper vor und lausche auf die Veränderungen durch kleine Bewegungen. Manchmal gelingt es die Spannung darin zu weiten und aufzulösen. Es ist jedesmal anders. Und ich bemühe mich die Begriffe „schief“ und „gerade“ zu vergessen. Wichtiger ist es in der Bewegung Momente von „Wohlspannung“ zu finden. Dabei fühlen sich diese Momente instabil an. Ich würde es sogar als ein bisschen wackelig und unsicher beschreiben. Das ist ein Paradox. Ein Moment der Ruhe und „Ausgewogenheit“ ist somit eher einer austarierten Waage vergleichbar, die sich jeden Moment wieder zu einer Seit neigen kann. Entspannung bedeutet nie „ohne Spannung“. Innere und äußere Ruhe birgt immer die Möglichkeit von Bewegung in sich.

    So sieht ein Tensegritätsmodell aus:
    ttp://www.michaelditsch.de/bewegtsein-balance/biotensegrity.html

    vieleliebe Grüße, weit durch den RAUM

    • Vielen Dank für deinen aufwendigen und detaillierten Beitrag! Ich habe mich ein Bißchen in Biotensegrität vertieft und finde es sehr interessant. Angewandt auf den eigenen Körper, könnte es eine sehr subtile Unterstützung sein. Ich glaube auch ich verstehe, was du über wackelig sagst. Ich erlebe das gleiche. Ich werde versuchen, diese Prinzipien in meinem Ansatz zu integrieren.
      Übrigens, Biotensegrität erinnert mich an Alexander-Technik (AT) und Feldenkrais-Therapie. Es gibt CD-Patienten die positive Erfahrungen haben mit diesen beiden Therapien. (Für AT, siehe die Beiträge von Dolphin, an anderer Stelle in diesem Blog.)
      Bitte bleib dran. Und wenn du Zeit hast um mehr darüber erzählen, wie du mit CD klar kommst und probierst dich zu heilen, bitte tun!
      Liebe Grüße aus Südkorea!

      • Hallo CCD!
        Danke für dein freundliches Interesse.

        Daniele-Claude Martins „Biotensegrität“ hat Wurzeln in der „Spiraldynamik“ und im „Yi quan“ – ich weiß nicht ob es Gemeinsamkeiten mit AT oder Feldenkrais gibt. Beide Methoden habe ich noch nicht ausprobiert. Vielleicht gibt es eine Ähnlichkeit im ganzheitlichen Ansatz oder in der Arbeit mit den inneren „Bildern“.

        Vorstellungsbilder können eine große Kraft entwickeln aber auch aus dem Gleichgewicht bringen. Ich benutze sie im Taiji vor allem beim STEHEN. Ich arbeite gern mit folgenden Vorstellungen: ein Grashalm der vom Wind bewegt wird (richtet sich immer wieder auf), eine Sanduhr (Spannung löst sich der Schwerkraft folgend), eine schwingendes Tensegritätsmodel in mir (je feiner die Struktur um so mehr Möglichkeiten gibt es von A nach B zu kommen, auch wenn eine Verbindung gestört ist) auch die Bewegungen des Wassers kann ich mir super vorstellen und benutzen (Welle, Regendusche, Bächlein). Wichtig ist dabei gut geerdet zu stehen (Verbindung nach unten) und die innere Aufrichtung zu erhalten (Verbindung nach oben).

        Noch was zum Gefühl „sicher“ und „unsicher / wackelig“: Der Körper speichert die Haltung als normal ab, in der er sich lange Zeit befindet. Darum ist ein Zweifel am eigenen Gefühl für Normalität, was „gerade“ und „ungerade“ betrifft angebracht. Verlässt du das „Normale“ fühlt es sich irgendwie unangenehm und „unsicher“ an. Im Taiji gibt es dann die Korrektur vom Lehrer. Außerdem gibt es Partnerübungen bei denen man ein direktes Feedback vom Partner spürt oder hört. Es gehört dazu, sich immer wieder in seiner Haltung und Bewegung zu hinterfragen und sich zu „verunsichern“. Das ist nicht immer angenehm und auch ernüchternd. Es hilft, sich von den festgefahrenen Vorstellungen und Bewegungsmustern zu lösen und eine körperliche Ausrichtung „geschehen zu lassen“. So wird das Gefühl der „unsicheren Bewegung“ etwas ganz Positives. Es kann etwas Überraschendes folgen. Oder eine vertraute Bewegung kann sich auf einmal überraschend anders und neu anfühlen. Beim Laufen, zum Beispiel, kann jeder Schritt neu, anders und überraschend sein …

        • Vielen Dank für deine weitere Erläuterungen! Ich werde auf jeden Fall anfangen um mit den Vorstellungsbildern, die du erwähnst, zu spielen.
          Noch eine konkrete Frage an dich: wenn du die körperliche Ausrichtung geschehen läßt, was passiert dann mit deinem Kopf/Nacken? Mehr gerade als sonst? Order schief?

          • Eine sehr konkrete Frage – ich versuche eine kurze Antwort. Wenn mir das „geschehen lassen“ gelingt, fühlt sich mein Hals/Kopf „frei“ an. Wenn ich in den Körper hineinlausche, stoße ich auf keine Bereiche mehr, die Aufmerksamkeit verlangen.

            Was passiert mit meinem Kopf/Nacken? Unterschiedlich – ich habe für mich zwei Möglichkeiten zu üben entdeckt. Zum einen gebe ich dem Muskelzug nach und lasse den Kopf drehen – das fühlt sich (trügerisch?) ruhig an. Zum anderen orientiere ich mich an der genauen Ausrichtung im Körper, dann will (darf) der Tremor schütteln. Am erfolgreichsten bin ich, wenn ich weit entfernt vom Kopf mit der gedanklichen Arbeit beginne. Mit der Konzentration auf die Bewegungen in Füßen und Beinen, werden Kopf und Nacken allmählich ebenfalls ruhiger und natürlicher.

            Ich habe einen Übungsfundus aus dem ich schöpfen kann. Diese vertrauten Übungen geben mir die Möglichkeit zu vergleichen und Veränderungen wahrzunehmen. Es ist jeden Tag anders. Heute klappte beim STEHEN das Bild mit dem „Grashalm“ gar nicht, dafür kam beim „Tensegritätsmodell“ ein schönes Schwingen in den Körper. Bei der Vorstellung auf einem Hügel zu stehen und weit ins Tal zu blicken hatte ich ein schönes Gefühl der Weite.

            Im Taiji-Training gab es heute einen guten Austausch über innere Bilder. Jeder arbeitet mit anderen Bildern, aber alle benutzen welche. Die Übung wird dadurch sanft von innen unterstützt. Wenn du experimentierst – bitte wirklich sanft üben, man kann auch übertreiben und die Bilder „zu intensiv“ denken – dann kommen Schwindel oder Erschöpfung. Ich weiß nicht, ob man die Konzentration zum Üben aufbringen kann, wenn man gerade sehr starke Beschwerden hat. Bei mir ist es so: wenn ich gar nicht übe – dann kommen meine Beschwerden garantiert. Bei regelmäßigem Üben bin ich praktisch frei davon (aber trotzdem „schief“).

          • Ich danke dir für die nuancierte Antwort! Ich habe schon versucht mit den Bildern zu spielen. Es passierte noch nicht viel. Ich muß auch sagen daß ich jetzt ziemlich starke Beschwerden habe. Das sollte mit dem Gesetz von Hering zu tun haben! Ich halte dich auf dem Laufenden. Liebe Grüße aus Cheonan.

    • I couldn’t agree more. It’s okay to be a bunch of quacks, but it’s not okay to deny being that. T
      hese articles are in line with the section on chiropractic neurology in the Treatments section of this blog.
      Interesting story; good find!

  7. arrived 400 km away from home trying to get more comfort with special physical training starting tomorrow in a physical station. getting even more impression as I recognized should be more a mental thing as I would not like to know. was feeling free without much symtomps as I was travelling ( only when I was thinking about it) try to find the freedom that I would not to search. maybe a key issue. staying strong finding out and feeling free getting improvement.

    cheers from germany, we will find it out, only a matter of time

    • Thanks for checking in! When you are ready, please share more about your program.
      I think when you have emotional freedom, then your symptoms will be gone. That is more and more my experience, and in line with my meta study. When you are paying attention to the symptoms, fighting them, there is no room for emotional freedom or flow.
      Good luck with your program!!!

      • day 1 learned how important it is muscles have to be symetric. focused new finding myself in the middle. do not cross legs when sitting. found also out my weight is mostly on the right side of body (4 kilogram different on the side which rocks) beeing happy to get so good therapists. found also out there is an energy which blocks something, call it for myself the devil. I am young (there are some people who called me beauty ;-) I have got a trained body but CD. sitting in the city wondering why other people do nothing for the body and do not have any issue. this hurts a little bit but ok. i am also going on putting all the pressure inside me down, this works nice and i think its 50:50 for healing body and mind. realized again symptoms getting stronger while more critical points on body are affected physically. having much energy resolve CD. cheers

        ps: they told me from lot of people using botox getting morw worse as on the beginning..

        • Hello German beauty, thanks a lot for your interesting first report. Can you share with us where you are? It seems they know what they are doing. So they have ample experience with CD patients? What are the results?

          How did they find out that there is an energy that is blocking? I am interested to know more details.

          I think I know the answer to your question: this blocking energy is the survival energy that remained stuck in your system due to the unresolved freeze response!!! Other people don’t have it because they aren’t traumatized.

          Good luck and keep us posted!

  8. Hello Sunflowersprout and everyone

    you asked me about air polution in Luxemburg. I think it’s difficult to find a place without it… . But when my problems started I had a high voltage power line passing just above my house. Did anybody also had an electric problem? 4years before the problems started I had a teeth brace; my mother was smoking when she was pregnant with me; I stopped eating meat when I was 12……….
    Perhapse it could be a good thing if we try a little brain storm. We found out that several of us have problems with breathing, perhapse we can find out some other interesting facts. We are the experts of CD because we life with it 24h a day; we can help ourselves, and perhapse we can help other peoples not to get CD.

    • Brr, smoking while pregnant! The good old days…

      Yes, my mother also was a smoker, although I think she quit when she was pregnant. No electricity cables nearby. I didn’t have braces. I temporarily (1 year?) stopped eating meat when I was 12. But then I started to faint, so we went back to eating meat.

      To be honest, I think it’s too far-fetched. I.m.h.o. the root cause of CD is (childhood) trauma. Did you read the sections Phenomena and Perspectives?

      • that were just exampels, perhaps they are to far-fetched. But if I’ve learned one thing during my worke as a doctor and scientist so it is that we always must have our mind wide wide open for new ideas. I had a bad childhood (last year my brother commited suicide, perhapse our childhood is not innocent there either). The childhood is perhapse the reason why I first studdied psychology and have been working as an educator; psychologie was very important for me, and every time when I discovered the way of thinking from one scientist , it strongly influenced me, (Bettelheim…) but there is never just one truth. For me it is no accident that my CD started exactly the moment when I got pregnant (when I was a 8 year old child I saw a film in which a mother died during giving birth to a child, that became a fixed idea to me, I told my husband, I told my doctor, they smiled at me) , so I think I found out exactly my key point, but till now it didn’t help me. So I refuse to stop here and must go on to find every possible possibility. (sorry tut mir leid, war vielleicht nicht der richtige Ort, aber das musste raus. Alles wird gut werden, für uns alle. Ich bin heute leider nicht die Richtige um eine positive Wolke nach Korea zu schicken, heute etwas angeschlagen. Aber arbeite morgen wieder dran ;) )

        • Kein Problem! Du kannst hier alles sagen, fragen und vorschlagen was du möchtest! Ich habe doch geantwortet? ;-) Und habe dir auch einfach meine Meinung dazu gegeben.

          So sorry to hear about your brother. (I am often worried about mine.) It probably says a lot about your childhood.

          I cannot believe that your doctor and husband just smiled at you when you told them about the connection. In the western part of our world, most people still think that everything just happens by accident.

          As for your ‘key point’, I think this means that you have been severely traumatized by something that happened to your mother, or by your mother’s actions toward you. I am guessing, but it must be something of the kind, correct?

          Knowing and understanding your key point isn’t enough. You then need to resolve the trauma itself. Take a look at Somatic Experiencing (developed by Peter Levine). It’s a very safe therapy, that doesn’t require you to revisit the actual trauma(s). You don’t even need to know what the trauma(s) is/are. Your body remembers, and it is possible to extract the trauma(s) step by step from your body with Somatic Experiencing. I am doing this since last November. Slowly, things are starting to move… I’ll soon write more about it.

          Today I am sending you a big cloud with positivity from South Korea all the way to Luxemburg! Take care.

          • Hi;
            Thank you, it’s the first positiv cloud I have ever received from Korea. :) Internet is a surprising thing. I actually ordered my long distance course by Abbie Brown, I am very excited.
            How do you feel at the moment? How many treatments do you need for the moment. No digestif problems after meat ;)
            best wishes, from cold rainy Luxembourg

          • Thanks a lot for your message, and for the candle that you will light for me as well! Today wasn’t great for me. Much tension. I am getting 2-3 treatments per day now. So it is becoming less frequent. Dr. Lee told me today that the balance in my jaw has much improved now, and that I will start to see more improvement soon.
            The meat didn’t cause me any problems, fortunately!
            Alright, I’ll try to send you some sunshine from Korea! Sounds like you could use some. It’s one of those nice Benelux summers again! (Not)
            Enjoy your daughter’s birthday!!!

    • Hi Amelia,
      My symptoms slowly began almost a year ago.
      A year before that for about 6 weeks I lived under electrical power lines. I have also thought about this possibility as a factor. I did not feel well while living under them. So I went on the internet and searched and I found out they are very bad for you to live near, I don’t remember the details of why right now.
      I have been a strict vegetarian for 25 years, no meat, eggs or fish. I do eat some dairy.
      There is no air pollution where I live in rural Arizona. But as I have said, airplanes spray chemicals heavily here, since we have very few cloudy days, you really notice the lines in the sky.
      I know they do this in Europe also, but maybe with the clouds people don’t realize it is a problem.

      • hello Sunflowersprout (beautiful name ;) )

        I find all of that very interesting. Your symptoms also started slowly?

        There are a lot of common points; vegetarian during a long time (doctors never even asked me about this), electrical power line; breathing problems (had you them before or as a consequence of TS).

        You wrote somewhere that you tried blue green algeas, have you received them from Steve Zarr? It sounds very interesting.

        Marijuana ( oil) must also be a lot funnier as botox injections .Especially on the beach of Maui ;)
        You are at Santa Fe for the moments?
        greetings from Luxembourg

        • Amelia,
          No I did not get the algaes from Steve Zarr. I have been using them on and off for over 20 years. I do have concerns over them now. The best spirulina is grown in Hawaii, and the Hawaiian Islands are getting radioactive isotopes from the Japan Nuclear disaster.
          Also the best Blue green Algae comes from the US Pacific North West in the state of Oregon and also there a lot of high Radiation
          levels. So I no longer know how safe it is to consume these incredible super foods.

          I don’t really have breathing problems just not enough deep breathing. I feel one of the keys to getting better is better breathing, more oxygen into the cells, especially the brain.

          Yes, Greetings from Santa Fe, I am here now and it is a wonderful experience. Yesterday was my second day, and last night I already felt some improvement, but I am sure that will come and go during the recovery proocess.

          Marijuana oil is definetely funnier
          than botox! :)
          Sending everyone healing vibes,.
          Faith, determination, and love will get us well.

          • Dear Sunflowersprout,

            How are you doing? Did you already get back from Santa Fe?

            Hope you are happy with the new tools!

            Best regards from Cheonan

          • Hi ccd,
            Yes just got back. :)
            I am happy with the “tools”.
            The stretches feel good, they are easy and they make sense.
            I started on my own right away, and it is going well. Now today I have to make it over to the fitness club to do the exercises. Hoping no one see’s me doing the ugly military with the ugly smile :( . Oh well, like Abigail says: we have a job to do!!
            I am impressed with the fact that some things are already working better.
            The first afternoon I arrived in Santa fe, I went walking in the plaza, I had a very hard time. by the end of the week I no longer was needing to support my head while I went walking. I was able to walk fast and also slowly to browse at the art market. No one could tell i was struggling.
            When you think about it, in the beginning of CD symptoms the spasm is mild and Cd was very manageable. Over time because we are all connected it gets worse. This program reverses all of that and keeps the muscles healthy and elogated.
            Did you know there are people who do this program and once they are recovered they no longer have to do the program?
            They are so well, the CD has gone into dormancy. The cranial nerve is no longer misfiring. so this program can retrain the brain kind of like what myfight says. The body needs to be retrained from the bad repetitive movements it was doing.

            Meanwhile we’ll keep on searching for the CURE. :)

          • Hi Sunflowersprout,

            Good to hear from you! This sounds excellent. You had immediate results! Wow, that’s really impressive. (It certainly didn’t work out for me that way after one week in Santa Fe.)

            Personally, I never went to the gym. Did everything from home with bodylastics; I think that also works just fine. So I could smile as much as I wanted without feeling embarrassed!

            No, I didn’t know that there are people who completely and permanently recover with the program. Is this new information?

            Anyway, you are making big progress on your way to becoming a genuine sunflower! Keep it up!

          • CCD,
            I do not think this is new information, I thought she told everyone this.
            It is not necessarily a permanent dormancy. Abigail used to be one of these people. Then she had some surgery, and they used an anesthesia on her that made the torticollis worse, so after that, she again had to start the program, and still has to.

            Ginger the girl in the DVD performing the exercises is another person who now does not have to do the program. She has been recovered for many years and is so well, she does no exercises. I have been contemplating asking Abigail if I can talk to Ginger, so I can pick her brain about her experiences.
            Yesterday, my body started to fight back. I think I tried too hard the day before. So I am going to go a little easier, because the fight back is no fun!

            Thank you!…..I am looking forward to being my true old sunflower self.
            You too, you are on the way…..:)

  9. hi again,
    day 3 with training (4 times a day), founding out it´s important getting symetric muscles, put the body weight in the middle. they have checked my kilogramms found out 6 kilogram more on the right side of body (seems to me should be a reason feeling disharmony of body). getting an article which includes tests of pets which have to do similar actions very often, so this is the same as me doing the same actions few hours per day for years. this means there is a mind card in brain which recognized overdosed things always the same, getting confused. learning to change body actions in different situations (putting the body weight to the middle, concentrating on finding the middle in all-day situations, stay on two legs for example) another thing also important, reducing (I will call it the inerside pressure) all the things which are impacts negative vibrations..so we can find the way to be “normal”. have had an afternoon without great symtomps after 3 month with hard business. good progression. I am glad. also found out symptoms getting away if you sre not thinking about it, so finding a way, another way changing body movement and getting new life understandment with this. this cd is a mind card and body issue which can be resolved. doing it.

    cheers from germany

    • Thanks for your new report. Sounds very good!!
      How do you reduce the negative vibrations? Let me know!
      And what kind of results have they achieved with other CD patients?

      • with negative vibrations just meant the things which blocks healing im mind (take the pressure down..), reducing also perfectionism..relax as often as I can..getting other things more important as the “normal pressure like money, business and so on..the main thing is beeing happy, having own freedom..rest in peace ;-)

        • and yes, here are people from different europe countries, much experience with torticollis..but its old fashion style not know if they like beeing on the internet so it isnt my style making it public..let me check how it works the next weeks. but seems to me as a logical things repaiting mind card and body and also finding an own freedom which supports healing. i am still pretty sure there is a way getting out of cd, was happy to see a russian lady today getting resolved..its possible!

        • Sounds like a healthy approach indeed! Hope you can disclose the name of the institution soon. Thanks for your feedback and keep up the good work.

  10. hello CCD,

    perhapse it’s more difficult for you at the moment because you have less treatments at the moment. All the muscles and joints have to find the right position. I often have the feeling that I have to fight with my muscle; me against super sterno-cleido-mastoidien. Sometimes I am stronger and he really, really don’t like that and so we fight, me against a wild horse. You will win, you are much taller than him (or them ;) ) you are a cow-boy.

    Today I tried to have a positiv thinking day. And that was beautyfull :
    I woke up close to my husband, who loves and respecst me (so as I also do), and for once I had no pain after sleeping.
    I went to wake up my children; 3 children that’s a lot, but they are marvellous , and I trie to tell them every day that they are great

    I asked them what they want for breakfast, we have food, good food, they have the choice (how many moms would like to give food to their children every day)

    I took a warm shower, (we have water, warm water)

    I took my car ( I have a car, I have a driving liscence, and even with CD I can drive)

    I went to the super market, I can go where I want, I am free, I have the choice; I can buy what we need
    As it rained (yes again ;) ) I didn’t have to water my plants (so I saved 30 minutes)
    I cooked, we ate, and it was nice.
    This afternoon a little panic attak, went to town with three kids and I didn’t know that there was street market (strassenverkauf?) with thousands of peoples. So I changed plans, went to play ground, they were playing and I was reading (it stopped raining especially for us ;) )
    After that I had a great walking experience (I wrote it to Ann)

    Tomorrow morning I will have the big priviledge to go to worke, I have the job I always wanted. I will do surgeries, consultations, I heal patients ( pets) and listen to the owners (that is often the biggest part). After that patients are happy to leave, and owners are greatfull; 50% say “thank you for your kindness” And that is really a good good feeling. (once I realized that at my job 90% is great, kind people, lovely pets; but often the 10 % which were agressiv animals or stupid nerving people, were those who stayed in my mind when I went home. When I finally understood that I realized that THEY were the problem and not me) I write this down for my job, but I think it’s the same thing for all of us in our all day life. Oft stehen wir uns selbst im Weg (I can not translate)

    My life is good, I’am lucky even with CD. If I wouldn’t have CD perhapse I wouldn’t take time to be conscious about all this. I would just take it for granted.

    (naturally I don’t live on a pink cloud, a lot of things are difficult (especially private social contact) but I want to ignore the negative feelings more and more.

    I wish you a lot of positif experiences. (thank you for the sunshine it just arrived at the good moment)

    hasta la vista

    • Having less treatments is a good sign: the less deviations, the more stability, the better health, etc. However, right now I do need more treatments again. Hopefully I’m going through the final waves of healing crisis…

      Thank you so much for your cheerful and positive contributions! You really possess the gift of feeling gratitude. This is such an important feeling. I still need more practicing! And as for standing in your own way (das ist die Uebersetzung), it is one of the biggest challenges in life. The little voice that confirms negative beliefs, and will say things like ‘you will always fail’, ‘you will never make it’, etc. This voice is inside us, but needs to be battled. The best weapons are gratitude and love. The voice cannot defend itself against those weapons. I think you are doing a great job!

      I really like to read about your beautiful rural life. It sounds so idyllic. Maybe I will drop by this summer on my way to Spain!

      • Calimera
        it sounds idyllic ;) (I will let you with this positif image) I create my own world and most people like it. You are welcome.

        It seems to be very hard for you at the moment.

        During anesthesia patients go through different steps and at the end of it they cross again the steps in opposite direction. If you take bad habits you will neede twice the same time to undo them again.

        I think also that it is a little frightening to heal. CD takes (took) such an important place in your life, your thoughts your everything. When it will be gone, their will be a really big whole!!! Every year after exams I thought I will do party during a week, but indeed I never did. I woke up in the morning and there was no pressure no rythme, I felt lost, had to find myself again. For sure I had a lot of other things to do but they had so long been on second or third place that I did not find them immediately.

        Die Macht sei mit dir, dem Krampf den Kampf
        cheers

        • Thanks so much for your support. Today is a little better already. I will try Marillion and let you know.

          Yes, it may be so that letting go of the symptoms is not easy. You have a point there. I’ll think about it…

          Enjoy your Sunday.

          Ta leme!

  11. Hola a todos.
    Después de varios días esperando contestación de Abigail Brown, he quedado decepcionado y triste.
    Quería empezar cuanto antes el tratamiento pero…….los libros y dvd solo están en inglés!!!!!!!!!!!!!!!!!!!!!!
    Yo soy español y no tengo ni idea de ese idioma y evidentemente sería muy complicado que un traductor , tradujera los libros y los dvd´s.
    GGGGRRRRR!!!!!!!!!!

    • ¡No te preocupes! Vamos a encontrar remedio. ¿Podrías pedirle a Abigail de mandarte el fichero electrónico en inglés?

          • Hola.
            He recibido malas noticias de Abigail, no me puede enviar fichero electrónico del tratamiento!!!. Voy a ver si encuentro a alguien que me lo pudiera traducir y saber cuanto cuesta.
            CCD, siento que tengas que irte de Korea, aunque siento más que te hicieras la idea de que en dos meses curarías tu distonía y no haya sido así. Lo lamento.
            Acabo de comprarme un aparato ortopédico para mi CD. Es un aparato que consta de tres partes. 1-una especie de coraza para el torax. 2- me sujeta la barbilla. 3-me sujeta la tparte posterior de la cabeza.
            Con este aparato espero poder pasear sin sentir el dolor que me produce la DC. Os explicaré qué tal va y si puedo, enviaré fotos por si a alguien le puede interesar.
            Amelia…¿eres española?
            Saludos.

          • Hola. No te preocupes, vamos a resolver esto. Lo voy a pensar un poco más.

            Y no te preocupes por mí! Curar de DC dentro de 2 meses fue un poco ambicioso por cierto!

            Espero que tu aparato te dará algo de alivio. Pero también espero que serás capaz de encontrar una solución estructural!

            ¡Un abrazo!

    • Hola Rafa
      No, yo no soy espaniol. Yo entendo muy poco :(
      Espero que Google traductor puede traduccir correctamente el mensaje. Entiendes francés?
      Mucho valor y saludos desde Luxemburgo

      I will continue in English . At the beginning of my CD I also had an orthopedic brace as you described. I think it can help to put you in the right position while you are wearing it, I felt no pain when I had it on. But pain was important when I took it of. It can work. My doctor told me to wear it 8 hours a day, but if you wear it to long the muscle on the other side will loos their power, so I don’t really know what is the best
      I hope it will help you.

      • Hola Amelia.
        Pues vaya…siento que no seas española porque el traductor de Google no es muy preciso.
        El aparato que comenté, lo compré para poder salir a la calle y dar un paseo. Lo he probado estos días y me ha ayudado bastante ya que he conseguido andar 45 minutos sin notar el dolor tan fuerte que sentía antes de comprar el aparato.
        Como bien dices…por un lado te arregla algo y por otro lado te estropea otra parte.
        Tengo suerte de que no me importan las miradas de las personas que van por la calle. Si puedo caminar un rato sin dolor, me da lo mismo que me miren.
        Saludos y suerte!!

        • Hola , he leido tus comentarios sobre Abigail , yo estoy desde el 2009 con su tratamiento de ejercicios y estoy mejorando considerablemente , te pudiera ayudar enviandote el DVD que es lo mas importante y si necesitaras alguna ayuda en cuanto a los ejercicios ,pero con el libro es mas dificil ya que se necesitaria tradurcir , si te parece te pones en contacto , saludos !!

    • Welcome to the blog and sorry for the late approval/release of your comments! It’s holiday and I am not online that often ;-)

      Very interesting story! Your approach to heal yourself is very close to mine, and most other visitors of this blog! Did you read the sections Phenomena and Perspectives? Those explain about the anxiety.

      Have you heard about the STRC program? (See the section Treatments of tis blog.) And have you heard of Somatic Experiencing of Peter Levine? (I think it’s the most effective way to treat the anxiety due to trauma).

      I am very interested to get your feedback!

      • Thanks!
        as you can see in http://www.camins-neuronals-disfuncionals.net i think that in cervical dystonia you have two parts:
        - disfunctional neural path
        - dystonic muscle
        For me fixing dystonia means to dilute this neuronal disfunctional pathway. When a terapy goes to the dystonic muscle (streching, botulinum toxin, massage) doesn´t work because you still have the disfunctional neuronal pathway working.
        When i saw “Treatments” in your blog i saw this:
        - Balancing the joints of the jaw: does it work? maybe yes, but i don´t understand why.
        - Diet, correct posture: Cervical dystonia is a very problematic disease. I don´t belive that with diet and correcting your posture you will fix it.
        - Hypnoterapy: can you dilute this disfunctional neuronal pathway with hypnoterapy? i don´t think so.
        - Acupuncture: i don´t understand how it works, but the question is the same: can acupuncture dilute this disfunctional neural paths?
        - Chiropractic therapy: as i know they work only with the muscle, not with this disfunctional neural paths.
        - In STRC program i could read: “…Muscle Exercises, Massage, Nutritional Guidelines, and Prioritizing Spiritual. Mental & Emotional Wellbeing and myofascial release…” is the same, i don´t see how to dilute this disfunctional neural path.
        - I check Peter Levine´s web to see what The somatic experiencing is and i could read: “The Somatic Experiencing Trauma Institute is a non-profit, educational and research organization dedicated to the worldwide healing and prevention of trauma. We provide professional training in Somatic Experiencing® and outreach to under served populations and victims of violence, war and natural disasters.” This has no conection for me with cervical dystonia.
        Regards and sorry for my english, i not my first language.

        • hi jordi,

          checked your website as best as the translation worked. the thing that make really sense is training to reprogramming mind card. the other things are so individual but not “a must have” take it not personal but seems to me as a business. no worries from germany, just an impression of me.

          cheers

        • Hi

          It seems to me that we need to clear this supressed anger first. I’ll have a look at Somatic Experiencing, but does anyone have any other suggestions?

          One thing I did notice was when I was on a 4 day spiritual healing workshop we did a few exercises where one person would ‘give’ energy to another person. I didn’t necessarily feel the energy when it was happening, but when I got home a friend commented that I was ‘glowing’ – she said she would have thought that I was pregnant. The following morning lying in bed I felt the most incredible energy *radiating* and overflowing from my body. Thinking about this, I might try a Reiki session (never tried before) as this immense feeling of energy can only do one good. It was the most amazing experience, unlike anything I’ve ever experienced before.

          Has anyone else tried Reiki?

        • Thanks a lot for your elaborate replies. And sorry for my very late response – due to holiday.

          As for the treatments section of this blog, I simply gathered the alternative treatments that seem to have a significant effect, as reported by others. But I will try to give you my feedback as much as possible.

          First of all, I do not believe that the human body is a simple ‘machine’ that suffers from, e.g., a disfunctional neural pathway that can only be fixed by ‘reprogramming’. Don’t understand me wrong: I think it can be fixed by ‘reprogramming’, but also in numerous other ways. As long as the method helps the body to release freeze-response energy, it will be helpful. All relaxation is definitely helpful for this, because relaxation allows the body to release tension. Relaxation allows us to feel the sensations that our body produces. Feeling and experiencing those sensations in itself can be enough to get cured of CD, or any other disease caused by trauma. Dr. Scaer has written to me that he has seen several CD patients recover completely thanks to Somatic Experiencing alone! As for the connection between CD and Somatic Experiencing, please read the sections Phenomena and Perspectives on this blog. You will understand that I think (and not I alone) that CD is usually caused by childhood trauma. And Somatic Experiencing is very effective in resolving childhood trauma. So there you have the connection.

          There definitely also is a link between the jaw joint and CD. Dr. Lee says the following about it.
          “Within the framework of FCST, the main cause of cervical dystonia is considered to be subluxation of the upper cervical vertebrae, as well abnormality of the brain-nerve system due to imbalance of the TMJ. Tertiary nerves around the TMJ area are concatenated to the Atlas and the Axis along the brainstem. Abnormalities in TMJ thus cause subluxation in the occipito atlantoaxial joint, which in turn generates a distorted signal to the brain-nerve system. This leads to errors in the brain-nerve system that cause involuntary cramps, spasms, and pain in the cervical area. As a consequence, the head will move away from its centered position.”

          Diet and posture can be very helpful to fix dystonia. The diet is needed to cleanse the body (and muscles!) from toxicity. Posture is important to keep the body balanced and centered. But diet and posture improvements alone, probably aren’t enough to get cured.

          I think hypnotherapy is very helpful to achieve relaxation. Also, I think it is helpful to recondition the body-mind continuum, re-establishing healthy patterns.

          As for acupuncture, STRC, etc., you emphasize that you cannot relate these to disfunctional pathways. Well, I can assure you that the STRC program works. And others can confirm that other treatments have helped them. So perhaps it might be a good idea to think outside the box and drop the assumption of the disfunctional pathway being the root cause of CD? Personally, I think it is a side effect of the disease. Not the cause.

          For me the bottom line of recovery is: simply decide that you don’t need the symptoms anymore and that you will become healthy. Then, no matter the therapy that you apply, you will become healthy. I am working on it, using this blog to prove it, and to have meaningful discussions with others. So I am looking forward to getting your further feedback!

          • “…First of all, I do not believe that the human body is a simple ‘machine’ that suffers from, e.g., a disfunctional neural pathway that can only be fixed by ‘reprogramming’…”

            Me neither! see my web (http://www.camins-neuronals-disfuncionals.net/index.php?cat=bases.php) i never said that “can only be fixed by ‘reeducating’ or ‘reprogramming’(as you said)”
            For me the cure has three dimensions (at least)
            1.- Psychiatric: in other words, a doctor that prescribes you a medicin for your anxiety, depression, pain…
            2.- Psychological, therapist: in other words, a psychologist that check your traumas, and the source of your anxiety…
            For me the anxiety commes first, in your chilhood or may be lather…
            3.- Reeducative: a lot of neck exercices to learn again how to move the neck (you say reprograming i say reeducating)
            4.- Neurologist: Yes, botulinum toxin for a one or two years (i never took, but my council today is, take the toxin, solve your traumas with one therapist and train train train with your neck)

            We are in the 21 century and we are talking about a very serius disease, why don’t use the tools that modern medicin have? Talking about take botulinum toxin all your life is an error, but talking about take botulinun toxin one or two years only to do the reeducative part more confortable is use the toxin in the right way (in my oppinion)
            Note: when i had CD i never took the botulinum toxin because i wanted to be far from “the only ‘solution’ is take botulinum toxin all your live…doctors said”

            “…Feeling and experiencing those sensations in itself can be enough to get cured of CD, or any other disease caused by trauma…”
            Do you really think that you can fix your CD “experiencing those sensations”? i think is little naive…test that, but if in six months you have no results test another treatment please. Experiencing the sensations, or the trauma can solve your chilhood trauma, but your bad neural paths and your distonic muscle will be still there. You have to do something specific to dilute that bad connexions in your brain.

            “…So perhaps it might be a good idea to think outside the box and drop the assumption of the disfunctional pathway being the root cause of CD? Personally, I think it is a side effect of the disease. Not the cause….”

            Absolutely! for me the anxiety commes first. This anxiety causes the CD in our cases, but in other people can cause other diseases…but obiusly the disfunctional pathway comes after a big big trauma (in your words) (anxiety in my words). So with one therapist you have to solve the source of your anxiety.
            When I check “somatic experiencing” i can see that they solve your trauma and “only” that or in they words: “…that helps the client’s autonomic nervous system return to a regulated state…” . Nothing about the neck. You have to work in your neck specifically, reeducating…in my opinion. It took me abaut six years to be free of all CD simptoms.

            I think, as you said, that the same problem can be solved in different ways, but people have to check specialists in that problem. In cervical dystonia, in my oppinion, the specialist are: psychologists, psychiatrists, therapists, neurologists, doctors… is a serius disease, so ask to the specialists…yes, i know, lot of them say that there´s no solution, and the only think that you can do is try botulinum toxin for all your life, they say. But is a very rare disease and very unknown.
            So check others doctors, neurologists… but please don’t talk about reiky, acupuncture, diet, posture if you want to fix your CD. Don´t understant me wrong. Reiky, acupuncture, keep your diet, keep your posture are a very usefull but not in fixing CD. There are good thinks but not the root of the question.

            Sorry if i´m rude or not polite, i try to be clear in the concepts.
            Regards,
            Jordi.

          • Thanks very much for your feedback! No problem, I also like to be direct!

            In your previous message, you were saying:
            For me fixing dystonia means to dilute this neuronal disfunctional pathway. When a terapy goes to the dystonic muscle (streching, botulinum toxin, massage) doesn´t work because you still have the disfunctional neuronal pathway working.

            - Hypnoterapy: can you dilute this disfunctional neuronal pathway with hypnoterapy? i don´t think so.
            - Acupuncture: i don´t understand how it works, but the question is the same: can acupuncture dilute this disfunctional neural paths?
            - Chiropractic therapy: as i know they work only with the muscle, not with this disfunctional neural paths.
            - In STRC program i could read: “…Muscle Exercises, Massage, Nutritional Guidelines, and Prioritizing Spiritual. Mental & Emotional Wellbeing and myofascial release…” is the same, i don´t see how to dilute this disfunctional neural path.

            So from that I got the very strong impression that you reject any therapy if you can’t relate it to fixing the disfunctional pathway! But reading your latest comment, I have the impression that our points of view are getting closer.

            As for Botox, I agree with you that it can help as a catalyst, e.g., if taken for one or two years. This has been shown in several recovery cases. But personally, I still do without, and happy about it.

            Regarding the cure of CD, it’s good that we agree that we can look at it from various perspectives. For most people, I think it is necessary to do a physical exercise program. But in principle, even that isn’t necessary. Within today’s medical world, the understanding of a body-mind continuum is getting stronger all the time. Body and mind are intertwined, are actually the same. If you work with the body, you automatically work with the mind, and vice versa.

            I have corresponded with Dr. Richard Scaer, and he has confirmed to me that he has seen several CD patients recover after doing Somatic Experiencing alone. Dr. Scaer is far from naive. Look him up. He is a pioneer.

            Another piece of evidence supporting my statement that it is not always necessary to do a physical exercise program, is the simple fact that spontaneous remissions occur all the time. QED.

            If we are able to let go, to stop our rigid controlling of our lives and bodies, if we can release the survival energy that was generated during freeze response, we can heal, completely. I am convinced of that. Actually, it is happening to me, as I progress with Somatic Experiencing.

            Finally, I like your independent position towards the established medical world, telling us that the only thing we can do is take Botox. Of course that is utter BS! So I encourage you to stay connected to this blog and to allow me to put a link to your website in the Treatments section of this blog.

            Looking forward to hearing from you again.

  12. Hi CCD and everyone else,
    I haven’t read this part of the blog comments before so my reply might come in a bit late. Yes I have tried Reiki it helpt for a while, but not longlasting. I find it interesting to see so many similarities in our lifes. I am not sure if my mother smoked when pregnant, but she smoked when I was a child. I also have a breathingproblem – I was diagnosed with Sarcoidos a few years ago. I sometimes wake up at night feeling I am suffocating. I stopped eating meat when I was a child. As for the freezing point – I didn’t have an easy childhood, but I have always felt rather strong despite that. I had a tooth taken out because I did’nt have enough space in my mouth. I had all my Amalgam-fillings removed when I got CD. To master my shyness I became a teacher, first at a Senior High School and now at a University, but like Kafka, I often have the feeling of not beeing good enough. Well, now, encouraged from several of you, I have applied for the Long Distance Course from STRC! Greetings this sunny Friday afternoon from Sweden!

    • Hi Ann – I imagine it can be challenging to stand up and speak front of people regularly while having CD. Glad to hear that you started the STRC program! My CD symptoms at home greatly reduced now, but the challenge is while commuting and working, so every day is like a series of testing for me. I just started to read books about anger management, hypersensitivity, stress reduction, etc. I found working on anger is real soul-searching and it helps.
      Keep up with the STRC work and post us or the chat group for any concerns. All the best ;)

      • Hi Dolphin, please keep us updated about resolving the anger! Meanwhile, I have started to look into the material of Caroline Myss, and find it inspiring!

        • Hello CCD,
          Life is so strange – yesterday one of my workingmates said “I have read such an interesting book during the summer” and she wrote the author and title down for me. This morning I ordered this book and now I read your comment! The book is “Heliga kontrakt” in Swedish and the author is Caroline Myss!!

        • Welcome back CCD! Hope you had a wonderful vacation. I do need a long vacation, too, but no luck.

          I’ve read “The Anger Trap” by Dr. Les Carter halfway through. He defines anger as the self-preservation and it comes from a cry for respect. The main categories of anger are suppression, openly aggressiveness, and passive-aggressiveness. Suppressed anger can appears in the form of depression, anxiety, headaches, backache, etc. (and CD in our case). People who suppress anger hide their feelings. The healthy way to handle anger is being assertive while preserving dignity and respect to the others involved. I felt the book is aimed for better communication rather than how to handle emotional trap, but still there are so much to learn. I read the book of SE while ago and felt rather vague in deeply understanding about suppressed emotion like anger, so I think learning about anger prior to SE would help, too.
          I also read about “The Highly Sensitive Person” by Aron (halfway too – I can squeeze time only in weekends). The highly sensitive people are about 20% of population (in the US), and I think most of CD’ers are in this category. I seem to be hyper-sensitive about noises, smells, emotion, etc. where my CD conditions react greatly in these stimuli. This book helps understand about the nature of self and how to cope in this world.
          “Anatomy of The Spirit” by Caroline Myss is like a classic of human energy and chakras. I’ve reread once in several years as I can forget details. If I were more mindful about what the book says, I could’ve about CD ;)

          I noticed several of us in this blog are vegetarians. Not sure if it can be in part related to CD but could be. I’m a pescatarian for about 8 years. I wasn’t B12 deficiency when tested and take enough protein. As Myss puts it “if you are spiritually centered and call back your energy from negative beliefs, you can eat cat food and still stay healthy.” I contacted my friend who recently converted from a strict vegetarian to a meat (mainly poultry) eater and says feels better and has more energy. If anyone is interested, I’ll post more info (books and website) that he recommends.

          • Hi Dolphin

            Amazing coincidence about your mentioning vegetarian. Last Saturday evening I switched to a vegan diet and have also cut out wheat/gluten, dairy (am eating cheese), eggs and sugar. I decided to do this after watching videos on nutritionfacts.org and also out of desperation to start at the bottom and sort out fundamental physical problems I was experiencing (bloating, breathing and posture). I never dreamt I would ever do this as I was an avid meat eater. In no way am I recommending this diet but I just want to share my experiences. Before I started I was severely bloated (continual problem). My head was always fuzzy, I couldn’t think straight/clearly and often battled to follow conversations. I also didn’t feel ‘normal’ in social situations – I felt like I was faking it all the time – my personality, reactions and what I said and how I acted in social situations didn’t feel natural. I felt like I had lost myself/my personality. Most of the time (especially in social environment) I felt hyped and a bit ‘unreal’/floaty. My breathing was often difficult throughout the day (breathed high almost in my neck, my voice was raspy at times and I sometimes felt like I was being strangled!). At least once a week I’d wake up at night and have to get on my hand and knees, let my stomach fall to catch my breath. I have written about all these problems on this site before.

            I have kept a food diary of exactly what I have eaten this last week and my moods and thoughts. The following are my moods/thoughts.

            On Monday at midday, my bloating was down from a 10 to 6 and my breathing was “very relaxed, can easily take deep breaths although do not need them”. Twice during the day I noted that my neck felt like it was turning more smoothly – more relaxed, however after seeing some friends my neck got worse from trying to keep my head straight during the conversation, but fine after some time. The overwhelming sense I had was a feeling of CALM. I’ve put it in uppercaps because I it was such a dramatic experience. I wrote “I feel like I’ve got it together, i.e. if faced with someone in conversation, I feel I could take in what they’re saying, think and reply calmly, clearly and in my own time. Not scatty and no quick, reactions without thinking”.

            On Tuesday: “My voice has changed (lighter – not raspy). I am joking with people!!”. I.e. I found I could react to people naturally. “Mood – amazing, calm, clear headed, when I hear myself talking on the phone my voice is happy, youthful and natural! Very lighthearted. Head clear. Feeling GOOD. Bloating 5″.

            On Wednesday: “Feeling good. Not off the charts as previous days – 9″

            Forgot to record Thursday, but I was feeling very upbeat. I feel confident that mood will be fairly constant.

            My initial thought on Monday when I felt the immense sense of calm was that my symptoms had greatly reduced not because of what I was eating, but because I was not eating something that was causing the problems I was experiencing.

            This is one of the most dramatic, immediate experiences I have ever experienced. My CD hasn’t gone away, but I feel like physically and mentally I am able to cope with the CD. I feel like it has become secondary in my life because the happiness and calm I’m feeling has taken dominance.

            One other thing, I had come to the conclusion about 2/3 months ago (maybe more) that walking ( I used to walk an hour a day – with CD) was aggravating my CD. I have since figured out that being pre menstrual was making it worse, not the walking. Obviously my hormones were making me anxious and maybe this made me tense up and made it worse. I took up walking again (hour a day) about a month ago and have been doing Feldenkrais exercises (been doing them for a year now) before I walk and am feeling great with no adverse effects on my body. I can highly recommend Natacha Jarousse’s dvd http://www.som.mu/ressources/dvd/. I have noticed that if I don’t do my exercises for just two days, my body gets stiff and doesn’t move as freely. This isn’t curing my CD, but it’s stopping my body from ‘solidifying’ in bad postures. I.e I do excellent rotation exercises where you rotate your upper and lower body. If I don’t do them I really notice the difference. They are not ‘exercises’, but movements to keep your body moving freely/normally.

            Last thing I discovered is that exercising the muscle on the other side of your neck makes it so much easier to keep your head straight. I don’t ‘exercise’ it as such. When I walk I try to keep my head back (no forward head posture) and then I turn my head the opposite way to which it wants to go. I found that this had an immediate effect and I managed to hold my head straight at least double the time I normally can in a conversation.

            Once again, I’m not advocating the diet and many of you may think it’s extreme, but I was desperate and had to start somewhere. I may slowly introduce foods to see the effect, but for the moment I am loving the new me.

          • Good work! It seems to me that your intentions to change something are strong enough in themselves to make a change indeed. And detoxification of the body (e.g., by diet change) always yields a mental detoxification as well, because body = mind. Keep us updated!

          • Hi Dolphin, so nice to hear back from you as well! I hope you are doing well with your recovery.

            Interesting perspectives on anger! As for SE, let me give you one recommendation. It seems you keep telling yourself that you have to intellectually understand everything before you can apply new methods. You are reading so many books. The whole thing about SE is that you stop living in your head (one of the main things that we/CD do, in order to escape our traumatized bodies), and start listening to your body. There is nothing to understand about it. You just need to do it and feel the sensations. And thus you will be able to gradually release the stuck/frozen survival energy. Just do it.

            Interesting that you mention the highly sensitive person. I have looked into that before. I am pretty sure that all of us (CD) are HSPs. But I think HSP is not a fundamentally different type of human. These are just traumatized people (because their symptoms match those of traumatized people), who found a way to survive but still suffer from the arousal energy that was generated prior to the trauma… What do you think?

            And I totally agree with Myss’ statement about eating cat food. Once I am fully recovered I will be on it! (And lots of wine and chocolate as well!)

            Take care!

          • Hi LeeAnn,
            Thank you for sharing your experience. It’s good to have a healthy diet, but being vegetarian doesn’t necessarily mean totally healthy – it’s more like a preference. So if you like to eat meat, it’s OK. I think it’s best to eat whatever you like as far as it maintains a moderately healthy diet, and enjoy eating! In my case I happened to be favor of so called healthy foods since I was a kid (no soda after 10 years, etc.) and I love to eat – my favorite time every day (and all CD symptoms disappears).
            I’m reading a anxiety management book. I don’t really recognize suffering from it, but I thought knowledge might be helpful. In fact, I learned that my feeling of embarrassment about CD symptoms in public actually a symptom of social anxiety. Reading your message, it seems like symptoms of social anxiety as well, so working with this sort of book may help for you, too. (I don’t mean of offend but just an impression.)
            I did some the Alexander Technique work, which I think almost comparable to the Feldenkrais method. I think these methods are indirectly helpful for CD and good lifetime tools.
            The Natacha Jarousse’s DVD seems interesting and I think stretching is very good. I do it with the STRC but it recommends to stay the chin down for CD’ers.
            It’s known fact that women have emotional changes (irritation, etc.) pre- or during menstrual period because of hormones changes, so it make sense if you have bad CD symptoms as well. I haven’t paid attention that, though.
            As for the last thing you mentioned about managing your neck while walking, I actually did similar things last week and worked very well for a few days. But after more than 3 days ( this week) I had terrible fight-back followed by bad symptoms. If it work for you that’s great – it appeared I’m not there yet. Keep us posted if it has the sustainable improvement!
            All the best :)

          • Can you please reconfirm: do your CD symptoms vanish completely, 100%, when you eat? Always? If yes, are there any other pleasant activities (you know what I mean) that make it disappear?

          • Hi CCD,
            Thank you for your advice about SE. It seems I was missing the core of SE. It’s funny – I had similar comments from my supervisor at work (I’m relatively new to the field because of a career change so they don’t expect me to learn so fast and want me to slow down and relax). Just do it without thinking too much – I get it! I need this reminder from time to time. I also just remembered a yoga teacher’s word “Think of nothing, but feel everything.”
            Yes, HSP are just normal people (1/5 of population is pretty large). I think the author wanted to educate psychologist colleagues the difference between those who have depression/anxiety disorder and HSP because both have similar traits, but HSP are innate personality traits developed since infant. Trauma could be part of it but I believe it’s not a main subject here. Let me finish the book – a while later – and see how I may observe about it.
            I’m currently in self-psychotherapy period by reading related books for a kind of a soul-searching. If I didn’t have CD, I would probably never approach these subjects – so it’s a good opportunity once in my life, just to fill my lifetime tool box. But I’ll keep in mind not to live too much on my head :)

          • Hi Dolphin, yes! Living in your head does not equal mindfulness. On the contrary.

            As for HSPs, I am curious what you will have to say about it. So far, everything I have read about HSP characteristics points directly toward childhood trauma, because childhood-trauma sufferers have exactly the same characteristics.

            Just curious: let me ask you, how many books do you read per month?

            Take care!

          • I have been a strict veggie for 25 years. Some of those years I was mostly “raw food” and some vegan.
            Now, after all of that, what I think is most healthy, is a well balanced vegetarian diet that includes “cultured dairy”,
            Unpasturized Raw milks and turn them into a “kefir” (like a cultured yogurt)
            Raw unpasteurized cheeses….YUM! and lot’s of cultured veggies, like kimchee and sauerkraut.
            Also avoiding gluten is a very good thing.
            Include grains like millet. quinoia, rice, buckwheat.

            I hope that my vegetarianism did not contribute to a weaker nervous system which led to ST. particularly a b12 deficiency, but I have always taken a B12 lozenge and felt it worked very well.
            What I think is that we are HSP and are sensitive to the slaughtering of animals.

            CCD your making me laugh again………My symptoms seem to go away at restaurants……Funny huh?
            That’s all I will comment on! :)

          • We could open up a ST clinic that focuses on pleasurable experiences all day everyday until healed! :)

          • Laughter is a good thing…..it has relaxed my muscles….thank you CCD!
            We will include laughter at our clinic!

          • Not 100%, but feels like that – no spasms or jerks at all but my neck is slightly tilted without discomfort, so at least I forget about CD during each meal time. Could be because of increase in dopamine (feel-good neurotransmitter), though the medication (Levodopa) that do the same didn’t work for me. Other pleasure activities are reading, writing, doing a kind of jobs I like on computer at work, enjoying talking to close friends (only when sitting but not while walking), etc. On the contrary, when I encounter something I don’t like, CD symptoms immediately get worse – it seems my body is very honest beyond my thoughts ;)

          • Interesting. Well, I believe that we aren’t simply the sum of the chemical reactions going on inside us. There are chemical reactions, yes, but there is much more. So I am not surprised that the medication doesn’t work for you, but the pleasurable things do.
            It also is so interesting that your feedback period seems to be very short: stressful things have an immediate impact on your CD. I did notice immediate (positive) impact when I felt gratitude and other positive emotions. But most often for me that isn’t the case. I have the impression that it takes weeks or even months for a change to become noticeable in the severity of my CD (positive or negative). I wonder why that would be…

          • CCD, I’ll put aside about HSP for now. I often do parallel reading on several books and have a big stack on my desk at home :) I wish I were a rapid or photo reader (tried but wasn’t able to master these skills) – but regular reading would be more fun than rapid reading.
            I just learned from an anxiety management book that some people use perfectionism (a type of TMA = too much activity) as a defense against anxiety, resulting in feeling overworked, having no time, exhausted, and making others feel being controlled – I wasn’t aware that I might have this tendency. And this also reminded me your Perspective quotes.
            P.S. Sometimes not easy to find the [Reply] button on this blog – I have to scroll up all the way… ;(

          • Right, I also have such a stack at home… And I am not a rapid reader at all. I also prefer to take the contents in at my own pace ;-)

            Definitely, perfectionism is a defense mechanism not to feel anxious. Try to control yourself and even your environment to such an extent that everything goes as planned, without surprises, without counter attacks from the outside world (or even the inner world). Very exhausting, very rigid.

            Sorry about the button. Nothing I can do about it, it seems!

          • CCD, in reply to your post re “Definitely, perfectionism is a defense mechanism not to feel anxious. Try to control yourself and even your environment to such an extent that everything goes as planned, without surprises, without counter attacks from the outside world (or even the inner world). Very exhausting, very rigid.”

            You have absolutely summed up the personality I had become (I am much, much less like this now – I have great news which I’ll share in more detail soon), which I discovered using the following test. I am so absolutely the “contingency planner” – always researching and planning to make sure I have everything covered so nothing goes wrong. It would be so interesting to see the personalities we generally are according to this test to see if there’s a correlation.

            http://www.humanmetrics.com/cgi-win/jtypes2.asp

          • Yes, that’s us in a nutshell!

            I have done an MBTI assessment a few years ago. The outcome for me was INTJ. It wouldn’t surpise me if CD sufferers have this type of outcome in general.

            By the way, I am very curious to hear your great news!!!

          • Having been reading your blog all the way from the start, I had an impression that you do have had a roller-coaster ride with big waves – perhaps because you’ve done different treatments rather radically than most of other CD’ers would do? I have weekly waves as well. I think we can’t tell whether recovered until we see somewhat stabilized state at least for a few months.

          • I’m astounded, CCD. We both had the same outcome on the Keirsey test – INTJ. Can anyone else do the test so we can see if there’s a correlation?

            My very exciting news is that I am so very nearly free of this condition. I mentioned at length in my last post that I decided on the spur of the moment to go vegan, wheat/gluten, fish, dairy (except cheese), egg and sugar free to see if it would solve my terrible bloating problem, which made me continually hold my stomach in which led to added backache. If anyone hasn’t read that post, maybe read it first.

            I started the new way of eating on Sunday 26th August so it has been ten days now. I cannot begin to tell you how my life has turned around. Complete 360 degrees. After 2 days I felt an incredible sense of calm and my voice became lighter and breathing less constricted. I have remained this way (with occasional bloating but not to same extent) the entire ten days. I went to a party on Saturday night and for the first time in maybe 15 years I was my old happy, light, carefree, fun self (I have been like that since 2 days after starting ‘diet’). My neck felt (and is feeling) amazing – smooth with no jerks and I held a 20-30 second conversation without my head turning. I could sense it wanting to turn but when I then felt it turning, I let out my new (semi flat!) stomach and concentrated on completely relaxing a muscle in my stomach. This in turn relaxed my neck. At the time I recognised that there must be a stomach muscle linked to the neck. I need to find out about this. So, when I stopped relaxing and it wanted to turn I relaxed my stomach completely and my neck stayed straight. It’s difficult to concentrate on letting my stomach out all the time (habit built up over years), BUT there has got to be a physical/muscular link between the two.

            Other huge improvements are:
            - my walking stride is longer and my arms are swinging much more freely
            - my Feldenkrais exercises are much, much easier – somehow my body has lost its rigidity
            - my skin overall especially on my face is 100% improved (I now don’t have to wear concealer)
            - my eyesight is better and I feel that when I look at someone I can actually ‘see’ them – it’s wierd but somehow my eyes are much clearer (I have never had eyesight problems).
            - my thinking and concentration is hugely improved – this is probably the most significant result. I used to be able to concentrate on a conversation for about 2 seconds before my mind wandered. Now, there is no effort to concentrate.
            - I can take in what people say, process it and respond appropriately, confidently and cleverly (make jokes) – I used to be talented like this, but ‘lost it’
            - I am so much more relaxed and less hard on myself. I am taking rests now when I get the urge.
            - I told two stories in a small group of people, which I would never have done previously. I managed to maintain eye contact and my language was lively and expressive – just how it used to be.
            - lost the 3 kg’s I wanted to lose (now I need to try and stay same weight)

            I was trying to think when last I was my ‘old self’ and it seems to be somewhere around before I got engaged (25) and then moved to Frankfurt within a few months for 3 months with my husband. We lived in a hotel in a very depressing area, I couldn’t work and I got severely depressed. My arm started to shake, I couldn’t handle the smallest social event and I lost all sense of myself. It took me years to function at a level I was happy with (still much more anxious in social situations than I used to be), but I never got the old me back – until now. I think getting married was a huge shock – I lost my identity and didn’t know how to behave (one of the reasons I never wanted to have kids – loss of identity). The depression was the next ‘trauma’, then my bicycle accident which flicked the CD switch. I don’t know how to say this, but even with all of that and the fact that it may have triggered my CD, my not eating (or maybe eating the *right* food) the *wrong* food has unmasked the old me which is now able to cope with life as I should be/I have regained the skills I had lost. I now have the confidence and happiness and no anxiety which means that I’m not reacting negatively and resisting (resist was my second name!), which in turn aggravates my CD. My personality now is ‘go with the flow’. I have a sense that my old self is and always will be ‘out there’, but something was blocking it.

            On another note, for a long time now I have been doing Feldenkrais exercises. I am now at the point where my rotation exercises have improved dramatically. I also believe that this has something to do with my improvement as I do feel it (not nearly to the same extent as before ‘diet’ though) if I don’t do them. They are so simple, but they really, really work for me. I do however believe that it is the ‘diet’ which has had the most significant effect (personality wise – not anxious anymore) and the exercises have kept my body supple and functioning normally. Once again they are not ‘stretching’ exercises – they re-educate your body to move the way it should (Google it).

            I summary,
            - my sense is that I have regained my old self through not eating something that was bad for me. There are chemicals(arsenic/mercury) in so many of our foods (meat, chicken, fish) that one/some of them must have been affecting me badly. I never get ill (touch wood) so I’ve always thought I was healthy and I just accepted that my sypmtoms (foggy head, anxiety, bloating etc) were just a normal part of life
            - there must be a muscle linking the stomach to the neck?
            - Feldenkrais or the Santa Fe clinic exercises are important to get your body moving naturally again and out of bad habits

            Sorry the above may be repetitive, but I wanted to get it out there now as I won’t have time for a few days. All I can say is this working for me and will hopefully keep working for me. It may work for you. It’s your decision (I’m not a nutritionist and can’t advise you) but you will know within a week. If you do want to try this then let me know and I will post some recipes to get you started and you need to watch some of the videos on nutritonfacts.org to understand what is going into food. By the way, I LOVE my food and I found this very easy, but then I had come to that point in my life where I wanted to solve my problems more than I wanted to eat those foods.

            This is a pic of me (left) before I started the new way of eating. I am shyly hanging at the edge and I can see that I’m not ‘all there’. If you knew me, you might see it. I was really battling that night – very ‘foggy’.
            http://www.virtuallee.co.uk/Alex21st-ladies.jpg

            This is a pic of me on Saturday night – my eyes are clear, I am HAPPY, confident and I am ‘all there’
            http://www.virtuallee.co.uk/Mexican.JPG

          • Hi LeeAnn,

            Very interesting story you are telling! It seems that the diet has triggered something in you to let the rigidity and dissociation (fogginess) go. Do you also have a better connection with your body? Do you feel bodily sensations clearly now, not trough the fog anymore? It is tempting to try! But I will wait a little. I am trying to gain some weight, and don’t want to change my current (healthy but non-gluten-free) diet.
            Also, it wouldn’t surprise me if your determination to change something has produced the change. Basically I believe that we can create our lives just by imagining it.

            The stomach is deeply connected to the rest of the body. Or more precisely, not the stomach, but what the Japanese call Hara. This is the center of the body, just below the navel. It is the center of gravity, and source of life energy (ki or chi). If you relax the Hara, you relax the entire body. This is how I would explain your findings.

            Striking that you are an INTJ as well. And perhaps more CD sufferers are. It requires a certain personality to develop CD after trauma, instead of becoming a murder, junkie, psycho, etc.

            Feldenkrais has been reported to be of great help to CD patients. I never tried, but I am just starting with QiGong, with some similar techniques.

            You look great on the second picture! And your friend/husband is obviously very happy as well!

            If you would have to rate your current CD symptoms, what would you say? 95% gone? Anyway, keep us informed about your progress!

            Take care!

          • Hi CCD

            “Do you feel bodily sensations clearly not, not through a fog anymore” – My mind/brain was so completely muddled before – I couldn’t see the wood for the trees and I felt so overwhelmed by everything. If someone asked me a simple question, sometimes I wouldn’t know how to respond because either I was blank or I just didn’t know or so many answers came into my head that I just didn’t know which one to pick. Now there is zero fog. I am thinking completely clearly and calmy and haven’t felt overwhelmed once – a bit stressed but not muddled in the head in the least. Crystal clear. I definitely have a better connection with my body. Things(messages/ideas) keep popping into my head about my body, i.e. this morning lying in bed I thought my neck (when stationary or moving to the side) feels ‘thick’, moist (can’t find the word) and healthy rather than thin, fragile and dry. Wierd!

            You should definitely not try this diet if you don’t want to lose weight. I’ve lost more weight and am going to have to figure out what to eat to stop it (other than more high fat cheese) – maybe avo if I can get it and coconut milk. Maybe try give up sugar though and rather eat natural sugar like honey/fruit? I’m not the expert, but I have a sense that giving up sugar is part is my recovery.
            Just read this today http://www.newsmaxhealth.com/health_stories/blood_sugar_shink_brain/2012/09/04/472336.html?s=al&promo_code=FFBB-1
            Also, I was thinking…I’m not eating any chemicals/preservatives etc as I’m cooking everything from scratch. This may have something to do with it.

            I’ve heard about chi and that it’s the core of our being. Will try read up more on this. let us know how you get on with Qigong – sounds wonderful!

            Rate my current symptoms: at my best 90% gone. At my worst 75% gone. On the whole it feels like it’s improving every day with the dd lapse if I’m stressed, which I’m really trying hard not to be.

          • Wow, your CD is really doing well! And good that your connection with your body is getting better! But I think it needs more work, as long as things keep popping up in your head all the time (o, sounds so familiar) you are still predominantly living in your head, thus escaping your body.

            I stopped eating sugar (and alcohol, and white bread, white pasta, red meat, preservatives, E-numbers, etc.) right after I got CD. And I think it has contributed to the first part of my recovery. But it made me lose weight, and I am now thinking about how to get it back without eating unhealthy food…

            I think Qigong will work the same way Feldenkrais does. I will keep you informed!

    • Hello Ann,
      yes the similarities are really amazing. I still can’t stop thinking that there can really be a very simple explication in all of that. That would be such a great thing to find it out and to help ourselves and prevent it for others. Still swimming in fjords?

      • Hi Amelia,
        Yes, cold bath and standing on rock, not every morning now when I*m back to work but as often as I can. The similarities are astonishing I think! Take care!

    • Hi Ann, thanks for your comments!

      Here is a bold statement (more of a guess actually) of mine: mothers who smoke are more likely to be unhappy or stressed and cause childhood trauma to their children (directly or indirectly).

      Me too, I stopped eating meat around the age of 12. It may have contributed to a weaker nervous system, hence a higher vulnerability to CD? Who knows!

      The feeling of not being good enough definitely stems from the childhood trauma.

      I hope you will soon take new steps in your recovery process!

  13. Hi Dolphin,
    Good to hear that you are doing alright when at home. Actually teaching is alright since I’m in controll of where I stand and sit and so, the challenge is at meetings and walking in the corridor just looking to the right.
    I haven’t got the material yet, from the STRC-clinic, but I will look for the chat-room. At the moment I just try to sleep right – not easy!
    Best regards

  14. I have found another treatment protocol that sounds interesting.
    This man is helping MS and Parkinson’s patients go into remission.
    He claims the root cause is from stress and bad posturing. The stress causes muscle tension which pulls the c1 out of alignment. It is this subluxation that causes these conditions.
    So his treatment plan involves upper cervical adjusting, stress reduction techniques, oxygen therapy, and increasing blood flow exercises.
    These are all things we all know already, such as the need for deep relaxation, and breathing better, c1 alignment, etc, but he has put it all together.
    Our cause and our misalignments of the spine are the same as ms and pd, instead we have a different manifestation called ST. But it is all the same ” tension disorder”.
    We may be able to include some of these protocols along with the STRC, it may put us into remission, which is more than a recovery!
    Some of the videos don’t work very well,
    http://www.noelbatten.com/index.php/videos/

    • Sunflower, I watched this video http://www.youtube.com/watch?feature=player_embedded&v=LeGr_REOziA and it rings so many bells with me, I can’t believe it. This guy really has hit the nail on the head. Whenever I breathe both my shoulders lift up and I find I can’t get a full breath. I’m sure that’s why I battle to concentrate during conversations – I’m not getting enough oxygen (and the constricting neck muscles are making this even worse!). What I want to know is do all CD sufferers battle with their breathing??
      I had the CD clinic in Sante fe on my list, but now I think I’m heading Down Under! I feel quite hopeful. I really think this is the answer.

      Is there anyone here who lives in Australia who could see this guy? Let’s see if it works for CD – can’t imagine why it wouldn’t.

      • Hi LeeAnn,
        Yes, he has hit the nail on the head. I don’t have any obvious breathing difficulties, but we all must have low oxygen saturation levels, other wise this would not have happened to us.
        If I had found this sooner I would have gone to seen him before the STRC in Santa fe. His method addresses the “cause” which is the c1, c2 misalignment’s. And then the other exercises he teaches is what supports the alignment of the spine (raising oxygen levels, deep relaxation, deep massage, blood flow exercises)
        So that you go into remission. I think his method will bring symptom relief much faster than the clinic in Santa fe.
        Unfortunately he is more expensive around $2500.00 if you let him video tape your progress.
        I am unable to see him right away, so I may start with some of his cd’s and e-book.
        Let us know if you are able to take the Dorn method session and what you think.
        here is my email if you’d like to keep in touch, sonya@mauiportal.com

      • Yes, almost all CD sufferers have insufficient breathing. See elsewhere on this blog.

        Wow, it would be interesting to know if his method is effective for CD. Have you been in touch with him by now?

        • hi CCD,
          It’s nice to have you back!
          He has never heard of our disorder, but I described it to him and he says it sounds just like symptoms of parkinson’s or MS. He has also dealt with all kinds of rare disorders and has had much success with putting people into remission.
          I have no doubt that it would be effective for ST. The cause is the same, subluxation of the upper cervical region. But chiropractic alone is not enough, although it is the core of the treatment.
          He says the alignment has to be supported by oxygen, blood flow, relaxation, special massage techniques, and you have to get away from the original stress that caused the tensing of the muscles to begin with.
          He sent me his price list, I have also asked him other questions over a week ago but he has not replied yet. He claims you need to follow the program for at least a year to make sure symptoms do not return. And then after that it is a good idea to see a chiropractor once a month. He over came MS, epilepsy, and bronchitis with his method and became one of Australia’s heavy weight champion, and still looks vibrantly healthy today.

          • I forgot to add that I also think SE must be practiced along with any healing program. I look forward to hearing more about this from you!

          • Hi Sunflowersprout, Thanks for your feedback! His method makes sense, it addresses the points that are weak in CD as well.

            But, last night I have been thinking about it a little more.

            FCST is also effective for other disorders, and I realized that it is especially effective in case of Parkinson’s. It is quite common that FCST helps Parkinson’s patients to get spectacularly better after just one or a couple of treatments. This is consistent with Battten’s results. However, for CD, FCST doesn’t work so fast. Having said that, my intuition also tells me that Batten’s method will be helpful. But please don’t expect the fast results he is producing with Parkinson’s.

          • I agree CCD, we may not get the fast results like parkinson’s, because our necks are sooo spastic that it just simply takes time to normalize the muscles. But I still think it could put us into remission (a real healing, not just symptom free) and I think it would give us faster results than the strc.

          • Who knows… I’m not sure. I do think that it takes time to heal CD, and that I need to avoid thinking about healing in terms of ‘fast’…
            But I am curious to know about your further findings on this!

          • CCD, I was hoping YOU would run off to Australia to test it all out for us again!
            Not this time I guess :( , I would go if I could, but not now. If he ever answers my emails I will get some of his DVD’s, and let you know. I think the combination of STRC and some of his concepts would really do the trick.

          • Not this time, no thanks ;-)
            But it should be possible to learn something from his approach at least.
            I have been thinking about oxygen therapy for some time, but still hesitant to try.
            I am trying the blue-green algae from Lake Klamath since a month. And my neck is doing really well now…

    • Hi Sunflowersprout, are you starting to look more like a sunflower now?

      This is another interesting find of yours! Did you contact him to ask if he has any experience with CD? Would be interesting to know…

      • Not yet CCD, but I will look straight like a sunflower in the near future, the tall straight evergreen tree with a face that stares at me through the window tells me so. :)
        I have waves of much improvement and just when i think it will only keep getting better, I sink back into spasm, but this is what the strc clinic told us would happen.

        How about yourself, I see you are back on the strc, how is it going? Did you loose some of your progress that you had before Korea, I hope not.

        • OK! That sounds very good! You are getting there. As for me, my neck is doing quite good. After the increased symptoms I experienced when coming back from Korea, I soon started to get better again. I think I am now at the level where I was just before going to Korea. I will soon submit a new post with more details.

    • Sunflower the Dorn method looks so interesting. We don’t have it here in Mauritius, but I’m definitely going to do a few sessions when I visit South Africa. Thanks for posting.

        • Hello dear sunflower,

          something really stupid happened to me this weekend, I’m the champ of stupid things.

          I have been trying the Dorn method during a week, I didn’t really get it. Then Saturday, oh great moment it happened! I was so happy and felt amazingly good.

          Sunday morning, everything was peaceful, in my mind, my body, my house. I was preparing meal for my family, tomatoes, potatoes, fresh mushrooms. I felt something strange in my back, I thought it was something in my pullover. I went outside because I wanted some fresh basilicum. When I came in my kitchen I felt now something on my neck I reached with my hand and threw something on the floor and I was terryfied! A really very very big spider!!! I jumped on it, it was flat as a pan cake. I had problems to breath and got so strong spasms that my shoulder hit my ear. My husband examinated me and found 2 places where I have been bitten. He had problems to calm me, after a moment he thought it was a good thing to tell me that I look so sweet that even spider want to eat me. It wasn’t the right thing to say.

          I selfprescribed me a good cold glass of chardonnay which had relaxing properties at that special moment.

          So I realized again that stress (even if in such a stupid situation) is poison for cd.

          • Hi Amelia,
            I would do the same thing if a big hairy spider was on me, it probably came in the house because the weather is getting cold outside. I am afraid this will happen to me one day!

            So do you mean that on Saturday morning the Dorn method finally worked? how do you know, what did it feel like?

            Amelia I always enjoy your descriptions of family life at home or work even when it involves a big spider…..you could be a very good writer of stories!

          • Wow, what a story Amelia! I hope that you have fully calmed down in the meantime and that your spasms have gone away!
            (Interesting thing in my case: it seems that physical shocks only have very little effect on my CD…)

    • Good findings, sunflowersprout! Speaking of the blood flow, a person with the STRC recovery state mentioned that quasha at acupuncture helped well. Also I found that some people with the recovery state does almost nothing (like Ginger) after recovery but there are others who need more work to maintain the state. Some took 3 years until recovery. Hope you are doing well. My symptoms are a roller-coaster ride.

      • Thanks Dolphin!

        Is Quasha where they work on the scar tissue with a hard metal or plastic object like a spoon?
        Abigail showed me this when I was at her clinic.
        Yes it seems to be a rollercoaster ride, fun for a while but hopefully not 3 years!

        Something I don’t quite understand about our massage technique taught at the strc.
        It emphasizes the back of the neck, but not the sides? which is where most of the tightness is, particularly on our short side where we pull.
        I feel we need to work this as well, but how do we do it ourselves? Maybe I’ll find a you tube video on HOW TO?

        A friend of mine who is a professional massage therapist works on me once a week. He focuses on my short side, he says the back of my neck is not that tight.
        He did go rather deep last time focusing on scar tissue and I think it gave me serious fightback, which i don’t think is good.

        Ginger did tell me it took her years to get to the point of not having to keep working on it. she feels she should get back into the gym and start exercising again to stay preventative.

        • Sunflowersprout – As far as I see qua-sha pictures, it looks a bit scary to me – I’m not sure if I want to try it.
          My recent impression based on my body’s reactions is that we probably need to put up with a series of fight-back (unless using Botox) in order to get to the next step until we got the recovery state. When the body get used to certain exercises or movements, fight-back stops but I also feel improvement stops as well, so the body requires to go extra miles like more stretch, new ways of movement, etc. (And for this reason, I think Botox could help for the faster recovery because it makes easy for the body and mind.) As you mentioned before, how long it will take to recover is also depending on the stress level, so we need to be mindful on it to shorten the time, too.

          • Gua Sha looks scary, but it isn’t. It doesn’t hurt at all, but shows (in our case) where the muscles are tense. The same thing happened to me with the cupping in Korea. My back was completely red (blue, purple, yellow) in the beginning, but after some time I started to feel better and there was no skin discoloration anymore. I think it would work the same way with Gua Sha.

            As for the progress and fight-back: I also believe that we need to modify the way we exercise (more repititions, more weight, etc.) in order to improve further. And this will inevitably cause some fight-back. Until we have reached the state of recovery. Then we can just maintain and even minimize the intensity level of the exercises.

          • Too bad botox is a neurotoxin, not something our bodies need at this point!
            Abigail did quasha on me, it does not hurt at all, it feels kind of good. It is to help break up scar tissue, or adhesions.
            Abigail did tell me once in recovery, we only need to do a handful of our favorite stretches, but do 10 repetitions each. She also does all of the Gym work.

          • Good to know about qua-sha – actually I’ve almost never tried Chinese medicine treatments.

            CCD, I’m looking forward to your posting a little more in detail about how you have gone through after came back from Korea and how was your observation and effect about the FCST treatments with hindsight, if you get a chance or whenever you are ready.

          • You will get the posting. I am having a bit of a hard time now, which keeps me from writing much… But I will post!

  15. Hola a todos.
    Encontré esto en un facebook de España cuyos integrantes padecen distonía. He buscado en el apartado de tratamientos y no lo he visto, por eso os lo envío, por si le puede interesar a alguien.
    No me funciona el volumen del ordenador y no lo he podido escuchar.
    CCD, al igual que se te han acabado tus vacaciones, algún día se acabará tu distonía ;)
    Saludos.
    http://www.focaldystonia.net/sp/video-s.html

    • ¡Hola Rafa!

      Gracias por el enlace. Sí, lo he visto. Otro visitante de este blog lo ha señalado a mí hace algún tiempo. Incluso compré el libro en línea. Pero es realmente todo sobre calambre de escribiente, el libro no dice nada sobre CD. Y el vídeo del hombre con DC no muestra otra cosa que el buen doctor ajusta manualmente la cabeza de un paciente CD hasta que se mantiene recta. Poco convincente, en mi opinión.

      ¡Gracias por tus deseos! Fue muy agradable verte. ¿Cómo te va mientras tanto?

      Un abrazo.

  16. Yes, i insist, for me working with the disfunctional pathway is useless if there´s no work with the anxiety that comes first (and it comes from years of evolution)
    But two things:
    1.- Talking about this anxiety (trauma for you). Before the CD comes out ussually people suffer a big period of anxiety, then the CD comes out and the anxiety increases…Ask people, how many years of anxiety are we talking about? 5 years? ten years? more? Do you know how many changes all this years have made in your brain? and in somatic experiencing usually they spent six sessions to solve this anxiety? (“…The procedure is considered by its practitioners to be effective for Shock Trauma in the short term (typically one to six sessions)…”SOURCE: Wikipedia”http://en.wikipedia.org/wiki/Somatic_Experiencing”) is dificult to belive, but could be, whay not? But been honest, if i have a problema like CD, like my doctor says is for live, no cure, and then in “Somatic Experiencing” they tell me that in six sessions i will fix that…sorry, is difficult to belive…In my opinion fixing this anxiety needs one or two years with one therapist…

    2.- Talking about diluting disfunctional neuronal paths. As you know i think that the only way to dilute that disfunctional neuronal paths is working and working, a physical exercice program with neck exercices. Why it works? because when your Cd comes out you are “learning” this bad movement, you are creating connexions betwen neck muscles and probably emotional part of the brain. The only way for me to dilute that is take advantatge of neuronal plasticity that means that if you use a function you will increase the connexions. If i do neck slow controled movements i will increase this good connexions and in the maintime i will decrease the bad connexions (distonic movements), and it runs.

    “…Another piece of evidence supporting my statement that it is not always necessary to do a physical exercise program, is the simple fact that spontaneous remissions occur all the time…”
    Yes that´s true, but as you know big part of them come back to the CD again. And for me is difficult to understand how is possible that one person has CD one day, and the other no! Are you sure that was CD? do you know what hysteria is? (http://en.wikipedia.org/wiki/Hysteria). Some people can have the CD simptoms but not organic part (bad neuronal paths and muscle hypertrofia) (so is not difficult to get over…)
    Yes of course, you can put a link to my website.
    Regards and I hope you a great improvement.

    • Thanks for your quick reply. I will add your site to the Treatments section!

      I don’t know exactly why you insist that work needs to be done with the anxiety. Me too, I emphasize that the trauma is the root cause and that working with trauma will allow resolution of the symptoms.

      By the way, we need to be cautious about terminology: the trauma happens first, and the anxiety comes later in life, as a consequence of the trauma. Anxiety is completely different from trauma. I have tried to sketch this mechanism (based on the work of Dr. Scaer) in the Perspectives section of this blog.

      And yes, I repeat: I think, and thus agree with you, that most people will need to do physical exercise to resolve the issue. But not necessarily. It could very well be that, from the perspective of the brain, the symptoms arise from a procedural-memory defect. (Again, see the section Perspectives). So any method that addresses the procedural memory will do the trick – again, from the perspective of the brain.

      The survival energy that gets stuck in our bodies upon freeze response (again, see the section Perspectives) will leave an imprint in the brain (i.e., the procedural memory), but also in the body. Therefore, releasing this energy from the body, gradually, by titration, allows to remove the trauma and its negative consequences.

      Somatic Experiencing is suitable for that purpose. In the reference that you found, you saw the following part:
      The procedure is considered by its practitioners to be effective for Shock Trauma (see below) in the short term (typically one to six sessions). It is also considered effective for Developmental Trauma as an adjunct to more conventional psychotherapy that may span years.
      If you read this carefully, you will notice that one to six sessions are typically required for shock trauma. (And in that case EMDR is often equally suitable.) However, for developmental trauma (i.e., childhood trauma!) the treatment may span years. So we are talking about the latter. I have started SE in November 2011, and am still working on it. For developmental trauma, EMDR isn’t suitable. Only SE is. And perhaps Brain Spotting, a new therapy from the US.

      So I think it is worthwhile to learn about what trauma actually is, what kinds of trauma exist, how trauma affects human life, and how it can be resolved.

      I appreciate your suggestion that people who experience a spontaneous remission, have conversion hysteria instead of dystonia. But I cannot believe that. When I was in Spain a few weeks ago, I have met someone who has experienced a spontaneous remission 8 years ago, and who now suffers from CD again. What he has is dystonia, I can guarantee that. In many ways, he is similar to me. And if you read the other contributions on this blog, you will find that most of us have moments when we are free of symptoms. Especially when we feel very good (about ourselves, or about what we are doing). I have also experienced that several times. So those are mini spontaneous remissions, during which everything feels normal! To me, that is the proof that the solution is within reach. And if you ask me, the most fundamental solution (for any symptom) is: letting go, being yourself, loving yourself.

      Take care and stay tuned!

      • Yes you’re all right, i didn´t insist to much in trauma because lot of therapist do that in many ways. You can have a lot of books that talk about that in psichology history. You can find easyly therapists that do that. But i never found a theory that explains to me how heal CD. I only found years ago this sentences in one book: “…some pacients say that they heal their CD with comprehensive practice of estrange exercices…” i never found again this sentence. That´s why i´m more interested in CD simptoms. Because, in that i don´t agree with you, i think that if you heal your trauma, your CD simptoms will stay there, in my opinion…your CD is neural conexions and muscle hipertrophia, healing the trauma doesn´t fix that. That´s there, is fisical. A good therapy has to involve trauma and CD simptoms. And for the pacient is very good to have some work to do at home, they have to be a big part of their recovery. Remember, i´m talking about totaly recovery, not a “little better”, or “today i´m good” or… I´m talking about do windsurf, run, talking with two people (one in my left, other in my right), driving and talking (turning the head)…

        “…By the way, we need to be cautious about terminology: the trauma happens first, and the anxiety comes later in life, as a consequence of the trauma. Anxiety is completely different from trauma. I have tried to sketch this mechanism (based on the work of Dr. Scaer) in the Perspectives section of this blog….”

        Yes, i agree with this sketch. For me first is trauma, after anxiety and dysfunctional thinking that increases the anxiety, and finaly CD (for us)

        “The survival energy that gets stuck in our bodies upon freeze response (again, see the section Perspectives) will leave an imprint in the brain (i.e., the procedural memory), but also in the body. Therefore, releasing this energy from the body, gradually, by titration, allows to remove the trauma and its negative consequences” this is that Sigmund Freud said, but with sexual energy instead freeze response. And i agree with you, but i think you need a little more, the “physical-mental exercise” in my opinion.
        And indeed the criticism he received (Freud) was the duration of treatment, the relative ineffectiveness and that the pacients went to his illnes again and again…
        I agree the others things that you wrote but for me the most fundamental solution in CD is: solve your trauma, check your dysfunctional thinking and work, work and work with your neck.
        Regards!

        • Well, I think that the body-mind continuum really is a continuum. So if you have a trauma, this is a mental things as well as a physical thing. The survival energy is stuck in the body. If you remove it from the body (and then also from the mind, of course), the body will be able to function normally again. To me it would be very unlogical that the body is still disfunctional after resolving the trauma. Also, the evidence as seen by Dr. Scaer confirms this: once the trauma is gone, the symptoms are also gone. But we can gladly agree to disagree on this point.

          By the way, how are you doing now? Do you still have some tremors and occasional spasms, or hardly anything? And do you continue to do exercises, or did you completely stop?

          • “…once the trauma is gone, the symptoms are also gone…” i partially agree with that. If we talk about palpitations, sweating, hyperventilation, dizziness… i agree with you (and Dr Scaer), but in CD we have created a new structures, your body has fisically changed, that´s a cronical condition that for me need more than solve the trauma. But as you say we can gladly agree to disagree on this point.

            When you touch your face you are free of simptoms isn´t it? no pression, no spasms, no need to swallow, no tremor, no pain… I´m 99% like that (like before CD). This 1% today was when i call my sons to sleep and they don´t want, i had to simulate anger, then my neck has tightened more than has to be. But only I can feel that, and it´s only one second, that remins me that years ago i had CD.

            Now i do five or ten minuts exercices per day.

            And you? how are you?

          • I maintain that it is possible, supported by what Dr. Scaer has observed and by the occurrence of spontaneous remissions. Also, the esistence of the sensory trick supports it: CD can be switched off in a moment. But no problem to disagree on this!

            Wow, your situation sounds really good! Let me ask you something else. Do you do everything in life that you want? Also things that could cause a shock/trauma to the body? Running, skiing, surfing, boxing, etc.? And since your recovery, have you experienced any serious shocks – either psychological or physical? If yes, did it trigger or affect the CD symptoms?

            The reason I am asking this, is because STRC recommends to avoid any shocks to the body after recovery, because these could cause the CD to come back completely! Also, activities where the head is held backward (cycling, swimmming, etc.) are banned. And the posture should be correct always.
            I am curious to hear your points of view!
            And a last question: have you every seriously integrated a healthy diet (to avoid acidity in the body) and massage therapy in your recovery program? Or did you continue to eat sugar, drink wine, etc., without massage?

            As for me, I am doing okay. After coming back from Korea in July I had increased symptoms, but I just continued with the exercises from STRC, and now I am doing pretty well. I can keep my head straight when sitting, standing, talking, typing, etc. I can walk a little with a straight head, but then the tension strongly increases. I can drive my var without too many problems. I can speak with two people at the same time, sitting on both my right and left. I always feel the tension and turning my head to the right is often a but hard. But I am not suffering much at this moment. And it is still improving. Alongside this, as I told you, I am doing Somatic Experiencing on a regular basis.

            Looking forward to hearing from you again!

            PS: I have added your information in the Treatments section

  17. Hi LeeAnn,
    It is too hard to find the reply button, so I am starting fresh at the bottom it will be easier for everyone.

    I am a little in shock right now,so I am not going to say much, except this is very wonderful and incredible news for you, and very inspiring for the rest of us.
    I hope the CD goes away completely this way. Are you sure you have CD to begin with? It sounds like it was very mild anyway.

    That would be interesting to know if there is a connection with a stomach muscle and the neck. I too get bloating from food, I think I will get serious about repopulating my intestinal Flora (good bacteria) through fermented foods.
    You should too, that will probably completely eliminate your bloating and your CD?
    Please post more about diet maybe recipes when you have time.

    I still think it’s the atlas problem for me……..but is there a connection between the stomach and neck?, …….mmmmm

    • Hi Sunflowersprout

      I completely understand that you want to double check that I have it in the first place! I’m 100% certain that I have it. I’ve had it since my bicycle accident and it was diagnosed and the amount of activity (front right “scm”, I think it’s called and back left neck muscle) measured by a neurologist in March this year. He took one look at me and could see the front right muscle instantly – much bigger than the left. I will try and find his ‘activity’ measurements.

      Bloating
      Interesting that you also suffer from this and that you mentioned to your Mom that you thought there might be a connection. I am absolutely convinced about this. I’m going to ask my cousin who’s a physio in Australia and my Feldenkrais practitioner when I see her later this month. Yesterday I became a bit stressed as I had lost a Fedex slip for some important documents that I posted but never arrived and my husband was on my back about it. My breathing became worse (had to take more deep breaths), although nothing like it used to get, and my neck felt worse than normal (but much, much better than it used to before “diet”). I had a sleepless night, which made my breathing worse. Fortunately I found the Fedex slip and will see how I am tomorrow after a better nights sleep. Despite this, I am still *hugely* improved since the “diet”. I agree that it is a vicious circle. In my case my circle is possibly this: I get stressed by something (as per my INTJ personality type according to Keirsey test), due to stress my deep breathing increases which leads to bloating (deep breathing also causes bloating so I’m trying to see if it’s the food or stress/deep breathing), in turn I have to hold my stomach in because it’s so bloated, holding my stomach in makes me tense and affects my neck (because when I relax stomach completely it eases neck). I’m really trying to monitor this and ‘tune in’ to signals and messages my body is sending to get to the bottom of this, but I really think there is a link (at least for me).

      Please let me know more about what fermented foods you eat. Interesting! I haven’t heard of this and it may be the answer to my ‘food bloating’.

      C1/C2
      Re “before you got better you were really excited about Noel Batten’s healing program in Australia. So can I ask, is this because you know you have an Atlas (c1,c2) misalignment? and do you feel your Jaw alignment is also a little off from the CD, pulling it off?”. I do sense that it’s also something to do with c1, c2 misalignment. A chiro told me about 2 years ago that I have 100% forward head. I’ve been doing the Feldenkrais exercises plus a few extra Natascha gave me for fwd head and neck rotation (think all on her video) every day and as prev mentioned my rotation is hugely improved. I think that this has all happened simultaneously. I do however think that even if you haven’t been doing Feldenkrais/ST Clinic exercises, that the diet will have a positive effect, but you may still need to then focus on doing rotation exercises. When i used to hear about so many therapies that could be tried, I became despondent. Please don’t get despondent by thinking that if you haven’t been doing the exercises, but do the “diet” that it won’t work. You need to be believe that there will be a positive improvement – maybe not as drastic as mine, but then hopefully you only have to do the exercises and you will be much, much improved. I am not cured by any means, but dramatically reduced. Think of those good days or moments you have when your CD (for some unknown reason!) is marginally better – your mood increases hugely. So, even if you’re not 100% cured any improvement no matter how small will make you so much happier/less stressed and in turn have a positive effect on the CD.
      I don’t know…it’s working for me. I would be so interested to see if it helps anyone else. I’m starting a blog so I can post some great recipes so I don’t clog things up here. Will try add a few today.

      Keirsey personality test
      It would be so interesting to see what personality type other CD’ers are according to the Keirsey personality test. We need as many CD’s as possible to do it to see if there’s a correlation. It is seriously accurate – me and my husband to a T! I find it a big coincidence that CCD and I are the same personality type. It’s a rare personality type and maybe that’s why this is quite a rare condition and why others who go through trauma don’t get this. Reading about this personality type yesterday is helping me recognise when and why I get stressed and is helping me understand my character. My husband was bugging me today and normally I’d get completely stressed because I’m busy (so called “busy” – busy with this!), but because I know that it’s my personality to get stressed when I have unfinished things to do, I was able to calm myself down and let him distract me for ten minutes rather than get hit up. What’s also interesting about this personality type is that we very much need ‘time out’ to regenerate ourselves. One probably thinks everyone does, but I know I def need it more than most. I can’t normally handle more than one social event over a weekend without ‘resisting’ and feeling like I’m being forced to do what I don’t want to do. Thinking about it now though – the way I feel now – I feel like I could easily handle a lot of social interaction. In fact we have organised a HUGE barbecue for Sunday and normally I would be completely stressed out and ratty. Instead, I’m completely relaxed and looking forward to it.

      I just hope and pray that we are onto something. We are the ones suffering with this, not neurologists. We have to tune in and listen to the signals our body/mind give us and make a note of them as they could be the key to easing it or even curing it.

      • Hi LeeAnn,
        You are fun to have around, because I’ve noticed you are always so excited about everything! it’s fun to read your posts :)

        I am already on the diet, have been for most of my life. Although the last 2 months I have also been strictly gluten free. I read somewhere on line someone was cured of CD going gluten free for 8 months. And I know I have a gluten intolerance.
        Fermented foods are things like sauerkraut, Kimchee, Kefir (fermented yogurt type drink)
        It’s best to make these things yourself so you know the bacteria culture is “Alive”. You Tube will show you how to do it, it’s easy. I’m making some sauerkraut today! Also if your still eating cheese it’s best to eat RAW Unpasteurized, much healthier for you.

        Well you may not be 100% cured, but like you say, anything that makes the neck better really helps our moods and stress levels and has a positive effect on our Cd. Since you are so much better now and your CD is mild to begin with, you will recover/ heal fast through the STRC or Batten’s program.
        I will look into feldenkrais method, thank you!
        My chiro also said I have the beginnings of a forward head. The reason we all have this is due to our tight muscles straightening out the natural curve. We no longer have the natural curve, so our straightened neck juts our heads out.
        Part of Batten’s program is getting the natural curve back, as a straightened neck also prevents normal nerve signaling.
        i highly recommend you try to get your atlas adjusted by an upper cervical chiro.
        Regular chiro’s make us worse, don’t let them crack your neck, it pulls the c1,c2 our even more. Only let them use an “activator” tool on your neck. Watch You Tube video’s on “Atlas Orthoganol” I think you’ll get excited about it!

        You have convinced me to take the personality test…..I will let you know.
        Have a good night sleep! :)

        • Thanks for your kind comments, Sunflower. It means a lot to me to be called ‘fun’ after so many years of feeling dull, ‘heavy’ and weighted down.

          Gluten
          I’d be interested to see the effects of no gluten/wheat on you. Just because I haven’t by process of elimination seen if it’s the wheat/gluten that’s made the big difference, but if this is the only thing you change then we will see. Interesting that you say that someone was cured by giving it up. This article was at the back of my mind when I gave all the foods up http://www.newsmaxhealth.com/headline_health/Heart_Wheat_Health/2012/08/10/467895.html?s=al&promo_code=FB7E-1

          Thanks for reminding me re the cheese. I have no idea where I’m going to get raw unpasteurised cheese here (Mauritius) :( I’ll utube the fermented food recipes.

          Curve in neck
          So interesting that you said your have lost the curve in your neck and that this prevents nerve signalling. That’s what my Feldenkrais practitioner told me. I’m going to google Batten’s Method. Please let us know how you get on with it and the degree that it was straight and then the degree to which it has improved.

          Atlas Orthoganol
          Very interesting, but where would I find that here? :( If you try, let us know how it goes. I agree about Chiro’s. I saw one for about a month and was at my worst at that point. I was also doing a gym class and thought that it was that, which it prob was but the chiro may have exacerbated it. Anyway, I don’t like it because it’s a ‘quick fix’ (you have to keep going back to get readjusted – she was honest and told me she would never be able to cure me). I’m looking for something that I can do myself that’s sustainable that will eventually heal me. All the things I’m incorporating into my life are good things for my general health & wellbeing (not necessarily aimed at healing CD) and are sustainable (eating right foods (for me), walking every day, Feldenkrais exercises, fitting in things/hobbies that I love, saying my ‘Zero Limits’ phrases and so many other things I have figured out/adopted!) and I will keep them up for life/as long as I’m able to. Having CD has been a valuable lesson (can’t find the right words) for me because it’s forced me to look at so many areas of my life and personality that I was neglecting and try and improve them. I feel I have grown as a person through this and have no doubt in my mind that I will heal.

          • Hi LeeAnn,
            Your welcome!
            Today’s wheat is not the same as what generations before us ate, like the article says. It has much more gluten in it, our digestive systems are not equipped to handle it. It is not Natural.
            For those of us who are gluten intolerant it can be neurotoxic and cause neurological disorders. Although I don’t really think it caused my CD.

            I am not at the moment trying to get my natural curve back yet. I am on the STRC program and according to this we are not suppose to arch our head back. But eventually I
            will, and eventually I will go on Batten’s program.

            I have already done a lot of Atlas Orthoganol and i find it amazing. It is a very NON TRAUMATIC way of adjusting the neck, there is no cracking! It is all done with “tools”. I am going once a week at the moment, so my spine doesn’t get too out of wack from the CD. I went yesterday and today I feel amazing! My pull to the left has decreased by 40% since yesterday and I feel healthy and alive and very energetic. I feel very Straight, but it won’t last all week because the muscles are too tight and will pull it out. I have found several cases online of cd cured this way, but yes it may take a while and you have to keep going back to retrain the vertebrae.
            I went on Google maps to see where your little island is. Yes you may have a hard time finding unpasturized cheese there and atlas orthoganol ;)
            Looks like it is a beautiful place to live!
            You are doing so many healthy things for yourself, I applaud you! My advice to you though, since I think I have had this condition a little longer, would be to start on the strc or batten’s program soon, because often times the condition worsens and you don’t want that!
            I have also grown immensely as a person as a result of this condition, I think we all have here on this blog! :)

      • I think that what you did, basically is that you decided that you would change your life, your attitude. To be honest, i.m.h.o., I find it hard to believe that this is all due to the diet (or due to C1, or oxigen, or Feldenkrais, or whatever). It is as though you have let go of the rigidity, thus creating flow in your life and in your body. I think you used the law of attraction to achieve this. See:
        http://www.successconsciousness.com/law-of-attraction.htm
        Let me know what you think about that.

        As for INTJ, this is the description.
        I – Introversion preferred to extraversion: INTJs tend to be quiet and reserved. They generally prefer interacting with a few close friends rather than a wide circle of acquaintances, and they expend energy in social situations (whereas extraverts gain energy).
        N – Intuition preferred to sensing: INTJs tend to be more abstract than concrete. They focus their attention on the big picture rather than the details and on future possibilities rather than immediate realities.
        T – Thinking preferred to feeling: INTJs tend to value objective criteria above personal preference. When making decisions they generally give more weight to logic than to social considerations.
        J – Judgment preferred to perception: INTJs tend to plan their activities and make decisions early. They derive a sense of control through predictability, which to perceptive types may seem limiting.

        From the above, it seems plausible that INTJs are likely to get CD after trauma (instead of becoming murderers, psychos, junkies, etc.).
        Being introvert enhances the effect of locking the trauma energy inside.
        Being more abstract than concrete promotes the urge to look at the big picture, to make rational decisions and to deny inner impulses.
        Thinking more than feeling doesn’t help to get in touch with the body, nor to release some of the trauma energy.
        Judgemental characteristics are perfect to rigidly control your life and yourself.

        So that yields a perfect substrate for CD.
        What do you think?

        • CCD, re Law of Attraction my sense is definitely not. A year to 6 months ago I read A New Earth, The Secret, Wishes Fulfilled by Wayne Dyer and Zero Limits. The books were amazing and I really felt completely ‘in the zone’ while reading them. The synchronicity in the Wayne Dyer book was incredible and I felt completely ‘pumped’, full of energy and inspired. The day after I finished the book I painted what I call my first ‘real’ painting (I had painted 3 paintings 6 years before – self-taught) but this was the first still life I had created http://www.artlimited.net/image/en/404430 and for the first time in my life I felt like I had a talent and wasn’t stupid. I’ve done lots of paintings since and it feels amazing, but it didn’t then and doesn’t now affect my CD in any way – it definitely makes me feel happier though. I have also been using the Law of Attraction for a long time, but although it works sometimes it’s not had an effect on my CD. What also makes me think it’s not the Law of Attraction is that my intention when I started the diet (I couldn’t see the wood for the trees at that time) was just to sort out my bloating, which hopefully in turn would ease my breathing so I could at least catch my breath. There was so much going on, that I just wanted to start at the bottom to sort that out – I didn’t start it with the intention of curing my cd, but I did know that doing this might possibly have a positive effect if those things were eased. To me the positive effect on my *personality* (clear head, upbeat, vibrant, no social anxiety, chatty and confident) is directly related to eliminating or including certain types of food. It has to be as it was the only thing that I had done differently (other than using coconut oil as body cream) and it happened 2 days after I started. I was completely floored when I went into the city 2 days after I started the diet to find that I had this immense sense of calm, my neck felt more relaxed and I had much less social anxiety. I never imagined it could have such an immediate effect. Maybe in a week or so, but not in 2 days.

          Re INTJ personality type, it all rings so many bells. On this mornings walk, I was thinking that the new ‘diet’ has changed my personality so that I am (hold thumbs it lasts) more extrovert and this is helping my stress levels (less social anxiety). I think the personality test is key to our condition because if we recognise these 4 traits we have (you and I have), we can either work on ways to make them less extreme or at least if we recognise these tendencies within ourselves we’re able to temper them and relax about them a bit more or at least laugh at them when they happen. This leads to less stress = less symptoms.

          “Only ideas that make sense to them are adopted; those that don’t, aren’t, no matter who thought of them. Remember, their aim is always maximum efficiency.” (Keirsey – INTJ personality). I think the ‘maximum efficiency’ is key for you and I with this personality type. We try to come up with solutions for every possible scenario (and back-up plans), do maximum research and planning to avoid inefficiency and ultimately stress!! i.e. when planning my diet for week one, I researched recipes for an entire day (with prob one break the whole day) and meticulously planned cooking times and what I would need to buy/soak etc each day. To me that makes complete sense because I’ll avoid unnecessary stress when I get to making lunch and find I don’t have an ingredient. Everything we do is in an effort to avoid a negative outcome. When something negative happens we immediately say next time I’ll do it this way to avoid unnecessary stress. I always say I’m a “McGyver” because I always have a back up plan or make a plan to avoid negative outcomes = stress! Maybe because we know we don’t handle stress well? I thought everyone was like that, but my husband always laughs about it and thinks it’s much more obsessive than ‘normal’ (my Dad is much worse). I like to take the easy road (no sense in unnecessary stress), but I’m happy to take the hard road and suffer if it will lead to the easy road eventually. I don’t know, maybe I’m still looping inside somewhere because I had the bicycle accident and I can’t go back and take the necessary steps to avoid it. When I think about the accident I get frustrated thinking that I should just have taken my sunglasses off (in the shadows) and then I might have seen the pot hole and not had the accident and this wouldn’t have happened – it frustrates me that I hadn’t thought of that. This condition is the one thing that we have that we are battling to solve. We’re obsessed with finding ways to stop the continual neck pulling. Maybe I’m more at peace because I have a system in place to control it = less stress.

          Re “Only ideas that make sense to them are adopted; those that don’t, aren’t, no matter who thought of them. “. I love this and can so relate to this. Maybe this is why you and I with this personality type refuse to go the Botox route. I have absolutely nothing against having Botox for CD or beauty reasons – whatever works for you. I’d def have done it if my condition had been worse (hey, maybe I’ll even ‘iron’ my face when I’m older – who knows!). To our way of thinking it doesn’t make sense to us for this condition (even if recommended by an expert “no matter who thought of them”) because it will only mask the symptoms, not cure it and we need to find the answer to avoid it completely so we never have to deal with this problem again. We need it done & dusted and are frustrated that we have to continually deal with this unfinished problem, which is continually looping!!

          • Wow, you produce a lot of text ;-) And nice paintings by the way! Please allow me to give you my feedback and opinion.

            First of all, I am convinced that we continuously use the law of attraction, for everything that we experience. I thought that with the diet you might have done it consciously, but apparently you didn’t. Yet I still think you used the law to experience your current relief. No one else did it for you…

            Regarding the personality type, please be careful that you don’t continue to control yourself and steer yourself where your head has decided that you should go. That behaviour is what made us ill. So don’t try to change your personality and don’t analyze the dimensions of your character in order to make them become something else. It won’t work. Just accept and love yourself the way you are. Listen to your body, to your heart, and go with the flow instead of rigid control.

            The solutions, research, planning, contingencies, etc., sound so familiar to me. But they aren’t helpful. We have to realize that they are standing in the way of becoming whole again. Don’t understand me wrong: those are qualities that we have and should use in our lives, but not to the extreme extend that we apply them to avoid painful experiences and to escape from our traumas.

            Because that’s the core of the issue: trauma. We are looping inside the trauma, the stress – frozen due to the freeze response. Solve the trauma and you will be able to fully re-engage in life. Don’t fight against the trauma, but accept it and release it. And that is what you are looking for. Otherwise you would have taken Botox and wouldn’t be on this blog.

            I hope this makes sense!

    • Hi Sunflowersprout

      Just wondering how your gluten/wheat free diet is coming on…Here’s a link to my (very basic) blog with some of the recipes. I’ll add more as I go, but these are some of the good ones http://leeannalive.blogspot.com/
      I went off my ‘diet’ on Sunday (beer, beef, fish, dairy, eggs, sugar) when we had a huge barbecue, but am back on it as I felt quite down yesterday and my breathing got worse. I’m back on it since lunch yesterday and my breathing is feeling better. By the way, my personality stayed exactly the same at the barbecue – zero social anxiety and no stress (felt happy, and fun) despite there being 30 people, which is amazing for me as I usually battle my way through the day and can’t wait for it to end. My husband was amazed to see that I didn’t become aggressive after a few drinks – I just felt calm and happy. I don’t know what it is – all I know for now is that I have to stick to this!

      • Hi LeeAnn,
        I was wondering how your party went.
        I’m glad it turned out great, and that your
        personality stayed the same!
        My gluten free diet is going great. I feel very healthy except for the CD, this drags me down.
        My husband and I made a new recipe last week, it was delicious, (it’s vegan)
        Have you ever heard of falafel’s? it’s a mediterranean vegetarian chick pea patty with tahini sauce (sesame seed butter sauce). Let me know if you want this recipe, and how I should give it to you.
        I will visit your blog and try some of the recipes!

        • Hi Sunflower

          So glad to hear your gluten free diet is going well :) I lived in Israel for 8 months and falafel is one of my favourite foods, however I would have no idea how to make it – love the recipe!. Let’s communicate via email at [email address removed] (CCD could you maybe delete this post or remove my email address – thanks). I’d love to get some meal ideas from you and hear more about how you ferment foods. I googled it, but would love to ask you some questions about it before I try.

  18. LeeAnn,
    I have a question for you, before you got better you were really excited about Noel Batten’s healing program in Australia.

    So can I ask, is this because you know you have an Atlas (c1,c2)
    misalignment? and do you feel your Jaw alignment is also a little off from the CD, pulling it off?
    Your story is very exciting……Thanks! ;)

    • Sorry about another post…….I was remembering exactly a year ago when my ST symptoms began to be a problem. I was in Canada visiting my family and i remember telling my Mother that I think I have figured out what is causing my neck stiffness.
      I told her : I think I am not breathing enough, and so I would do some deep breathing and then the symptoms would go away temporarily…….Since then, because of the ST, I seem to always feel anxiety and it is very hard to breath, and the neck problem, causes stiffness in the body which also makes deep breathing difficult.
      It seems to be a viscous cycle! It would be interesting to know what all of our oxygen saturation levels are. Obviously getting in enough oxygen is one of the keys to healing.

  19. Yes, the sensory trick supports your spontaneous remissions theory. I have no explanation for that.

    You can ask that you want.
    “…Do you do everything in life that you want? Also things that could cause a shock/trauma to the body? Running, skiing, surfing, boxing, etc.?…”
    Yes, i do everything in life that i want. I’m 45 yo and i’m a good swimmer (i do long distance races)(1500 mts, 2000 mts.) (i’m not the first, i’m not the last, i do that only for enjoy myself), i do windsurfing with light and hard wind, i run helping my children with the bike, football…all absolutly normal. All phisical exercice is easy. For me the problem is social issues. I’m extremely shy from my childhood (obiously my CD commes from there, but started in my 24th). So if i can, i avoid meteens with to many people. I’m not confortable, but like before my CD, nothing has changed. I can talk with people, i can look at their eyes, i can share experiences, no neck problem.

    “…And since your recovery, have you experienced any serious shocks – either psychological or physical? If yes, did it trigger or affect the CD symptoms?…”

    Physical shocks a lot, try to do windsurf with 25 knots. Maybe three or four per year (last ten years)
    Phychological shocks: CD is a very very big shock, so the thinks that happen to me after CD recovery were not really important. But if you want to know i suffered a breakup with my girlfriend.

    “…did it trigger or affect the CD symptoms?…”
    Thats the point. If you have a spontaneous remission two thinks happen:

    1.- is spontaneous, you don’t really know why yesterday you were bad, with CD, and today you are free of simptoms. Do you really understand what happen?

    2.- You still have a big muscle, and some bad conexions from your emotional brain to your muscle.

    That’s because people who have and spontaneous remission go back again and again to the CD. Obiously all that is my opinion.

    What happen to me? I had CD in 10 (just supose), i started training and training…after one year I felt my CD in 8…after other year training in 6…now i’m in 0.1, 0.2. So in all this years i NEVER go back from 5 to 10 again. Maybe from 5 to 6, but only for a few minuts or situations…Really if i’m honest i’ve no fear to get again my CD, because i’ve solved my trauma, i’ve identified and changed dysfunctional thinking that commes whit the trauma and anxiety, and DILUTED MY BAD NEURONAL PATHS (i can’t go back, i have not brain structures to get again my CD).

    I never had any special diet. I eat all. I don’t eat very much meat and suggar and i like fish and vegetables and fruit and pasta…no diet, only common sense. I don’t drink too much and i don´t smoke. No massage therapy (for me the important think is the disfunctional neural path, not the muscle)
    I hope you will improve soon.
    I saw the information that you have added, thanks!

    • Hello Jordi,
      You mentioned that “No massage therapy (for me the important thing is the dysfunctional neural path, not the muscle),” which I thought intriguing. If you didn’t work on muscle, you didn’t have any fight-back (muscle’s bad reaction) from the exercise or training? Did you do these hard activities (running, biking, etc.) when you had CD symptoms, or you started to do them after recovered? How did you handle work life when you had CD? I’m asking these questions because I have hard time with muscle fight-back from exercises and correcting my posture as well as commuting and work life that cause stress and require fast movements (running to catch a train, etc.). Best Regards.

      • This was one of my big errors too!
        WHEN YOU HAVE CD ALL THAT YOU DO (exercices, driving, socializing, working…) GOES TO THE CD INCREASING THE SIMPTOMS! When i realize i stopped all my activities. No swim, no run, no football… I tried to stay all day at home sitting in my sofa supporting the head and my neck. I only use my neck to do the propioceptive exercices. Even i wear a necklaces during three months to avoid spasms. I was 24 yo so i was in my parents house.
        After three months i took off my necklaces because my head was straight, no spasms to the right when walking. Obiously i had pain, tension, spasms in to many situations…but i keept staying in my house doing propioceptive exercices without any other activity.
        I started usual activities after six or eight months (work, friends…) but not hard activities like running, swimming…
        “…How did you handle work life when you had CD?…” I was swimmer instructor then. I left my work. I don´t left my studies (psychology) so i went to the university with my necklaces.
        Conclusion: avoid all activities if you can. If you can´t…a necklaces helps, but you have to be sure that your treatment will work, is not safe to wear a necklaces for a long time.
        All that i said here is not a treatment for anybody, is only my opinion.

        • Jordi – Thank you for sharing your experiences and perception. I agree that many activities affect and increase CD symptoms. (I wish I could just stay home for a while, too.). Your concepts of curing CD inspired me so I changed some perspective and approaches to cure. All the best for your CD-free life.

          • Dolphin,
            I think the reason why Jordi never mentioned “fightback”
            Is because he did not have any. I briefly googled prioceptive exercises and it is completely different approach from the STRC.

            STRC program is all about stretching and elongating the neck.
            The prioceptive exercises are movements that actually retrain the brain. so it’s not about the muscle.
            Maybe this is why he can windsurf, swim etc.
            This is what I am thinking anyway, it is more of a cure than a recovery from systems.

          • Sunflowersprout, I totally agree – I was thinking about the same thing. The STRC’s targets just on-going recovery vs. his approach targets cure. To be honest, I’m so sick of fight-back and the concept of giving up with many activities I like rest of my life. Though it may be true that fight-back and massage may accelerate recovery, I think his approach somehow clicks me more even if it takes time and needs more patience and self-discipline. It seems it focus on fundamentals and applies common sense – nothing extreme or magical. That’s why I was I changed my perspective to the STRC concept and approaches its exercises – I’m back to basic.

            Remember, you mentioned before that Ginger can get tired easier than other people? That sounds somewhat a warning sign to me – it’s not totally healthy or natural for the middle age. Me too, I get more tired since I started to focus on the posture all the time because it requires using “fatigable” muscles fibers instead of “non-fatigable” muscles fibers (from the AT concept).
            Take care!

          • Dolphin,
            I get tired of fight back also. Actually I don’t even remember what it was like before stretching anymore.

            But STRC is all I have for the moment and it will work eventually.
            What do you mean you are going back to basics? are you giving up on STRC?
            On a positive note, this blog has found other real options for us to try when we can. Maybe Jordi has a long distance dvd like STRC. ;)

          • Sunflowersprout, oh, no, I haven’t given up on the STRC. I do pick ideas from here and there from the STRC, books, and websites (I do appreciate CCD for organizing this blog). As for the STRC, it is certainly very helpful, but I modify a lot to the way that works for me and cut back a lot of work form the program (time limit is one of the great factor). To me the basic is the AT, which is more natural and permanent. There is a conflict of the concept between the STRC and the AT in the first place. The STRC largely focus on the muscle work while the AT is against any forceful movement (tai chi as well).
            I will reduce adding intensity of STRC exercises that focus on elongate the muscle thereby causes fight-back, but instead I’ll focus more on the movement itself – instead of changing the muscle shape, retraining the brain with repeated slow movements. It will take long time. It’s also still very hard for me to accept the STRC recommendation of staying away from certain activities (swimming, biking, zumba, roller-coasters, etc.).

            Yes, it would be nice if Jordi offers DVD’s.

            PowerPlate seems interesting in terms of working with neurological disorders – it looks like to me doing yoga on a vibrating plate. I’m not sure why the vibration works – it’s a new concept to me.

          • Dolphin, great , you customized the strc for your own body. I also had to change or eliminate some stretches that did not feel right.
            I will have to look into AT or feldenkrais, it sounds very helpful, and natural.

            I will still be swimming and biking, that is for sure, only a little modified.
            And maybe we can retrain the dysfunctional neural pathway like Jordi!

          • Sunflowersprout,
            Finding what is my dysfunctional thought process and how to fix it is another challenge to me. I have considered seeing a counselor though I’m not aware of major issues in psychological matter (including trauma), but I eventually decided to buy and read related books since I figured out that I couldn’t take a series of time off of work every week for it. And would try SE again. Have you worked anything on the matter? You mentioned before that Ginger recovered when she resolved anxiety issue – do you know how she worked on it?

            I now include some of Jordi’s exercises in my routine (far from 3 hours a day, though), and I found it this simple movement of turning the neck left and right isn’t easy for me at all (one side is stiff, another side is pulling) even when I’m standing or sitting still – no wonder I have difficulty walking straight. I think this exercise helps correct dysfunctional neural pathway :)

          • Hi Dolphin,

            Ginger went on medications to help her with anxiety. Her feelings are pro medications if you need them.
            i suffer from some anxiety due to the CD. I read an article on the herb “passion flower”. It is a muscle relaxant and is helpful for anxiety. Another funny coincidence, yesterday at the healthfood store I needed a muscle relaxer for monthly female cramps. So I bought passion flower by “herb pharm”. It worked!! My cramps went away, it helped my neck and best of all it resolved my anxiety!
            And it tastes good like a flower! I will continue to use this, whenever I feel anxiety coming on.

            No, I have not seen a counselor.
            I feel like I know all of the reasons mental and physical, why I got CD.
            I feel like I have somehow automatically resolved the mental/emotional reasons for getting CD. I am a completely changed person since having this condition.(for the better)
            Yet, like CCD i feel like I have the stored freeze response/trauma that I need to release and I am hoping that the SE will do this for me.
            I will be doing Jordi’s exercises also. hopefully he will come up with a dvd that we can buy.
            I am able to turn to the right and to the left okay. It is funny how we all have little differences.

          • Hi Sunflowersprout,
            You really like flowers, don’t you? :) I may try passion flower to relax muscles. It’s an ingredient of Herb Deep Sleep, which I learned from Abbie when I had hard time sleep on my back . (I rarely used this tablet, though.)

            I’m very surprised to know that you can turn the neck okay. Learned from this blog, CD’ers indeed varies in symptoms. I don’t seems to have some conditions that seems to be a typical for CD’ers on this blog like TMD and childhood trauma. What I can recognize is stress and muscle tension. I also have social anxiety caused by CD in a form of social embarrassment. For your information, several books mention that self-help works for anxiety but recommend seeing a specialist for trauma.

            I started to read a book about stress management & relaxation and it’s very helpful in working on various areas like muscular tension, anger, and breathing. There is a chapter of “refuting irrational ideas”, which seems to help to cut dysfunctional thoughts. A couple of books mention that good breathing (abdominal breathing, in contrast to shallow chest breathing) is the easiest way to reduce stress, anxiety, muscle tension, etc. The first step is to increase awareness.

            Take care!

    • Hello Jordi,
      I went to your website and read everything, Your story is very interesting.
      How did you know the propioceptive exercises would work for Cervical dystonia?

      Did you figure this out for yourself or were there professionals helping you?

      It looks like you recovered in 3 years, but then tremors came back in 2009, did neck spasms also come back in 2009?

      Do you feel like the tremors were only because of stress/anxiety, or because of dysfunctional neural pathways?

      I have spoken to another recovered person, her symptoms are also gone, except she says she still feels the cervical dystonia inside her body. I don’t really know what she means by this, but
      do you still feel it deep inside of yourself?

      You say you did no massage, but did you do chiropractic?
      Do you know if your spine is in good condition?

      It sounds like you are very active in sports……How healthy do you feel now on a scale of 1 to 10?

      Do you now teach people with CD the propioceptive exercises?

      Sorry for so many questions and thank you
      for inspiring those of us trying to recover!

      • “…How did you know the propioceptive exercises would work for Cervical dystonia?…”
        As a psychologist i knew Schultz (neurologist), “Das Autogene Training” and Jacobson (fisiotherapist) “Progressive relaxation” they talk how to modify or control beats of the heart, relax muscular tension, hiperventilation…I knew their work and their techniques, so i modified that for the CD. Really i think if the botulinum toxin never commes out now people with CD will know and use this procedures.
        So i knew that we can modify functions in our body that i don´t figured out (beats, hiperventilation, tremors…)
        I know also that some diseases in psichology can be cured putting them in the cortex area from the emotional area. That means: one disease (tremor, tic, stutter…) then when you do that voluntary some times the problem is solved. Obiusly is more dificult but i´m training to explain a lot of things and is not easy. And also i know the plasticity of the brain (it can learn, obiously)
        Mix all that and you have that: “my emotional brain is moving my neck, do some slow movements to get the cortical brain learn again how to move the neck”

        “…It looks like you recovered in 3 years, but then tremors came back in 2009, did neck spasms also come back in 2009?…”

        This was another big error that makes me lose 3 or 4 years… In 3 years i was fine! happy! My neck was 80% good or 85, or 90%. I could do everything that i wanted. So i left the exercices. I had inside a little sensation in my neck…but, i thought i was cured. After the years the tremors comes out, so i had to practice 3 years more to get totally cured. I´m sure that if i never left the exercices i got cured years before and the tremors never appear.
        No neck spasmps, only tremors.

        “…Do you feel like the tremors were only because of stress/anxiety, or because of dysfunctional neural pathways?…”

        For me this is the escheme:

        vital situation not solved–>stress, anxiety–>disfunctional thougts–>stress–>building neuronal connexions betwen emotional brain and neck muscles (dysfuntional neural pathways)–>CERVICAL DYSTONIA (in us, other problems in other persons)

        “…I have spoken to another recovered person, her symptoms are also gone, except she says she still feels the cervical dystonia inside her body. I don’t really know what she means by this, but
        do you still feel it deep inside of yourself?..”

        This was the error that i told you before. I thought i was cured but i felt the cervical dystonia inside me. My error was then stop my exercices. This sensation can be removed. Do you want to know what she means? easy, tell her: “touch your face” now “don´t touch” You are cured from CD when the sensation is the same, so when the trick is not necessary. In other words, one person is cured from CD when he/she uses the same muscular neck activity that a person without no CD. How do you know the diference? using the trick.

        “…You say you did no massage, but did you do chiropractic?
        Do you know if your spine is in good condition?…”

        No massage, no chiropractic. I´ve never check my spine, but i think all is ok.

        “…It sounds like you are very active in sports……How healthy do you feel now on a scale of 1 to 10?…”

        Yes, i like sports, i do the same now (45 yo) than before my CD. If 10 means “do that i want without limitations from my CD…”

        “…Do you now teach people with CD the propioceptive exercises?…”

        I am Psychologist and i have a very big background in CD, so yes, i´m opening and office to heal this disease.
        Remember, for me healing CD is not only the propioceptive exercices. My advice is go to the doctor to get some meds (psychiatrist will decide or not to give you some meds for the depresion, anxiety, pain…), go to the neurologist (to get botulinum toxin) and then we can talk to solve the vital situation, anxiety, disfunctional thougts and obiusly lets start to do a lot of exercices with your neck.
        Yes i´m talking about meds and botulinum toxin (two years). This is a very big disease, so use that modern medicin gives tot you. It will help you to get over your CD sooner.

        You can ask the questions that you want, i know what living with CD means.

        • Thank you Jordi!!

          I may have to come to Spain to see you in your clinic…..I hope Spain does not collapse anytime soon ;)

          Thank God for people like you, who can figure it all out, your story is absolutely amazing!

    • Hello Jordi,

      Thank you very much for your detailed answers. It is very good to know that you are really recovered and can do whatever you want and can endure any shock without getting new symptoms!!! Also, I am not surprised that you did without the strict diet and without massage. Those are helpful and may speed up recovery, but aren’t mandatory.

      I recognize your story about being shy. Did you see the discussion between LeeAnn and me about the Myers Briggs type? Both she and I are type INTJ. Did you ever take this test?

      Are you willing to share with us the details of your exercises?

      Adeu!

      • Hello CCD,
        i will check that test.
        “…Are you willing to share with us the details of your exercises?…”
        yes, obiously but…my advice is: go to the doctor to get some meds if need for anxiety, depression, pain, go to the neurologist for get the botulinum toxin and then go to one psychologist and show my page (www.camins-neuronals-disfuncionals.net) he/she will understand what to do, if not, change psychologist.

        Here you have some exercices that i did (i did a huge quantity of propioceptive exercices)

        1.- move your neck from left to right
        2.- same doing this movement: VVVVVVV
        3.- put your head in the right side: move from max right to max right -2 or -3
        4.- put your head in the left side: move from max left to max left -2 or -3
        5.- do the same with a mirror
        6.- do the same with a person looking at you
        7.- do the same in a chair
        8.- do the same lying in bed, 170 degrees.
        9.- when waching tv contract your neck, after relax (very very slowly, not hard…)

        You can do all the stretches that you want to relax your neck.
        ALL THAT HAS TO BE DONE VERY VERY SLOWLY, NOT EFFORT. Remember you are working neuronal paths, connexions, not muscles!
        Is better do three times in the day that one time three hours.
        When you have little time free (rice is not boiling?) do some repetitions…
        My advice: not activity in two or three months with your neck and do this exercices all that you can.

        Be pacient, results will come in three or four months…if you work.
        I don´t like to do that, the best is face to face, there´s a lot of thinks to explain…what i understand that you want to know about CD.
        I´ve wrote some advices but i´m not your therapist, i´ve never see you, so i do not do responsable of any use that people can do of the text above.

        CCD can you put in “treatment section” that i´m a psychologist? all my background comes from there. Thanks.

        Ps: sorry if i forget to answer some questions, thanks to Dolphin for her words.

        • Hi Jordi,

          Thanks you very much for sharing! Actually, in the STRC method there are similar exercises, most of them while holding the head. They also emphasize to concentrate on the neck and the back of the head. Stretching of the neck muscles is there as well, it is central. Also, in the STRC method it is recommended to minimize activity (apart from the exercises) during the first months. So I think there is some overlap between the two methods. But according to STRC it is enough to do 30-60 minutes of exercise per day. Well, as you said: each person is different and requires a different approach…

          As for the psychological part of CD, I obviously agree with you that it is wise to address the trauma and anxiety. Personally I am doing that with somatic experiencing. As for Botox, I think I don’t need it, since I am alleviating my symptoms a lot with the STRC program.

          Are you already helping others with CD on a structural basis? Or are you planning to open your clinic soon?

          • “…But according to STRC it is enough to do 30-60 minutes of exercise per day. …”

            i did more, and with diferents exercices, changing every week to don´t get bored, but obiusly there are differents approaches, and all can work, why not. I was 24 and very motivated to get cured early.

            “…Are you already helping others with CD on a structural basis? Or are you planning to open your clinic soon?…”
            My office is already open. I do psychological aspects in CD that means:

            1.- General advice.
            2.- Anxiety, stress, depression that comes with CD.
            3.- Analisys of situations that can be the source in CD.
            4.- Detection of distorted thinking.
            5.- Reeducation (propioceptive exercices)

            My pacients come from the doctors and neurologists so they come to me with meds and botulinum toxin if they need that.

          • Hello Jordi,

            Sounds good. I hope you will be able to help many people.

            I am wondering: it seems that there are many similarities between your approach and the STRC approach. STRC also emphasizes to do ‘emotional work’, i.e. work with the trauma. However, there seems to be one crucial difference between your approach and STRC: you claim that the recovery is permanent and irreversible, so that you can do everything in life and won’t get CD ever again. STRC says that you will need to continue the program forever, and need to be extremely careful with new shocks and trauma, as they will trigger the CD all over again.

            So why would this be, I ask myself? I can see a couple of possible explanations.

            1. There are fundamental differences between your approach and STRC (not yet identified), which cause different results.
            2. There are no fundamental differences between both approaches, but some people may completely heal and others cannot, regardless which of the two approaches they follow. I.e., not every CD is the same. Some can recover completely, others cannot – on a fundamental level.
            3. It all depends on how much the individual believes in total recovery. You have always strongly believed it. Yet, STRC does not believe in permanent recovery and tells this to all patients. (I believe in the law of attraction: what you believe is what you will get.)

            What do you think? Perhaps we should have a skype call to talk about details.

            By the way, did you already see one or more of your patients recovery completely? What are the results so far?

            Curious to hear more from you!

      • Jordi,
        Your number 3 and 4 exercise I do not completely understand.

        Do you mean move head max left then move back to center and then to max left again? and then same with right side.

        Wow, you did this 3 hours a day , I will start a little slower and shoot for 3 hours.

        Thank you, you are a Good Man!

        • First of all, i don´t know if only doing this exercices (and others) CD will get better. I mean, propioceptive exercices is big part of the cure, but i think it runs if you get meds from your doctor and counseling from the psychologist. I told that in my last letter. Really if a person with CD comes to me, in person, and he/she said: “ok, i will do the propioceptive exercices but not the others points…” i will say: don´t lose your money i can´t help you, please look for another treatment.
          I say it again: is a very big disease and the cure is very very difficult.
          Obiusly i don´t have DVD (i don´t know if you were joking) because of that. Really the exercices can be different from one person to other and there are diferent because de CD can be diferent (anterocollis, retrocollis, rotational torticollis, laterocollis…) and the contact with a therapist is very important in the process (at least once every month or two month)
          But obiusly i don’t mind answer some questions.

          “…Your number 3 and 4 exercise I do not completely understand…”

          Move head max left, then move back 2 or 3 centimeters, then again to max left, then again move back 2 or 3 centimeters… So you don’t have to get the center.

          For all the exercices if are dificulties you can use your hand in your face (as a sensorial trick) and pay attention in your neck, that builds correct neuronal paths too. Really doing the exercices with your hand in your face/head is a very good way to learn again how to move your neck with minimal muscle activation (our objective).

          I say the same: i’m not your therapist, i don’t know you, so i’m not responsible for any use you make of what I said.

          • Jordi, Thank you for sharing your exercise and helpful advice. You’ve explained very well (and patiently) what we are supposed to do as a holistic approach. I got your points and disclaimer – I’ll work on it with my own responsibility. I like the aspect that your exercises focus on movements, which is the area I really needed to work on. Warm Regards.

          • Hi Jordi,
            yes, I completely understand and agree that we need to address the mental/emotional aspects of the disorder other wise we will not get well.
            I also looked up autogenic training and progressive muscle relaxation, these techniques look very useful and I will study them further.
            I feel that relaxation is also a key to curing CD.

            Thank you for describing some of the basic prioceptive exercises and I will use my hand to help as a sensory trick.
            I will also study these exercises further to incorporate more in the future, so I don’t get bored

            I appreciate the fact that you have opened our eyes to the real possibility of retraining our brain. I am going to attempt to do this also.
            I do not know how you did these movements for 6 hours a day and then for 3 hours a day, but I will try!!

            God bless you for helping
            take care!

  20. Wow, I’ve just read through most of the comments on this page and am amazed by the determination to recover that you all show, and the variety of approaches that have helped various people. So much of your experience resonates with my own. I think we’re all hoping for that one cure, and maybe we’ll get there, but it seems that there is a complex range of options that may help different people in different ways.

    For myself, in particular I can see the value of looking into the freeze/trauma response, as my own personal experience is that my CD emerged quite understandably (in retrospect) from a background environment of overwhelming stress and fear that had gotten worse throughout my life. Looking back, I can see the early signs from years ago (head frozen and trembling while in social situations that brought up those feelings of fear and panic). I’m currently reading Peter Levine’s book In an Unspoken Voice: How the Body Releases Trauma and Restores Goodness, and am finding insights all over the place – this particular approach is tapping direclty into where I think my CD started. That being said, I think the various physical approaches like STRC are also important.

    I’m excited for those of you who have had dramatic improvement with a particular approach and will add them to my growing list of possibilities. It seems to me that a lot of you want the same thing I do – not just to get to a state of ‘good enough’ recovery (which may be possible just with Botox), but to be able to work, exercise, travel, play and generally live with gusto rather than at a reduced capacity. Hard as it is, I feel that this condition is an invitation to grow and that it’s certainly possible to be richer from the experience. It sounds like some of you are there already.

    CCD – you’ve mentioned that you have been doing Somatic Experiencing. Is this something you are doing on your own, or with a practitioner? If on your own, where did you get the method or exercises you’re doing? I see there are practitioners of this, though I haven’t found one yet in my area.

  21. For sunflowersprout:
    “…I do not know how you did these movements for 6 hours a day and then for 3 hours a day, but I will try!!…”

    Easy, if you say 6 hours a day is heavy! But if you say:

    - One hour and half in the morning.
    - One hour and half in evening.
    - One hour and half at night.
    - One hour and half watching some film, lisening to the music…

    Think that in three or four months i was with my head straight again, working again, socializing, getting around with friends…and absolute sure that i will get totally over CD, then is easy to practise every day if you know that runs.
    Other point is that you know that you can do thinks for get over CD. I had to discover on my own, so i got some mistakes like swim (swim is good for all doctors say…not true in CD), or do weights (bad very bad…) etc etc…some times i got worse, so i had to change exercices…

    And other point is that i was good in sports, so i was used to train every day three or four hours.
    Also i knew Daniel Levitin “This is your brain on music”. He speaks of ten thousand hours required to achieve expert levels in all disciplines…

    Now i think that if you chose well the exercices and you know how to do that in five, six months you can have a big change, and in three years you can get a 80%-90% or more free and sure that you will not get the CD again.

    • Hello Jordi,
      This is very encouraging but unfortunately I simply cannot afford time after 10 hours of work and commute. But I try to get opportunities for the neck exercise (left/right) whenever I can (in the work restroom, etc).

      When you started to work (full-time?) and socialize after 3-4 months of exercises, how much did you feel recovered? 30%? 50%? Did you still have jerks and spasms then?
      You are not recommending swimming and weight exercises.

      I like to swim (crawl and breast-stroke) and I can even forget about CD while swimming (I haven’t swum recently). Do you discourage swimming until I recover 90%-100%? The STRC does include weight exercises. Do you discourage even for the light weight dumbbells (2kg in each hand) or any exercise that strain muscles? Are there other activities you strongly discourage until recovery?
      Thank you.

      • “…This is very encouraging but unfortunately I simply cannot afford time after 10 hours of work and commute…”
        Yes, i know, is difficult to get time. You can do the exercices in this way: choosse a section of your movement and do little slow exercices only envolving this section, 2 minuts of exercices lot of times in the day (when you go to the bathroom, travelling, restroom…), always in the same secction.
        One section means 3 or 4 centimeters in your neck movement.
        And in two or three days you change the section.

        “…When you started to work (full-time?) and socialize after 3-4 months of exercises, how much did you feel recovered? 30%? 50%? Did you still have jerks and spasms then?…”

        Is difficult to say %. Externally people coudn´t see my CD (i worked as a swimming instructor with little kids, so i had to be healty, apparently healty at least).
        Internally i had tension, pain, my neck movements were limited and i was angry with the world. I had 5, 6 spasms per day that i coud effort with trick, so people didn´t realize. But i didn´t have spasms every five seccons like when mi CD started (we are talking about 20 years ago so i can forget some thinks).
        If you want a % maybe i had 50% recovery.

        “…Do you discourage swimming until I recover 90%-100%?…”

        Swim means use your neck a lot! if you have CD i not recommend any sport.

        “…Do you discourage even for the light weight dumbbells (2kg in each hand) or any exercise that strain muscles?…”
        I don´t know STRC exercices. But a little weight in your hands and then slow neck movements is a good reeducation exercice because your brain learns neck movement with muscles arm tension.

        “…Are there other activities you strongly discourage until recovery?…”

        Uf, if you have CD i discourage any activity…i think that all that you do when you have CD goes to your CD. But obiusly i don´t want you to stay at home all day.

        Look, if your STRC therapist say one think and I another, your therapist knows you, so belive him/her. I don´t know you.
        Regards.

        • Another question: how slow do the movements have to be? How many seconds do we need for moving in one section, I mean for moving 3-4 cm? Are 2 seconds enough, or does it have to be slower?

        • Hello Jordi,
          Thank you so much for your advice. Does “one section” mean, for example I do the right turn repeatedly at the time?

          I also think all activities can aggravate CD unless done correctly and slowly, and that’s why I think your simple exercises help to retrain the brain. I think even walking is very harmful unless it is done correctly. I walk very slowly and carefully at home but I don’t have that luxury for work related situations (often need to walk fast or sometimes run). I primarily have symptoms (jerks and spasms) when I’m walking (not too bad in other occasions) and need to support my face with fingers 60%-70% of the time while walking. May I have your thoughts what we need to pay attention while walking (neck, spine, pelvises, etc.)? Should the neck be loose or tight (for the effort to be upright) during the early stage of rehabilitation? How did you work on walking yourself?

          Sorry for bombing you with so many questions, but we all are very motivated and curious about curing from CD. I really appreciate your help.

    • I am reading your comment and I think I see a difference between your method and STRC. I think you would discourage fitness, correct? STRC does recommend fitness. Not with heavy weights, but still with some intensity. That could be a fundamental difference… So you discovered that swimming and weight work is bad for CD. Can you tell more about this? Do you think you understand why those activities are bad?

      • Hi CCD

        I’ve been following this conversation – very interesting – thanks so much for your advice, Jordi. I don’t want to butt in – just wanted to say that I agree with Jordi re weights and swimming. I did a gym class with light weights and lots of stomach exercises for about 2 months and was swimming at the time (+-20mins a day breastroke and backstroke) and this is when I was at my absolute worst in terrible pain and incessant turning – had to see a chiro for a few sessions for massage to alleviate the muscle pain. My Feldenkrais practitioner was horrified to hear that I was doing weights as it directly works the neck muscles. She banned me from doing any exercises that exercise my neck muscles – sit ups big no-no (I have good situps exercise which doesn’t use neck). Re swimming, I did a process of elimination and found that was worsening my condition. Walking is the only thing I do now, which works wonders for me (and my mood) but only if I do my Feldenkrais exercises before and sometimes I need to do them after if I feel out of line.

        By the way, I do similar neck turning exercises as Jordi’s, but my Feldenkrais practitioner said that my neck needs to be back when I do them, i.e. not forward head. She showed me how one needs to place one hand (palm down) at the top of the spine just below the neck bone and the other hand on top of it. Press in and push your neck back to make your neck line up with your spine – now do the turning exercises.

        • Hi Lee Ann, Thanks for your feedback. What you are saying is in line with what STRC propagate: do not arch your head backwards (swimming), and whenever you work with weights or pressure, make sure that your neck is in a severe military/straight posture. This does allow one to swim with backstroke!

          By the way, I cannot really visualize what you explain about the two hands. Would this be the same as standing against the wall, trying to make your entire spine, including the back of the neck, touch the wall?

          I am interested in your walking. Most of us experience the most tension and spasms when walking. What about you?

          • Hi CCD

            Sorry about the late reply. Re ensuring that you don’t have forward head posture when you do the neck exercises what you do is stand with legs just less than 2 feet apart or whatever suits you (not against a wall)
            - bend one arm back up and over your shoulder and pretend you’re going to scratch the very top of your spine just below your neck
            - now instead of scratching just rest your 4 main fingers there (sorry I mentioned palm above – it should be fingers rather)
            - now place the 4 fingers from other arm on top of those fingers
            - now press in with your fingers and pull your neck and head back so it’s not forward anymore. It’ll feel like your entire spine and neck and like a vertical rod – completely straight. Hold the position, drop your arms and do Jordi’s neck exercises turning to each side.

            This has been an excellent exercise for me. Like Jordi, I have been doing this while walking, sitting and standing and talking at the same time. The talking while rotating was excellent for me as my facial muscles were also affected by the CD – pulling.

            I also do a great rotation exercise using exactly the same position. However, instead of turning my neck/head I rotate from the waist. You do as per above, but instead of turning neck to side, I place the tips of the first two fingers of my right hand (palm facing forehead) on my forehead and tips of four fingers of my left hand at the base of my skull (palm facing skull – both just a light touch). Ensuring that I am maintaining the non forward-head position, I slowly rotate to *each* side from the waist, i.e just turning to look at the side, not bending over in any way. I then swap hands and do the same. I think with CD our rotation is affected.

            I also do another very good back rotation, lying on my back with one leg straight lying on the floor and the other bent with foot on the ground. I grab my knee (still bent) with opposite hand and pull it over the straight leg. You’ll feel a great stretch. Do other side.

            I’m not sure if STRC recommends these or different exercises, but I know they are definitely working for me.

            I have no problems walking and although my head does turn a bit to the side, I don’t need to hold it. The only time I need to put my hand on my chin is in social situations if I am facing someone and talking to them.

          • And sorry for my late reply! I am a little busy at the moment…
            Thanks for your explanations. I tried to do this and confirmed that this trick gets me in the military position that I am already able to assume without using hands. So that’s good to know! I am also doing the back rotation you describe. It’s part of the STRC program. And the rotation from the waist is included as well, be it in a slightly modified way. Interesting to see that we arrive at similar approaches, independently!
            I am stunned that you have so few problems while walking. For most of us, walking is the biggest challenge. But then again: not everyone is the same.

    • Jordi,
      Thank- you, you have made it sound much easier this way!
      I was hoping to learn more about proprioceptive exercises.
      I googled this word,but I have not found much information, I went to you tube to find people doing these movements but I found nothing for the neck.
      I went to amazon to find books but I did not find much.
      How do I learn more about this?
      I want to learn more exercises with detailed description on how to do them.

      thanks for your inspiration!
      Do i need to find a physical therapist who knows?

  22. I have so many questions, so sorry if i forget or if i am not clear in my answers. You can re-ask again.

    To CCD
    ======

    “…: it seems that there are many similarities between your approach and the STRC approach…”

    I only know STRC from their web, and there´s no exercices there.

    “…STRC also emphasizes to do ‘emotional work’, i.e. work with the trauma…”
    All psycologist, therapist will tell you that you have to work not resolved situations, or situations that causes stress, anxiety. Your word is trauma. For me trauma goes to childhood. I don´t think is a general rule. A person with safe childhood bud with a bad life situation in their maturity can have also CD. Bud yes, all good therapist will do emotional work.

    “…you claim that the recovery is permanent and irreversible, so that you can do everything in life and won’t get CD ever again…”
    I never said that in general! That runs for me myself! I did a lot of hours at the beginning. My feeling is that. But in general i think that one person with CD will be carefull all his life with stress, anxiety…so i absolutely agree with STRC.

    “…By the way, did you already see one or more of your patients recovery completely? What are the results so far?…”
    I’m just starting talking with some neurologist and seen some pacients.
    But i’m pretty sure that if you work your emotions, you change your disfuntional thoughts, and you practise a lot there are not limits in healing CD.

    Talking on skype? i think for the other people is better if we have our discussions in the forum isn´t it? But why not? let me know a little bit my working hours and we can talk.

    To sunflowersprout
    ================

    “…I also looked up autogenic training and progressive muscle relaxation, these techniques look very useful and I will study them further.
    I feel that relaxation is also a key to curing CD…”

    Yes, but with that you will get relaxed, if you want to heal CD you have to work specifically in hour neck. That means: yes, work in your relaxation, but work to, and a lot, in reeducation your neck specifically.

    To CCD
    =======

    “…how slow do the movements have to be? How many seconds do we need for moving in one section, I mean for moving 3-4 cm? Are 2 seconds enough, or does it have to be slower?…”

    All slow that you can! That´s no a competition, you are learning how to move your neck again (creating new neuronal paths or remembering the apropiate neuronal paths and diluting disfunctiona neuronal paths…so you are creating connexions in your brain)

    Two seconds is quickly! i spend for four cm 15 seconds.

    To Dolphin
    ==========

    “…Does “one section” mean, for example I do the right turn repeatedly at the time? …”

    Uf! do that on internet can lead to misunderstandings…
    1.- One section means 4 cm, not more, not all right turn…
    2.- Yes repeatedly at the time.
    For exemple:

    1.- head in the center
    2.- turn slowly to right 4 cm
    3.- back to the center 4 cm
    4.- repit…

    Obiusly in two or three weeks you have to start again for the first section…

    The best way to do that could be doing videos of myself and upload that in my web…but i don´t have time…will see.

    “…May I have your thoughts what we need to pay attention while walking (neck, spine, pelvises, etc.)? Should the neck be loose or tight (for the effort to be upright) during the early stage of rehabilitation? How did you work on walking yourself? …”

    I don´t know how to answer that question because is not my field. But we can tray with some propioceptive exercices:

    Your problem are: walking and runnning.

    1.- walk in your home with no stress and do neck movements, slowly, very slowly.
    2.- run in your home and do some slow neck movements.

    Obiusly you have to practise a lot, you are reeducating your neck walking and running…

    To CCD
    =======

    “… I think you would discourage fitness, correct? STRC does recommend fitness. Not with heavy weights, but still with some intensity. That could be a fundamental difference… So you discovered that swimming and weight work is bad for CD. Can you tell more about this? Do you think you understand why those activities are bad?…”

    My general rule is in CD that all you do goes to CD. What does it mean?
    When a person without CD swim: he/she is learning where to put the hand, when breath, when move the neck to see the wall…and all that goes to the brain creating connexions or strengthen the connexions that you already have.

    When a person with CD swim:
    he puts the hand and move the neck (or not but you think in this movement), or he breath and move the neck because the spasm, or train to move the neck to see the wall but you can´t because the spasm…all that goes to the brain as a connexions, so YOU ARE LEARNING HOW TO SWIM WITH CD, YOUR CD IS GETTING HEAVY AND HEAVY IN YOUR BRAIN!

    All that is the theory, but it happen to me years ago! That’s because i think that no activities during some time…

    to sunflowersprout
    ====================

    “…I googled this word,but I have not found much information, I went to you tube to find people doing these movements but I found nothing for the neck.
    I went to amazon to find books but I did not find much.
    How do I learn more about this?
    I want to learn more exercises with detailed description on how to do them….”

    Uf, i don’t really know. I got that from my own experience (and obiusly my background as a psychologist)
    See this forum and my web:
    http://www.camins-neuronals-disfuncionals.net/index.php?cat=exhaustiva.php

    I can put more exercices in the future.

    • Jordi, I have one more question:

      If i work my neck for 6 hours in a day, should I only choose one exercise and do only that one for 3 weeks?
      Or should I do all 3 of the exercises that you have described in one day?
      Thank you for your help and your patience with us!

      • “…If i work my neck for 6 hours in a day, should I only choose one exercise and do only that one for 3 weeks?
        Or should I do all 3 of the exercises that you have described in one day?…”

        Here you can see a six hours program for 1 month:

        *i supose you have laterocollis and your spasms go to left side (if not, aply that to your specific CD)

        Morning (1.5 hours)
        ——————-
        1.- from right to left, from left to right (20 min)
        2.- relax, strech, rotations…(5, 10 min)
        3.- from center to right, from right to center (15 min)
        4.- from center to left, from left to center (15 min)
        5.- relax, strech, rotations, touch your bad muscle, your neck…
        6.- from center to left, from left to center (15 min) (your bad side)
        7.- from bottom to left, from left to bottom (15 min) (your bad side)
        8.- relax, strech, touch neck, rotations….

        afternoon(1.5 hours)
        ——————–
        idem.

        Evening (1.5 hours)
        ——————–

        idem.

        It remains 1 hour
        —————–
        When you watch the tv, or read a book…you can strain your neck, very slow, very light, and then relax slowly too…
        If you watch tv you can do 1,2,3…

        You can do some exercices in a chair, others standing up, others walking, others in a bed.
        You have to do all that in a quiet room, no stress. Do all that very very slowly and larning what happends insight your neck. Results need time, you are learnig again how to move your neck.

        Note: all that you do is on your responsibility because i’ve never seen you. My advice is go to the doctor and see if you have stress or depression simptoms and to the therapist. All CD needs and holistic approach.

        • Thank-you Jordi, I will save these instructions.
          I cannot start this month with 6 hours because I am moving.

          I understand why you recommend botox. I tried the exercises yesterday and it is very difficult to do them very very slowly. It is easy fast, but NOT easy slow.

          I thought of a question last night while I was watching the STRC dvd of exercises.
          The girl performing the stretches is recovered from CD. The only symptom she experiences is some morning stiffness, and she only has to do a few minutes of stretches a day, like you.
          So her neck function is normal or at least 95% (i think people that had CD always has 5% difficulty with the previous bad side)
          Since her neck function is normal,
          why hasn’t her brain been retrained?
          She says she still feels the Cd deep inside, but her neck works normally all day. This should retrain her brain without having to do the proprioceptive exercise?
          I just want your opinion if you understand what I am asking.

          thank you!

          • “…I cannot start this month with 6 hours because I am moving….”

            I did 6 hours and in 4-5 month i got really better. That doesn´t mind that you have to do 6 hours. If you do two hours you will get better too (maybe not as i did in the same time). The important think is to work every day.

            “…I understand why you recommend botox. I tried the exercises yesterday and it is very difficult to do them very very slowly. It is easy fast, but NOT easy slow….”
            Use your hand as a trick, will see in a few days you will do that without your hand.
            I´ve never used botox. I recommend that to get better life quality in the recovery process.

            “…Since her neck function is normal,
            why hasn’t her brain been retrained?…”
            How do you know that? I´ve never seen STR exercices so i can´t talk about them. I use propioceptive exercices because my psichological background and i know they run (because i try that on myself), but there are other ways to reeducate the brain.
            Really if her neck function is normal that means that their good neuronal path are working.

            “…She says she still feels the Cd deep inside, but her neck works normally all day….”
            Yes, is like me after three years exercices. I felt that way. I thought “i´m cured” and i stopped my exercices, and then after 10 years my neck starts shaking. It took to me three years more to really heal all CD. See that http://www.camins-neuronals-disfuncionals.net/index.php?cat=historia_personal.php and read after: “After three years of training (in 1998 or so)…”

            What does it mean “She says she still feels the Cd deep inside”?
            That means that your neck muscles are still overworking. To fix that was for me one or three hours per day working…but were a good work because finally i got my old neck back. Now i have no tension in my neck, so is nearly normal inside and outside.

            “…This should retrain her brain without having to do the proprioceptive exercise?…”
            All that you do involves propioceptive sense. Propioceptive sense means that when you move your hand, your brain knows where your hand is, why? because the propioceptive sense is informing about that to the brain.
            When you move slowly the neck, the propioceptive says to your brain where the neck is, so you can correct the neck if the CD is working. If you do that a lot, then you create or remember neuronal paths and forget disfuncional neuronal paths. Is not easy to explain, really that you are is correcting yourself.

            I understant you perfectly, really is a good think to understant why you are doing one exercice and not another.

          • Jordi,
            Okay, yes 2 hours is better than nothing.
            You are a good at what you do as a counselor and motivator.

            I guess we don’t really know if her brain has been retrained.She has been free of symptoms for 12 years. But STRC states that the program is not a “cure” only a recovery from symptoms.
            And there is always the possibility of the symptoms returning with excessive mental or physical trauma.

            I understand what you mean by proprioceptive sense. Everything we do involves this sense.
            Maybe it is the very SLOW movement of your exercises and THINKING about the movement at the same time that provides a “cure” or retraining of the brain.
            But I do know that the woman who invented the strc program, has not retrained her brain with this program. She has been free of symptoms for 30 years, but she has to do a lot of stretches everyday to remain free of symptoms.
            The STRC is about the muscle, and that is the difference. It is about stretching and massaging the muscle to control the spasm.
            Thank you, I will try 2 hours today!

    • Hello Jordi, thanks a lot for your efforts to explain your method and points of view. I would be glad to talk with you sometime soon to exchange ideas and find commonalities. I will be in touch with you!

  23. Jordi – Thank you so much for taking your time for helping us. Yes, it would be very nice if you can post your exercise video on your website – look forward to it! Too bad walking is not your field (but thank you for the advise). So, your CD didn’t get significantly worse when you walk?
    My little concern is about length of having CD and age. Because you seemed to work a lot shortly after the onset of CD when you are in 20′s, you might be able recover pretty well. Many of us in this blog seems to be in 40′s and had CD for a while, which may be the situation is a bit harder than your case. (I acknowledge that I really want to wipe out this idea.) Any thoughts?

    • “…So, your CD didn’t get significantly worse when you walk?…”
      My neck allways was worse. CD means than in your brain all activities that you do your CD is involved. You have to learn again how to walk without CD. You have CD only when you walk? i don´t think so. Or maybe yes…tell me. First when your CD is involved in all your activities you have to practise general exercices…after, when you get better, you will train specifically exercices to each situations…but tell me when you have CD and will see.

      “…My little concern is about length of having CD and age. Because you seemed to work a lot shortly after the onset of CD when you are in 20′s, you might be able recover pretty well. Many of us in this blog seems to be in 40′s and had CD for a while, which may be the situation is a bit harder than your case. (I acknowledge that I really want to wipe out this idea.) Any thoughts?…”

      Three thougts:

      1.- That´s true, your brain is more envolved in CD that one person with one year CD…
      2.- But…as you know CD starts and get worse in five years, then stay there. So, in theory one person with 20 years with CD is the same that one person with 5 years with CD…
      3.- Your brain allways can learn, i’m absolutely sure that if you work a lot you will get better. but you have to work a lot and do and holistic approach. For me is more important how do you do your work in recovery that other think. For me there are no limits in CD recovery.

      • Jordi – Thank you for sharing your thoughts.
        I have more pulling of my neck when I walk or move upper-arms because I get tension in neck/shoulder areas with these activities. The faster I walk, the more pulling I get on my neck. When I walk at a moderate pace (2 steps per second), I get jerks and spasms every 5 – 15 seconds. but when I walk very slowly at home (1 small quiet step per 1 – 1.5 seconds), I can almost stop pulling by 97% (almost no pulling). I can walk slowly like this at home, but it’s not realistic outside like in work situations, but I’m trying to slow down a little.
        I totally agree with you that activities increase CD symptoms (I do know commuting and work aggravate my CD but I can’t quit working), and I agree with your theory of correcting neural pathways with repeating exercises, moving very slowly, and reducing tension mentally and physically.

        Questions about swimming – Now you can swim with any kind of forms including crawl and break-stroke, right? My breathing of crawl has been always at the right side, which is pulling side of my neck. Before curing, if I breathe at the opposite side (I haven’t try it yet but I think I can do it), does this help for CD recovery?

        • First of all, CD is a very serius illnes, so if you want to heal you have to work a lot. That means:

          Step 1.- When you start your recovery (so when you are worse) you have to do general exercices (i´ve put some in this forum)

          Step 2.- When you get better (maybe in 6 months or 1 year working a lot) you can do specific exercices. Eg: if you have a lot of problems walking we have to do neck exercices walking, if you have problems writting, we have to work specifically neck exercices writting…so you have to simulate the situation were you have problems and repit again and again the exercices…

          Step 3…
          Step 4…
          .
          .
          .

          Obiusly all of that is my opinion and my approach.

          “…when I walk or move upper-arms…”
          “… I can walk slowly like this at home, but it’s not realistic outside like in work situations, but I’m trying to slow down a little….”

          You have no time and i obiusly understand that.
          I think is early to go to step 2 and work only upper-arms and walking but let´s try if you want…

          YOu have to do that in a safe quiet place, your home…but not in your work…

          1.- Upper-arms, then your neck will pull, ok with your left or right hand put your head at the center and “look” inside your neck (your other arm stay upper) and move your neck very slowly to right/left. Bottom-arms. Upper-arms and repit. Change your hand every 5.

          2.- Upper-arms and move your neck from left to right and come back, slowly, very slowly all movements…

          3.- Choose a place were walk in home (one room or…). Walk, when your neck pull use your hand to put your head in the center, look insight, keep walking…

          4.- Walk and move your neck sloooowly from center to your left, return. Do the right…

          “…I can walk slowly like this at home, but it’s not realistic outside like in work situations…”
          Yes, but when you are safe at home, and slowly you can try faster, and then you will tray at work…but not that faster, it takes a time.
          General rule: you have to improve at home in safe situations, then try out.

          “…Questions about swimming – Now you can swim with any kind of forms including crawl and break-stroke, right? My breathing of crawl has been always at the right side, which is pulling side of my neck. Before curing, if I breathe at the opposite side (I haven’t try it yet but I think I can do it), does this help for CD recovery?…”

          Yes i can swim with any king of forms, but really i only swim crawl and breaststroke. For me nothing heals (diet, meditation, yoga, swim…) the only think that can heal your neck is reeducate your neck, and that means exercices that involves neural paths and muscles…
          I understant that for you swim is important…but you can use this time to do neck exercices, and yes, i know, is hard.
          For me recovery from CD means work a lot and forget other activities that can involve your neck…For me swim now means increassing your disfunctional neuronal paths.
          Sorry for this big answer. My answer is not, breathe at the opposit side will not help for CD recovery.

          • I forget that:
            Note: i don’t know you, so i’m not responsible for any use you make of what I said. If one therapist, doctor…says another think belive him/her because i´ve never seen you and the best is a face to face in this issues.
            Regards.

          • Jordi – Thank you for the additional exercise and your insights. Does “‘look’ inside your neck” mean to feel the inside the neck muscle? Right now these simple exercises are challenging to me, but I believe I’ll be able to do them like the pre-CD state overtime.

            I have acknowledged that you are not responsible for any posting on this blog since you haven’t met me in person. I really appreciate your kindness in trying to help us even though you don’t know us personally.

            It is very amazing that you kept doing these simple exercises for large chunks of time each day for several years when you are in 20′s. I see you must be an extremely patient and disciplined and determined person for curing, but how were you able to keep your commitment on these monotonous exercises without getting tired? Listening music or audio books while doing exercises? Watching TV or videos? What were in your mind while exercising?

            Another question: In your view, how have you found the personality traits of CD’ers (including yourself, your patients, other CD people you met if any, and from blogs like this). Which personality traits and thinking patterns would cause or negatively affect CD, do you think? We have discussed about this subject before on this blog (you weren’t here yet), but I’d like to know your insights as well. You have worked on correcting dysfunctional thought process/patterns. Would you mind sharing us how did your personality traits and thought patterns change and help curing CD?

            Sorry for asking so many questions – I’m very curious!

  24. Ugh, I just typed a big long post and when I clicked the button to post, it timed out and didn’t post anything! Anyway, I guess my main question was for Jordi and what exercises would be best for anterocollis? Is it ok to stretch neck/head backwards? I see a lot of people saying STRC program says never to do this, but in my case, maybe it is different. Briefly, my main issue remains difficulty swallowing and talking. My muscles tense up during this acts and my head moves forward as a consequence (almost as if to compensate to accomplish the task). I am able to hold my head straight without much problem when I am not performing these tasks. I have some activation during walking and other physical activity, but it is much milder. Thanks for your help! Hi to CCD and others, it has been a while, glad to see you are all still working hard on recovery. I am also INTJ by the way!

    • “…what exercises would be best for anterocollis?…”

      The exercices depends on your CD type. See the exercices that i put in this forum and when you read from left to right or from center to right/left put from backwards to forwards or from center to backwards/forwards…that’s to start, then you have a lot more exercices to do and improve.

      “…Is it ok to stretch neck/head backwards?…”

      Yes but very very very soft. If you do that hard you will increase your CD, if you do that soft you will learn again how to control your neck. And obiusly you have to do other exercices, not only strech and relax.

      “…STRC program says never to do this (strech neck/head),…”
      The same. If you stretch hard i agree with STRC, if you stretch very slow, very soft is a very good exercice to heal your CD. I insist, very soft. If you look yourself at the mirror you have not to see any stretch muscle when you are practising.

      “…my main issue remains difficulty swallowing and talking…”
      Yes, i know. You have hypertrofia in the muscles next your throat and vocal cords. So this muscles take place in the neighboring areas.
      Do all this exercices will decrease this hypertrofia, but you have to work a lot, you know that.

      Remember this exercices have to be in a holistic aproach, see http://www.camins-neuronals-disfuncionals.net/index.php?cat=bases.php

      Note: i don’t know you, so i’m not responsible for any use you make of what I said. If one therapist, doctor…says another think belive him/her because i´ve never seen you and the best is a face to face in this issues.
      Regards.

    • Hi Carrie, sorry to hear that your previous post was lost! That is always a risk with web-based applications.
      But great to read that you are doing better! How much have you improved since you started your healing journey?
      So interesting that you are INTJ as well. I think this profile makes us really suitable for getting CD…

      • I would say that I have stabilized and have had some improvement. I still have some really bad days, but they are fewer and I am figuring out strategies to cope with those days. I definitely don’t have those terrible moments of despair that have haunted me in the past.

        I have decided to stop the botox treatments (last was in June) for a couple of reasons. They helped quite of bit, but only for about 4-6 weeks and I just feel that as long as I am relying on that, I will never figure out how to cope and heal myself. It is too easy to forget about the extensive exercise and mental work required to heal when you are feeling quite good during that 4-6 week period. In fact, I am taking a break from all doctors. This illness is so hard to explain in the short time that you have to spend with a doctor that I usually just end up leaving more frustrated with the doctor and myself. So I am going to become my own doctor. I have been practicing some of the strategies recommended by Jordi over the past week and I am happy with my progress even over that short time. These exercises are not easy for me, I find them quite fatiguing, but I notice that each day, they get slightly easier. I don’t have hours a day to devote, but in total over the whole day, I am probably at about one hour of exercise. How do you find the exercises, are they very hard for you?

        • Hi Carrie, I am glad to hear that you are doing better and even more determined to heal yourself. I wonder what kind of help you had expected from your doctor(s). To be honest, I never expected much understanding from the neurologist who diagnosed me. He doesn’t have a clue about this disease, isn’t interested in the person behind the symptom, even less in the cause, and only wants to do some ‘mechanics’ on his patients, e.g., with Botox.
          As for Jordi’s exercises, they are difficult indeed. I can move my head rather quickly in all directions, but when I move it slowly, it gets hard. Jordi says that in that case you should help yourself with the sensory trick. The exercise itself should be a ‘soft’ experience, without forcing anything. That makes sense to me. We are traumatized and therefore our bodies need a gentle approach, not a military one.

          • Hi CCD and Carrie,
            i’ve found this post today, i only get on my mail answers to my answers.

            “…The exercise itself should be a ‘soft’ experience, without forcing anything…”
            Absolutly true!

            “…As for Jordi’s exercises, they are difficult indeed…”
            if they are difficult you should ask me, we have to change the exercise. They are thousands of combinations to get the control again in your neck area.

            I don´t know how is your neck, what kind of CD you have (clonic, tonic, laterocollis, anterocollis…). So usually the process is: do x exercises, and tell me what’s the story the next week (did you have lot of pain? it was inconfortable? it was difficult?). We can change the exercises or keep doing the same…And every week we test the exercises.

          • Hi Jordi,
            Sorry for the late reply.
            Well, it seems that for many people the sensory trick doesn’t really work (anymore), so moving their neck slowly will be hard in their case. Let me know if you have a suggestion for this situation.
            In my case, I have a torticollis to the left (with a slight laterocollis/tilt to the right). Also, I have some tremors sometimes (clonic?).
            Anyway, I am doing your exercises in sections of 3-4 cm, and mainly away from my torticollis, so that means: keeping my head to the right, which is harder than keeping it to the left – obviously. While doing the exercises I often have to make some effort and exert pressure. The sensory trick doesn’t help that much. Also, I often feel slight tremor during the exercises.
            Let me know what you think!

  25. Hola Jordi:

    Estoy siguiendo con mucha atención tus recomedaciones, y me alegra mucho que en España haya alguien que se ha curado y que está ayudando a otras personas a coseguirlo.

    Mi problema es la falta de tiempo, con trabajo, niñas…imposible dedicar en total más de una hora al día a hacer los ejercicios y a ratitos.

    Mi duda es, ¿sería mejor hacer un sólo ejercicio de los que recomiendas, o hacer varios? hacerlos en una única posición, o ir variando y así poder dedicar más tiempo..paseando con las niñas, delante del ordenador…

    Entiendo que una seccion son 4cm del recorrido del cuello, si por ejemplo el recorrido total son 8, ¿en qué momento podría pasar en un ejercicio de moverlo 4 a 8?

    Comprendo lo difícil que es explicar estas cosas por escrito, y aprecio muchísimo el esfuerzo que estás haciendo por ayudar.

    Muchas gracias y un saludo

    • “…Mi duda es, ¿sería mejor hacer un sólo ejercicio de los que recomiendas, o hacer varios? hacerlos en una única posición, o ir variando y así poder dedicar más tiempo..paseando con las niñas, delante del ordenador…”

      I say the same, if you only have one hour per day is difficult, look my web http://www.camins-neuronals-disfuncionals.net/index.php?cat=historia_personal.php, i did first three months 6 hours per day.

      So that we can do is use this hour to practise like here:

      1.- head in the center
      2.- turn slowly to right 4 cm
      3.- back to the center 4 cm
      4.- repit…

      Obiusly in two or three or four weeks you have to start again for the first section…

      For me the best is do one section, and repit this section all hour. 15 min up, 15 min in a chair, 15 min in front a mirror…Do this section three or four days, then change the section…

      “…Entiendo que una seccion son 4cm del recorrido del cuello, si por ejemplo el recorrido total son 8, ¿en qué momento podría pasar en un ejercicio de moverlo 4 a 8? …”

      I don´t really know if i understant, if not, answer again please and sorry. YOu have to practise one week 4 cm, then another week other 4 cm, then another week other 4 centimeters, and another week 4 cm. Then start again for the first 4 cm. You ask me when can you move 8cm. You have no time (1 hour day) so i think is better little movements, because they involve less neurons and see what happends in two or three months…

      Note: i don’t know you, so i’m not responsible for any use you make of what I said. If one therapist, doctor…says another think belive him/her because i´ve never seen you and the best is a face to face in this issues. And remember too that this disease can be healed in my oppinion in and holistic approached (http://www.camins-neuronals-disfuncionals.net/index.php?cat=bases.php)
      Regards.

  26. Hi

    My new vegan diet is going well however, although the first week was *incredible*, the second and third week have been okay and sometimes bad (not as bad as before vegan diet). I have slipped up a few times eating meat, wheat and sugar. I’ve been keeping a food diary to see if I can figure out probable causes of certain issues popping up again. I have come across something I find very interesting which rings bells with my case. Please let me know if this makes any sense to any of you.

    I’m wondering if anyone else here has gastric problems. I ended up looking into this because, as mentioned on here before, I often have difficulty taking a deep breath during the day and sometimes wake up in the middle of the night battling to breathe (feel like my throat is constricting and try as I might I can’t take a deep breath). During the day I used to feel bloated (not anymore since going vegan, no wheat/fish, sugar), but I do still get a hard burning sore sensation if I poke between where my upper ribs meet in my chest – think it happens mostly after directly eating (will monitor). As I was making lunch today, I reached for the raspberry vinegar and immediately my body rebelled and I thought “too acidic”. I ignored this message and continued to make my salad dressing. Now that my attention has been drawn to this (2 hours after lunch), I can feel the acidity and a burning sensation in the base of my throat and upper chest. I’ve never thought about this before. Bear with me, this will all come together.

    Yesterday I looked into sleep apnea to see if that might be the cause of my breathing problem at night and many other problems I experience. During my first week of my diet, i did not experience any of the following signs of sleep deprivation. Now in my third week I am experiencing all of the following – not as much as before the diet, but they are definitely back again. These symptoms have plagued me for years.

    “The most important consequences of sleep deprivation are:
    • Reduced thought process and delayed response time.
    • Problems with listening and comprehending of instructions.
    • Memory problems.
    • Frequent mistakes and failures.
    • Narrowed attention span. Overlooking important changes.
    • Bad assessment of complex situations.
    • Problem with finding new solutions.
    • Tunnel vision: a narrowed field of vision.
    • Blurred vision.”
    (source: http://www.4d-comfort.com/opencms/export/sites/default/en/sublinks/slapen/slkomp/)

    It’s obvious to me that I may suffer from sleep deprivation/oxygen deprivation at night. I usually sleep 8 hours and always thought I slept well apart from these ‘can’t get my breath episodes’, but according to this sleep apnea article http://www.newsmaxhealth.com/health_stories/Women_Sleep_Apnea/2012/09/10/473525.html?s=al&promo_code=1007C-1 50% of women may have it – it’s usually known as a male condition, I think.

    I then looked into getting tested in South Africa when I go on holiday soon and did this online test http://www.durbansleepcentre.com/sleep_disorders/online_questionnaire.htm
    and scored positive for apnea, but very high for gastrointestinal reflux disease. I’d never heard of gastrointestinal reflux disease and thought it ridiculous as I don’t take antacids. I realise now that I have always ignored the burning in my throat/chest and besides I thought people who have this usually have food regurgitating into their mouth, which I don’t. Apparently not so.

    I’ve now looked into gastrointestinal reflux disease http://www.medicinenet.com/gastroesophageal_reflux_disease_gerd/page4.htm. There may be other part of the article that ring bells with you, but this paragraph rings bells with me

    “Refluxed liquid that passes the larynx can enter the lungs. The reflux of liquid into the lungs (called aspiration) often results in coughing and choking. Aspiration, however, can also occur without producing these symptoms. With or without these symptoms, aspiration may lead to infection of the lungs and result in pneumonia. This type of pneumonia is a serious problem requiring immediate treatment. When aspiration is unaccompanied by symptoms, it can result in a slow, progressive scarring of the lungs (pulmonary fibrosis) that can be seen on chest X-rays. Aspiration is more likely to occur at night because that is when the processes (mechanisms) that protect against reflux are not active and the coughing reflex that protects the lungs also is not active.”

    I then googled ‘gastrointestinal reflux disease and dystonia’ and found this article http://www.mdsabstracts.com/abstract.asp?MeetingID=787&id=100201, which links the two and shows that curing GERD cured someone of their dystonia. There seem to be a few articles on it around 2000, but nothing recent. This doesn’t seem to have been investigated fully.

    I don’t know when my heartburn started as I never paid attention to it except when I had a terrible hangover I discovered that an antacid worked wonders for me. My dad takes them so I figured that heartburn is probably hereditary. Had no idea it could be dangerous. I had a LOT of parties when I was younger and drank a frightening amound of alcohol (at parties only – never during day or on my own). I’ve known for years that alcohol is definitely one cause of my bad breathing at night.

    I’d like to know
    - does anyone else suffer from similar symptoms? Maybe you haven’t paid attention like me. Maybe eat something acidic and see how you feel. Is there a pain in your chest between your upper ribs (middle) when you press there. Can you press there a couple of times a day to see if you do get this pain?
    - does anyone else suffer from breathing problems (can’t take a deep breath) and if so when (day/night)
    - do you have a large amount of the sleep deprivation symptoms listed above?
    - do you get this at night after drinking alcohol?
    - do you suffer from sleep apnea?
    - if you do the online test how do you score?

    Also, is anyone else out there INTJ personality?? CCD, Carrie and I are. I find it more than a coincidence that the three people who hve done the test so far are INTJ.

    Sorry, for the long missive again, but I don’t like to leave anything out in case it rings bells with someone.

    Thanks
    Lee-Ann

    • Hi Lee-Ann, that is a long missive indeed! To be honest, I think this is all a bit far-fetched. But I can confirm that I have had reflux problems in the past (not anymore since I eliminated acidity in my diet). I also have some apnea problems, but mostly due to the fact that STRC prescribes sleeping on one’s back. The breathing problems are there, as were already previously discussed. I see these gastrointestinal problems as symbolic for not being able to “stomach” much of what we experience. It is known that high stress levels contribute to such issues. I think all of these are fringe symptoms that we get next to the main symptoms (i.e., CD, anxiety). See one of my previous comments to you ;-)

      • :) Maybe far fetched, but my gut instinct is that sorting out what’s causing my deep breathing will fix my CD. I had two years of people telling me that my head turning was in my head, when I knew it wasn’t. There isn’t a neuro out there who can cure me – I have to listen to what my body’s telling me and trust my instincts.

        During the good 2 diet weeks (not only one week as mentioned above) I had zero breathing problems, zero social anxiety and zero anger/irritability – all of those things worsen my CD. My problems resumed when I broke the diet. I don’t believe everything that I read, but these two documents sound genuine
        http://www.balancedconcepts.net/Hiatal_Hernia_Cause_Chronic_Illness.pdf
        http://castlehighkingdom.proboards.com/index.cgi?action=display&board=roundtable&thread=99&page=1
        “The easiest way to tell if you or someone you know has a hiatal hernia is to place your fingers on the solar Plexus, just below the breastbone. Then take a deep breath. You should feel the solar plexus expand and move outward. If there is no movement at the solar plexus and you have to lift your chest and shoulders to take a deep breath, then you probably have a hiatal hernia. You should be able to take a deep abdominal breath without lifting your shoulders. ”

        When my breathing is not good, I lift my shoulders right up to my ears jut out my lower jaw. Maybe this explains why sometimes my left bottom jaw gets sore where it joins the upper jaw.

        I can tell you right now, that when I was in that ‘zone’ for 2 weeks, you wouldn’t have been able to get me angry if you had tried. I was completely mellow and felt love for everything (I know I sound nuts, but that’s what it felt like – I distinctly remember feeling a love for everything). I can’t just stop the anger and irritability I *sometimes* feel strongly now (am better than it was) because i am not in that ‘zone’. If I can get to that state/zone again, I won’t feel anger, have irritability issues and therefore my CD will improve. I see this very clearly now. I’m hoping to see a gastroenterologist while I’m on holiday in 2 weeks.

        One other thing, I don’t know much about chakras, but the place that my hand keeps going to when I think about my breathing/bloating/acidity problem is between my upper ribs (centre). if i have those problems then this place is sore when I jab it. I googled it (below) and this area is called the solar plexus chakra. When this is blocked, it blocks our true personality. Too much of a coincidence. I *know* that this is what unblocked during my diet and this is what is blocked now.

        “It is also in the solar plexus our will-power is placed and our personality. When the solar plexus chakra is open and healthy we will feel that we have a strong will and that we are very confident in our selves and our individual characteristics. We are allowing our true personality to show. We are confident are not afraid to make our own choices and stand up to people.” (http://www.chakrahealings.com/ChakraSystem-Solar_Plexus.htm)

        Before, when my CD was worse (painful muscle pulling on my neck, back and face), I would never have bothered to think about my stomach or bloating. All I could feel was my CD and all I wanted was to cure my CD. I think that now that the CD is much improved and that I have experienced the dramatic positive effect that is possible, I am open to feeling and sensing other things going on in my body and am able to focus on them instead of CD, CD. To me it’s all linked.

        • Lee Ann,
          If you really feel you have a hiatal hernia, you may want to try this ginger juice protocol. I don’t have this condition, but I remembered reading about ginger juice offering a cure for it, so I googled it for you and here are the instructions to the ginger juice cure:
          http://askwaltstollmd.com/articles/hiatus.php

          I don’t believe I have sleep apnea
          either and I don’t have the breathing difficulties that you describe, and no pain/burning in chest either.
          But my Mother has sleep apnea from being overweight, so I know there are exercises for the throat that you can do that cures sleep apnea. You tube may have instructions for this.

          Noel Batten claims that the cause of neurological conditions begins with “troubled anxious sleep” which causes our neck muscles to tighten which then pulls the vertebrae out of alignment, then the subluxed vertebrae causes dysfunctional neural pathways, which causes muscle spasms, then the muscles spasms create more problems with the spine, it becomes a vicious cycle.
          He also says digestive troubles cause tight muscles.
          He has a simple exercise for increasing our breath and our oxygen saturation levels and that is to blow up a party balloon before each meal and before bed. Inhale through nose and blow through mouth.

          It is common to “cheat with the bad food” when you first start eating healthy. A way to reduce these cravings is to satisfy your bodies nutritional needs through juicing fruits and veggies. If your not getting enough nutrition, especially because you have digestive troubles, your body will crave, the bad stuff.
          Juicing is a good way to get super nutrition into your body, and it is easy to digest.
          Also including spirulina or super blue green algae will help.

          You may also be going through a ‘healing crisis” (toxins being released) which may be why you started to feel bad again.

        • Alright, you are the one who knows what is best for you! Keep us informed about your findings.
          I don’t think I have this hiatal hernia, but I feel obstructed in the solaris-plexis area, which causes my breathing to be shallow. For myself I explain this from the body-symbolism perspective. And yes, there must be an issue with the 3rd chakra: we aren’t using our personal power enough, restricting ourselves too much.
          And I totally agree with the whole-body approach. Everything is linked, and sensing is a great way to heal yourself (Somatic Experiencing)!

      • That is strange! Or perhaps not? ENTJ instead of INTJ. Are you sure you are extravert? From the way you write about yourself I got the impression that you are more introvert? I think the easy way to determine this is to answer the following question.
        When you are tired, how do you prefer to recharge your batteries?
        A. alone, e.g., in nature, or in your home
        B. with friends, having a talk, a drink, etc.
        If you choose B, you must be right about being ENTJ.
        Hälsar!

        • Hi again,
          Well to answer your question how I recharge my batteries – it’s definetly A – that is in nature or at home. I did the test in connection to my work and that might have affected the result. I also did a studie where I compared three teachers and three of their classes in what types they were and how the students valued the course when it was finished. An interesting thing was that one student did the test twice she went to two different classes and had two of the teachers and she had changed her answers to better cope with the teachers personality. Otherwise the result was as I thought – the number who were the complete opposite to the teacher related to the number who did not find that the course had fulfilled their expectations.
          By the way – I have a refluxproblem to.
          Thank you for your greeting in swedish! Hälsar tillbaka!

          • Thanks for your feedback. Yes, of course the results of the MBTI will vary a little, based on specific situations we are in, based on different moments in our lives. But overall our personality will be stable, I think. So my guess was correct: you are more introvert than extravert. Assuming that the NTJ part of your test result is correct, you also are INTJ! That makes our INTJ list longer…
            Ha en trevlig kväll!

  27. To Dolphin:

    “…Does “‘look’ inside your neck” mean to feel the inside the neck muscle?…”

    Yes. Sorry, i think in my language and then i translate to english.

    “…Right now these simple exercises are challenging to me…”

    That’s because is better face to face, To know that. Use your hand as a trick, you will remove bad neuronal pathways too.

    “…I have acknowledged that you are not responsible for any posting on this blog…”

    I have to put that for safety. Sorry if it makes me not polite or…but is just for my safety.

    “…but how were you able to keep your commitment on these monotonous exercises without getting tired?…”

    Because i wanted my life back, and after three months i knew that CD can be healed with a lot of work because i felt my neck better. And yes, i saw a lot of movies. Really you can do exercices while watching TV series, listening music…

    “…What were in your mind while exercising? …”

    I felt my neck, but also i thought in my life without CD…It helps to me a lot thinking in people like Michael Phelps (6 hours per day swimming) or other sportists that have to do monotonous exercices too. Also knowing this book that i put in my web (http://www.camins-neuronals-disfuncionals.net/index.php?cat=exhaustiva.php) helped me a lot because without reading him i thought that if i practise a lot i could heal my CD.

    “…Another question: In your view, how have you found the personality traits of CD’ers (including yourself, your patients, other CD people you met if any, and from blogs like this). Which personality traits and thinking patterns would cause or negatively affect CD, do you think?…”

    I’m starting now as a therapist. I would be able to answer that in 5 years if i keep working as a therapist.

    “…You have worked on correcting dysfunctional thought process/patterns…”

    Yes, this is a very important point, and it seems not important for some people. Take a look at this psychologists: Beck and Ellis, cognitive approach.

    “…Would you mind sharing us how did your personality traits and thought patterns change and help curing CD? …”

    Uf, is a very difficult and long question, even in my own language!
    If you make specific questions i will answer you.

    “…Sorry for asking so many questions – I’m very curious!…”
    You can ask that you want, no problem.

    • Just a short message to let you know I am following the discussions: thank you very much, Jordi, for all of your explanations regarding your method! Much appreciated. I think all this work will bring us closer to a ‘universal’ cure for CD! Adeu.

      • A short note to CCD: Thank you again for organizing this web site that make possible to CD’ers interact each other in pursuit of recovery. It’s been encouraging and inspiring.
        P.S. Since a few days ago, the site stopped sending email messages for subjects I’ve subscribed (and I confirmed that I’m still subscribing).

        • Interesting discussions indeed! More and more perspectives are unfolding.
          I don’t know why you stopped getting messages. Is this still the case? The software is updated and should work just fine…

          • I thought this was everyone’s issue but it seems not. I found my subscriptions were “expired,” and I tried to re-subscribe but not successful. Maybe some unknown force is telling me to slow down from the web discussions so that I can get more sleep :) It’s OK – I can just visit the website sometimes. Take care!

          • Nope – it’s impassible to stay in the loop without getting email, isn’t it? (No time for scrolling over the website for searching new comments.) The search box doesn’t seem to be working, neither. But no worries – I’ll visit here now and then. For interesting discussions, please send me a link (you see it at the end of the email message) by replying in my posting like this. Thanks!

          • That is strange. Did you try another browser or another PC? Let me know.

            Anyway, there is another easy way for you to keep track of the latest comments. In the sidebar on the right, there is a list of Recent Comments, in chronoligical order. You can click on the comments from there. Easy. I increased the number of recent comments to be shown from 5 to 15. So you can see the comment from Mal and access it from there.

          • I know it’s strange. Another browser didn’t solve the issue – I spent a little while to troubleshoot but no luck. The link of the latest comments on the sidebar helps. Thanks, CCD!

          • CCD, unfortunately, I still don’t receive posts by email (except replies on my post). But I did check out the Mal’s comments.

            By the way, have you tried AFA blue-green algae? Did it work? This is one of the superfoods (by Wolfe) so it may worth trying.

          • Sorry to hear that. I cannot do anything about it as I don’t develop the WordPress software…
            I am taking the algae since 2 months now. I am doing quite well. I do not know if that is thanks to STRC and/or the algae. The algae do not make me symptom free though, that’s for sure. I am also interesting in trying ganoderma. Perhaps after I finish the algae in a few months time.

          • CCD, it’s good to hear you are doing well. My symptoms are still in a steep roller-coaster ride – my conditions vary from week to week. It’s hard to pinpoint what really works and what makes my condition worse. Whatever I try new movement, even very simple ones like Jordi’s exercises, I get fight-back after a few days. But stretching and breathing exercises makes me feel good.

            I’ll get the algae, too – I needed a substitute to protein power which I stopped taking recently because of potential MSG. If it happens to work for alleviating the symptoms, that’s an extra benefit.
            I’ve checked out about ganoderma coffee that was recommended by STRC but I’m not a coffee drinker (and that was pricy, too). In what form are you thinking to take ganoderma? Please keep us posted if you tried it someday!

          • Well, it seems all of us are constantly seeking new ways to recover further. As a consequence, we are shooting at a moving target – or more exactly: we are moving around while shooting at the target. I think it might be wise to select (a) method(s) and stick with that for quite some time. Fine-tuning on the fly is fine, but more than fine-tuning might be too disruptive, causing distortions on the recovery path. That is my feeling. Of course each method needs to have some basic elements. But I think we know those basics by now. I will write about it (I promise).
            In your case, I would recommend you to do what makes you feel good and put the emphasis there.
            OK, let me know about your experience with the algae. As for ganoderma, the guy who recovered with it took capsules. See the section Treatments of this blog. By the way, I have been in touch with him, and his story sounds genuine. He also told me that, so far, he has not seen anyone else with CD try to recover with ganoderma. Anyway, I may try it.

          • You may be right, CCD. And if we were more easy-going and didn’t live on our head too much, we probably didn’t have CD in the first place. It’s hard to change behaviors and personality – I think it’s even harder than physical and physiological changes. By the way, I learned that one method to release anger is relaxation techniques and coping thoughts.

            Yes, I saw the video before. After trying algae, I may try the ganoderma capsules later, too.

          • Hi Dolphin, for making the required changes, I can recommend using the Law of Attraction. If done correctly, the changes will come easily! Since you are such an enthousiastic reader, look into it ;-)

          • CCD, I’ll check that out. I’m familiar with the law of attraction but I need to remind myself again and again.

            I saw you were asking about some of the AT practice elsewhere (I can no longer track without getting emails). Here is one of the distinctive one I learned from a teacher: when bending, bend from hipbones but never from the lower back, keeping back (trunk) and neck straight. In this way, you can protect your back and neck. To understand concepts of the AT (very unique), I think you need to read a solid book or two, unless you have learned from a good AT teacher for a few months.

          • Hi Dolphin, Thanks for the advice! STRC also propagates that technique for bending. So I am trying to stick with it.

            When I have time, I will look more into AT. I am interested to find the commonalities between AT, Feldenkrais, Qi Gong, and a couple more disciplines. That might lead to a specific approach for CD…

        • Guess what – after about a month break, it seems I started to receive others’ postings by email to my previous address again! (Perhaps the managing company fixed a technical glitch?) This makes my life easier :)

          • CCD – I’m getting postings by email only sporadically – suddenly stopped receiving again for five days and then one received, etc. – it’s a shaky and mysterious phenomenon (like CD). Is it possible to show the date and time to each post in the Recent Comment side bar? If not, never mind.

            I just noticed that funny characters are placed on each of us, which makes this blog more animated :)

          • Dolphin, was it from 24 to 28 October that you didn’t get those emails? If yes, there must have been a problem with one of the plugins of the site that got deactivated during that time for some mysterious reason. The plugins are being renewed often, and sometimes there is a glitch in that process. Anyway, I reactivated it yesterday. Let me know if everything is alright now.
            I will check about the possibility to add timestamps to the recent comments.
            Ah, yes, I added generated avatars to every visitor of this blog. (A new function in one of the plugins.) Hope you like it!

          • Hi CCD – Thanks for the follow up! Yes, it was around those days. Good to know that it wasn’t only my issue this time. It should be OK since I received one yesterday.

          • Dolphin, I may be on to something else. When you look in the list of most commenting visitors, you appear twice! It seems that you are being recognized as two different users. Any idea why?

          • CCD – Yes, I know why! When I stopped receiving postings by email a while ago, I tried to see how it works with another email address, using the same handle name. So it seems that the system recognizes as each email address as one person. The new address didn’t work for receiving email, so I switched back to the old one. I think someone else will post more so hopefully one of my handle names will disappear soon!

    • Hola Jordi – Thank you for sharing your insights. My last question might be too ambitious, so never mind – I may ask something more specific later.

      I agree, we need to repeat in order to master certain skills deep enough. Years ago, my tai chi teacher who was a master from China used to tell us that we can make difficult movements if we practice them thousands times. His tai chi movement was so smooth like dancing.

      I think dysfunctional thought patters cause any kind of illness both mental and physical. Perhaps you are talking about the cognitive-behavioral approach? I’ve been recently reading several psychotherapy-related books (interesting and a lot to learn) and the name of Ellis is somewhat familiar. I’ll check out about their books as well as Levitin’s book. Gracious.

      • “…I think dysfunctional thought patters cause any kind of illness both mental and physical…”

        The schema is that:

        dysfunctional thought–>anxiety–>dysfunctional thought–>anxiety…–>CD in us–>anxiety–>dysfunctional thought…

        You can cut this schema with cognitive-behavioral approach (by Ellis & Beck).

        “… I’ve been recently reading several psychotherapy-related books (interesting and a lot to learn) and the name of Ellis is somewhat familiar. I’ll check out about their books as well as Levitin’s book…”

        Is good to get information, books…but…i think is better go to one cognitive-behavioral therapist.

        I think that people with CD want to heal by theirselves and that’s a mistake. I understand that, we get CD and then lot of professionals talk about botulinum toxin and nothing else, so we look for solutions, and we forget other professionals that can help us.
        Regards.

        • Thanks, Jordi. I think not everyone may be lucky enough to see specialists. For my case I’m doing whatever I can do best within very limited time. In addition, it may be even more efficient to see specialists, if needed, after getting knowledge from all available sources in the market or Internet.
          Thank you for your thoughtful replies to each one of us! Best Regards.

          • “…I think not everyone may be lucky enough to see specialists…”
            That´s true, forgiven for my comment, was too generic.

  28. I just wanted to offer some thoughts on some of the ideas I’ve read on this page (it’s a loong page and I haven’t made it anywhere near the bottom! So sorry if any of this is redundant).

    I was interested by LeeAnn’s experience after changing her diet. You might be interested in a book called Potatos not Prozac by Kathleen DesMaisons. It’s an approach to eating that gradually cuts out sugar, and also involves other dietary changes, that are meant to balance blood sugar, serotonin and beta endorphins. Her theory is that a good percentage of the population is ‘sugar sensitive,’ and that for those people, eating sugar (or wheat, which affects the blood sugar similarly) creates a range of physical and emotional problems. A lot of the symptoms that LeeAnn described (feeling foggy, social anxiety) are among those symptoms, and I can certainly relate to them as well.

    I’ve been following her guidelines for some time and have felt significant reduction in anxiety, and an overall feelign of ‘calm’ similar to what you described, unlike anything I’d experienced in my life. I do think that social anxiety is a big part of CD, either the cause or a contributing factor.

    Also, an interesting similarity – Dr. Desmaisons describes a trait that sugar sensitive people share, which is called ‘learned helplessness.’ Basically, as a result of traumatic experiences, combined with a particular kind of brain chemistry, we learned to ‘freeze’ in the face of fear or danger, rather than attack or react. Again it relates to brain chemicals, and a release of beta endorphin that is the ‘reward’ of this kidn of freezing.

    Anyway, it might be something that CD people could relate to and coudl be of help if you’re interested. Also may be why cutting out sugar, as the STRC clnic recommends, could actually help.

    By the way, I took the personality test and am also INTJ, but just barely – my thinking and feeling scores were almost identical, and on other occasions I’ve been scored as INFP. I’m not a vegetarian and eat meat often.

    Leigh

    • Thanks a lot for your interesting contribution. I can relate to what DesMaisons says about sugar. It makes sense. Especially the freeze part of the story. I thought that sugar was mainly bad for CD due to its high acidity, thus polluting the muscles. But this adds another perspective…
      Wow, so you are INTJ as well! It all makes sense.

  29. Hola Jordi:

    Muchas gracias por tu respuesta, te quería consultar algunas dudas:
    Te comento que tengo tortícolis izquierda

    1 -. Cabeza en el centro
    2 -. Girarse despacio y recto 4 cm
    3 -. Volver al centro de 4 cm
    4 -. Répit

    Obiusly en dos o tres o cuatro semanas hay que empezar de nuevo por la primera sección …

    Para mí, lo mejor es hacer una sección, y répit esta sección toda hora. 15 min hasta de 15 minutos en una silla, a 15 minutos en frente de un espejo …¿Es este apartado tres o cuatro días, y luego cambiar la sección …

    Como ves, al utilizar el traductor, a veces se lia un poco entender las respuestas. No acabo de entender lo de cambiar de sección, ¿estoy tres o cuatro días trabajado esos 4 cm o tres o cuatro semanas? por lo que dices después entiendo que tengo que cambiar de sección cada semana, por favor, confírmame si lo he entendido bien. otro tema, cuando lo hago frente al espejo, mis ojos tienen que ir acompañando al movimiento de cabeza?

    Realmente no sé si me UNDERSTANT, si no, responda otra vez por favor y lo siento. Usted tiene que practicar la semana 4 cm, luego una semana más otros 4 cm, luego una semana más otros 4 centímetros, y otra semana 4 cm. A continuación, inicie de nuevo durante los primeros 4 cm. Usted me pregunta cuándo se puede mover 8 cm. Usted no tiene tiempo (1 día hora) así que creo que son los movimientos más pequeños, porque implican menos neuronas y ver qué happends en dos o tres meses

    Creo entender, que si mi giro de cuello tiene un recorrido total de 16 cm, eso son 4 secciones, y que la primera semana muevo una seccion 4cm y la seguda, no muevo la primera seccion mas la segunda, sino que muevo los 4cm siguientes y no llego hasta el centro, sino hasta el punto final de los 4 primeros cm, siempre de derecha a izquierda. ¿es correcto?

    Disculpa mi torpeza, las traducciones no son muy exactas y yo tengo problemas a la hora de entender el tema de las secciones.

    Muchas gracias por tu paciencia y tu interés.

    Saludos

    • Hola Olga,
      te respondo en castellano.
      Antes que nada, los ejercicios por sí solos tienen una efectividad limitada. Para mi esta enfermedad tiene que tener varios flancos, lo comento aqui: http://www.camins-neuronals-disfuncionals.net/index.php?cat=bases.php
      Además, una hora al dia es un margen de tiempo limitado, pero como ya he comentado en otro post, mejor una hora que nada.

      Los ejercicios que te comenté són los siguientes:

      1.- Cabeza en el centro, giras unos 4 cm a la derecha, muy, muy lentamente, paras, vuelves al centro, igual de lento y suave.
      Al cabo de 10, 15 min te vas a cansar, haces rotaciones, o estiras el cuello, o te tumbas un par de minutos…y repites todo el proceso, cabeza en el centro etc…
      Esto lo haces unos 4 o 5 dias.

      2.- Cabeza donde terminabas en 1, es decir a 4 cm del centro que será tu punto de partida. Y el ejercicio empieza aqui para hacer 4 cm hacia la derecha y por tanto terminar todo el arco derecho. Lo mismo, ves descansando cada 10-15 min con rotaciones y cosas asi.

      Al cabo de 4 o 5 dias…

      3.- Como el 1 pero a la izquierda…
      4.- como el 2 pero a la izquierda…

      Repito, todo muy muy suave, si te cuesta ayudate con la mano.

      “…Disculpa mi torpeza…”
      Para nada, pregunta lo que quieras.

      Te digo lo mismo que digo siempre: no me hago responsable del uso que se haga de lo que diga, no te he visto y no te conozco, por tanto mi información sobre ti es muy limitada.
      Saludos.

  30. Hola Jordi:

    Muchas gracias por tu pronta y detallada respuesta, en castellano me ha resultado fácil entender tus recomendacioes, pero cuando utilizo el traductor a mí me resulta más complicado entender algunas cosas.

    He leido tu página y estoy en tratamiento con el psiquiatra y una psicóloga, también me están poniendo botox pero llevo sólo una infiltración ya que hace poco que me diagnosticaron la enfermedad.

    Voy a seguir tus recomendaciones, a ver que tal me va en unos meses, me gustaría saber si es bueno intentar llevar la cabeza derecha cua
    ndo noto que se me gira, aunque tenga que hacer fuerza, y si puedo hacer los ejercicios también mientras camino.

    Muchas gracias por tu amabilidad

    Un saludo

    • “…me gustaría saber si es bueno intentar llevar la cabeza derecha cuando noto que se me gira, aunque tenga que hacer fuerza…”

      Esto que me dices de “tener que hacer fuerza…” no me gusta mucho porque lo que haces es implicar a los otros músculos en la distonía. Evidentemente es inevitable ofrecer ésta resistencia. ¿Cómo actuar con los movimientos distónicos? es una pregunta dificil de la que sólo puedo intuir la respuesta. No te resistas, haz el movimiento distónico pero intenta ralentizarlo muy suavemente…Yo lo que hice en su día fue ponerme un collarin cervical blando durante tres meses y hacer muchos ejercicios en casa, por tanto mi movimiento distónico estaba fisicamente barrado por el collarin. Yo sólo aconsejo ésto cuando veo que una persona va a entrenar bastantes horas en casa, si no, no lo aconsejo.

      “…y si puedo hacer los ejercicios también mientras camino…”

      Sí, puedes hacerlo pero intenta hacer parte de los ejercicios en casa, focalizando tu atención en el movimiento cervical.
      Recuerda, los movimientos cervicales tienen que ser extremadamente lentos.
      Hacer muchas sesiones al dia también ayuda mucho. Ejemplo: tienes que ir a la habitación, pues delante del espejo haces cinco segundos del sector cervical que te toque. Vas al wc, pues lo mismo…
      Un saludo.

      • La última frase que he puesto queda algo rara (queria decir baño). Ya que no tienes mucho tiempo, aprovecha cada momento que puedas para hacer cinco o diez segundos de ejercicios: en el baño, en la cocina, en el trabajo disimuladamente… Siempre con el mismo sector.

  31. Hola Jordi:

    Gracias por tu respuesta, te quería consultar algo más que me preocupa, ayer me hicieron un electromiograma porque al girar el cuello a la izquierda levanto un poco la barbilla y el resultado es que tengo una leve laterócolis derecha además de la tortícolis izquierda, que es lo más evidente.

    ¿Cambia algo esto los ejercicios que me recomendaste? ¿puedo añadir alguno más para la laterócolis que como te comento es bastante leve?

    Otra duda que tengo es si en los ejercicios de espejo mi mirada tiene que permanecer fija en el espejo o seguir el movimiento de mi cabeza.

    Y por último, ¿cómo puedo valorar si hay una mejoría habiéndome infiltrado botox? ¿ quizás porque note que me encuentro mejor durante más tiempo que en la infiltración anterior o que va desapareciendo algún síntoma?

    Me están resultando de muchísima ayuda tus recomendaciones, agradezco mucho tu paciencia y tus explicaciones. Espero tu atenta respuesta.

    Un saludo

    • “…¿Cambia algo esto los ejercicios que me recomendaste?…”

      ¿Ésta laterocollis la tienes en el límite del espasmo hacia la izquierda? (¿o sea se te fuerza el movimiento al máximo en la izquierda y luego te sube la barbilla?

      No, no tiene por qué cambiar, más adelante ya variaremos algo si hace falta.
      Intenta describirme el movimiento pormenorizado.

      “…¿puedo añadir alguno más para la laterócolis que como te comento es bastante leve?…”
      Sí, pero primero me describes el movimiento distónico de forma pormenorizada para hacerme una idea.

      “…Otra duda que tengo es si en los ejercicios de espejo mi mirada tiene que permanecer fija en el espejo o seguir el movimiento de mi cabeza…”

      No, no fuerzes los músculos de los ojos! En la distonia es frecuente forzar la mirada, intenta evitarlo. Cuando hagas los ejercicios no tienes por qué mirarte todo el rato en el espejo, solo cuando el cuello esté cerca del centro, pero sin forzar. Si lo haces deltante de una persona, tampoco la mires todo el rato, sólo cuando no haga falta forzar la vista.

      “…Y por último, ¿cómo puedo valorar si hay una mejoría habiéndome infiltrado botox? ¿ quizás porque note que me encuentro mejor durante más tiempo que en la infiltración anterior o que va desapareciendo algún síntoma?…”

      En las últimas fases de recuperación (es osado hablar de últimas fases de recuperación en DC, recuerdo que a mi me costó 6 años de trabajo intensivo) sí que los diferentes ejercicios conllevan mejora al cabo de dos dias y hasta uno. Pero al inicio, y repito bajo un entreno, practica intensiva, los cambios son tan sutiles que sólo se aprecian al cabo de dos tres meses…y sobretodo al cabo de medio año o un año.

      Recuerdo que yo jamás te he visto y por tanto no me hago responsable del uso que se haga de lo dicho anteriormente.

  32. Hola Jordi,

    Te detallo cómo es mi laterólocolis..

    Cuando empiezo a girar la cabeza a la izquierda, empieza a elevarse la barbilla,poco a poco y va subiendo levemente hasta completar el recorrido, máximo 2 cm.

    Y a veces al mirar de frente, me da algún tironcillo doblando la cabeza de lado a la derecha, , pero sin girar a la izquierda, el tironcillo tiene también un recorrido máximo de 2 cm

    No sé si me habré explicado bien, espero que sí.

    Muchas gracias por tu ayuda y un saludo

    • It is fine to put a link to this blog, thanks ;-)

      However, you mention that you feel that this blog does not look at neurology, psychiatry, and psychology. I totally disagree. One of the main reasons for writing this blog was to research the cause of CD. See the sections Phenomena and Perspectives. Neurologists say that the cause of CD is unknown. I say that CD is caused by childhood trauma, and I made considerable effort to prove this and/or make this plausible. In the section Phenomena I describe all the findings regarding people with CD. And in the section Perspectives I make a link of these phenomena to childhood trauma. At this stage, I don’t think there is any other site in the world addressing this topic so explicitly.
      The section Treatments is only a (limited) portion of this blog. And I am planning to write another section regarding curing CD.

      If you can agree, could you please modify the text on your site?

    • Hola Jordi,
      Does progressive muscle relaxation work for CD’ers in releasing body tension, especially in the neck and shoulders tension? I’m actually getting more CD symptoms (may be fight-back) by practicing it. Any special consideration for CD’ers in practicing this technique?
      Gracias.

      • Hello,
        if you have more CD symptoms you are doing something bad.
        I don’t know you, and i don’t know how are you doing the progressive muscle relaxation, bud there are some things to say:

        - Progressive muscle relaxation is good for relax all body, bud your problem is in the neck. So, you can do progressive muscle relaxation bud only 10% of your training time.
        - This 90% left focus on your neck (and shoulders)
        - In progressive muscle relaxation they don’t talk (as i know) how the contraction-relax has to be. People with CD has to contrac-relax their neck very very slowly and never getting maximum contraction! Maximum contraction goes to CD. So you have to contract 5% of maximum contraction, and then relax, very slowly too.

        One exemple:

        - Start contraction, 1 seg (more contraction), 2 seg (more contraction), 3 seg (more contraction), 4 seg (more contraction), 5 seg (more contraction)…now you are in 5% of maximum contraction. Start relax from this 5%, 1 seg (less contraction), 2 seg (less contraction), 3 seg (less contraction), 4 seg (less contraction), 5 seg and now you are in maximum relax.
        Regards.

        • Jordi and CCD, the site will not let me reply to your last messages where you responded to me so I am replying to this one. As far as what I expected from doctors, don’t we all hope for a magic pill that will instantly make it go away! I knew that was not likely, but I guess I thought I would be better than where I am with their help. So I think the bottom line I have realized is that no one knows my body and what it needs better than I do. I just have to listen to it and take care of it. So for now, no more doctors! I want to let you know my progress so far since starting Jordi’s exercises (about three weeks now). For sure they have become easier than in the beginning. I was able to do about 10 rotations in each direction (with difficulty) in the beginning and am now able to do more with each set and do sets more frequently throughout the day. I don’t think I am going as slow as you had stated to go, but I am trying to focus on slowing down (it does make them harder though). I have been doing forward and back (gently) as well as lateral and side to side. Even though I have antecollis, the most pain is with the lateral exercise (looking left and right), then side to side movement (ear to shoulder), then back movement, and finally forward where there is virtually no pain. If you have other suggestions for exercises for me, I would appreciate it. The other thing I have started about a week ago is vocal exercises and speech therapy (on my own, no doctors). The funny thing I have noticed is that just to mouth words without sound, my CD is not activated (or very little), but immedicately upon vocalizing the exact same words, the tension happens. I need to figure out why this is the case. In any event, I have a feeling this type of therapy will be very beneficial for me as this is my greatest problem with CD. So far, it has helped to increase focus on proper breathing, proper articulation, and to recognize when tension is building so I can slow down and release more frequently. Now this is hard to focus on in regular conversation without causing disruption, but this is what I have to do for now so I guess others will have to deal with it or talk to someone else :) . This is the other thing I am working on, caring less about what others think and their perception of me. Worrying about this only leads to more tension and bad things to start happening.

          Overall I think I am in as good of a place as I was on even my best botox day so I feel good about where I am headed. I would like to get a handle on what techniques everyone who currently has active CD on this blog is practicing and where you would rate your state now compared to when your CD was at it’s worst. For me, I am currently doing preocipitve exercises (1 hour per day), vocal and speech therapy (45 minutes per day), relaxation/stretching (20-30 minutes per day). On a scale of 1 to 10 (1 being when I was at the worst), I am at about a 5 currently). Next I am going to look in to AT as it seems to have helped many people on this site.

          • “…If you have other suggestions for exercises for me, I would appreciate it…”

            Keep doing the same exercices that you did and:

            Breathing Exercises
            ——————-

            Do one full inspiration. Stop breathing. Head in the center and very slowly put your head forward and then to the center again and repit repit…

            difficulty talking
            ——————

            Learn some tong-twister or song or…
            Say that tong-twister while your are doing the basic exercices (slowly etc etc…)

          • Hi Carrie, let me say that I am proud of you! Wow! Just several months ago you were desperate and thought that you didn’t have the time and energy to start working on your recovery. And now look at you! Impressive!!! Be grateful to your body for giving you CD and for stimulating you to positively work on yourself!
            I think the basic ingredients of dealing with CD involve: re-training of the brain and body (e.g., through repetitive exercise, also in real-life situations), relaxation, loving yourself (e.g., not caring what others think about you), and dealing with the trauma (e.g., with Somatic Experiencing). I am doing all of that. On a scale of 1 to 10 (1 being worst), I am now at 7.

          • Good for you Carrie, you are doing so well!
            congratulations on doing Jordi’s exercises for one hour per day, that is quite an accomplishment, they are so simple yet so difficult with our condition.
            I have not been doing them yet, the sensory trick does not work for me, so the simple left to right rotation is very jerky and in my opinion will only create more dysfunctional neural pathways. So as I improve with the strc program I will later incorporate Jordi’s movements.
            I would say on a scale of 1 to 10 right now I am a 5.
            The strc is working for me, I highly recommend it. Later I will also try feldenkrais or AT and I will be doing Noel Batten’s program.
            Healing has become a full time job, wish we were getting paid for it! :)

  33. I want to share something with all of you that I feel is helping me.
    I am self adjusting my neck with the Dorn method. I haven’t actuallly bought the ebook yet. But a practitioner of the dorn method Thomas Zurdell emailed me exact directions on how to do it.
    Since I started several weeks ago I have noticed I no longer get a really uncomfortable feeling in my neck like when the c1 and c2 are REALLY out of alignment. And when I went for my weekly chiro visit last week, my atlas was not “out” that much. I don’t think this is a coincidence.
    Anyway here are the directions, it is easy and I feel I am getting better at it.

    –”atlas re-balancing should be done in any case several times a day since this area of our body gets easy out of balance and sometimes does not re-align fast by itself.

    The neck exercises (book or free on website, http://www.dorn-method.com/dornmethod_selfhelp.html ) shows how to do this.

    Place a finger (thumb) just below the mastoid process (below and behind the ear) and press as firm as you can do without feeling pain or becoming tense
    while at the same time the head leans onto the pressing finger (counterpressure).
    The pressure is best coming from the area close to the first joint of the thumb rather than the tip of the thumb while pressing (see picture in website)
    Now direct the pressure inwards and upwards while you move the head like a nono movement (shake it left / right) approx 2 times a second for about 10 / 15 seconds.
    this can be repeated a few times.
    Additional you may add another movement i.e. a yes / yes movement notting the head while pressing and pressure directed more inwards then.
    This can be done on both sides at the same time or one side after the other.–”

    And if you want a visual on the placement of the fingers go to this webpage and scroll down to bottom. Also re-watch the video I had posted earlier.
    http://www.dorn-method.com/dornmethod_selfhelp.html

    • Thanks for sharing this Sunflower, it’s something I’m trying as well after seeing the video you posted earlier. My upper one or two vertebrae usually feel VERY out of whack and uncomfortable, like a bent wire, and often my head gets “stuck” until I tilt my chin slightly and get a sharp crack in that upper vertebra. Then a minute or two later it can happen again. I have looked for Atlas Orthogonal in my area but no luck so far. I’m reluctant to try upper cervical chiropractic because it feels kind of risky with this condition, but these exercises are easy to try myself. Glad to hear that you are getting some results.

      • Leigh, going to an upper cervical chiro is not risky, I have been seeing one for several months now, it makes me feel super human, but it does not last because our muscles are in spasm. The physical cause of our ST is misalignment of the upper cervical area, causing miscommunication with the brain, so in my opinion in order for a full healing we must retain this vertabrae alignment. This will happen once our muscles are normalized.
        There are other types of upper cervical chiro’s like the nucca method, which is most common. Upcspine.com has a directory of these types of chiros for your area of the world.

        I know what you mean about feeling very uncomfortable in the neck, but since I have been doing these self adjustments i no longer feel that way, and I do it several times a day.
        Let us know if you have success doing this.

        • It’s great to hear that this is working for you. I see there is a nucca practitioner in my area.

          Do you feel that the upper cervical chiropractic is also helping to gradually normalize your muscles, so the results will last? Or are you pursuing other treatments to normalize the muscles? My understanding of the STRC program is that the goal is to stretch out those muscles in the back of the neck, so perhaps the result there is the same – you eventually reduce the pulling, and the upper vertebra is able to return to a normal position. Maybe STRC in combination with upper cervical could be a good combo?

          • Hi Leigh, we’re here at the same time!
            When i was going to my chiro regularly twice a week, it was relaxing the muscles to an extent. He was convinced that his work alone could cure me. This is possible, but it would probably take a year and i cannot afford this.
            So my strategy is to normalize the muscles on my own with the strc stretches, and yes it is working, my muscles are beginning to heal, but still have a long way to go. I have been on the strc for 4 months now. And yes it is about stretching the muscles in the back of the head.
            The strc and this type of chiro is a good combination once the muscles are normalized. Right now it is probably a waste of money to see the chiro because it does not last. So for now I will just keep do the self adjusting, it is keeping me comfortable.
            Have you seen the Noel Batten’s videos?
            I agree with his philosophy that the chriopractic adjustments alone are not enough they have to be supported with massage, breathing and relaxation techniques, blood flow exercises, and the most important he says is overcoming anxious sleep. We must get enough of the REM sleep in order to heal.

        • Yes, I saw the Noel Batten videos, it looks very interesting. I’m not sure what to do to increase blood flow, apart from massage. I’ve been doing STRC for 7 months, so we’re at a similar point, though I’ve had to cut out a number of the more intense exercises since they aggravate a herniated disk. It has definitly helped with flexibility, as well as the physio that I’m doing. I’ll let you know what changes I see with the Dorn exercises.

          There are so many possible approaches to treating this – wouldn’t it be great if we had a cervical dystonia treatment centre where all these things were integrated? Even the movement disorders clinic I go to doesn’t address any of the possible approaches apart from Botox.

          • Sorry, there are so many people communicating here now I forgot you were on the STRC.
            I think the strc stretches gives us a lot of blood flow movement, and this will get more and more effective when our muscles become looser.

            We may have to open up this type of clinic ourselves!

          • Regarding increasing blood flow, a recovered person said that “qua sha” by an acupuncturist helped a lot to increase blood flow, thereby helped for her recovery. I’ve never tried that, though.

  34. Hola Jordi

    Llevo un mes realizando los ejercicios una hora al día y y noto que mantengo más tiempo la cabeza derecha.
    Por favor, cuando puedas me gustaría que me recomendaras algún ejercicio para la laterócolis, o saber si con los ejercicios que hago para la tortícolis de momento es suficiente.
    Cuando más movimiento tengo es al comer, cuando manejo los cubiertos la cabeza se me gira, ¿hay algún consejo que me puedas dar para manejarme mejor?

    Muchas gracias y un saludo

    • Hola Olga,
      “…Por favor, cuando puedas me gustaría que me recomendaras algún ejercicio para la laterócolis…”
      Según entendí tienes tortículis y al final del trayecto laterocollis.
      Dado que practicas poco (desde mi punto de vista una hora al día es poco) enfocaría los ejercicios a la tortículis, piensa que si dominas el inicio del movimiento, el final (la laterócollis) ya no se produce.
      Por tanto practica todo lo intensivamente que puedas los de la torticulis.
      “…Cuando más movimiento tengo es al comer, cuando manejo los cubiertos la cabeza se me gira…”
      Desde mi punto de vista primero hay que practicar con ejercicios genéricos durante un año más o menos (lo que tu haces ahora) y luego pasar a situaciones específicas.
      Pero bueno, aqui tienes unos ejercicios para ésta situación en concreto:

      1.- Sentada en la silla dónde comes, con los brazos extendidos hacia delante. Haces los ejercicios que ya sabes para la tortículis. Prueba con dos brazos, con uno etc.
      2.- Sentada igualmente en la misma silla, con los brazos extendidos en cruz. Idem.
      3.- Sentada de la misma manera con los brazos estirados hacia arriba. Idem.
      4.- Recuerda hacer ejercicios para relajar cervicales y hombros cuando estés algo cansada: rotaciones cervicales, de hombros, automasajes, los movimientos que ya haces pero con la cabeza apoyada en la cama/sofá…

      Lo que hacemos aqui es reeducar los movimientos cervicales con los músculos de los hombros activados.

      Recuerda, siempre movimientos muy lentos, muy suaves, no busques mejoras a corto plazo, tardan pero vienen.
      Recuerda que yo no te he visto nunca. Coméntale a tu neurólogo que haces estos ejercicios, él mejor que nadie te conoce. Coméntale también la página web en la que hago una visión general de todo el proceso (www.camins-neuronals-disfuncionals.net) y qué opina del asunto. Como entenderás quiero que la persona que te conoce mejor te aconseje.
      Un saludo.

  35. Hi, iv just been diagnosed with spasmodic torticollis, iv had neck pain for years but now I have no control of my neck/head. My head tilts all the way to my right shoulder and also I have tremors and it throws itself to the left what is very painful. I’m also nearly 7 months pregnant. I am very interested In dr Lee’s treatment as find the only relief and timetable neck is still is when I have a glass of water in mouth. The only proplem is I live in the UK In Essex (near London) so don’t know if this treatment can be done here.

    Please help if you can as I don’t know how going to look after my baby like this.

    Thank you

    • Welcome to this blog! Dr. Lee’s treatment can be effective, but you need to go to South Korea for a very long time. It will be costly as well. So if you have a lot of time and money, that’s an interesting option. Otherwise I can recommend you to try the other approaches in the Treatments section of this blog. The STRC method definitely works. Look it up. Also, Jordi in Barcelona has developed his own approach (which is in many ways similar to the STRC method) that sounds very promising. Look it up in the Treatments section. As for having your baby, you should get in touch with Amelia (on this blog). She also raised her kids while having full-blown CD.

    • Hi Michelle,
      here is a link to a testimonial of the strc method.
      Abigail Brown, the creator of the program also had full blown CD after her two children were born. She became well and so can you. Here it is, hope you are inspired.
      http://www.stclinic.com/directors-testimonial

      It is easy to learn and her long distance course is only $500.00 USD

      • Wow sunflower sprout this does look promising! Will defo have a look into this :) I haven’t got a lot of money but if it works I would give more than the 500 dollars as a donation to help others!

        Thanks for the link – have you done this course? X

        • Hi Michelle,

          I’ve been doing the STRC course for seven months, and it has definitely helped me. I think many of the people on this blog are using it. I noticed a difference pretty soon. It’s not a cure, but it has given me more flexibility and helped me to get ‘unstuck.’ It takes time and commitment though. Definitely check out the Treatment section of this blog, there are lots of good ideas there. Wishing you healing and health for you and your baby.

    • Hello Michelle,

      I feel with you, and it’s painful to look back to all of that. When I was at your place, I thought that I couldn’t care my baby in my arms, that I wouldn’t be able to feed him, to do all those things you have to do with babies, because I always needed one had for my head. And even birth seemed an impossible thing to me….. My 3 kids came with cesarienne (sorry I don’t know the english word; they didn’t came the natural way, but by surgery because I wasn’t able to do this effort ;( ).
      But after birth I never had a problem to care for my little angels. It won’t be easy, but it will be marvellous. I have a very very deep relation especially with my first son. Because at that time I stayed nearly 2 years at home with him. There were a lot of painfull and desperated moments but all in all I think know that it was a very beautiful period too. Just don’t give up!

      I glas of water helped me too, but also just putting a hand on my mouth, or pressing a hand on my chest (at the height of my heart, for you perhaps better on the right side). I have long hairs, I found a lot of tricks to hold my had with my hairs… there are a lot of ways to help yourself, you will see ;)

      If I can help you don’t hesitate. I life in Luxembourg, not so far from England ;)

      stay strong for you and your little baby, it will be allright

  36. To CCD:
    Hello,

    When i have a pacient with CD in my desk i want to see he/she every week, just to avoid pain, just to know if the sensory trick works, and change things, and see by myself how he/she is doing the exercices.
    All CD can be different in some ways so we have to work with this differences. And the exercices that work in one pacient can´t work in another, and even one exercice that work with one pacient this year, may not work the next year…

    Let me know what kind of CD do you have:

    1.- Your neck is moving to the left every one or two secons and then you put your head in the center again? (clonic type, dinamic dystonia)

    2.- or your head is always in the left side? (tonic type, static dystonia)

    Stop doing exercices i have to know more from you. Now you are not confortable and your sensory trick doesn´t work, and you have to make effort, that´s not my way to heal CD. There are exercices for tonic CD and exercices for clonic CD, sometimes are the same bud sometimes not…

    • Hi jordi!

      Thank you for your reply.

      My symptoms seem to be getting worse each day – at the moment when I get out of bed my head tilts to my right shoulder and my chin goes to my left shoulder what is very painful. I can pull my head Back in a straight position but it just goes straight back so I constantly fighting with it what makes me very dizzy. The only time I can keep my head straight is when I have a glass of water to my mouth but am worried that as I’m getting worse each day that this will not work soon.

      Thank you for your help, it very nice of you. :) x

      • Hello Michelle,
        yes there is hope out there!
        I´ve got CD and i´m totally free of simptoms. I did a lot of work but i can say that i heal my CD.
        My advice, go to your neurologist, check with him/her the Treatments below this page choose one (with your neurologist), and then work work and work…
        I don´t know if you are asking me for help now in your text. Be explicit please, english is not my first language.
        Regards.

    • Hi Jordi,

      Thanks for your continued support and feedback.

      Well, when my CD started over 1 year ago, it was mostly clonic. Then, in the course of the time, it developed more into a tonic type. I still feel a constant pull to the left. (But I can keep my head straight most of the time – thanks to the STRC program!) Since a month or so I also feel a tremor. When I sit and eat, or type a message on my PC, my head is straight and doesn’t move. However, when I try to (slowly) turn my head I often feel a tremor and can see my head move with some hickups. The movement is not fluent. And it happens mostly when I turn my head to the right.

      Finally, I am doing quite OK and feel quite comfortable.

      I am curious to hear which kind of exercises you think would be most suitable for me! And if you can, please also explain the basic difference between exercises for clonic and for tonic type CD.

      • Our objective is to get a cervical movement with minimum muscle activation (CMWMMA) or fluent movement. People without CD do that.

        “…But I can keep my head straight most of the time…”
        “…Since a month or so I also feel a tremor. …”
        Yes, but you have still your CD insight, you don´t have CMWMMA. In my oppinion you still have lot of neck muscles activated.
        What to do? now commes the most difficult part because you have to choose your exercices carefully. They can change every week. In that part one exercice is good one week, after that the brain doesn´t learn anymore with that exercice, and you have to change the exercice. Maybe, in a year the same exercice runs again for another week…
        General example that can be upgraded:
        Straight head and relax and contract very slow, you have to learn again how to relax your neck muscles. You can do that up, or in a chair, or watching TV or…

        “…when I try to (slowly) turn my head I often feel a tremor and can see my head move with some hickups…”
        “…The movement is not fluent…”
        You still have bad neuronal paths and neck muscle hypertrophy. That can be fixed with slow movemnts and contract and relax exercices with your neck…
        One question: when you feel tremor does the trick run? if yes that´s a good exercice too: you feel tremor, you run the trick, the tremor goes and repit repit repit…
        I’m not more explicit with the exercices because you are in STRC and it runs for you so keep practicing.

        “…explain the basic difference between exercises for clonic and for tonic type CD…”

        I repit, there are a lot of exercices to get CMWMMA, but in general:

        1- Clonic: you still have some muscles that are good. So take advantage of this. Exercices: slow movements with the neck. We have talk about that many times in the blog.

        2.- Tonic: all muscles in the neck are in contraction. No motion.
        Exercices: contract-relax, contract-relax…slow and softy, NEVER hard contraction!

        This are the basic differences.

        • Hello Jordi, thanks a lot for your continued support!
          Yes, I still have CD inside. It is getting less and less, but it is not yet gone.
          Do you have a “recipe” to determine which exercise is good at a given moment? Can I do that myself? And how do I know that the brain doesn’t learn anymore with a particular exercise, do that I have to start with a new one?
          Anyway, I will try the contraction exercise!

          When I feel the tremor, the trick works for about a few seconds (I do it by touching the back of my head), but then its effect is gone. So the sensory trick doesn’t seem to help me much when exercising.

          Rergarding your explanation about exercises for clonic and tonic type CD, I am not sure if I understand what you mean. When the neurologist took an electromyogram of my neck muscles, it was clear that several muscles were affected by CD. Most of them with a constant high muscle tone, and some with a tremor. Also, another portion of my neck muscles was “normal”. So in my view, part of my neck is clonic, part is tonic, and another part is normal. And I think that is a common pattern for other CD patients as well. And with this pattern, I have had periods (especially in the beginning) with my neck locked/turned to the left. And still I wasn’t 100% tonic at that time… What do you think?

          Finally, I think you have already heard about your fellow countryman Joaquín Farias, who treats hand dystonia (writer’s cramp) with proprioceptive exercise. See: http://www.focaldystonia.net/. The interesting thing is that he claims to get results very fast (typically 6 months). Have you ever been in touch with him and tried to understand what the differences between his and your approach are? Is it simply that the neck is more complex and needs more time to recover? Or does he apply a different type of proprioceptive exercise?
          (On his website, he actually also showcases a CD patient who is “treated” by him. It does not look convincing to me however.)

          • “…Finally, I think you have already heard about your fellow countryman Joaquín Farias, who treats hand dystonia (writer’s cramp) with proprioceptive exercise…”

            I took the sentence “propioceptive exercices” from his web (i think) because i thought it was a good way to explain that…but now i think is not a good idea. People understant more “reeducation” than propioceptive exercices…i think i will change that from my web.
            The propioceptive sense is a sense that info the brain where your arm are, or your leg, or your neck, and if you know where are, you can correct, and change the positions, so you can learn. That´s because i used that word.
            I like another words that he uses too: “neuroplastic trainning”, “reorganization”. Is that you do when you learn something, when you practise someting…and when we try to heal CD (diluting disfunctional neuronal paths in my words)
            Another interesting person that you can see on internet is J.P.Bleton, see my web http://www.camins-neuronals-disfuncionals.net/index.php?cat=links.php

            “…he claims to get results very fast…”
            I see “…The average time of recovery of 90-100% of abilities is established as six months to one year of training…” in CD? i dubt that. I spent six years. Perhaps because my CD was heavy…i don´t really know. But for me recovery means total recovery and that is more than one year.

            “…Have you ever been in touch with him and tried to understand what the differences between his and your approach are?…”
            No.
            “…Or does he apply a different type of proprioceptive exercise?…”
            You know my approach:

            1.- Psychiatric
            2.- Psychological
            3.- Reeducative (you know my exercices, there are explicit in my web, in your web… part of them at least)

            and if you take botulinum toxin for a few months better to get heal faster.

            But i can’t see his approach.

            I will answer you the other questions as soon as possible, sorry about that, i’m a little bit stresed now.
            Regards!

          • Hi Jordi,

            Thanks for your reply. I understand what you say. Well, for me it is hard to compare your methods, just based on the things I read. It would be great if you could get in touch with him and communicate directly. Who knows, you might find some powerful synergies! I am encouraging you to talk with him when you have the time ;-) Imagine that you might learn something from him that allows to shorten the recovery period?

            I am looking forward to getting your replies to my other questions. But please don’t feel pressured to reply soon!

            Good luck with your current challenges and take good care of yourself!

          • Hello CCD,
            First of all: for me healing CD means work a lot. Means spend every day some time to practice/work/doing exercices… People with CD has lost their neck control, so they have to re-educate again his muscles. That means for me 3 years (90% ok depending on your work/practise/…). Yes, it´s hard, but more hard is to live all your life with CD. I try to be honest, for me healing CD means all that. If you know one person who do that in three-six months or one year ask him. That he knows has no price! But i doubt. What do you think when you hear: “learn english in three months!”, “learn how to be a JavaScript master in one month”, “lose your weight in three months…”
            In CD you have lost all your neck muscle control. That means new brain structures that you have to forget or replace for new neuronal paths, so you have to forget first and build after, or remember…that´s not easy and tooks time and effort.

            “…Do you have a “recipe” to determine which exercise is good at a given moment?…”
            Not recipe. When a person with CD start re-education the first three months-one year there are not feedback. So you do the exercices again and again…Some general rules?
            1.- The exercices have to be soft and confortable with your neck.
            2.- change your exercices every week. Brain is lazy, if you do the same exercice the brain try to do that automatically, without effort, without using cerebral cortex…so change to learn every week.
            3.- Change the exercices doesn´t mind changing the area that you are working with. For exemple: it tooks me a lot of time to control my neck in this situation: sitting in a chair, picking up one thing on the floor from my right side. My neck started shaking. Exercices:

            3.1.- Been inclined pretending to be pick up something with my arm extended, and then moving my neck very slow from right to left.
            3.2.- idem , and then contract-relax my neck
            3.3.- idem , and then bouncing a smal ball
            etc…
            Time to heal that part? maybe…uf! lot of time!

            “…Can I do that myself?…”
            If you work a lot yes!

            “…And how do I know that the brain doesn’t learn anymore with a particular exercise, do that I have to start with a new one?…”
            General rule: after two weeks change.
            First year you have not feedback, so you can´t know. After that when you choose an exercice in one month you will feel better, but you will not improve more with that specific exercice, so change.
            After two or three years after one exercice in one week you will feel better, but you will not improve more with that specific exercice, so change.
            After three-four years after one exercice in one or two days…idem…

            And the point is, that you can repit the exercice that you did one year before, because it runs again for another week.

            “…Rergarding your explanation about exercises for clonic and tonic type CD…”

            1.- Clonic: move your neck very slowly doing “yes” or doing “not”

            2.- Tonic: don´t do movements, only try to learn how to relax-contract your neck. How? contract your neck very soft, stay there 5 secons, and relax your neck

            “…So in my view, part of my neck is clonic, part is tonic, and another part is normal. And I think that is a common pattern for other CD patients as well. And with this pattern, I have had periods (especially in the beginning) with my neck locked/turned to the left. And still I wasn’t 100% tonic at that time… What do you think?…”

            I agree with that. I think that CD clonic or CD tonic helps doctors to describe CD, but clonic and tonic type can be mixed in one person, or can change…

            I know that you expect from me some magical exercices to heal your CD. When i have a pacient i want he/she comes every week to my office. I want a see how he/she is doing the exercices. I want a know how is he/she feeling the exercices, i want their feedback in order to change or not. Is dificult for me to say what exercices you can do if i don´t know you…sorry about that…

          • Thank you very much for your very elaborate reply Jordi.

            Okay, it seems that you are telling me that you do not believe what Dr. Farias says, so you do not want to get in touch with him. You could be right, but who knows? Well, it’s your decision.
            I do not expect magical exercises to heal my CD. Then you haven’t understood what I wrote on this blog. I think that, apart from exercises, much more is required to heal. Yet, there are many people who have healed themselves, often in different ways. Therefore, I think it is very interesting to exchange information and find commonalities and synergies between the different approaches…

            Very nice explanation about how to do, determine and change the exercises. It has become much clearer to me what you mean! I will give it a go, although with less hours than you did, next to STRC and Qi Gong.

            And I will get in touch with you sometime soon. Been busy…

            Thanks again!

      • Hello CD,
        (this is not the place where I wanted to place this post, but at the right place was no reply place)

        About skiing, I have been skiing with CD, a lot, fast and far and I think that were the moments during them I really felt free again. I have also been paragliding (with skies, without skies) …. and never ever felt an negative impact !

        For other sports, I don’t want to stop dancing jumping…. I avoided some parts, but that were often the funniest one. So now I have developed again my own method. I do more violent exercises while wearing a neck collar , so I protect the neck. When I take the collar of after the exercises it was sometimes a little painfull, so now after sport I lay down on my bed, take the collar of during laying and then relaxe for some minutes before standing up, and that really workes for me ;) )))).

        Nice week for everyone

        • Hi Amelia, that is nice to hear! So that is consistent with my experience! I also take frequent breaks after exercise. That does help.
          I think it is a very individual thing. And the key is just to listen to your body. If the body tells you it’s alright to do something, then why not? Take care!

          • Hi CCD,

            just about the spider ;) It wasn’t as big as that to cause a physical chock, just a mental one.

            I started working 12 years ago and I still wait for the moment that somebody will walk in with a big spider and will tell me “help help, she has a broken leg” I think a professional answer would be “special patients need special doctors” ;) . I yet had a snake with a throat problem, but where do it begin and where does it end? Snakes also can have spasm latero, antero, retro….

            No worry a good hour after the incident spasms were gone and I enjoyed my Sunday ;)

          • Well, spiders can afford to lose a couple of legs. Also, they can grow missing legs back! So there is no need whatsoever to touch them or to find any excuses at all :-)

            But I am amazed that snakes can have CD! Wow, one of the creatures on this planet I do not easily identify with. But that may change from now on …

            Good to hear that your spasms were gone soon!

  37. Thank you for your reply CCD, it’s good to know there is hope out there. I’m at the stage of just lying in bed and feeling sorry for myself but I know I need to fight this not just for me but for my little one when she is born! Thanks again for your advice xx

    • Hi Michelle, feeling sorry for yourself is understandable but not helpful. For me it helped to understand that I got CD for a reason, and that I need to be thankful to my body for giving me this message. Did you closely read the sections Phenomena and Perspectives (in that order) of this site? It may shed some light on your situation. Take care and stay tuned!

    • Hi Michelle, feeling sorry for yourself is understandable but not helpful. For me it helped to understand that I got CD for a reason, and that I need to be thankful to my body for giving me this message. Did you closely read the sections Phenomena and Perspectives (in that order) of this site? It may shed some light on your situation. Take care and stay tuned!

  38. Hi everyone,
    I’d like to share some information:
    If you are interested in movement exercises for healing purposes, I recommend a book “The Fourfold Path to Healing” by Cowan, McMillan, and Fallon. The fourfold stand for nutrition (diet), therapeutics (herbal and homeopathic treatments), movement (more than 30 exercises), and meditation (objective thinking). There are also chapters for 15 different diseases, including neurological diseases, women’s diseases, and chronic fatigue. The ideas of diet (mainly based on Weston Price and Rudolf Steiner’s concepts) is similar to the ones of STRC’s but explained more in detail by specialists. Some exercises (called “Spacial Dynamics” created by a somatic movement therapist) somewhat similar to those of SE, qi gong, or STRC. There exercises are simple and use little muscles. Tension release exercises are more practical to me than those in a relaxation workbook and other books. I have added some of these exercises in my routine.
    I also found concepts in this book interesting: for example,
    “Movement…initiated and carried out by the muscular system and then sensed by the nervous system, not the other way around…neurological disease all have their origin in sensory simulation.”(citing Rudolf Steiner’s idea)
    “if we can consciously change the way we move…, we can actually change the way we feel, and even the way we think.”
    “The movement is a release rather than an effort.”

    One more thing, which I learned in the first AT lesson about 10 months ago: in case you are not aware of it, when you move your neck, you should move from the AO (atlanto-occipital) joint. It’s located in above the C1 area and about the ear level, which is higher than many people think (I did), so it’s not really turning from the neck. In this way, we can keep our neck movement minimum as Jordi suggested.
    Here is an image of the AO joint: http://alextechniquevictoria.com/about_the_alexander_technique (scroll down and magnify the image of a skull; this web page also summarizes about the essence of the Alexander Technique really well)

    Cheers.

    • Hi Dolphin, this looks very interesting.More and more I am starting to think that I need to find approaches that are less about fighting the symptoms, as I have been doing in physiotherapy, and instead (or in addition) increasing body awareness. Do you have a particular book to recommend on the Alexander technique as well?

  39. Hi Leigh,
    I’ve read the following books (though not sure they can be recommended to others as well):

    How You Stand, How You Move, How You Live by Missy Vineyard
    - If you want to learn about the AT in detail with a lot of case, this is a good book.

    Body, Breath & Being by Carolyn Nicholls
    - This thin and graphical book come with an exercise CD so if you want immediate hands-on practice, this book may be the one. But the book does not explain much details about concepts of the AT.

    Principles of Alexander Technique by Jeremy Chance
    - This tiny book was recommended by my AT teacher (no longer with her). I feel this book is for a serious AT learner. (I read this only halfway.)

    If you can afford, it may be more beneficial to learn from a certified AT teacher for at least 1-2 month (once a week), after read a book. Good luck!

  40. CCD:
    “… I do not expect magical exercises to heal my CD…”
    I know, my comment face to face sounds better. I apologize if i was not polite. I only wanted to mark that there’s no one, or two, or…exercices. In my oppinion the exercices have to change in order to get best results.

    “…Then you haven’t understood what I wrote on this blog…”

    I disagree. Is a big job that joins lot of approaches. People can choose and that’s a good think.

    “… I think that, apart from exercises, much more is required to heal…”

    Me too. See http://www.camins-neuronals-disfuncionals.net/index.php?cat=bases.php

    So as you can see my approach includes Psychiatric, Psychological, Neurologic and re-education.

    “…Therefore, I think it is very interesting to exchange information and find commonalities and synergies between the different approaches…”

    Yes that’s true. But people has to choose one approach and study that deeply (and yes, that means study other approaches…) we are not that far.
    Thanks to you.

    • Thanks for your comments Jordi; no need to apologize! We are among fellow CDers, so you can say what you want ;-)
      I am still hoping that you will consider to contact Farias. There is nothing to lose, only something to win. There is a saying in English: “Two heads are better than one”! (¡Más valen cuatro ojos que dos!)

    • Jordi,
      Healing CD with your method seems much more complicated than I originally thought. I did not realize we need to change the movements every week.
      How do we come up with different neck movements each week? I can’t think of any other neck movements other than the ones you taught us originally, they seem to encompass all neck movement, what else is there?

      There must be a book that describes proprioceptive neck movements, Has anyone out there found information on this?

      This method seems impossible to figure out on our own. Anyone have any idea’s.

      Jordi would you consider taking on some of us as clients via skype? we could pay you to help us every week or monthly?

      • “…Jordi, Healing CD with your method seems much more complicated than I originally thought…”
        Not really, the exercices are very easy and logical. It´s “only” re-education.

        “… they seem to encompass all neck movement, what else is there?…”

        Neck movement plus:
        Sitting in a chair, in a sofà, with one arm down and the other up, with one arm doing one movement, with one arm extended, with a flexed arm, singing, saying twisters, standing up in one leg, with the other, doing your exercices in front of the mirror, in front of your couple/friend…, moving your face, moving your shoulders, blowing…and more more more…

        in life situations:

        - in your desk, when you are typing in your computer
        - in the table when you are eating
        - when you are dressing up…
        .
        .
        .

        and more more…

        “…There must be a book that describes proprioceptive neck movements…”

        not as i know. Check this guy on internet: J P Bleton.
        Check this movie: “The King speech” when i saw the movie i thought: “that’s what i did to heal my CD (more o less, this is a movie, and real life is more difficult)”
        check my web, i will put more information.

        “…Jordi would you consider taking on some of us as clients via skype?…”
        Yes. But some considerations:

        1.- I think is better do that face to face. Try to find up in your area a neurologist/doctor/therapist who understand that i have put in my web. Talk to him/her if he understands the exercices… or if he/she knows somebody in your area who knows that… you can show my web (there are a few exercices), JP Bleton exercices (i saw few on internet…basically are the same…). Check two or three neurologist, not only one. Check phisiotherapists, behavioral psychologists…and ask, ask and ask
        2.- Can you take botulinum toxin for two years? it helps.
        3.- Do you understand that is a serius issue so you have to work a lot? maybe two hours per day? (if more, better…)
        I like a big commitment from pacients. That means that i saw them once per week to see how the exercices are made and other issues that can commes up during the hour that i usually spend.

        My fees are 55 € per month. That includes three, four sessions (one per week)
        First three months is for free. Basically you start the therapy and see if you can work doing this exercices every day.
        After this time you should know if you want to keep trainning or not.

        CCD i don’t know if this answer is not appropiate, i’ve told about fees, and take customers… Sorry and you can delete, no problem.

        • Jordi, your description of how to vary the exercises (with various arm positions, while doing various things) sounds very similar to the proprioceptive exercises I have been doing in physiotherapy. From what I understand from the therapists there, the basic idea is to get you doing something simple, like keeping your neck in a neutral position, and then throw all sorts of complications at you so it’s harder to do. THen eventually, you can hopefully do it in real life situations.

          For example, I’ve been doing a lot of work with a book balanced on my head. This is a proprioceptive exercise that helps my head to know where it is in space (through the gravity pressure of the book). Once I could do this reasonably well, they had me start to bounce a basketball with the book on my head, toss balls back and forth with someone, stand on one foot while hitting a balloon back and forth, even bounce on a trampoline. Anything that will distract you and make the move reasonably challenging.

          It also works with head turning exercises, for example we walk down a corridor side by side, and as I turn my head to face the therapist, she throws a ball to me, and I throw it back. We’ve even done it with two people on either side of me, taking turns tossing balls while I turn from side to side. This is something easy enough to do wiht a friend or even on your own.

          Another simple exercise I do for flexibility and range of motion is to hang a balloon from the ceiling on a heavy string, at head height, and bat it with your head several times – forehead, then right side of head, then left side, etc. Heavy string helps the balloon to return to vertical more quickly.

          • Yes, exercices like that.
            But, first year, when your CD is strong make it simple: “yes” exercices, “no” exercices, smoth, soft…
            After one year, when your CD is not pulling that hard. When you know that your CD is insight, but outside is not that obbius for other people you can start doing this complicated exercices, but always keeping slow speed…and more more exercices…
            See that on internet:
            “jacobson muscle relaxation” and focus that in your neck…

        • Sorry for delayed response jordi, I no longer have an internet connection.
          I thank you very much for this information, I understand now how to change the neck movements weekly.

          I do not have health insurance and I cannot afford professional help, but I am helping myself in all the ways you speak of.

          In the future when I again have an internet connection and can afford some help, I may call you on skype to see if you could be my therapist via skype.

          Again thank you for all of your support.

  41. Apparently Hyperthyroidism can cause neck muscle spasms, this might be something for us to think about and get checked out.

    This is an article that states torticollis can be caused by hyperthyroidism:

    http://bodyandhealth.canada.com/condition_info_details.asp?disease_id=128

    And another article on muscle spasms and thyroid disorder:

    http://www.ehow.com/about_5481761_muscle-spasms-thyroid-disorder.html

    Noel Batten gave me this idea about the thyroid.

    I also asked his opinion on neurological disorders caused by a virus or a bacterium, he said that this would not be the cause, but that often times people with neurological conditions have a weakened system that allows these types of infections. He stands by his experience that the cause is muscle tension and neck vertebrae misalignment’s.

    • Hi Sunflowersprout,

      Good to hear from you. You were offline for some time, right? How are you doing? Did you meet Noel Batten? Could he tell you anything credible about CD?

      I do agree with him that virus infections and such should not be the cause of CD, but are merely part of the pattern. Personally, I also think that thyroid problems are just an integral part of the problem, by no means the cause. But you know how I think about that ;-)

      Take care!

      • Hey CCD,
        I still do not have an internet connection, hopefully soon, I miss checking the blog daily.
        No I have not yet seen Noel Batten, he comes back to the USA in Feburary so I am considering seeing him then.

        No he has not said anything in particular about CD, as I have said he claims all neurological conditions are the same, they are all muscle tension which pulls the spine out of alignment.
        He feels he can help me the same way he helps Parkinsons or MS.
        Although I have my own theory, I feel our muscles are too spastic and need to be stretched out first via STRC and then do the upper cervical chiro and continue with massage.

        I am doing okay I am getting better very very slowly. I am having seconds or minutes of freedom here and there when I can hold my head straight, this helps keep me positive.

        • Sunflowersprout – just wanted to say hello. Great to hear that you are improving. I hope you regain an Internet connection soon and wish you all the best in your life.

          • Hi Dolphin,
            So nice to get a message from you.
            I may be moving to Cali,
            possibly Palm Springs area.
            The mineral springs would be so healing for CD.
            It would be nice to meet you eventually.
            I wish you the best as well!

          • Hi Sunflower,
            The Palm Springs area would be very nice! (I haven’t been there yet, though.) I think where to live matters for CD’ers since I believe we tend to be relatively sensitive to the environment as well. I wish to move to more “CD friendly” town sometime. I’m in so-cal as well, so it would be nice to meet up with you someday!

        • Hi Sunflowersprout,
          Good to hear from you! Mmm, I think it is a bit too simple to say that all neurological conditions are the same. Especially since he has no experience with CD. Perhaps he wants to try his method on you for free, so that you can make a testimonial and attract new clients if it really works?

          Keep up the good work! Getting better is the whole point. Dpn’t rush, accept the actual speed at which you are getting better. Me too, I sometimes have minutes of freedom, when I completely forget about CD. It is so great!
          We are getting there!!!

          • Hi CCD,
            For free, that would be nice!
            He does seem overly confident, I think he has had much success, have you ever seen the video on his site on Barry Black the Pd patient who went into remission in 5 days after 30 years. it’s an amazing video. I wonder if DR Lee ever had this kind of success.
            But I do agree with you it, it is too simplistic to see it this way, CD is more difficult, we don’t just have tight neck muscles we have spasming muscles and this needs to be controlled first. We’re on the right track with STRC this is how we can gain control.
            I have been studying Resonance Repatterning, another method to peel away emotional trauma and to resonate with coherant patterns through various modalities chosen through muscle checking. The various modalities include breath, movement, color, light, sound, touch, fragrance.
            This method can work very quickly, instead of possible years with SE.
            As I get to know it more I will write more about it. I plan on becoming a practitioner of it. And I am going to get my first session soon. I am not expecting instant miracles but it will help me recover faster at the very least.

            Glad to hear you are having moments of freedom.
            We are all one day closer to freedom everyday!

  42. Sunflowersprout, I had blood tests and hair mineral analysis tests about 4 weeks ago and have the following, which are all linked to each other:

    Hair min analysis test results
    - hypothyroidism/underactive thyroid (should be 4.2:1, mine is 177:1.)
    - low sodium and virtually no potassium (linked to poor hydrochloric acid in stomach, i.e. bloating and bad absorption of food)
    - hypoadrenia (low adrenals, should be 4:1, mine are 0:11:1 – low blood pressure, postural hypotension and fatigue)
    - low homocysteine (rare)
    - copper toxicity (“Copper imbalances are highly associated with most psychological, emotional and often neurological conditions”)
    - low zinc (if copper is high, zinc is low) and iron
    - hypoglycaemia
    - low progesterone

    A vegetarian diet is the worst diet – eventually causes copper toxicity (http://drlwilson.com/Articles/copper_toxicity_syndrome.htm). I had to switch from my vegan diet to a high protein (animal), anti-candida, low carb diet. I believe I was born with copper toxicity. My binge drinking (this was my stimulant – there are others such over working, coffee, sugar) for over 20 years made it worse and put me in a state where, when stress came along in the form of my bicycle accident, my body froze. “The presence of excess heavy metals, including copper, is a constant source of stress which eventually exhausts our ability to respond properly to stress.” When my Mom went under huge stress when my gran died, she got Graves disease, which is another condition one can get under stress when one suffers from the alcohol/sugar/stimulant/copper toxicity cycle explained here http://www.drlwilson.com/articles/alcoholism.htm. I’ve given up alcohol for 2 months so far and most days don’t have any sugar/artificial sugar, not even fruit (anti candida diet) and haven’t had any of the mood swings, anxiety I used to have.

    These articles explain copper toxicity very well
    http://www.westonaprice.org/mentalemotional-health/metals-and-the-mind
    http://www.tvernonlac.com/copper-toxicity.html. Apparently it’s very common these days.

    Link between copper toxicity and Dystonia
    http://www.toxicmetals.info/case_laurie.htm
    I have scoliosis – maybe it only happens to those with copper toxicity *and* scoliosis? I.e. I have no doubt my Mom has copper toxicity – she has the same personality as me and has been vegetarian all her life. Why did she get Graves disease and I got Dystonia under stress? What’s the difference between us? Is it that we both had copper toxicity, but I had Scoliosis and she didn’t?

    Sugar and Dystonia
    http://www.youtube.com/watch?v=ZICUEzowihU

    It would be interesting to see which symptoms are the same for all of us. Maybe we all had this precondition (one or all of the above – either born with it or acquired it), and when we near 40 (average age for getting Dystonia) and our hormones start to kick in (men too) our bodies can’t cope with any stress in the normal way and we get Dystonia.

    I have now finally learnt how to breathe properly! I breathe in through my nose and out through my mouth. I’ve stopped gulping huge amount air through my mouth. Sure this has helped my bloating too. I now take a form of melatonin and sleep through the night (no more suffocating attachs), which apparently is crucial as hormones are made at night.

    The above might be a bit disjointed. I’m in a rush to go out.

    • Hi Lee-Ann, good to hear back from you. Well, interesting finds. I know that you are not writing this to me, but I am taking the liberty to reply anyway ;-) As you know I do not believe in such phenomena as “the cause” of CD. I think we merely have such weak spots as part of a pattern, in which CD is the main symptom. As you know, I believe that the cause is trauma. INTJs with trauma are likely to develop CD. Others (like your mother, or is she INTJ as well?) will get other symptoms that fit their character and lifestyle. Anyway, keep up improving!

    • Hi Lee-Ann, this is all really interesting, thanks for sharing it. I’m curious about the mineral analysis, as I’ve heard it mentioned in numerous places but haven’t done it myself. Where did you have it done, and did the same people give you advice on how to correct your diet? Have you found a reduction in your symptoms since doing this?

      Also, I’d love to hear if anyone else out there has done mineral analysis, and if they got useful info from it.

      A great weekend to all,

      Leigh

      • Hi Leigh

        I had the hair analysis done in Cape Town on a recent holiday. I saw a hormone specialist who advised me to take certain blood tests then saw a hair min analysis practitioner. They work in the same company so both took each other’s results into consideration when prescribing. The min. analysis practitioner advised me on my diet (high protein, low carb, anti-candida), but the extensive hair analysis report (done by David L. Watts – google him, think he’s US based) advised me on what foods to eat more of and which to avoid (i.e. foods high in copper). I did a huge amount of research when I got my results and Dr Larry Wilson in the US seems to be an expert. He recommended I contact “Heather Kneale” (google her) as she works with him. I eventually decided not to contact her and rather just go with what my practitioner advised – Cape Town is closer/easier for me to buy supplements.

        The results were quite a revelation for me as I have always considered myself very healthy with lots of energy. However, she said that eventually I would burn myself out completely as I’ve actually been pushing myself too hard (been too obsessive) and now need to learn to relax, slow down and take breaks (walk slowly!). I’ve definitely noticed a reduction in my head turning. I don’t get jerks anymore and my neck movements feel smooth. Sometimes (rarely) it doesn’t turn at all when I’m talking to someone. I also haven’t had any social anxiety. The real test will be book club on Wed night where I have to talk about books I’ve read. I usually get panic attacks there. One thing I have noticed that is significant is that I’m not having huge mood swings anymore (irritability, anger). I’m much more calm and happy. I’m sure the supplements are helping (no anti-depressants), but I do think that giving up wheat, sugar and alcohol/breaking the cycle has been *key*, especially alcohol and sugar. When you read about what sugar does to your body, how it causes inflammation etc etc, it makes sense to me that stopping it will have the biggest effect. Really tough to do, but ever time I’m faced with sugar I think how great how I feel and turn away. It is getting easier thank goodness.

        I’m really thankful that I decided to go ahead with it. I wasn’t going to but the Hormone Specialist suspected that I had mineral toxicity and highly recommended it. I would have some serious problems (adrenal failure) coming my way if I hadn’t caught this. If it’s related to my CD then great although I am sure that it is for me.

        Let us know if you have one done. It would be interesting to compare results.

        Take care

        • I may look into it here, though I don’t really know how to ensure that the company is reputable, it seems to me there are lots of people out there offering tests for everything. I worked with a naturopath for a short while and wasn’t impressed with the results – he charged me $250 for a blood test that revealed a slew of supposed sensitivities that didn’t quite ring true. But I have heard of mineral toxicity in relation to neurological problems, so I think it’s worth investigating. I”m glad to hear that you have caught these problems early enough to make a change!

          The diet you’re using now sounds very similar to the one I use, higher protein, low carb, no wheat or sugar. I learned about it from the book Potatoes Not Prozac, (she has a website at http://www.radiantrecovery.com) and the focus there is on balancing serotonin and beta endorphin to improve mood, energy, etc. It’s worked for me, though I didn’t give up sugar completely till I got CD.

          I hope you continue to see improvements!

          Leigh

          • Hi Leigh
            I understand completely where you are coming from. It is a MINEFIELD out there – there is so much conflicting advice. I don’t know if I have seen the right person, but I had to start somewhere. On reflection I think I would have preferred to go with Dr L. Wilson/Heather Kneale.

            Potatoes Not Prozac sounds interesting. I’ll take a look at it. How long have you given up sugar completely for? Did you notice any improvements?

          • Hi Lee-Ann,

            The main improvement I noticed was feeling calmer, less staticy and frantic. (Also lost 7 lbs, which was nice!) When I eat sugar or wheat, it’s always an insatiable craving, and those cravings are mostly gone. Less bloated, no more sugar crashes. My neck improved as well, though I would say more that I noticed that when I ate sugar, it would get noticeably worse. Like you, I now find it pretty easy to turn down sugary foods, because it’s just not worth giving up feeling better!

          • I was just writing about book club. Something is definitely working because I had about 5% of the anxiety I normally get. Usually I try to be the first person to talk about my books otherwise by the time 10 people have gone before me I’m about to combust. I had about 8 people talking before me, was strangely calm with slight nervousness the whole time. I was able to think (process) and talk and didn’t get shaky, no rivers running down my arms, hot chest (neck usually goes red), pounding head. Quite amazing!! I am so excited about this. I realised on the way home that the anxiety I used to feel was not ‘me’. I always thought that it was ‘my personality’, but now I see that it was something affecting my body. I’m still certain it’s giving up sugar. It dawned on me yesterday that I can now stop holding back. I used to hold back (what I said and did socially) because I worried that if I said/did something extrovert in a moment of excitability that couldn’t deliver (don’t know how else to explain it). I don’t need to hold back anymore because without the social anxiety I can let go (go big, be free, let my whole personality come out) and I know that I’ll be able to deal with peoples responses/I’ll react normally/consistently. My neck is feeling so different. When It turns, it’s an ‘easy turn’ and I can easily turn it back. It doesn’t strain/pull. I agree…I nearly had a chocolate brownie break down yesterday, but then I thought about how amazing I feel and I just couldn’t go there. It’s been too long since I felt like this. Keep us updated and let us know if you notice any further correlations. Good to be in touch with someone else who’s ‘suffering’ the sugar famine as well :)

          • Hi Lee-Ann, I can’t reply directly so hopefully you’ll see this. These are such great insights, congratulations! I’m happy for you that you’ve seen such improvement. What you describe sounds just like the symptoms of sugar sensitivity. One thing I got out of the Potatoes not Prozac approach was exactly what you said, that a lot of what we consider our “personality” when it comes to social anxiety can be biochemical, if we’re sensitive to sugar. Like you, I’ve found it’s just not worth giving in anymore. I need substitutes though. I’ve found a sugar free fudge recipe (using Stevia) that has been a lifesaver.

    • Thanks for the info LeeAnn.

      I have been a veggie for many many years and know all of the debates and controversy about it.
      I still choose Vegetarianism, I believe there are more pros than cons.
      I don’t believe this caused my CD. But I wish I could have these tests as well.

      Can you tell us more details about your supplements and heavy metal cleanse? that you are taking to correct these issues.

      I have been on a sugar binge for the first time in years this last month. And I can tell you it has not done my recovery any good, I was progressing faster before this sugar. I have now quit cold turkey. And will never do it again!

      I have been using stevia for some years now, but have recently tried Xylitol and I like it very much, nice flavor.

    • Did you see that Steve Zarren submitted some comments on this blog? After I asked him some critical questions, he chose to remain silent though…

      • Ooops! Thought I’d replied…
        I haven’t seen anything on Steve Zarren here. Pity that he didn’t respond. Doesn’t sound good. I’m going to focus on what I’m doing now and if I’m looking for something else to try, I might give it a go.

        • Hi Lee-Ann, well, I think he is not very credible. See the thread in “First post: my quest to cure cervical dystonia”. He is giving a lot of BS and no real answers. If I were you, I would try Ganoderma! It also sounds promising. Dolphin and I are trying the algae. Let’s share our experiences!

          • Have you or Dolphin noticed any difference on the Algae, CCD? Is it the Blue Green Algae that Zarren recommends? The Ganoderma looks interesting. I’ll check it out and see if my Mom can’t bring some out to me fro the UK. I emailed Carlos Huertas (in my broken Spanish) http://www.youtube.com/watch?v=23lgq0bFIHo to find out how much he takes and how long it took to have an effect. Will keep you updated.

          • Hi Lee-Ann,
            That is great! He will surely reply. But I think he took 6 capsules per day of the standard GanoExcel product (http://www.ganoexcel.com/product_supplement.html). And after 3 months or so he got really much better. See my description in the Treatments section of this blog. You can order Ganoderma supplements online from different suppliers. You should be able to get some in your mailbox.
            Yes, what I take is the blue-green algae from Lake Klamath. And Dolphin as well. Steve Zarren will probably recommend to take additional supplements to enhance the effect, but the algae should do the trick, as far as I understand. Since I take them, I am improving. But I think I might also have improved without them, only doing STRC. So I am not sure what the effect is. It is not a counterproductive effect in any case, and it is not providing complete alleviation either, that is for sure.
            Keep us updated!

          • CCD,
            I’m wondering how the Guy knows he was cured by the Ganoderma? He may just be one of those people who went into remission?
            This mushroom has been very popular here in the US.
            It is very immune boosting and is a strong antiviral. It would be worth a try.

          • I’ll give it a try at the end of March (another blood and hair analysis test) next year after I understand the full effect of taking all the current supplements. Need to do process of elimination. CCD, interesting that you’ve seen an improvement. You’ve been doing STRC for a long time now so if there’s a spike in your improvement then it might be the algae. I hope so. I just wish there was a pill I could pop to make this all go away completely. Sunflower, it must have been the Ganoderma as he started to get better I think 2 months after taking it. Remissions are very rare, aren’t they? The before and after is dramatic. After seeing the effect of giving up alcohol and sugar on my body and (mostly) on my mind, in a way I do believe that a pill could cure it. One would still have to do exercises as our ligaments and muscles have compensated/found other ways to move and we need to get the body movements back to normal.

          • Hi Le-Ann & CCD,
            I’ve been taking AFA blue-green algae for a month now, primarily for general health, with some expectations that might work for CD as well. For the primary purpose, it worked more than I expected – it works for enhancing stamina and focus, and works instantly. The therapeutic dose suggested by David Wolfe is 8-10 grams (8-10 tsp), but I take only a half or less of that dose. The algae with the dried power form is more economical and I think it’s more effective, but beware of its odor and taste ;) The algae is one of the superfoods, which is rich in vitamins and minerals. For the CD, I’m not aware of any improvement from the algae alone. In my view, the algae alone doesn’t seems to work to cure CD directly, but it would work indirectly by improving stamina and general health. Ganoderma is another superfood, so it’s worth trying for general health, but I anticipate that the effect on CD would be similar.
            Good Luck!
            (P.S. Sorry if I posted this multiple times – it seems the messages I previously posted have disappeared.)

          • Hi Lee-Ann,

            I also started blue green algae +/- 3 monthes ago, and I am feeling very good with them. But as I have changed a lot of things (STRC, ….) I can not surely say who’s benefit it is. (by the way I noticed that there are a lot of veggies on this blog, I stopped eating meat when I was 8-10, just for information; and I could never change this)

          • Those of you who are taking blue-green algae, where do you buy it? Is it available only online from klamathbluegreen.com?

            Thanks!
            Leigh

          • There are several online sellers of AFA blue-green algae – you can search on Google or Amazon. I bought it from E3 Live, which was recommended by Wolfe. Here is the link: bit.ly/UHOVDz

  43. Hi all! Hope you are all doing well.

    Iv just read the information regarding dr Lee and treatment on adjusting the TMJ joint, iv got a dentist near me who offers treatment to adjust this with splints what sounds the same but sounds to good to be true as so close to me so was wandering if dr lee’s treatment was different from normal dentists?

    • Hi Michelle, well, does that dentist claim to be able to help people with ST? In the US there are several dentists specializing in this. See the Treatments section of this blog. I do not know about the UK though.
      As you can read in several places on this blog, Dr. Lee does a whole lot more than only TMJ balancing. So yes, his approach is completely different from that of normal dentists. He adjusts the entire spine. The TMJ does however take a central place in his treatment…
      I hope this helps!

    • michelle,
      you may want to look up upper cervical chiropractors. I know I sound like a broken record for the others on the blog, but if you find a very talented chiropractor who precisely adjusts the upper neck they can also adjust the jaw, at the same time.
      See upcspine.com and look for a practitioner, in your area.
      Also see Noel battens videos he explains neurological illness very well.

  44. …..also just read some reasearch saying that people with ST have straight neck bones (normal structure is curved)? Don’t know if this is correct but I do know mine is straight so might have some truth in it!

    • Where did you read this? Please send us your source. The only thing I am aware of is that CDers usually have a forward-head posture, which influences the shape of the neck of course.

      • I’m having a c section next week (Tuesday 18th) so worried how I’m going to look after her as at the moment my head is still really pulling to the left and I can’t even walk

        • Wow, I wish you all the best! You will see that having a baby will give you fresh powers to overcome your hurdles! Take care!

          PS: and if you can, please do provide your information source regarding the “straight neck bones”.

    • All people with Neurological conditions have straightened necks, we have lost our natural neck curve, and it is important to get it back, as I believe this is part of the issue, along with a misaligned c1 and c2.
      Our spasming muscles and in parkinsons and MS patients their tight neck muscles straightens the bones out.

      • I’m not sure I quite understand the straight neck idea. My neck is usually wanting to look up and is more forward and curved up than I would like. Can you explain what you mean? Is the idea that our necks are overly straightened, as in the miilitary posture that is part of the STRC program?

    • My Feldenkrais practitioner said mine is straight and I have forward head posture, Michelle. I’m going to ask for some exercises on how to get the curve back. She said that tight hamstrings, very curved lower back, bloated stomach and forward head posture all ‘go together’.

        • I forgot, but will see her Tuesday next week and ask.

          I really feel for you and will be thinking of you on the 18th. Be positive, don’t be afraid to ask for help/support and know that you are strong enough to cope. Take care

  45. I wanted to share with you all a book of Feldenkrais exercises that I’m using now. It’s an old book but I’m liking this approach and find it relaxes my neck. The idea is that through very slow movements you tap into the natural connection between brain and body, retrain teh nervous system, bring the body into alighment and reduce tension.

    http://www.amazon.com/Relaxercise-Easy-New-Health-Fitness/dp/0062509926

    I found a few of the exercises online as well, though these may not be the best ones for CD (involve tipping the head back, which for me is pretty uncomfortable). But it gives you the idea.

    http://www.creationsmagazine.com/articles/C84/Bersin.html

    Leigh

    • It’s a bit arduous, but I have a lot of hope for vipassana as a possible solution. If you haven’t done a 10-day course, you might want to try it. It’s all free, and one simply donates whatever one feels inspired to at the end of the course in order to support future courses. If you don’t think it was of any benefit, you’re free to go home without paying a cent. Here’s a link to the website:

      http://www.dhamma.org/

      Also, there’s something about CD which seems a bit demonic in nature. Jesus said that all demons could be healed through “prayer and fasting” which definitely seems to cleanse the body of all discordant energy. While undergoing a super intense fast (21 days of water followed by 20 days of “The Master Cleanse”), CD disappeared for me, and it felt like Heaven! I was so happy to choose energetic harmony over food. However, once I began eating again, CD started to return which could mean there is a definite linkage with the jaw as expressed through the TMD observations. I’ve found a liquid diet of smoothies and tasty pureed soups to lessen CD as well. Anyway, I’m so grateful for this website! I truly feel that we’re all undergoing some intense spiritual initiations, and we will overcome this demonic energy! I pray in the name of my Lord Jesus Christ that all demons which receive pleasure from feeding off of our energy be removed from within us!

      • Hi there

        Very, very interesting. Can I just ask, how long after you started the water and cleanse fast did the CD disappear? Did you believe 100% that the fast would work for you or did you have doubts?

        Leigh, I’ve been doing Feldenkrais for a year and a half now and it is truly amazing. My practitioner, Natacha Jarousse, is very well known in France and Mauritius – she is a movement disorder specialist. I’d highly recommend her DVD if you’re looking for exercises http://www.natachajarrousse.com/

        She was paralysed from the waist down and she is now the bendiest person I have ever met. She sees emotions/the mind intricately linked with the body. She also has an inexplicable sixth sense and seems to know things about her patients that she shouldn’t know. If you ever come to Mauritius you should book an appointment with her.

        • I’ve noticed the CD lessening towards the end of the 3rd day of a water fast. I didn’t know how long I was going to be able to fast for initially, and I decided to due the fast for body cleansing and to realize that I wasn’t as dependent upon food as I thought as opposed to solely for CD. Prior to that fast, the longest I had gone was 10 days which had created a noticeable decrease in the CD. Around the 10 day mark of the 41 day water followed by lemonade (a.k.a. The Master Cleanse) fast, I felt so good in terms of energy levels as well as minimal CD disturbances that I decided to keep going. Beginning with 3 day water fasts though might give one a glimpse of how the energy can shift. Thanks for the Feldenkrais info! I’m banking on vipassana as well as spontaneous healing through Jesus old school-style, but the more options the better. The beautiful thing about this is that science can’t really comprehend it, and thus we are not boxed in. I refuse to believe it’s incurable. In fact, it seems like the standard description of the movement of kundalini energy within the body. Here’s a link to a bit of info about that:

          http://www.thekundaliniyoga.org/kundalini/Symptoms_of_Awakening.aspx

          Hopefully, we’ll all just have this energy release through the crown chakra, and we’ll be a bunch of enlightened beings who underwent an intense spiritual awakening which was wrongly diagnosed as the phantom-disease known as cervical dystonia.

          • Amazing. I have been interested in Kriyas since a couple of weeks. And now you mention them here…
            Well, personally I am pretty sure that CD is not a symptom (Kriya) of spiritual awakening. CD really points out a fundamental lack of balance, a lack of flexibility, a lack of flow.
            On the other hand, I am also sure that, when healing from CD, we might experience real kriyas. Actually, I am experiencing things of the kind (which are completely different from the experience of CD symptoms), and since I have the feeling that I am healing, this might well be it. That’s why I started reading about it recently. But it’s too early to tell at this stage.
            By the way, can you tell us about those healing prayers? Those are known to be effective, so I am interested to hear about them.

        • You bet! I would love to get to Mauritius and if I ever do, will certainly look her up. I’m also finding Feldenkrais to be a gold mine of ideas about how the body works, much of it counter intuitive. The idea that moving slowly, and with minimal effort, is the best way to retrain the body, certainly goes against the usual exercise ethic. And I’m finding that I can incorporate these ideas into the muscle retraining I’m doing, which is along the lines of the exercises that Jordi posted on this site some time ago. Repeated movements, very small and gentle, while keeping everything very relaxed, seems to bring results.

          Good luck with your continued healing!

      • Thanks a lot for your contributions and welcome to this blog! I have taken a look at Vipassana and it looks interesting indeed. Feeling bodily sensations can be a profoundly healing thing. That is actually the exact same thing that is taught in Somatic Experiencing, in order to release stuck trauma/survival energy from the body. So I can understand why your CD disappeared for you when you were doing this so intensely during a longer period of time.

        Can you tell a bit more about yourself? When did you get CD? What were the things that you think contributed to its onset? How are you since doing the 41 day fast/cleanse? You say that CD started to return after that. But is it better than before the 41 days? Oh, and did you loose weight at all?

        Did you read the sections Phenomena and Perspectives of this blog? Do you recognize yourself?

        I do not believe that CD is demonic. It is a symptom, which I consider to be a friend, showing me how I have led my life: rigid control without room for my feelings, pain, heart… If we listen to its message, understand it, and change our lives for the better, we can heal. So I definitely agree with you that CD is curable!

        Hoping to hear back from you!

  46. I think CD started to creep in around 17 in the form of uncontrollable head tremors related to social anxiety. This might’ve been caused by drug/alcohol usage in high school which went out of my life altogether at the age of 24. I definitely noticed my energy becoming more balanced after letting go of such things. However, after an intense year and a few months of binging on sugar in order to let go of it, the CD became ultra-pronounced. I was noticing it during the year of the sugar experiment but thought that it would disappear once I gave up sugar (besides fruits) and, consequently, wasn’t overly stressed about it. However, when it continued to remain long after giving up the sugar, I decided to consult with a doctor and found about CD. I agree with you that it is a teacher (pretty harsh in my opinion); but, as a friend once mentioned to me, even the demons are serving God now. If it isn’t a demon, then it certainly feels like God striking one with a lightning bolt!
    After the 41 day fast, my energy was pretty amazing through the Grace of God for a good 4 months. However, my habits began to deteriorate a bit (mainly with regards to no longer eating a raw food diet – vegan, but not raw), and the CD reappeared. I recall, during the fast, telling one random person who had been aware of the CD that I had been fully cured as I felt that confident that I had been. I even considered going back into to see the three doctors who were so adamant in their diagnosis as I was sure that I could perform all of the tests perfectly. It had truly vanished! However, I recall the appointment with them as having aggravated and intensified it, and I didn’t want to awaken a sleeping dragon even though I thought it was dead. I did lose weight during the fast but felt extremely energized throughout the whole thing and had no concerns about my health. If one is concerned, I probably wouldn’t encourage it for that long. Also, as it says in The Bible, don’t make a thing of it while you’re fasting. If it comes up in conversation, fine; but don’t mention it unnecessarily as it might make things a bit more difficult.
    With regards to identifying with the traits in “Phenomena” and “Perspectives”, I can connect with some of them but not enough to make me think there’s anything scientific about this phenomena. I feel in many ways that God is trying to so fine-tune us that we become impervious to fear. For me, the slightest bit of rushing or tinge of anxiety can offset it. Most people think of me as very peaceful and calm, but it’s weird having this polar-shaky-opposite. It definitely does feel like a refining process and, as mentioned previously, I feel there’s a strong connection to kundalini energy as well. I’ve seen footage of one popular spiritual teacher who, when quite young, definitely exhibited CD. Her head would shake uncontrollably while she would simultaneously radiate such Love & Joy. Eventually, that energy worked its way out of her, and there’s not a remote trace of CD left. In some ways, I think the solution is letting go of this imaginary concept of CD. It definitely defines a behavioral appearance; but, as long as we box ourselves in with CD, we’re limiting our progress. I’ll start out my saying that I don’t have CD but rather an intensification of spiritual energy within my upper chakras. Nonetheless, I’m so grateful for this website and look forward to continuing the dialogue!

    • Thanks a lot for your elaborate reply! And sorry for the late response; I was really busy the past few days.

      Wow, you started early. At 17… And the dystonia didn’t spread to other parts of your body at all? May I ask what your current age is?

      Right, I understand that you started to binge on sugar. I guess it seemed like a more innocent vice at the time. But sugar is a kind of poison that raises acidity levels in the body; our muscles (and brains?) are very sensitive to it, hence the worsening CD. But I suppose that’s nothing new to you by now…

      I agree with you that CD is a pretty harsh teacher. But it is harsh because we have always been too harsh on ourselves. It is like a mirror reflection of our way of life. It shows us that we have become rigid, trying to control everything, without listening to our hearts and feelings. CD makes us feel out of control, because we actually are. But when we start to act more caring for ourselves, CD will lessen. And that shows us the right direction.

      By the way, I don’t think your CD was triggered by drugs and/or alcohol. I assume it was triggered by the social anxiety – which is so common with us, due to the childhood trauma. CD (and its onset) is usually triggered by stress, not by drugs and alcohol. It seems to me that you actually took drugs and alcohol in an attempt to alleviate the anxiety.

      Fantastic! So after the 41 day fast you had no CD symptoms for 4 months! I am impressed. I think you got really close to being completely healed. I do not believe that the non-raw food was the actual cause for getting your symptoms back. There was still some doubt in you. You say you didn’t want to awaken a sleeping dragon, which tells me that you were afraid you might not be fully cured. Since I got CD, I have become convinced that it is our beliefs that shape our reality. So as long as one believes in the existence of a sleeping dragon, it will remain there and may wake up one day.

      Are you willing to share what kind of emotions you felt during the 41 day fast? And what kind of insights you had? Did you fully accept and love yourself, unconditionally? (I think that is our key to true healing…)

      As for the Phenomena page, that is as scientific as it can get. I did a meta study of all kinds of research into CD, and summarized the findings on that page. Most of those findings are from the papers that I included in the Documents section. And some of the findings were done by sharing commonalities through this blog. It makes up a rather consistent picture. Most scientists however, did not draw actual conclusions from those findings. So I tried to do that for them, and summarized my views on the Perspectives page. Following the insights of Dr. Scaer, I applied the idea of childhood trauma to CD. Then the phenomena make perfect sense. It also explains why there are twice as many women with CD as men. Easy: women are traumatized twice as often as men (statistical fact), because they are more vulnerable. Mystery solved.

      But please let me know if there are aspects to the basic story that you cannot identify with. I am very interested to know how you think about this.

      I recognize what you say about being considered by others to be peaceful and calm. This matches with our Myers Briggs personality type INTJ (or aren’t you INTJ?). Yet, since we are traumatized, we often feel fearful inside. That is a logical consequence of walking around with a lot of stuck survival energy.

      I do believe that kundalini exists and that it can be accompanied by kriyas that look like CD. But there is one big difference between such kriyas and actual CD. The person who experiences the kriya, radiates love and joy, as you say. However, the person who experiences CD, feels fearful. As you say, to you it feels more like a demon than like god.

      On another level I do agree with you that CD appears to trigger a spiritual awakening. It just ‘forces’ us to view our lives from another angle, to let go of old patterns. (Of course this doesn’t really apply to people who just get their Botox shots and take meds, in an attempt to deny the symptoms and their message, and who will continue to feel fearful as long as they hold on to their old patterns.)

      I also appreciate your remark about boxing our CD in. If we box it in, it means that we limit ourselves. And that is always a pity. On the other hand, it is wise to try to see our situation for what it is, to grasp the message and to deal with it, giving ourselves complete freedom of choice. And that includes healing. No need to put chronicity in the box. That label was assigned by people who do not understand the nature of CD, and even less the structure of reality.

      Well, that’s it for today. I am telling you straight what I think and I hope that is okay with you. I am grateful for your vivid participation on this forum and I also look forward to continuing the dialogue!

      • I enjoyed reading your thoughts on Dystonia. I have found the same idea of the rigidity being a sign of lack of compassion and love for ourselves . Great to read it CCD thank you

        • Hello Malcolm, thanks for your message and for confirming my way of thinking! Please, are you willing to share your story? When did you get CD? What was happening in your life at that time? How have you dealt with it so far? What works for you and what doesn’t? Etc. Hoping to hear from you!

          • Hi I also got the beginning of CD at around the same age of 17. I wrote last year a bit more of my story on comment 3595 back in october last year. I get the sense that behind the physical symptoms there is a deep trauma and hurt and the spasms are a physical expression of this. Bringing love openness and acceptance to this can really help and if one can let go a bit and allow our bodies to express the pain it can allow healing (but you need to go at it slowly and at a manageable pace). I did 1600 hrs of Alexander technique training to become a teacher and this really helped me understand the spasms and gradually get back my co-ordination, I think there are many other good ways to work with CD though.
            What doesn’t work for me is when I try and push on through doing what I “should” do, I have trampled over my emotions for too long.

          • Right! But then you called yourself ‘Mal’. Now it clicks with me. What you say completely resonates with me. Love, flow, and acceptance help a lot. Pushing is counterproductive. It’s the ‘old’ way for us, that has helped us get through life for decades, but it’s just too rigid and hard, so it cannot last, and we get our ‘friend’ CD to remind us of that.

            How are you doing since October last year? Can you still see a gradual improvement? Or has your situation stabilized? And do you still go to your chiropractor once in a while?

            Take care!

          • True I am the same person Mal and Malcolm. I am growing into my longer name now I kind of like its rhythm :) but either are fine.

            I’m good thank you, I still have a lot of things to work on that as you mention are linked to trauma’s when I was younger and my way dealing with my emotions which was to lock down on them. I get a little tremor in my head still when stressed but I would not link it to what I had before. It is not notcieable to most people other than my girlfriend. I see if I can let it do it’s thing and it kind of helps me process my negative emotion, because that is where it seems to be derived and that is what I’m really interested in now. I have been doing an evening course once a week called co-counselling and its based on processing emotions so you can let go of them, likeing it so far but am still always present with the Alexander Technique. I am going offshore for a month on a vessel for the first time next week and am slightly nervous what will happen if I can’t deal with it as there is not much escape. Will let you know how it goes.

            I still se a cranial sacral therapist who i find evens me out and have worked out some of the exercise of the chiropractor that i can do to myself when my jaw gets tighter (and temples) so not so much to the chiro anymore

            Its nice to not feel alone with my issue. It’s been such a life changer and friends & family don’t understand really, so thanks for the support

            Malcolm

          • Mal/colm, great to have you around here! Yes, it is so nice to be able to talk to like-minded/-necked people ;-) Thanks for your update and perspectives.

            Interesting, what you say about letting the tremor do its thing. Indeed, if it helps to process negative emotion, then that is the best you can do. I can recommend you to take a serious look at the trauma therapies ‘Somatic Experiencing’ and ‘Brainspotting’. I am sure those are available nearby. These therapies provide body- (and brain-)oriented methods to safely release the stuck trauma/survival energy from the body. This also implies letting the body do ‘its thing’, in a controlled way though. With those therapies, you can cure yourself at the root-cause level. Dr. Scaer (see section Phenomena) has seen people with CD fully recover by doing Somatic Experiencing. I have been doing SE for over a year and I have been slowly improving since.

            Do you feel you might get CD symptoms back if you stopped with AT and cranial sacral therapy? Or are you quite certain that you healed your CD – apart from the occasional tremor?

            I can imagine you are a little nervous about going offshore for so long. On the other hand, you have a toolbox full of things you can apply to help yourself. So I am quite sure you will be alright. As for dealing with the nervousness, I do it by asking myself: “What is the worst thing that might happen with me in that situation?”. Then I try to accept that worst-case scenario and just see what I would be able do to take care of myself and the situation. Often, the ‘solution’ might be something like: just get out of the situation and lie down until I feel better. Knowing that, the nervousness will subside and make room for feelings of safety…

      • Hey, CCD! To answer your questions: I’m currently 30. Not sure what to think of the INTJ profile. I’m definitely philosophical, but it doesn’t seem to fully encompass me. The 41 day fast basically felt – despite the craving for food – like Heaven on Earth! I do feel it needs to be combined with prayer to work for some reason, but one could probably experience it a bit without. To go back a bit, I just discovered your previous inquiry a while ago about healing prayers. Being Christian, a good simple mantra from the book “The Way of the Pilgrim” is “Lord Jesus Christ, Have Mercy On Us”. During the fast, however, I devised my own prayer which incorporated praying for world peace as well as myself. I find prayers that can be a bit more all-encompassing to be effective as they give more meaning to the repetition of them. I would say these short prayers continuously the way a Buddhist or Hindu says their mantras. “The Way of the Pilgrim” illustrates this approach. Needless to say, one will take breaks to listen to music at times, interact with others, watch a film. The prayer comes simply out of a desire to say it and connect with God rather than obligation. The insights I had mainly revolved around matter being spiritualized. All we are is energy as physics has shown, and one develops a lightness and purity of energy (i.e., elimination of CD) that is truly otherworldly. In general, I have a great Love for God, myself, and others, but CD has definitely been something that I have an aversion to, as nearly anyone would, when it arises. I’ve discovered that stilling myself, relaxing the left side of my jaw which seems to be linked to it, and simply observing it when it arises without any judgement is an excellent step towards healing. That’s where the vipassana comes in handy. Being able to take one’s awareness of sensations into the feet and other parts of the body besides the head region transmutes the energy a lot. In terms of getting out of the box of “CD”, I think a better name for it could be “involuntary movements” since doctors don’t really seem to know what it’s about, but the term CD implies that they do. Thanks again for creating this liberating website!

        • Hi Mind Over Matter, thanks a lot for your reply! As for MBTI/INTJ, you can take a look at this page and quickly determine for yourself which type fits you best: http://www.personalitypathways.com/type_inventory.html. Let me know the outcome!

          I am impressed to hear how you were able to say those prayers continuously out of desire to say them. Are you willing to share the content of your prayers? If it’s too personal, I’ll understand. But I am interested in this, because the exact words are important for the underlying belief that is created through them, and hence the relative manifestation in the material world.

          When you say “matter being spiritualized”, do you indeed mean that you saw that the material world is manifested by our consciousness (and not the other way around)? Can you remember how and when this insight came to you? In a flash? More intuitive than rational? What had happened just prior to getting the insight?

          Allow me to be direct once again. I do not think you have (always had) a great love for yourself. CD is a part of you, and yet you do not love it ;-) (CD shows us how we have lived our lives: by means of rigid control, denying our feelings, we have worked around our pain. In the end, this is not a very loving way to deal with ourselves.) Also, social anxiety and rigorous intake of alcohol, drugs and sugar do not testify of a great love for yourself. In general, people with childhood trauma have important issues with self esteem/love. A child, when traumatized, tends to blame itself, because it cannot blame its caretakers. On top of that, a traumatic event in itself usually can’t be interpreted by the child as an act/sign of love…

          Yes, I totally agree with your finding that just allowing bodily sensations to be there, without judgement, is a powerful way to heal. I have done a lot of Somatic Experiencing, which is very close to Vipassana in that sense. Moreover, most people with CD tend to live in their heads exclusively, so in order to become “whole” again, it is of vital importance to start inhabiting the whole body again. Very nice to learn that you have independently arrived at this insight!

          Right, it’s clear that doctors don’t know what CD is all about. That is because they generally regard the human body as a machine, and only look for a mechanical or chemical problem cause. They still think along the lines of upward causality and Newtonian physics. That is crazy, because quantum physics was born about 100 years ago, telling us that downward causality is for real. Fortunately, there are some doctors now (e.g., Dr. Scaer as mentioned in section Perspectives of this blog) who are starting to look beyond the sheer deterministic mechanics, and who acknowledge that mind and consciousness have a definite impact on the body and/or are even inextricably connected to the body.

          Take care!

        • Along these lines, I’d highly recommend Anita Moorjani’s book “Dying to be Me” about her near death experience due to cancer, and her subsequent healing. She talks very credibly about how her perspective changed, and it’s similar to what you’re saying here. She isn’t speaking within the context of any particular religion, but the ideas are the same, and her experience feels very deep and genuine.

    • Hi Mind over Matter,

      I hear a lot of insight in your comment, and am impressed that you are open to thinking out of the box in terms of the diagnosis of CD, and not being defined by a diagnosis of a condition which is, after all, not well understood. I’m interested in the idea of this being energy working its way out of the body. I’ve had similar feelings myself, hard to put into words and certainly not something I’d discuss with my medical professionals, but a good description of the experience. It’s as if some energy is blocked. I’m curious about who the spiritual teacher is who you mentioned who exhibited CD early on – could you tell us? Sorry if you already have, I haven’t read this whole thread.

      Also curious about the results you had with raw food diet, this is something I’ve been considering trying myself.

      • The spiritual teacher who once exhibited CD (as far as I’ve heard, there’s a whole bunch of them since involuntary body movements is linked to kundalini awakening) is Amma also known as The Hugging Saint from India. I don’t encourage you to follow her as amazing as she is but simply to take comfort in your own awakening. I saw the footage of her interacting with devotees while her head was continuously shaking in a CD manner on this extremely rare dvd, since Amma’s foundation stopped selling it, called “Amma – Vintage Scenes 1982″. I tried to find a copy of it for you online, and the only place I discovered where you can buy it is through this Canadian group. Here’s a link to it:

        http://quebec.amma.org/video_invent.htm

        With regards to a raw food diet, it definitely clears up one’s energy tremendously; but for me personally there’s something about chewing which increases the CD. I find a raw liquid diet to be most effective. It’s pretty far out, but check out this info about Liquidarianism:

        http://www.angelfire.com/stars3/breathe_light/liquidarianism.html

        However, after that fast last year, I was able to go 4 months with eating and nearly no trace of CD. I am Christian and do strongly believe, based on experience, what Jesus said about “fasting and prayer” being the most effective way to remove demons (or simply negative energy). My own personal obstacle at the moment is simply the choice between tasty vegan food OR Perfect Peace (through fasting & a predominantly juice-based diet). I can definitely say that the Peace one feels through fasting & prayer is much more enjoyable than tasty food & CD. The thing to remember while fasting is that food will only provide a temporary pleasure and will then leave one still in a state of dissatisfaction. A vegan raw food diet mixed with a few 3 day fasts and later a 10 day fast could be a nice way to approach it. If you prefer CD & good food though, enjoy! There’s nothing wrong with that. This is simply a way to be healed for anyone who is truly fed up with the CD. Tenderness is definitely crucial. Be sure to break the fast if you’ve been going for a while, and it seems truly unbearable.

        • Hi, Mind over Matter,

          Funny I was thinking of fasting prior to you showing up on the blog.
          I am on the strc program and it does recommend fasting to get the body alkaline, which helps heal the muscles.
          I used to fast twice a year, I have never done more than 10 days before. I would turn into a skeleton if I did over 40, infact I’ve heard it can be dangerous for the body to do over 30 days, but it seems to have done you good.

          Have you read about Rebirthing-conscience connected breathing?
          It seems to be an efficient way to get rid of negative energy and clear away emotional trauma we have collected since birth and even before. It also oxygenates the body which produces an alkaline pH, and brings you into a very deep relaxed state.
          There is a story above, if you haven’t read it already, about a French woman who’s CD went into remission using this type of breathing technique.

          I would be careful trying to awaken the kundalini as this is located in the lower parts of the body right? (the sexual center?)
          I’ve read of people meditating on awakening the kundalini to go insane.
          True ascension begins at the “eye center” on the forehead in between the eyes. This is not my opinion but the teachings of true Masters or Saints.

          I wish you all the best on your healing journey, and thanks for sharing your experiences!

        • Hi Mind Over Matter and Leigh, I don’t want to intrude, but nevertheless I would like to give you my opinion once more ;-)

          Kriyas in the kundalini process may look like CD, but they really are something fundamentally different. People with CD are in a bad state. They experience anxiety, blocked survival energy, loss of control, split-off, pain, lack of love, lack of flow, etc. This is completely different from the ecstatic state of kundalini – more like the opposite I would say.
          Likewise, if someone who is extremely, positively excited shows a tremor, this may look the same as the tremor of a Parkinson’s patient. Yet, the underlying causes are fundamentally different.

          I still find it great to hear that you have been symptom free for 4 months after your fast! You had undoubtedly cleansed yourself a great deal – physically and/or energetically. But now you make it sound as if there are only two options for you: eat tasty food with CD, or fast and pray without CD. I agree that there is a connection with the jaw, but avoiding to use the jaw altogether? We have our jaws for a purpose, right?

          Anyway, I can assure you that there are many alternative options to heal. See the section Treatments of this blog. And, for example, check out Mal’s comments, who practically healed himself by applying the Alexander Technique. Personally, I don’t think the specific method we choose is of much importance, as long as we understand that we have to really love ourselves and that we have to allow flow back into our lives. Because that is what had been missing in our lives and made us ill…

  47. Hi everyone,
    it’s great to see traffic on the blog once again, and it’s all very interesting reading.

    I would just like to share a yoga pose that is benefiting me greatly. Because of cd symptoms, my back would bother me a lot, which is why I would occasionally go to my upper cervical chiro just to get a few days of relief.
    Since starting with this Rabbit pose, I have almost NO back discomfort, no need to waste money on the chiro for now.
    It also makes me wonder about the healing power of these ancient health practices and the ability to fully heal CD with them.

    here is the pose if your interested, be careful with it, it is also a great neck stretch, read instructions carefully, don’t apply much weight on the head, just simply place it on the ground with the forehead as close to the knees as possible.

    http://www.bikramyoga.com/BikramYoga/TwentySixPosturesDetails.php?pos=23

    • Rabbitsprout!

      So nice to hear from you! And great news that you found a way to resolve your back discomfort. I will also be trying this pose, not because I have a lot of trouble with my back, but because I have always felt great affinity with rabbits ;-)

      Did you know that the native Americans regarded the rabbit as a symbol of growth? Makes you think, right?

      Does this also mean that you stopped with the rapid release technology? Do you still feel that RRT delivered you a tangible improvement?

      Take care, happy rabbiting!

      • Hi CCD,

        I like the “new name” you’ve given me!

        I also have an affinity for bunny rabbits, I used to have one, we had a strong love connection, weeks before he died he acquired a “torticollis”!
        I didn’t understand it at the time, but I do now! When he passed, I was embracing his little body, and I found a tumor under his chin!
        Makes you think, right! :}

        I’m sure the pose will serve you well, let me know if you find it helps!

        I did 7 rapid release treatments in total. Since I live out in the middle of no where, I won’t be getting treatments of any kind for a very long time. Thank God for the rabbit pose and the dorn method.
        Anyway, I can’t say for certain if it gave me real tangible results, at the time I thought it did, and I have improved since then.
        It did make me realize the importance of the massage. Before this, I was not regular with massage, now I do it myself daily. I don’t use the kneading fingers much, what I do use, is my own hands. While watching a movie at night, lying down, I massage both sides and back. I think it is effective, as I can feel my muscles relax, sometimes I spend an hour on my neck.

        LeeAnn, if you are reading this, yes you can buy the Rapid Release gadget. I saw it online for a little over $1000.00, i think it would be well worth it!

        Happy Hopping!

        • Thanks, Rabbitsprout. Will look into it. I’m going to ask my Feldenkrais teacher about the rabbit pose this morning if she’s not too busy after the class. We have done this pose in class and I remember that it increases blood flow to the brain. A lot of her exercises increase blood flow to the brain.

          • LeeAnn,
            Great!, if she says anything significant let me know.
            You are so fortunate to have such a great teacher, you are also inspiring me to buy her dvd and practice feldenkrais!
            Wow, she was paralyzed, does she feel she over came this thru feldenkrais?

            I started with the rabbit pose and received so much benefit, that I am incorporating several other yoga poses as well, and I must say, I am feeling very tall lately…. like a true sunflower! :}

        • Glad you like it!

          Yes, those furry creatures can have torticollis. Usually due to an ear infection. Perhaps your rabbit had an infection in the jaw, causing the same effect. But torticollis (also in humans) is different from spasmodic torticollis. So these conditions cannot be fully compared.

          Have you read Watership Down? Great book. And did you know that rabbits can be trained like dogs? They can follow up spoken commands and perform all kinds of complicated tasks. My daughter’s rabbits have learned to go back into their cage when told. Well, one of them consistently does it. But his sister is recalcitrant and is an incredible escape artist. She understands how to open doors, bolts, etc. Incredible. Recently she ate her way through the thick wall of her wooden cage and got out. So funny.

          I am working on the rabbit pose. Not easy, but I will get it right.

          Wow, nice to hear that you developing your own approach, doing your own massage! Isn’t it hard to reach your back? Or do you only massage your neck?

          I contacted the RRT company. They told me the device is USD 1500. The new and improved version, which will be released soon, will even be more expensive. It’s a bit too expensive just to give it a try…

          Take care!

          • CCD,
            Cute story about your daughter and her bunnies.
            I knew they were smart, but I didn’t know as smart as dogs. I remember my bunny was instantly “potty trained” in a litter box.
            Thanks for recommending Watership down, I remember hearing about this book years ago, It’s now on my bucket list of reading materials!

            Sorry, I just meant the back of my neck.

            Yes, $1500.00 is a little too expensive for something you’ve never tried.
            Don’t give up on the rabbit pose, it will get easy for you soon.

    • Sometimes you can learn more from the “comments” below an article, so be sure to read them , as people offer other important links to explore.

      • I found this in the comments section of the article.
        A man named Philip Rafferty has devised ways to balance the structure through the tmj. His methods are called “RESET” and “Kinergetics”. Apparently you can learn how to do Reset on yourself, to relax the muscles and realign the TMJ. I’m still exploring Kinergetics, but here are some you tube videos of Philip Rafferty talking about and applying his techniques. Apparently his techniques will relax and elongate muscles faster than any stretch.

        http://www.youtube.com/user/Kinergetics/videos

        • Hi Rabbitsprout, you are getting back to your initial activity level! Jumping around sites, hopping through documents, and sniffing crispy bits of information!

          Or did you just get your own internet connection?

          Anyway, interesting information indeed. Much of what he says relates to the TMJ-realignment approach (like Dr. Lee’s) for treating CD.

          I suppose you have also found the website http://reset-tmj.com/? Here he says that you can learn RESET in 3 hours, in order to apply it yourself. And he says that some people have successfully learned the technique from the manual. Apparently the manual can be bought, but I haven’t found out where/how… Also, I went through the testimonials, and there isn’t a single one about dystonia or torticollis.

          What I find quite interesting though, is that Rafferty regards trauma as the usual root cause of problems. See page 4 of this document: http://energykine.kine2012.com/PDFs/ppts/kinergetics.pdf