My quest

Why this blog?

Welcome to my blog about cervical dystonia! I have decided to start writing this blog for several reasons.

  • In the spring of 2011, at the age of 43, I have been diagnosed with cervical dystonia (CD), a.k.a. spasmodic torticollis (ST).
  • Little is known about this disorder, officially, and I feel the need to gather information about it in one place.
  • Also, I want to understand what the disorder means, from different points of view, on different levels.
  • I think that any disorder, even so-called chronic ones, can be cured. And it should definitely be possible to cure cervical dystonia, since spontaneous remissions occur all the time!
  • I want to document my quest to cure myself (without Botox and/or surgery), and I want to share it and interact with others around the globe who are somehow connected with this quest.

 

In the beginning

First things first. I’ll tell you a little about my history. In March 2011, my CD symptoms really broke out. I was on a rather stressful business trip to Poland, when I noticed that I couldn’t hold my head straight. I had had neck pain and some involuntary twitching in my neck for several months, but I didn’t think much of it. A year earlier I had made a wrong move on the diving board in the swimming pool, causing my head to snap backwards. So up until then I just thought that incident had been responsible for the nagging pain. But in Poland it had become serious: when I walked, my head really completely turned to the left, with jerking movements.

When I came home from the stressful trip, the symptoms faded away somewhat, but soon came back and started to gradually become stronger. I consulted with my generalist and manual therapist, but they didn’t know what to think of it. I was feeling increasingly miserable. And after a long beach walk, where I actually had to hold my head with my hands to keep looking in front of me instead of way to the left, I was really worried and started a good Google search. 15 minutes later I had a Post-It note in front of me with two things written on it: “cervical dystonia” and “spasmodic torticollis”. I understood that both designations represented the same thing, and also that this was definitely what I had. A week later I saw a neurologist, who confirmed my fears. Subsequently, I had my blood checked and an MRI scan of my brain made. Nothing abnormal came out, so the official diagnosis was: primary spasmodic torticollis.

 

Now what?

I was shocked. I saw my life falling apart. I could not go to the office anymore and had to work (limited hours) from home. Also, going to my beloved dojo for karate training was completely out of reach. I saw myself as a handicapped person. Fortunately, that phase didn’t last long. Looking at it from the bright side, I realized that my body was giving me a signal that something had gone wrong. So I became determined to understand the signal. I will get back at that later on.

The neurologist proposed a Botox treatment. But I declined. I do not believe in fighting symptoms as a structural solution, especially not in case the active substance is poisonous as hell. To me, that is literally like shooting a messenger who has come to bring some (probably bad) news. Within my initial 15-minute Google search, I had also come across a website of a fellow ST patient, who had been able to master his symptoms without Botox or surgery, living by the guidelines of a small American clinic. This inspired me a great deal.

Within weeks, I had booked a trip to the Spasmodic Torticollis Recovery Clinic in Santa Fe (see www.stclinic.com), led by Abigail Brown. I had been in touch with yet another fellow ST patient who had visited the clinic in 2006, and who had reached his state of “ongoing recovery” two years after that. His results and online testimonial video were very convincing and so I went to Santa Fe. At the clinic, I learned about specific stretching exercises, fitness exercises, massage techniques, diet restrictions, correct posture, correct sleeping position, and more. My quest could begin!

 

Up the mountain

After getting back home in August, 2011, I started to seriously follow all the clinic’s guidelines; I did the daily exercising, found a great PT (whose wife also has CD!) nearby who was willing to help me with the massage, stopped drinking wine (that hurt), eating sugar, white bread and pasta, etc. And guess what? My symptoms got worse. At least in the beginning. It took months without seeing any noticeable improvement. I didn’t only have CD; CD had me. I had to hold my head with my hands all the time when I was up, I couldn’t eat with both hands, I could only work on my laptop when lying down on my back on the sofa. And still no wine. Moments of despair were frequent. It was no joke.

But, by December, 2011, things did start to change. Jerks and spasms became sparse, the position of my head became straighter, I was able to sit in a chair and work on my laptop, and I could do some simple tasks without having to hold my head. This was good!

By April, 2012, I was doing much better. I started this blog, being able to type without any spasms, with a straight head. I could sit in a meeting for hours. I could walk a few minutes without people looking at me, wondering about the strange head position and movements. People who did not know me and did not pay close attention, couldn’t tell that there was something going on with my neck. So I gained a lot with the approach from stclinic.com!

However, the approach has its downsides. Exercising needs to be continued for the rest of one’s life. Same story with the diet. (O, my dear wine cellar!) And all shocks, either physical or psychological, need to be avoided, since they can trigger a strong and immediate return of the symptoms. (O, my dear karate dojo!)

 

The next phase

Being an enthusiastic internaut, I have searched the net very thoroughly since the onset of my symptoms. And I found many interesting pieces of information on CD, which I share on this blog. One intriguing find is the treatment approach based on TMJ alignment. Even before finding this information, I had already noticed that when I opened my mouth to the maximum, my CD vanished. To me it’s obvious: there definitely is a link between CD and the jaw. Most CD patients have a jaw imbalance (TMD) to some degree. I am no exception: both joints click loudly when I eat; they often produce a grinding noise, etc.

So I started an email conversation with Dr. Young-Jun Lee, who has a clinic in South-Korea, treating several chronic disorders – including CD – using his proprietary method, which he calls FCST. A core ingredient of the method is jaw alignment. But he also deploys traditional Korean healing methods and actually realigns the entire spinal and pelvic structure. Dr. Lee has told me that his treatment yields definite, permanent results. So after successful treatment, there is no need for daily maintenance, except for normal, healthy living. Moreover, he confirmed to me that, once he says I am good to go, I will be able to safely enter wine cellars and karate dojos again!

Furthermore, he explained that he creates the boundary conditions for the body to heal, by re-establishing blocked pathways, but that the actual healing has to be done by the patients themselves. I strongly believe in this point of view.

So in May, 2012, I went to South Korea to get treatment in his clinic. I stayed there for 2 months and got intense, daily treatments. You will be able to find full details when browsing through the posts on this blog. I experienced rapid improvement in the first few weeks. There were some totally ‘free’ episodes. But then I started to experience more symptoms and fluctuations. And after two months, right before returning home, my symptoms were so bad that I had to hold my head with my hands again in order to get through the day.

It took me some time to realize what had happened. I had tried to force my healing. I had put deadlines and milestones on the process. And I had received the maximum possible number of treatments, without listening to the signals my body gave me, re-traumatizing it, until it (through CD) clearly told me to slow down. So I learned that!

Also, I saw several people with CD getting completely healed in the clinic. Their advantage: they live near the clinic, put no pressure on the healing process, just take all the time they need, do not get so many consecutive treatments, can go home to recover from individual treatments and come back days or weeks later.

 

Holistic view

Now, as I am updating this page in April, 2013, I see that my perspective on CD has shifted somewhat. I still acknowledge the potentially positive effect of physical treatment and exercise, but I think the physical approach will only work if accompanied by a genuine change from within. I think it will be helpful for us to understand that CD not just ‘happened’ to us, perhaps due to some genetic predisposition and/or incidental (physical) trauma. Those factors may very well contribute as triggers and catalysts, but the root cause is something else.

Through interaction with visitors of this blog, I got a lot of confirmation of the idea that we have suffered childhood trauma, with subsequent accumulating trauma during the rest of our lives. On top of that, we have a specific personality type: INTJ (MBTI type). We INTJs deal with pain by rigidly structuring and controlling our lives, living in our heads, losing touch with our feelings and bodies. Then CD appears to show us that our system has had too many segregative impulses, that we have lost all flexibility and got out of balance,and (ironically) out of control.

So it is time to become whole again, in other words: to heal. And we can. Meanwhile, I have become even more convinced that healing is available.

Oh, and how I am doing now? Not cured. But still getting better, slowly but steadily. I am still doing exercise, but also working on my ‘internal’ changes, dealing with the trauma, moving back into my body, looking for flow and passion, appreciating myself without judgement, constantly investigating new perspectives on healing.

To be continued.

77 thoughts on “My quest

  1. het was goed te lezen dat, zover ik kan nagaan, jij op de weg van verbetering bent.
    Houdt mij svp op de hoogte.
    Het allerbeste en tot ziens/horens/lezens

    • Dank je! Leuk om van je te horen!
      Als je je inschrijft (zie de rechter menubalk van deze blog, daar kun je je email-adres achterlaten), word je automatisch op de hoogte gehouden!

  2. hi,
    i am also one off a guy suffering the ST more thn 18 months. i had been taken botox injection 5 times, but didnt get the improvement. i am from Myanmar last time known as Burma. how is your progress after taking the treatment at south korea. if u dont mind please share your experience. i also want to go and cure.
    thanks and regards
    michael

    • Thank you very much for your contribution and welcome to this blog! I will soon write more details about how I currently am, but I can already tell you that I am not (yet) cured. Nevertheless, I have seen people who got cured in the clinic. But it seems that they are not in a hurry and take a very long time to recover. So it will be hard for a foreigner to visit the clinic for a limited time and recover. Anyway, stay tuned and read more details in the near future. In the meantime, it would be interesting to know more about your story. How did you get CD and how does it manifest itself in you? Did you read the sections Phenomena and Perpectives of this blog and do you recognize (part of) yourself there? And how do you cope with CD at this moment?

  3. just want to check with u. how much i need to spend for accomodation and treatment fees for 2 to 3 months. if i can effort, i would like to go there and cure

    • Sorry for the late reply. As I said before: please check with the clinic regarding pricing! I am not affiliated with the clinic and cannot help you out there. They can also help you with accommodation. I think you should be able to find an apartment at about 300 USD rent per month.

  4. I have had ST just like yours for some years now. A hairdresser hurt my neck in the shampoo bowl making my symptoms much worse. I have had to resort to hydrocodone and tizanidine plus botox. It is difficult to find a PT in San Antonio, Texas familiar with movement disorders. I am so tired of it controlling my life, I have even considered marijuana. Regular massage is expensive and not covered by insurance. If you find a solution, let me know. Life is not worth living like this.

    • Hi Joann,

      Welcome to this blog. Sorry to hear that you are having a hard time. Yes, I can understand that you are tired of controlling your life. And that is exactly the point that you need to address in order to get better. Please read the pages Phenomena and Perspectives of this blog, in that order. I hope it will help you to understand how to deal with this.

      So, yes, there is a solution. I am doing very well now. Almost recovered. Others who have visited this blog and followed the proposed approach (understanding of the root cause of CD, trauma resolution, self love, flow), have recovered as well. So you can do it as well.

      Keep in touch!

      CCD

      • Welcome JoAnn

        I know how you feel (we all do) hope you find the right path for you soon. Remember once your on the correct road you have just got to keep going forward until you find your destination. Xx

    • Hi, JoAnn. I was drawn to your response because you mentioned you’re taking tizanidine. For the pat 4 1/2 years, I have been taking Tramadol and Clonazapam, in addition to weekly physical therapy and the Botox injections every 3 months. Due to my increase in pain, my doctor just prescribed Tizanidine, in addition to everything else. The first time I took it, I took half the dosage before bed, and I slept until 3:00 the next day. Obviously, I don’t want to live my life by sleeping all day, even if I am on disability. How does this drug work for you? Do you have any advice? I haven’t taken it since and will probably try again when at my parents this week for the holidays.

  5. Hi, I have had ST now for almost three years now. In the beginning the Doctors ran me through all of the medication, physical therepy, undiagnosis for a year. Once day when I went to see a different doctor they diagnosis me. I thought mt my world had come to an end. How would I be able to continue with my profession? One day I came home and told my husband I was ready to give up and he had found the Santa Fe clinic. I contacted Abby and went to see her in May 2012. Since that day I have worked really hard with diet and exercise. I still get Botox injections but zero muscle relaxers or pain killers. I am afraid to try ne Botox because life has been bearable. I have not met anyone but Abby that has this condition and was starting to think I was the only person on earth. Great to see your blog.

    • Hi Jessie,

      Sorry for the late reply! Good to hear that you have found out that your life didn’t come to an end ;-) And that you are not the only person on earth with CD! Welcome to this blog and I hope it inspires you to take your recovery even further.

      Keep in touch!

      CCD

  6. I have been suffering from CD for 3 years, after the first year my symptoms were such that I could not hold my head straight, as it was twisted and tilted. I also had a lot of pain 24×7. I tried many therapies and Botox, nothing improved things. 6 months ago I found a professional athlete in my hometown had also suffered from CD to a severe degree, and tried many things, just like me no improvement.

    Through Osteopathic Manual Therapy he has finally become symptom free. I also started this immediately and for the first time found some improvement. 2 months ago the therapist gave me some simple exercises that accelerated my recovery to the point that I am close to symptom free!. I had been ashamed to go in public, but now go to the mall without people staring at me.
    I suggest all CV sufferers to pursue Osteopathic Manual Therapy.

    The exercises to do are very simple, and you can start now.
    First lie in bed sideways with your head hanging over the side opposite from the twist. Stretch your neck using gravity. Hold for 30 seconds to 2 minutes. Repeat 5-10 times a day 2 months ago my head was straight out, but today I can just about touch my shoulder. I also lie on my back and hang my head over the edge of mattress, using the edge of the mattress as support. I you feel pain from this, back off frequency and length. Cheers

    • Hi Mark,

      Welcome to this blog and thanks a lot for sharing this!

      Great that you have been able to get this far with those simple exercises/stretches! Is that all you currently do for your recovery?

      And what about the athlete? Does he still continue these exercises? And is he 100% symptom free?

      If you read this blog, you will see that I believe that physical exercise is definitely helpful, but not addressing the root cause sufficiently. I would be interested to hear your opinion.

      CCD

  7. Hello. I live England and really had to self diagnose my cervical dystonia as my GPs were not convinced this was the cause of my neck pain and head turning. Finally I got them to send me to a neurologist who confirmed the condition. I did not want the botox treatment as I needed to find the cause. So since June 2013, I have been researching. I too came across the ST Clinic in Santa Fe on the internet and whilst interested in reading of their success, I did not feel that it still gave me the answer to why this condition occurs (also, I was unhappy with the lack of evidence available, not being able to communicate with clients who had used their methods successfully and the upfront cost of their service).
    So further research led me to the possible connection between dystonia and the TMJ joint in one’s jaw. In the USA, there are a number of specialist investigating this connection and having good success with the use of orthotics whichbappear to completely remove all dystonia symptoms (and interestingly success with tourettes and parkinsons).
    After a long search in the UK, I found an orthodontist in Southampton who has spent the last 20 years working with the methods utilised by Dr Brendon Stack (USA) . Sadly this treatment is not yet recognised by the NHS so I have had to pay for all my treatments. Dr Langly-Smith is not only an orthodontist but also specialises in osteopathic work. After my initial 2 hr consultation, I was sent to get MRIs done and he beleives that issues with the TMJ is the cause of my dystonia. I have another appointment this week during which he will complete other investigations and the work up of an orthotic which I will have to wear 24/7.
    I feel hopeful that this will resolve my problems as just sitting in his surgery on the first appointment with temporary stack of splints in my mouth eased a lot of my neck pain and turning.
    I will let you know how it all goes!
    If this does work, I will make it my task to get more evidence and recognition of this treatment. I thinknthat the current treatment of botox is not good enough and perhaps stop the investigation of the cause of dystonia.

    • Hello Hilary,

      Thanks for your story and welcome to this blog!

      Did you read my blog in detail? Please do so, starting with the pages Phenomena and Perspectives. The cause of your CD is (childhood) trauma.

      TMJ issues are definitely not the cause; they are just a consequence, like CD itself. TMJ issues are part of the spinal collapse that happens when CD kicks in. However, adjusting the TMJ might help to realign the body physically. But it won’t heal you. Personally I went to South-Korea for a TMJ treatment in 2012. You can read all about it in my earlier posts.

      I realized that it is necessary to release the trauma from the body. Any physical therapy (like TMJ alignment) may help, but merely as a support, not more than that. Other people who have worked on the trauma, have healed themselves and reported back via this blog.

      I hope this helps.

      Good luck.

      CCD

    • Hi Hilary,
      I’m curious about how your treatment for TMJ with Dr Langly-Smith went and whether it alleviated the ST symptoms as I am considering going to him myself.
      Many thanks

      • Hi: I am doing the TMJ treatment now. It is working. Go to FB and checkout the page Dystonia and the TMJ Connection. There are many on there getting relief from Dystonia through the TMJ splint.

  8. Enjoyed reading your blog. I was diagnosed with CD in 2013. Had a neck injury in auto accident. Have trouble chewing… My jaw will not align. Have head tilting, stiffness in neck and shoulders. Currently taking Botox every three month. Walking is a problem. I take yoga, lift weights, get. Massages, and do lots of stretching. I take Tylenol once per week. Symptom severity comes and goes. Looking for help.

    • Hello W.C.,

      Thanks for your comments. Your case does sound like a classic one, with the neck injury prior to onset.

      What kind of help are you looking for? As you may have read on this blog, I am convinced that CD is caused by (childhood) trauma, and that you can only solve it by yourself. Of course I am willing to give recommendations. But you need to understand that CD cannot be fixed by therapy or external (medical) interventions. Healing has to come from within.

      Let me know your thoughts and doubts.

      CCD

  9. i was diagnosed with what i already knew i had, back in 2006 – CD – in december 2005, i just woke up with it one morning. Stiff neck, lots of pain because of it always being locked to the left. A numbness around the scalp that resulted from the pain rising up from the infected area. The neck muscles in that area had really bunched together, became thick, thus dominating the whole of my neck, completely twisting it to the left, with an angle to it too. Anyway, so i’d suffer all the things that come with this disease, socially, work etc. I’m a gym rat, so it didn’t stop me from continuing to be one. But i do muay, & western boxing as well. That’s where things really became complicated. Add to that, no more of my first love anymore either – football (soccer). what i’d do when at gym is, i’d train, & then lay flat after 15 mins to relieve my neck of the pain. Went through all kinds of medication. But we cd sufferers have this sense, that no matter what meds there are, they won’t work. You just have that feeling. Anyway, i had the the botox done after about a year of suffering. It’s supposed to offer relief for only 3 months. Things got better, & better. The effects were supposed to wear off, but they never did. My neck improved to 85% recovery, & stayed that way. Recently, i performed the ‘clean & jerk’ – i love olympic style weight lifting moves. I perfected the move, & started lifting 230 lbs worth of weight, & beyond. A week past, & i started to sense a tingling feeling in the previously infected part of my neck, these felt familiar, they were also accompanied with that inflamed feeling, which also rang familiar, & by no coincidence, my neck started to pull to one side again, not as severe as years ago, but definitely uncomfortable, & shaking was present. I’ve since stopped doing ‘clean & jerks’, as i identified it as the culprit. There’s been a slight improvement since. Now, like i’ve been doing before i included clean & jerks into my workout program – i just do normal weight training routines, no olympic styled stuff.

    • I am wondering if you sparred when your neck was at 85%? I box professionally and am hoping that this will not end my career. I also am a very active person so any suggestions are appreciated.

      • From your comments, I get the impression that you would like to “fix” your CD and carry on with your life without major interruption. This doesn’t work. CD is not an easy thing to resolve for most people. You need to understand why you got it (childhood trauma) and then start working on releasing the trauma. Stop pushing yourself along the path of rigid control and start reconnecting with your body. Due to the trauma, you have dissociated from your body and no real connection with it. You are living in your head. As you release the trauma (physically), you will gradually learn how to connect with your body again. It is a path that requires patience and self love…

        • On the contrary, I’m trying to find ways from other people and what limits (if any) they have put on themselves or where maybe they have pushed the envelope. I cant think of any “trauma” during my childhood. I do know there is no “fix” to CD and I am not interested in Botox and other medicines. I am interested in connecting my body again. Certainly does make sense

          • Well, most people don’t remember their childhood trauma. The fact that you have CD, indicates it. Looking at what other people do and recommend, is typical for us CDers. We don’t know anymore what’s good for us, i.e. our bodies. The trick is to let go of all “external methods”, and to start listening to yourself and your own body. Then you will find the right way out for yourself and immediately start to reconnect with your body. Having said that, I think it makes a lot of sense for most of us to do body-oriented trauma therapy.

  10. Has anyone mentioned, or even heard of ATLAS ORTHOGONAL CHIROPRACTIC ? It’s something that might help some of the people on here,….I’m hearing alot of similarities but also notice some distinctions in certain symptoms that could possibly be considered as having been given a wrong diagnosis to begin with. Here are a few websites that may be of interest to a few people on this blog : http://www.atlasorthogonality.com http://www.sweatinstitute.com/t2/index.htm

  11. Hi
    I have suffered cervical Dystonia for 10yrs now
    Spent thousands on different treatments but nothing works
    Would love to hear from anyone that lives in Australia with this condition

  12. Thank you so much for sharing. I was diagnosed with spasmodic tortillas a year ago and I do believe psychological trauma in my childhood and my marriage are part of the reason I am suffering like this.

    • You’re welcome! Did you read the pages Phenomena and Perspectives? How well do you recognize yourself in those descriptions?

      If you want, please share a bit more about your path and your approach. Always interesting!

      Take care.

      CCD

  13. Hi I’m taseem I am now 34 years old I went to Pakistan to get married and my neck started wobbling I came back to the uk and they took 4 years to diagnose me with cervical dystonia that was in 2004 since then I have Botox injections every 12 weeks I’m finding it hard to spoke now it’s effecting more people laugh at me people don’t take me seriously in a result of this iv separated from my husband he never supported me I have two children I can’t cope really down people call me a freak some children say to my children that I’m scary
    Iv asked my doctor is there anything else I can try he was like no just Botox he’s not really nice
    Need help

    • Hi Taseem,

      Sorry to hear all this. So you need help. Well, the short answer is that you are the only one who can help yourself. Conventional medicine cannot really help, as you have already found out. Healing has to come from within. Please read the pages Phenomena and Perspectives of this blog and see if that makes sense to you. If yes, then all you need to do is decide to heal yourself and to release your trauma. That is the best present you can offer yourself.

      Take care.

      CCD

  14. I enjoyed reading your blog as I am now researching CD as I have not been diagnosed yet. I noticed symptoms approximately a year ago but have recently gotten much worse to where my head continually jerks to the right unless I hold my head straight. I am getting weekly massages, physical therapy treatments and get an MRI in a couple of days. I am scheduled to see a neurologist in May. I doing my best to stay positive but being an active person (running, lifting, boxing, etc.), this is really getting the best of me. I live in Santa Fe but live paycheck to paycheck. Is there anything you tried that would fit in a tight budget to alleviate some of the symptoms? Muscle relaxers do not help at all. Thank you and look forward to hearing from you

    • When you read more on this blog, you will find that resolving the childhood trauma is the most important thing to do. There are many ways to accomplish this, but I recommend a body-oriented trauma therapy like somatic experiencing.

      Forget about all the “external” stuff like Botox, muscle relaxers, etc. Massage and physical therapy may support the healing process, but still is external and therefore doesn’t resolve anything fundamental.

      • When you say childhood trauma are you referring to physical or emotional? Whatever I got to do to get on the road to some kind of recovery, I’ll do it

        • The source of the trauma is irrelevant. It can be physical or emotional. The result is what counts: blocked survival energy = trauma.

          I recommend to do a body-oriented trauma therapy, such as somatic experiencing. However, as you can see when you read this blog, different people have taken different routes to recovery. I think it is very important that you choose the right therapy for yourself. Asking others what to do, is part of having CD, i.e. part of being disconnected from one’s own body, not knowing what is good for you anymore. The sooner you start listening to yourself and your own body – by selecting a therapy that feels right to you – the sooner you will be on your way to recovery.

  15. Hi,
    Look up Abigail Brown she is in America and has a clinic for people with CD or Spasmodic Torticollis its a slow process to get into recovery but if you read her testimonials you will see all the people who she has helped and are now living normal lives with out the spasms and pain

    • Hi, sure, we know about her. If you read my personal story, you’ll see that I have been at the clinic myself. The method is helpful, but doesn’t promote healing, as it only focuses on more physical balance, not on release of blockages.

  16. I was diagnosed with CD in 2011, but I had the symptoms starting in 2009. I started having not so bad symptoms in 2007 ie cold neck, slight tilting, feeling like my head and neck were not connected. In 2009 it was full CD. I had made a plan to go to Switzerland in January 2015, if I had no significant progress by Dec. 2014 to end my suffering. I am happy to say that 2014 was a productive year. Besides nutritional supplements ( I had a full blood workup), Upper Cervical Chiropractic , Dr. Drew Hall, and a TMJ oral orthotic. My full protocol and be found on Dystonia, Torticollis & Me on FB. This worked for me and a few other women on the DMRF FB page.

  17. My experience of hiw I developed CD is that itnis purely a mechanical unbalance of the muscles around the jaw, neck and cervical spine.
    The jaw is a complex articulation that works as 2 connected class 3 levers. If the basic elements if this “machine” (as levers are defined in physics) are out of balance, applying force to the whole machine pulls the head and twists the spine.
    Elements of a lever:
    Fulcrum: the condyles
    Resistence: teeth along the plain of occlusion
    Effort: the muscles.
    Supporting structure: upper cervical spine

    If any of the structural supports is damaged, uneven, asymmetric beyond the capacity of the skeletal structure to adjust, the result is twisting and lateral or anterior-posterior shift of the whole machine.

    I developed cd as a result of neglugent dental treatment but have a set of two mandibular and amxilary splints (orthodontic retainers) that reproduce the correct bakanced occlusion.

    I have significant skull assimetries on various levels: one side of the maxilar arch has a smaller radious than the other; on the frontal plane on aide of the maxila is almost 1 cm higher than the other; the mandible is asimetric and longer on one side than the other; the midline of my incisives is lateral with respect to the mid line if the skull about 3mm; my functionally stable occlusion is rotated and when teeth occlude the do so with rotation forces supported by tooth contacts.

    Nevertheless, untill a dentist drilled away all the contacts supporting rotation forces in the teeth because “they are wrong” in his view, i qas a triathlete with no problem of any sort.

    If I sleep with the ratiners, I wake up with a perfectly alligned skeletal structure.
    If I sleep withput the retainers, I wakeup with my jaw twisted and shifted about 2,5 cm to the left (picture Stephen Hawking to hqve an idea) and domino effect subluxations of atlas, axis, pelvis, C7-T1-T2 and colapse of the whole spine with my head hanging on one sidem
    The sublaxation of these vertebrae is not a “feeling”. It is machanical and the have excursion of various mm to get back to the correct position with loud popping sounds.

    I effectively have to spinal “configurations”: a nornal one produced by the balanced effort and pulling of the head-neck and jaw muscles around the balanced resistance of the teeth: a dystonic configuration where all the vértebras along the spine readjust themeselves as they colapse trying to compensate for the twisting pull of the muscles around an imbalanced resostence provided by the dental occlusion.

    • I have CD since 2008 and have tried my treatments, and still no cure.

      I believe that my problem is my jaw. So I want to ask you are you in the USA and if so could you recommend a dentist who could help with this condition?

      Would really appreciate it if you could respond to me.
      Thanks

      • Vivienne, there is Dr. Brown in Virginia and Dr. Sims in Maryland. They work fixing TMJ problems and cranial alignment using tmj corrections.

      • I omitted that they correct the TMJ problems in an effort to alleviate Dystonia symptoms. It seems valid but dont’ expect 100% cure. can take a long time too. 1-2 years is a reasonable exectation for dystonia

  18. I would love to talk to you about the trauma piece of this…I thing that is where it comes from. I am thinking about this new treatment called Rapid Resolution Therapy, it is supposed to work on all trauma and wondered if that might help us. I have gotten better, but only once after regular therapy and that lasted a long time, then it came back. Love your blog. Please contact me.

    • Hi Lois,

      Sorry for the late reply. I haven’t tried rapid resolution therapy, but if you do it with the purpose to resolve your trauma, and if somehow it feels good to you, then just do it. It’s no use to ask someone else what is good for you and what isn’t. This is very, very typical for people with CD: they have totally disconnected from the body and therefore don’t know anymore what is good for them. So just listen to yourself, preferably to your own body, and do the things that seem and feel right to you. This route will take you to recovery, step by step.

      Regular therapy like Botox sometimes helps to make people believe they can heal or are already healed. This is already a very strong placebo. But if they don’t truly address the root cause of the problem, it will come back sooner or later, or reappear in some other form.

      Hope this helps. Let me know if you want to discuss more.

      CCD

  19. Been diagnosed with CD since 2011 I have questions and need a place to vent please just need someone to listen and understand

      • Why don’t some have the pain associated with CD not that I want it but I do have the constant head tics…I had the botox about three times last one put me in pain alot of pain, and the meds I became a zombie..I’m a very light weight person if the meds state may cause drowsie I’m asleep for half the day..so no meds, no botox for this chick..The cold weather , or the hot weather doesn’t change how I feel..i feel tightness in neck muscles sometimes or in my wrists ,(Carple tunnel).

  20. Hi Joelle so sorry to hear that you have these horrid disease but welcome! It has only been in the last few yrs that most of the pain has alleviated itself. I personally don’t do any of the meds except I did try botox which wasn’t all that helpful. I am going to try xeomin. I have mostly over the last 6 years tried every holistic and natural remedy possible. I would say if you are on Facebook to sign up with some of the Dystonia support groups. There is a wealth of info. Here are a few of things that have made a big difference for me: yoga, qigong, meditation, Dr Perlmutter’s No Grain Brain and Brain Maker books, inositol in 5 – 15 grams per day. turmeric, coconut oil and no sugar or white flour or fried foods or processed foods. Hope this helps.

    • I was diagnosed with CD 2 years ago. I took matters in my own hands and developped a splint theraphy based on a biomwchanic approach. I make mynown splints that produce orthopedic forces directed at stretching the upper cervical vertebrae.
      I felt really bad and even got to the point were I could not work anymore. That was last May. 3 months ago. Then I started splint theraphy… now I am running every day 2-3 miles, feel great., still have problems with a collapsing skull and twisted spine, but neurological symptoms are a long lost memory. And I am improving cknstaconstantly. Eveey day I am better than teh previous.
      I think that ALL of you SHOULD TRY splint theraphy. It is inexpensive, non invasive, not traumatic and with a huge proven track record in treating and helping neurological and movement disorder syndromes.

      Really!!!!
      Check my web for more info.
      You can get your life back! CD can be just a nuisance and with no drugs, pills ornother staff.
      It is a biomechanical issue!!!
      https://curedystonia.wordpress.com/

  21. I am interested in your treatment. I don’t have what you have but do have spasmodic dysphonia. I was thinking of going to this doctor in S. Korea. I was also thinking of the Yeson Voice Center or the University Hospital in Daegu. I am most interested in the alternative treatment for spasmodic dysphonia. I hope to learn more.

    • Hi Kirsten,

      I cannot help you with your question, due to lack of knowledge of your symptoms. In any case, I have learnt that there is no real external cure for any disease. We can heal ourselves, and others can help us in the process. Dr. Lee in Korea understands this. Perhaps you can contact him to ask if he feels comfortable to treat your condition.

      Kind regards,
      CCD

    • Yhe guy who draws the Delbert cartoon and writes Dilbert books xure himael completly of spasmodic disphonia. He spoke about in a recent podcast by Tim Ferris. It took him 3 years and a neurological surgery. Also he used a method based on not using his vocal chords at all for 3 months and retrained his vhords afterwords by leatning how to speak at a different tone (F).
      He is veru vocal about it. Check him out.

  22. My few symptoms began appearing around 2002. Now my visible symptoms are like the ones you described.Over the years I have done the Botox injections, nerve block injections, other procedures that were minimally invasive, pain pills, muscle relaxers. This complete life change has me on antidepressants, anxiety meds, sleeping pills. I am surprised you did not mention the origin of this malady. There is a circuit in the brain, involving the basal ganglia (deep structures) and cortex (surface of the brain) that controls movement. Electrical activity in this circuit is known to be abnormal in dystonia. If the circuitry of the brain is not changed in some way, how can CD actually be resolved? Hope you can help me. Thanks.

    • The basial ganglia misfiring is according to my experience and my approach a SYMPTOM not a Cause of Dystonia.
      Nuerologists approach Dystonia from the bio – chemical point of view.
      I approached it from the bio – mechanical point of view.
      Please be advised that I do not claim to “cure” Dystonia. Nevertheless it is evident that Dystonia is strictly related to a biomechanic collapse of the mechanisms that suppors the skull. And that mechanism is related directly with lever mechanics to dental occlusion and TMJ alignment.
      I have been symptoms free for 3 months now. All I have to do is wear a splint at nightime to sleep.
      I am going to be blunt: if tou do not try splint therapy it means that YOU are NOT serious about treating your Dystonia.

      It may not have such extremely positive results as it did in my and many other people’s cases. … but it will improve the quality of your life massively with No side effects.

      You can have your life back.

      • Who did you get the splint therapy from? What kind of Dr.? Nobody has mentioned it for my daughter. I have often thought it would help fix her cervical dystonia

        • there are only a few dr’s that do the splints (alb and gelf) It is not a “cure” but it may give significant improvement. There is Dr. Sims in Maryland, Dr. Brown in VA and Dr. Demerjian in CAlifornia. For more names google TMJ and Dystonia connection

  23. I have checked out the website curedystonia.wordpress.com/. My heart sank when I read this treatment is only for secondary dystonia. I have no original condition, accident, etc., that precluded my dystonia. Please reply. I’m still reading thru this website anyway!

    • The treatment is not only for Secondary Dystonia neither is it only for cervical dystonia. That is what I was diagnosed with and so that is where I started. There are patients currently trying out this protocol who have other types of Dystonia.
      Keep ib mind that nedical definitions in tge fiekd of Dystonia are just descriptive. They do not define specific and different meducal conditions. .. they just desctibe what they see.

      • Hola

        Me interesa su método pero quisiera saber si es necesario llevar la férula todo el día o también es eficaz llevándola menos horas ya que trabajo de cara al publico y necesito poder hablar correctamente.

        un saludo

  24. Me Wants Percs!Thanks for the clarification. I was slilhtgy confused, as I do use Tylenol 3s, but had never heard them referred to as Vicodin. However, the T3s just aren’t doing the trick. Is the clotting effect unique to you? Because I’m on warfarin (aka rat poison) blood thinner, too. After reading about it from other Fibromyalgia patients, I asked my doc to let me try Ultram (Tramadol). He prescribed Tramacet (tramadol hydrochloride acetaminophen). The pharmacist wouldn’t let me have it until he talked with me for half an hour because of the possible adverse reactions with my SSRI, including, ultimately, coma. Gak!

  25. Hello. I’m Fabie, 47 years old from Philippines and i am suffering cervical dystonia for 21 years now. I always do Botox once in 3 months or once in 6 months. Before after my injection i feel better.And i can go back to work. But now no more effect to me. I am taking Biperiden (Akineton) and Zolpidem (Zoldem) for my oral medicine to become normal and avoid turning of my neck. But after a few hours it will turn back again on moving my head. I really want to be cure but i dont know what to do. I cannot afford to go to another country. Kindly give me some advice. Thank you so much!

  26. Hi, does anybody have any ideas to relive TMD caused by Spasmidic Torticollis. My jaw muscles are very tight and always in spasm but it is not dystonia like in my neck, it is just stiffness and tension and is causing me more and more difficulty talking. Thankyou very much for your concern and kindest regards,

    Peter Markie

    • did you even try to google TMJ or TMD and Dystonia together? Go to youtube and search for tmj dystonia cure. There is a Dr. Brown in Virginia and Dr. Sims in Maryland and only a few more. You might also want to check out a chiropractor

  27. I am 67 and have cervical dystonia… Am having a lot of depression and difficulty accepting this disorder. Thank you for writing about your know experience. I am an ESFP. I have had childhood and adult trauma. I also believe heap ng within is part of the process. Thank you again.

  28. i am doing a speech about cervical dystonia and I needed a story to work with and I came across yours and was moved I want to thank you and people like you who put yourself and your stories out there. I would like to know can people help fundraise anything to help with any research to help find a cure?
    thank you
    Anna age 14

  29. Very interesting information!
    I am a Medical Massage Therapist wI think a CD patient. Any specific suggestions for massage techniques?

  30. Hi, I must have read your blog a lot of times, u have pretty much summed up the life of a CD patient. I have tried botox, dysport and little bit of ayurveda. Living in India has difficulty reaching out to advanced medications beyond this. I was interested in FSCT clinic but I was worried if its worth the money we spend on it. Dr Lee has asked me to go their to get diagnosed and then think about treatment.oh yes I have enrolled into long distance program from Aby’s STRC and still continue to follow the exercise..
    .but it has been botox which has helped me so far. I would like to hear from you about Dr lee’s treatment, is it really worth spending for that treatment? And how is your CD now? Have you got cured completely?

  31. Your site interests me as a friend has signs of CD. My area of expertise for 35 years is Reflexology and an associated reflex concept – Metamorphosis discovered and developed by Robert St. John in the 1950s in London, UK. Meta goes further than Reflex, into the blockages in the unconscious attitudes of mind created by genetic and karmic inheritance at conception, this being all of our primary “stuff”. If there is serious interest I’m offering free how-to tho’ being new to cyber world might present difficulties. Regards.

  32. just reading this much is bringing positovity in my approach towords CD I AM A GRNERAL SURGEON AND HAD TO GIVE UP SYRGICAL PRACTICE DI TO CD SINCE LAST6YEARS I AM LOOKING FOR SOMME WORK THAT I CAN DO TO EARN MY LIVING FOR ME AND MY FAMILY I AM OPEN 6O SUGGESTIONS

  33. Thanks for your story.
    I’ve had CD for 33 years
    It has been in regression a few times,
    But after I had a neck fusion surgery in 2014
    And had 2 years of traumatic hell on my job as
    An RN, the CD and the pain took me down.
    I had to retire at 62. For 2 years I have had every alternative treatment imaginable but the pain and twisting continue.
    I am going to Abbie”s clinic on Aug 30-31
    Hopefully it will be the start of relief
    Good luck to you!

  34. I took botox shots twice, one in 2011 5 units of botox(total 20 shots) and for 2 years i did not have any symptoms, then in 2113 it partially came back and I did 3 units and since then I did not have any symptoms at all, so I wonder is this normal ? or maybe I did not have a CD at all and it was something else ?

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