Phenomena

On this page I will summarize my findings regarding how primary/idiopathic cervical dystonia (spasmodic torticollis) manifests itself. It is my personal meta-study, observing the phenomena associated with CD/ST. This will allow searching for patterns. Most of the below statements are harvested from specialist websites and from the articles that are stored in the Documents section of this blog.

So let’s begin to address and further define the ‘mysteries’ associated with CD/ST. And after reading this page, make sure to read the page Perspectives, which I consider to be the most important page of this website, as it provides real insight.

 

1.       Sex bias

Primary cervical dystonia occurs more frequently in women than in men. The ratios found vary slightly, but it is safe to say that there are about twice as many women affected by CD than men.

 

2.       Age of onset

Although primary CD is seen to start in a wide range of ages, the majority of cases develop between 25 and 55 years of age, with a mean age of onset of 41.

 

3.       Sensory tricks

Many CD patients have at least one sensory trick (a.k.a. geste antagoniste), i.e., a gesture or position that significantly and measurably reduces muscle tension and therefore brings relief. This is a temporary effect though: roughly 1 minute. Gently touching the chin, the cheek, or the back of the head often helps. Mostly, touching the face/head at the side to which the head turns, induces the sensory trick. When a mechanical item is used instead of the patient’s finger/hand, the effect of the sensory trick is equally present. However, when someone else performs the sensory trick on the patient, its effect is much reduced.

 

4.       Other ‘tricks’

  • There are patients with visual sensory tricks. E.g., they find relief when fixing their eyes on themselves in the mirror, or when looking at a specific point on a blackboard.
  • When yawning or opening the mouth to the maximum, many CD patients experience significant or even full relief of their symptoms.
  • CD patients often have a deviating plantar reflex, called the Babinski sign, where the big toe moves up instead of down. In general, the Babinski sign is an indication of issues with the spinal cord and brain.
  • When asleep or lying on their back, most CD patients don’t have symptoms.
  • Wearing red-lens glasses aggravates the symptoms, whereas green-lens glasses (temporarily) alleviate them.
  • Some CD patients experience relief of their symptoms while walking backwards.
  • Some CD patients experience relief of their symptoms when hanging upside-down.
  • Stress aggravates the symptoms, and relaxation alleviates them.
  • Many CD sufferers experience relief of symptoms when they allow to genuinely feel and experience their emotions.
  • Some CD sufferers have complete relief of symptoms when feeling intense gratitude and (self) love.
  • Some CD sufferers have significant relief of symptoms when laughing.

 

5.       Clinical profile

Apart from the obvious CD symptoms and sensory tricks, CD patients have more clinical similarities.

  • Thyroid dysfunction is common among, especially, females with cervical dystonia.
  • It is probable that primary CD patients have a genetic predisposition to this disorder, which can be traced back to the DYT7 gene.
  • Most primary CD patients are able to link the onset of their symptoms to severe stress.
  • CD patients often have light eyes (gray, blue, green or hazel).
  • In the family history of CD patients, essential tremor seems to occur more frequently.
  • CD patients often have some degree of scoliosis.
  • Most CD patients have some form of temporomandibular joint dysfunction (TMD).
  • Forward head posture (FHP) is very common as well.
  • A certain number of CD patients also complain about ear infections and pain preceding their CD symptoms. Many also have a history of ear infections as a child. (By the way: rabbits very often get torticollis after a middle-ear infection.)
  • Many CD patients are light and sound sensitive.
  • A significant portion of CD patients is ambidextrous or at least use both hands for different tasks.
  • Perspiration problems (excessive or inadequate) are also frequent.
  • The majority of CD sufferers has insufficient breathing.
  • A nonnegligible part of CD sufferers treated with Botox, experiences complete remission after one or only a few treatments. However, symptoms reappear within a few years after remission.

 

6.       Psychological profile

Recently, quite some research has been done into the psychological profile of CD patients, with the following findings.

Personality features

  • Pronounced agreeableness
  • Strong feeling of responsibility for others
  • Tendency to avoid conflict
  • Reduced openness, difficulty to express (negative) feelings
  • Distinct conscientiousness
  • Inclination to obsession
  • Propensity to structurize and be rigid therein
  • Tendency to perfectionism
  • Tendency to be demanding and set unrealistically high goals
  • Pronounced need to be in control
  • Tendency to psychosomatic complaints
  • Issues with self-esteem
  • Pronounced self-consciousness

It has been found through this blog, that (so far all tested!) CD sufferers have MBTI personality type INTJ. This is one of the rarest personality types. Their characteristics are:

  • I – Introversion preferred to extraversion
  • N – Intuition preferred to sensing
  • T – Thinking preferred to feeling
  • J – Judgment preferred to perception

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.

INTJs apply (often ruthlessly) the criterion “Does it work?” to everything from their own research efforts to the prevailing social norms. This in turn produces an unusual independence of mind, freeing the INTJ from the constraints of authority, convention, or sentiment for its own sake. INTJs are known as the “Systems Builders” of the types, perhaps in part because they possess the unusual trait of combining imagination and reliability. Whatever system an INTJ happens to be working on is for them the equivalent of a moral cause to an INFJ; both perfectionism and disregard for authority come into play. Personal relationships, particularly romantic ones, can be the INTJ’s Achilles heel. This happens in part because many INTJs do not readily grasp the social rituals. Perhaps the most fundamental problem, however, is that INTJs really want people to make sense.

INTJs are analytical. Like INTPs, they are most comfortable working alone and tend to be less sociable than other types. Nevertheless, INTJs are prepared to lead if no one else seems up to the task, or if they see a major weakness in the current leadership. They tend to be pragmatic, logical, and creative. They have a low tolerance for spin or rampant emotionalism. They are not generally susceptible to catchphrases and do not readily accept authority based on tradition, rank, or title.

INTJs are strong individualists who seek new angles or novel ways of looking at things. They enjoy coming to new understandings. They tend to be insightful and mentally quick; however, this mental quickness may not always be outwardly apparent to others since they keep a great deal to themselves. They are very determined people who trust their vision of the possibilities, regardless of what others think. They may even be considered the most independent of all of the sixteen personality types. INTJs are at their best in quietly and firmly developing their ideas, theories, and principles.

Hallmarks of the INTJ include independence of thought and a desire for efficiency. They work best when given autonomy and creative freedom. They harbor an innate desire to express themselves by conceptualizing their own intellectual designs. They have a talent for analyzing and formulating complex theories. INTJs are generally well-suited for occupations within academia, research, consulting, management, science, engineering, and law. They are often acutely aware of their own knowledge and abilities—as well as their limitations and what they don’t know (a quality that tends to distinguish them from INTPs). INTJs thus develop a strong confidence in their ability and talents, making them natural leaders.

In forming relationships, INTJs tend to seek out others with similar character traits and ideologies. Agreement on theoretical concepts is an important aspect of their relationships. By nature INTJs can be demanding in their expectations, and approach relationships in a rational manner. As a result, INTJs may not always respond to a spontaneous infatuation but wait for a mate who better fits their set criteria. They tend to be stable, reliable, and dedicated. Harmony in relationships and home life tends to be extremely important to them. They generally withhold strong emotion and do not like to waste time with what they consider irrational social rituals. This may cause non-INTJs to perceive them as distant and reserved; nevertheless, INTJs are usually very loyal partners who are prepared to commit substantial energy and time into a relationship to make it work.

As mates, INTJs want harmony and order in the home and in relationships. The most independent of all types, INTJs trust their intuition when choosing friends and mates—even in spite of contradictory evidence or pressure from others. The emotions of an INTJ are hard to read, and neither male nor female INTJs are apt to express emotional reactions. At times, INTJs seem cold, reserved, and unresponsive, while in fact they are almost hypersensitive to signals of rejection from those they care for. In social situations, INTJs may also be unresponsive and may neglect small rituals designed to put others at ease. For example, INTJs may communicate that idle dialogue such as small talk is a waste of time. This may create the impression that the INTJ is in a hurry—an impression that is not always intended. In their interpersonal relationships, INTJs are usually better in a working situation than in a recreational situation.
Source: http://en.wikipedia.org/wiki/INTJ

Psychiatric features

  • Enhanced lifetime prevalence for any psychiatric or personality disorder. More specifically: axis I disorders (e.g., depression, anxiety, bipolar disorder, ADHD, schizophrenia, anorexia nervosa) occur at a highly increased chance.
  • High prevalence for social phobia, agoraphobia and panic disorder.
  • Increased prevalence for anxious personality disorders, comprising obsessive–compulsive disorders and avoidant personality disorders.
  • Social phobia in CD patients are very prevalent.
  • Important: recent insight shows that (except perhaps social phobia) psychiatric comorbidities are not the consequence of CD, but manifested prior to the occurrence of dystonia symptoms, often by many years!

Deficits

CD patients don’t have obvious cognitive deficits. However, there are a few findings that indicate deficits in some areas.

  • In neuropsychological tests, CD patients demonstrated significant difficulties “negotiating the extra-dimensional set-shifting phase of the IED task”, or according to me, simply put: “certain difficulties thinking outside the box”.
  • CD patients were also found to have a deficiency in the perception of angry voice intonation. Their perception is less accurate and slower. This effect is not so pronounced with other emotions.
  • In praxis tests, CD patients make significantly more errors in copying meaningless gestures and are slow in the performance of meaningless sequences of hand movements. Hence, they appear to have a disorder of “motor planning”. (However, copying meaningful gestures and performance of meaningful sequences of hand movements is normal.)

 

7.       External causes

Officially, the cause of primary/idiopathic dystonia is unknown. In some cases, the dystonia can be linked to an external cause. Then the disorder is classified as secondary dystonia. Some of the most frequently identified causes are the following.

  • Brain damage
  • Poisoning
  • Wilson’s disease or other diseases of the nervous system
  • Physical trauma to head and/or neck
  • Drugs (then the disorder is called tardive dystonia)

As for the latter category, about 2.5% of patients treated with neuroleptic drugs develop acute dystonia within 48 hours of commencing therapy. The symptoms often remit on drug withdrawal or following anticholinergic therapy.

 

8.       Consequences of CD

The above phenomena represent quite a list, which allows to look for patterns and to start deciphering the meaning of cervical dystonia. For a more in-depth understanding of CD, I think it also makes a lot of sense to describe what the practical consequences of the disorder are. From what I heard from others, and from looking at myself, I can come up with the following generic observations.

  • Loss of control
  • Loss of free, peripheral vision
  • Loss of flexibility
  • Loss of balance
  • Loss of autonomy and freedom
  • Social embarrassment
  • Lower stress resistance
  • Slower pace of life

102 thoughts on “Phenomena

  1. Wow this is a lot to digest, I do see a lot of myself and a lot not.
    I am female, and it hit last year just turning 45. Possibly the prevalence being women is we are more sensitive creatures more prone to stress, and more feelings of responsiblity for others since this is a mothers instinct.
    One thing about this disorder for me is I blame myself for it. I feel like I have done it to my self because of the stress, frustration and anger that I had prior to the onset. i had some chronic stress for several years prior due to family illnesses, problems and split up in marriage, a major move to arizona from Maui which i regretted everday for the last 2.5 years.
    I’m finding it hard to forgive myself for this because I feel I created it. And I am now a burden on those who love me, where before I was always the strong healthy one that was always there for them and I guess I felt too responsible for everyone else. Wondering if anyone else feels this guilt?
    My physical causes are that at some point in my life I had a severe whip lash. And my profession was a “nail techinician” So while doing pedicures, my posture was very bad for too many years.when you look down like that, my tiny little cervical spine was literally holding my head which is heavy like a bowling ball causing me all kinds of problems, which led to this.
    I feel determined to heal myself I have to.
    Anyways i guess we have a lot of healing to do, for now, i’m off to nature, hoping I experience the same results as yesterday.

    • Yes, I think you have done it to yourself indeed. As we do everything to ourselves. But don’t feel guilty about it. You may come to understand why you are the way you are. I am getting really close to this understanding and will soon add a new section to this blog to speak about that. I am starting to see that I became like this because I had to protect myself in the past, cutting off part of myself. It’s a survival mechanism that persists long after it’s been established, and finally causes disease. Forgiving yourself is vital in the healing process. And you will be able to do so once you better understand yourself.
      As for the physical causes you mention, and especially the whiplash, these are not the cause but these are consequences. That may sound strange, but in the soon-to-add section this will become clear. There is solid empirical research behind this statement.

      • I was diagnosed with CD at age 71. I am female. I did have a severe blow to back of head 2 years ago. I’ve recently been diagnosed with TMJ for which I have a splint which helps my condition but hasn’t cured it however it is early days for the splint therapy.
        Here is my feed back on the insights of the blog.
        None of the following psychological points apply to me:
        Inclination to obsession
        Propensity to structurize and be rigid therein
        Tendency to perfectionism
        Tendency to be demanding and set unrealistically high goals
        Pronounced need to be in control
        Tendency to psychosomatic complaints
        however the rest of list does.
        None of the psychiatric points apply to me and only the last one of the Deficits might apply , haven’t done that kind of testing. I am fine walking and even better dancing but sitting and lying down are problematical as is typing (on PC) and reading. I have had to give up Aquacise as that aggravates it. I can drive for 30 minutes or so and be OK unless neck twisting when I don’t drive at all but being driven aggravates condition however flying is fine and train is OK for short journeys. I can snorkel but can only do a kind of doggy paddle as normal strokes make shoulders and neck extremely painful

    • Please do not blame yourself for your condition. It takes 2 people for a relationship to fail, and I know from my own experiences the stronger you are and the more able to cope you are the more people will lean on you and expect your support as their right. You’re only fault was to allow them to but I know from my own experiences it’s like being on a treadmill and you have to help whenever you’re asked, you expect it of yourself and they expect it from. Now it’s payback time, it’s other peoples turn to care for and support you as you cared for and supported others, no need for you to feel guilty that care is already earned. You will still be helping others but in different ways such as contributing to forums like these and sharing those experiences and coping mechanisms you feel comfortable to share.
      Look in the mirror each morning and say to your reflection ‘I love and accept you as you are’ OR ‘What can I do to make you happy today’
      And yes I used to feel guilty like you do for similar reasons but I no longer blame myself. When I revisit the past I say ‘I forgive you’ about those who hurt me and to myself then turn my mind to more pleasant memories or present day activities. Allow yourself to laugh and cry it all helps. Take care of yourself. Check out possible TMJ dysfunction (dentist) and see a good osteopath or chiropractor. Always remember it’s your body and if you don’t like what a practitioner or doctor advises or wants to do don’t do it until you’ve checked it out thoroughly

  2. Great work – nicely organized. Thanks for putting these together along with posting the document links! I also have done quite a few web researches before confirmed the CD diagnosis, but I’m learning much much more from this blog. Academic findings are very interesting. I think the existence of many different theories tells the deep complication of this disorder.

    Here are my observations why more women affected by CD:
    The personality features listed are more typical of women than men in terms of relationship-oriented and caring traits. (I’m also a woman, 45, and actually most of this personality features applies to me as well.) In addition, I think women generally have more social pressures than men, both at work and in private life, thereby more prone to stress overtime. (I also first thought that one of the reason would be that women tend to have the slender and delicate neck stricture that is harder to support straight, compared to men who tend to have thick and sturdy neck, but I’m now skeptical about it after I saw a few photos/videos of men who have CD and the very thick neck.)

    I feel the thyroid dysfunction could be a coincidence of the age and sax factors since it is also more common in women than men and is also correlated with the premenopausal syndrome for women after 40, all combination of hormone imbalance. (Though these big changes in the women’s body may be prone to trigger the CD onset.)

    I would add self-consciousness in the personality features list, which was in a document you posted.

    I totally agree with the consequences of CD listed in here. My social life greatly affected after the CD symptoms because of embarrassment – I was more social and always willing to meet new people before CD. If we didn’t have social network like this, those who have CD might be more isolated. Thanks to the blog we’re not!

    I believe that CD is the result of combination of the long-time habitual body use and tension, stress, habitual (nagging) negative thinking, and environment, so I think changing environment could also help CD condition worse or better. My condition got worse over the years each time I changed my job and/or city to somewhat more stressful ones.

    I now feel like working on CD is total deep cleansing of body and mind – it time-consuming and costly!

    • You’re welcome! And thanks for your thoughtful and elaborate response!
      Interesting observation regarding the women! I think there is truth in what you say. I think it is a fact that bad guys, who don’t care much about others and their surroundings, will never get dystonia. Never. On the other hand, the question is: are these personality features typical for women and are they therefore prone to get dystonia? Or are these personality features a consequence of something that happened to us, just like the dystonia is a consequence of that something? Or a bit of both?
      The same thing goes for the factors you mention (body use, tension, stress). Again, the question is: are these causes or consequences, like the dystonia is a consequence? I think in this case, these are also consequences, not causes.
      I will write about this sometime soon!
      And I will add the self-consciousness.
      Thanks again for your feedback! Please keep doing that.

      • So to respond to ur post,I have cd, and have found that my cause was a stroke,but I strongly believe that stress is a super major roll in acquiring this disorder.woman as a rule do go thru more stress in life I agree,I also have found out that young children are getting cd,to know this and to also have it.oh how it breaks your heart to know children have this cruel illness..but why,,why are they getting it,why is it inherited..not sure.I have a sensory trick for me and it is as follows I wear a hooded jacket when its cold and the pressure of the hood on my head allows me to almost walk straight again and walk normal for a bit,,maybe it will work for you,good luck and my prayers are with you all……

  3. As for your women’s traits – dystonia conundrum, I bet women’s traits comes first (causes) – it’s just by nature. Of course not all of them but many more compared to men. Vice versa, there are some men who have these traits by nature but not so many. Though, prolonged CD could change personalities in negative ways, especially on the social interactions.
    Another observation is that I realized that when I’m into something, very concentrated and almost forget about surrounding and time, or having so much fun time and forgetting about myself, my CD symptoms are almost gone. So I’m wondering CD people may also be easily distracted as well as caring about others eyes too much.
    In the U.S., I feel that neurologists tend to overlook mind and psychological aspect of CD.

    • You may be right about the women. But I do think there are several of the traits that they do not have by nature…
      Interesting observation, that your CD almost vanishes (temporarily) when you are concentrating on something else. I have experienced the exact same thing. I am trying to get a grip on this. Maybe I’ll write more about that in my next post…

      • I have noticed my cd symptoms get way worse when my “monkey mind” the mental chatter kicks in. Even though when this happens your totally into the mind and not thinking about the cd, the symptoms will come with a vengeance.
        On the other hand when I’m focusing and working on housework, it goes away.
        I haven’t tried the fun thing to see if it goes away, how does one have fun with cd I haven’t figured that one out yet, haven’t had fun in many many months now.

        • Housework is kind of meditative, I guess…
          I have experienced my CD going away after laughing (e.g., when watching Borat or Top Gear)!

          • I’m surprised to know that you both can get a relief from CD when doing housework since housework (cleaning, etc.) involves a lot of movements and walking around! To me, my CD get worse by doing housework (especially cleaning). I get temporarily relieved when I’m swimming (definitely), taking a Jacuzzi (best), reading or writing without distraction, in other words, most of the time when I’m not walking or moving arms up. Again, a discovery of individual uniqueness on CD.

          • I think it all depends on how much the individual hates housework ;-)
            By the way, I can confirm that taking a hot bath also works for me. And I think for any CD patient. Writing has been hell for me in the beginning. I wasn’t able to sit behind my computer or to write on a piece of paper without severe spasms. So yes, there are so many individual differences…

          • Moving around and doing some work isn’t hard for me, although I don’t know how many hours I could go on for.
            it’s the sitting still, standing or
            hiking that I have more trouble with.
            I used to be able to lie down and the symptoms would vanish, now unfortunately the pull to the left can be strong and now resting can even be challenging. so the only time I am actually relaxed is when I fall asleep.
            I am hoping once I start the
            strc program that the pulling will be the first to go!!

          • CCD: True. It’s great it seems you condition is much better now that you can write this much now.
            There may be a trap about focusing on something and forget myself and CD, though. Right after that happened, my CD conditions can get worse because I also forget about the posture – going back to the bad posture. I believe we need to be conscious about it rest of life, even after recovered or cured from CD.

            sunflowersprout:
            If you plan to take the STRC on-site course and buy the manual at the same time as you mentioned before, I would recommend you take the long-distance course first before visiting there if you’d like to start soon. You’ll receive the kit in a few days after you paid. Even you take the on-site course later, I bet you’ll still have a lot to learn when you are actually there. (I’m doing very slow – mostly just started to read the manual today but I’m learning a lot!)

          • Yes, posture is crucial. The realignment done here goes hand in hand with correcting the posture. And it’s really working: my posture is definitely improving here. In the beginning it took a lot of effort, but it becomes easier all the time to keep a correct posture. So I think that at some point in time, I won’t have to be conscious about it anymore.

            Check out the new page Perspectives!

          • It’s been so helpful to understand how Dr. Lee’s treatments work because of the detailed postings on this blog! The approach gets more and more making sense to me, which is helpful to find the right approach for the treatment for myself (with the combination of the STRC program), even though I can’t be Dr. Lee’s clinic soon.
            Nearly about two weeks of effort, I was finally able to achieve the military posture (only when consciously standing or sitting, and now I’m kind of the fight-back more on my neck jerking when I walk), so I see what you mean – I had no idea at first how to make the military posture. Since I don’t have a doctor or stuff who help me with posture like you, I try to use mirrors a lot to check my posture from the side. Since perspective about own posture can become out of order for those with CD, the objective views are crucial until it is reprogrammed to the body and brain correctly. The good upright posture definitely helps lift the mood and spirit. (Likewise, the slouching posture induce negative thoughts.)
            I’ll indeed check out your Perspectives page but give me some time…

          • Happy to hear that it is starting to make more sense! Congratulations on your progress with the military posture! I still have considerable fight-back, but today I started to make my walking less static, with more hip movement. It’s a challenge, but in the end we need flexibility when we walk (and in the rest of our lives). The military is an instrument that we can let go of at some point, when things are becoming more natural (again).
            Interested to know what you’ll say about the perspectives. I’ll add more soon.

        • hello sunflower, this is mistyeyes. I also have CD.I have had this condition for 25 yrs now. I had no idea what I had, I was just told to see Dr dykstra at the Uof M in MN for botox injections. I have been doing that. I have watched some interesting videos recently, connecting TMJ to CD. there are 2 Dr’s one in California and one I Maryland, that make these mouth pieces for their patients, they put this piece inside their mouth, and there head and neck go back to normal position. symptoms disappear. amazing! I have started taking magnesium capsules. magnesium is essential for your muscles, it calms them. 200 mg capsules blue bonnet is the brand, bought on iherb.com. I take 2 capsules with breakfast and 2 capsules at bed time. My tremors have calmed down, and my bowel works better now too.

          • I take magnesium malate – a bit more expensive – because it’s absorbed into the system quickest 2, 625mg in morning and 1 in the evening. I also take Vitamin E and B12. At night before bed I take 1 Vit. D3 and 1,1000mg Cod Liver oil capsule. These all help control movements as does splint I have for TMJ although my splint now needs adjustment so not as effective as originally

    • Dolphin thanks for advice,
      no I’m not going to buy both. I’m shooting for the original program on site. Abigail said that I will get some kind of dvd and manuals with it so that I won’t forget anything. So I’ll only have to spend the $1000.00.

  4. Funny thing happened yesterday. My husband was being harassed by a jerk for being parked for a few minutes on his piece of dirt.
    I never give anyone a hard time unless they treat me or someone I care about badly.
    So I got out of the car and was very confrontational with this jerk, I am a very nice person until someone crosses me unfairly. I wasn’t sure I was capable of it, I haven’t been confrontational with anyone since my cd symptoms became more debilitating a few months ago.
    So the point of it is, while I was standing in front of this bully,who was postulating in a threatening way towards my petite female frame, my cd symptoms seemed to vanish, and my normal fiesty self returned.
    Glad to see I still have spirit, and this spirit is going to overcome these strange symptoms and lead me to recovery!!

    • That’s the spirit! Nice story! It seems that, as soon as we allow ourselves to be ourselves whole heartedly, we become whole…

      • Yes very well put, it seems emotions whether they are anger, laughter, crying, etc., seems to momentarily be healing, what a mystery!

        • Perhaps not that mysterious! I am working hard to add a new section to the blog, called Perspectives, in which I try to shed more light.

  5. Hallo, hier meldet sich Luxemburg,

    zuerst an Sie einen riesen grossen Dank uns an Ihrem Abenteuer teilhaben zu lassen. Zu meiner Geschichte : vor 13 Jahren, mit 29 sehr grosse Stresszeit, letzte praktische und theoretische Examen, innerhalb von 1 Woche bekam ich meinen Doktortitel und wurde schwanger ; ich dachte YOP jetzt gehts los, mir gehört die Welt und dann YOP zugleich Mama, das wird taff aber super. Und dann wurde ich schief und schiefer, konnte nicht mehr Auto fahren und konnte nicht mehr mit Messer und Gabel essen……; ich sass mit meinem Baby zu Hause und hatte Angst mich nicht mal richtig um es kümmern zu können (kleine Selbstmitleidskrise). Dann bekam ich irgendwann die Wende und es ging wieder bergauf.
    Wenn ich jetzt durch eine Menschenmasse gehe, Elternversammlungen (inzwischen 3 Kinder) Medizinseminare, zerfliesse ich jedesmal, ich habe das Selbstbewusstsein einer Haselnuss.
    Bin ich in der Praxis, in meinem Bereich, empfange die Leute, erkläre alles, handle, behandle oder selbst im OP bin ich ich, kein tristes Anhängsel mit Schiefhals, kein bisschen schüchtern, sondern eine hilfreiche einfühlsame Arztin. Ich bin mir meiner Dystonie dann einfach nicht bewusst und habe im nach hinein oft gedacht dass ich dann nicht an sie denke weil sie nicht da ist, oder sie ist nicht da weil ich nicht an sie denke. Das klappt bis dann jemand wohlwollend sagt “ist aber auch nicht immer so einfach für sie;” , “oh so ein Tortecolis schmerzt aber auch schön” “oh es hat sich aber auch noch nicht gebessert bei ihnen”. Das bringt mich dann jedes mal mit 1000km zur Wirklichkeit zurück, genauso wie Photos aus Attraktionen in Freizeitparks wo ich manchmal denke dass ich mich richtig gut gefühlt habe und dann doch furchtbar aussehe………..
    Ich hatte jetzt seit fast 5 Jahren nicht mehr TS gegoogelt. Vor etwa 3 Wochen hab ich Fakten zu Huntington gesucht und bin dann bei Dystonien gelandet, bei Santa Fee, bei Dr Lee…..Ich war wie vom Fieber gepackt, kann nicht mehr aufhören und fühle mich besser, habe wieder Wind unter den Flügeln; und dann habe ich Ihren Blog gefunden und bin einfach glücklich. Ich wünsche Ihnen und allen Betroffenen nur das aller beste und viel Kraft. Ein schönes Wochenende an alle.

    • Gut zu wissen, daß meinen Blog sogar in Luxemburg gelesen wird! Zunächst einmal vielen Dank für deine Geschichte. (Können wir uns duzen? Wir sind ja schließlich ‘unter uns’.)
      Die Geschichte ist so erkennbar. Die Verzweiflung, die Probleme mit dem Selbstwertgefühl, und auch die Momente, die man (im sicheren Bereich) sein kann wer man ist und weniger durch die Symptome belästigt wird.
      Und es macht mich froh zu wissen, daß du neue Hoffnung gefunden hast. Ich arbeite hart daran, um geheilt zu werden, auch um andere Menschen mehr Hoffnung zu geben!
      Liebe Grüße aus Cheonan!

  6. here is another CD from germany. just to let you know that this blog feels good every day seeing that others have the same fight like me. I am giving everything fighting this devil inside without botox!

    the day will come that everything will be fine, just a matter of time.

    keep your head high, don´t loose power and mind, be patient.

    cheers

  7. Hola.
    Soy un hombre de 45 años y tengo distonía cervical.
    Hace unos 10 años me apareció CD y estuve un año con la cabeza completamente girada a la derecha. Me estuvieron infiltrando Botox y en la cuarta ocasión que me lo infiltraban, recuerdo que el doctor comentó “te estoy pinchando mucho, no sé si te pasará algo”. Empezaron a pasar los días y fui mejorando hasta el punto que durante 8 años no volví a ir al neurólogo.
    Ahora, después de estos 8 años con casi total dominio de mi cuello, me ha vuelto a aparecer CD. Después de estar 8 años bien!!!!!!!!
    Me han vuelto a infiltrar Botox en tres ocasiones pero no ha funcionado.
    ¿A alguien le ha pasado algo parecido?¿alguien me podría dar una explicación.
    Gracias y ánimo a todos!!!

    • ¡Hola!
      Es una historia verdaderamente notable. He leído sobre casos similares en otros foros de pacientes. Después de un cierto número de inyecciones de Botox, el CD desapareció y se mantuvo en remisión por un largo tiempo. Pero si mi memoria es correcta, los síntomas se volvieron con el tiempo, al igual que en tu caso.

      Creo que hay dos posibilidades.

      1. Tuviste una remisión espontánea, que también se habría producido sin el Botox. Eras todavía relativamente joven cuando ocurrió, y las remisiones espontáneas ocurren con mayor frecuencia en personas más jóvenes. Y en la mayoría de los casos, los síntomas vuelven a aparecer después de varios años, al igual que en tu caso.

      2. Después de recibir estas últimas inyecciones de Botox, te has curado. Con el alivio de los síntomas, es posible que hayas sido capaz de darte a tu cuerpo la oportunidad de cambiar los patrones existentes (es decir, los síntomas de CD). En general, este es un fenómeno conocido: la supresión temporal de los síntomas a veces permite que el sistema recupere.

      A fin de comprender mejor tu situación, me gustaría preguntarte lo siguiente.

      – Después de las últimas inyecciones de Botox hace 8 años, ¿qué ha sucedido en tu vida? ¿Has cambiado algo en tu vida diaria? ¿Has cambiado tus puntos de vista sobre la vida misma, o tus puntos de vista sobre ti mismo?

      – ¿Puedes explicar por qué los síntomas reaparecieron recientemente? ¿Ha ocurrido algo estresante? ¿O es que cambiaste algo en tu vida otra vez?

      – ¿Has leído las secciones Fenómenos y Perspectivas de este blog? ¿Te reconoces en el contenido?

      ¡Con la esperanza de oír de ti pronto!

      Un abrazo desde Corea del Sur, de un hombre de 45 años con distonía cervical

      • Hola CCD.
        Intentaré contestar a tus 3 preguntas.
        1ª 6 años después de estar “curado”, me separé de mi mujer, bueno……en realidad fue ella quien se separó de mi. La CD me volvió a aparecer 2 años después de la separación, aunque sí que he de decir que esos dos años fueron terribles, ya que fuí descubriendo engaños y mentiras.
        La CD empezó a aparecer de forma muy sueve cuando encontré a Eli y me enamoré.
        Mi percepción sobre la vida, sí que ha cambiado. Pienso que no te puedes fiar de nadie. NUNCA había desconfiado de mi ex-mujer y JAMAS habria imaginado que pudiese hacerme tanto daño.
        2ª Durante los 8 años sin distonía, habían momentos en los que notaba que tenía un aumento de CD. Eran unos días y desaparecía. No sé asociar estos síntomas con momentos de estrés o cambios de tiempo.
        Lo único que cambié fue que empecé a querer a otra persona.
        Personalmente creo que la vuelta de CD no tiene nada que ver con estrés, miedos, cambios de vida, sentimientos, ira, etc.
        3ª Sí, ya había leído la sección de Perspectivas y fenómenos. Me siento en parte reconocido en ellas, pero creo que la explicación es que hay tantas características que la mayoría de personas podrían verse reflejadas.
        Espero haberte ayudado en tu investigación.
        Podrías darme un correo privado para escribirte?
        Suerte!!

        • Muchísimas gracias por tu respuesta franca. Dices que piensas que la DC no tiene nada que ver con el estrés, la ira, etc. ¿Crees que la DC sólo sucede por accidente? Para ser honesto, no puedo creer que piensas eso. De lo contrario, no estarías participando en este blog. Estás claramente en busca de respuestas, una explicación. Las descripciones en las secciones fenómenos y perspectivas son elaborados, eso sí, pero también muy específicas. Es mi firme creencia que las personas con DC han sufrido de un trauma, sobre todo trauma de la infancia, seguido de una vida con trauma acumulado. Como consecuencia, tienen una gran cantidad de ira reprimida, y problemas con la autoestima. También se están convirtiendo cada vez más vulnerables. Cuando tu esposa te dejó, este fue un duro golpe para tu autoestima. Por lo tanto, fue aún más difícil confiar en ti mismo, y por supuesto se hizo imposible confiar en otras personas. (Por ejemplo, en realidad sólo puedes amar a los demás si te amas a ti mismo.) Este golpe finalmente agravó tu estado de congelación y provocó la DC otra vez…
          Espero que no estoy demasiado directo contigo.
          Claro, puedes contactarme en info@curecervicaldystonia.com
          ¡Un abrazo!

          • Hola.
            No te preocupes por ser directo. Creo que todo se puede preguntar y explicar dentro de la educación.
            Creo que me expliqué mal. No descarto por completo que el origen de la DC sea por traumas, miedos o iras, de hecho creo que puede ser por cualquier motivo. También pienso que dentro de este aspecto psicológico puedes pasarte toda una vida para averiguar el origen.
            La primera vez que apareció la DC en mi vida fue poco a poco, hasta llegar a un punto máximo en el cual mi cabeza se giraba totalmente hacia la derecha y se quedaba clavada en esa posición, no había forma de girarla y el dolor era insoportable. Me pasaba todo el día tumbado en el sofá. Así estuve todo un año.
            Esta vez ha sido diferente. Llevo casi un año con DC activa y la cabeza se me gira a la derecha, pero no se me queda clavada, soy capaz de moverla normal, aunque a los pocos segundos vuelve a girarse.
            El dolor tampoco es tan fuerte como la otra vez. Podría decir que es una DC más suave que la anterior.
            He intentado escribirte al correo que me diste pero no funciona, no lo puedo enviar.
            Se me olvidaba. Mi infancia fue muy feliz, no recuerdo ningún trauma.
            Saludos.

          • Muchas gracias por tu colaboración. Pues, nunca se puede estar 100% seguro de la causa a base de hechos reales, pero la intuición te puede decir mucho. Y cuanto más buscas de respuestas, más respuestas conseguirás. Personalmente, entretanto, estoy bastante seguro de donde viene mi DC.
            ¿Tuviste un trauma físico a la cabeza y/o el cuello?
            De tu historia, tengo la impresión de que realmente has curado gran parte de los síntomas después del primer período con DC. Por lo tanto, es menos grave ahora.
            Mi correo electrónico debería funcionar. ¡Te enviaré un mensaje a partir de ahí!

  8. Hola, vuelvo a ser yo.
    Creo que el traductos no funciona correctamente. Si hay algo que no entiendes, dímelo, por favor.

  9. Hola.
    No he tenido ningún traumatismo en la cabeza o en el cuello. No sé si como dices, parte de mi DC ha curado, pero lo que si sé es que después de un año y después de haberme infiltrado Botox, tomado unos cuantos medicamentos, probado una dieta, seguir las instrucciones de un kinesiólogo, masajes, etc, mi DC sigue su curso y cada día empeora y me duele un poco más. Hace 10 años, cuando me infiltraban Botox, mejoraba algo. Ayer me dijo mi neurólogo que no me infiltrará más toxina botulínica porque no me produce ninguna mejora. Estoy empezando a desesperarme.
    Saludos.

    • Siento oír que estás empezando a desesperar. Pero no hace falta. Por favor, lea la sección de tratamientos de este blog. Hay un montón de alternativas que han ayudado a los demás. Puedes escoger los que más te gusten y crear un plan de acción. En todo caso, yo te recomendaría pedir el curso “larga distancia” de http://www.stclinic.com. Te ayudará, garantizado. Y si puedes venir a Corea, tal vez podamos encontrarnos y apoyarnos el uno al otro.

  10. Thank you for the detailed information on CD. I have had symptoms for several years before finally going to a Neurologist and was diagnosed a few years ago.
    I can’t seem to find any support groups where I live so it was interesting to read through the comprehensive info you have collated. I am 50 and have had symptoms for approximately 9 years. Although I always thought this was a faulty gene which sprung into action when I had been through a few years of extreme stress – my Neurologist said no, stress does not cause this. There are a lot of conflicting answers when I look into the cause of CD. Has anyone tried a gluten free diet to see if this eases symptoms at all?

    • Thanks for your comments!

      It seems your neurologist doesn’t know what he is talking about, since CD is very often triggered during or just after periods of intense stress. See the sections Phenomena and Perspectives of this blog.

      Please share your “conflicting answers”! (Personally, I don’t see much conflict anymore in CD.)

      A gluten-free diet will probably help. But you’d better start to eat much fruits and vegetables in order to alkalize yourself. Little meat, no white bread, no white pasta, no sugar, no alcohol, no smoking.

      Please keep in touch!

      • My mother has been suffering for years with this and I have started recently to have symptoms. Her doctor told her it was probably due to an accident or trauma of some kind. That’s what they told her for years, until I showed her an article about researchers locating the gene. How could a Neurologist not know that? I’ve been educating myself on the subject before I make any decisions about medications, etc. I did find an interesting article about a Chiropractic Neurologist and the strides that are being made using this type of therapy. There are also some homeopathic medicines that are out there-has anyone used those?

        • Sorry for the late reply and welcome to this blog! And sorry to hear that you are also starting to have symptoms. But I hope you will – eventually – start to see these symptoms as a friend, showing you deeper insights. Many visitors of this blog have reached that point.

          What you are saying about a gene that is common in people with primary late-onset focal dystonia (what spasmodic torticollis usually is), is probably correct. But having a gene, does not mean that you will automatically get the problem. You might be more susceptible to the problem, but that is all. The gene is not the cause. Consider a family with brittle bones, due to some sort of genetic commonality. They will be susceptible to breaking their bones more easily than others. But the cause is not the gene, it’s the fall down the stairs (or even something else, at a deeper level, causing the person to feel badly about himself/herself and getting out of balance, also literally, leading to the fall). Apart from that, I tend not to take genetics too seriously. It has been shown that we can change our genes by ourselves.

          All the information that I have found, and all the confirmations that I have got from people with CD, are pointing to trauma as the cause. Mostly childhood trauma, subsequently accumulating during the rest of the lifetime, until the body gets so tense that new trauma will be more and more physical. Then, after decades of accumulating trauma, typically after 40, CD will develop. Through this blog, we have found that (so far all!) people with CD, are MBTI type INTJ. This type is introverted, intuitive, thinking and judging. When having to cope with the consequences of trauma, this personality type tends to apply, what I call, rigid-control mode, always forcing and controlling every activity, in order not to have to feel the pain.

          So there is a way out of this. Deal with the trauma, and allow flow to come back into your life. Medications might give some support, if used temporarily. Personally, I haven’t used any medication and I am not intending to start, as I fundamentally don’t believe in suppressing symptoms. The symptoms are trying to tell us something. Let’s not kill the messenger. I am getting a deeper understanding as to why I got ill. Furthermore, I am just taking good care of myself, doing regular exercise, giving myself what I need in life, and getting better all the time.

          Did you read the sections Phenomena and Perspectives of this blog? I would appreciate it if you did. And after reading, are you willing to share your life story? And please also share any articles and effective treatments that you found!

          Hoping to hear back from you soon! Take care.

  11. wow…this blog describes me pretty accurately…I’m not sure if I’m INTJ but I am introverted. I’m newly diagnosed so taking all of this in consideration..I have had trauma in my childhood and young adult hood..how do you release it? I don’t want to relive it…it would retraumatize me…

    • On this Phenomena page, there is a clickable section called “Profile INTJ”, under “Personality Features”. Click on it and you will see a detailed description of INTJ. Also, you can take any of the many free online MBTI tests to establish if you are INTJ.

  12. I am 29 and am from Pakistan, currently living in Dubai. I found out that I have torticollis yesterday, I had been noticing the symptoms for the past five years. always used to discuss this with my mother and she used to tell me, ‘you probably picked up a habit of keeping your head tilted a little to the left when you were young and that has caused you to be in this constant state. Needless to say, between my studies and lack of exposure to medical sciences, I neglected the signs. And now that i’m 29 and have started earning, the tilt is so visible that some people suddenly mention, hey what happened to your neck, and those who don’t mention it, start to flex their own necks, turning them sideways and round, in order to give a signal. It is very embarrassing. I have been consulting an osteopath for the last week, who some how I felt connected with. and after having A-P lateral x-rays of my whole spine including my head frame diagnosed me with Torticoliss, I do get utterly stressed and can’t handle pressure from other people. and sometimes just explode on them. I’ve been an avid runner, and I’ve been exercising at the gym but haven’t at all gained any muscle strength, if I do. it just goes away if I stop exercising even for two days. and for the past week, I’ve lost all will to exercise. I’ve been depressed and I was doing much better before the diagnoses. (regular exercise wise) I would feel my neck tensing and I would do some body movements( yoga isolations to release some tension) and that would work, I’ve read your blog thoroughly, and it is on a very positive note, and maybe i’m just reacting to the recent diagnose and feeling very helpless, because back home in Pakistan, we don’t have support groups or recovery clinics which focus on habits such as sleeping, sitting, standing, moving. Maybe I have to do it all by myself. and maybe my journey has just started and I have to give all my dedication to this. but then again, my family expects me to be a bread earning man. that I must look at life practically, that making money is more important in life than a small deformity or dislocation of my neck. my vigilance towards this journey is already ceasing to exist at the start. and the flame is much rapidly fading. I hope you understand ( because I nearly don’t understand my emotions, and what I want in life) thank you for this blog. God bless you.

    • Hi Usman,

      Welcome to this blog and thank you for your contribution! Right, it’s not such a nice thing to be diagnosed with torticollis… But you can heal yourself, no problem!

      First let me ask you something, as it seems that you don’t have any spasms/jerks: do you have spasmodic torticollis (cervical dystonia), or ‘just regular’ torticollis?

      Assuming that you do have spasmodic torticollis, did you also read the page Perspectives? If yes, do you recognize yourself?

      It’s striking that you say that you don’t understand your emotions and don’t know what you want in life. That’s exactly right! When you are traumatized, and suffer from dissociation, you live on sheer willpower, working around your emotions, until you get spasmodic torticollis.

      So I can already tell you that, if you want to heal, you should find a way to have a lot of time off for yourself! Don’t work hard, as that will make things only worse. You need to discharge the trauma, the stuck survival energy from your body. You need to reconnect with your body. Then you will be able to feel your emotions again, identify your passions, and know what you want in life. And then, automatically, the spasmodic torticollis will be gone as well.

      CD is part of you, it’s a messenger. Listen to its message and appreciate it. It says: “Stop living in rigid-control mode, reconnect with your body, love yourself, go with the flow of life!” That should be your journey. I hope you can agree with that and find a way to start the journey.

      Looking forward to hearing from you again!

      CCD

      • hello again, i don’t always get spasms or twitching, but i would get them, if i ever drink wine( which is very rare.) or if i’m extremely tired. I had read both perspectives and phenomenon, and couldn’t agree more on the ‘freeze’ effect. I probably have been a victim of my anger suppressed and now its beginning to surface through torticoliss. I realize that i should be in a nurturing environment where i can release the trauma that i have experienced through out my life. it was absolutely important for me to be in dubai at this point in life as i’ve only been able to get to the root of the tilted neck here. maybe in pakistan, i would have neglected it more. Ive been trying to keep a rigid control of my life, which i have to let go off. There is only so much I can handle.
        I feel that everyone is on this journey trying to learn precisely that, how to let go of past trauma, beliefs and conditioning of the mind.
        there is of course a flip side to that coin, which is the society, it expects too much of me, to perform, to be a trophy son, to be better than my cousins, to provide, settle….etc etc. the problem is not that i won’t exercise or i won’t consider my health over wealth, the problem with me is how to break away from the web that has got me shackled in an office space, taking orders from a control freak brother, who i can only live in the shadow of ( we are running a family business here which he has been handling for the past ten years, and he is a role model for my parents that i should shadow.) I guess you can’t help me here, till i’m ready to make a decision to live a stress free life, i’m not ready.
        I am not able to question their belief system, if i ever do, i’m told that i will be thrown out of the family, So… that is my dilemma. I have tried, and already my brother has told me that i should keep my mouth shut infront of him and do what he tells me to do without any questions. He is totally an abuser and if i had any self respect, i would totally not be dependent on him. Ok..!? ahh yeah. and if i had any courage, i would leave.

        • Hi Usman,

          Thanks a lot for your open-hearted comments. Your self knowledge is very good. And you know exactly what you should do now: let go of rigid control, get out of the suffocating situation you are in now, into a nurturing environment. You just think or believe you don’t have the courage for it.

          I think you do have the courage for it. You have already had the courage to bring yourself in a situation to be able to get to the root of your neck problem. Also, you have already had the courage to honestly analyse and acknowledge the root cause(s) of your problem. As far as I understand, you did that within 1 or 2 days. That is amazing! Most people with CD have a much harder time to face the message of their physical symptoms. Many are inclined to believe that they were unlucky, that it just happened to them, and leave it at that.

          So I say: congratulations! I am sure you will take this much further.

          For now I would like to share two things with you, which I have come to know as fundamental to human nature.

          The first is that your thoughts and beliefs are crucial for what you experience in/as your reality. If you believe you don’t have the courage to do what you should do, and if you firmly stick with this belief, you will create a lasting lack of courage. (And, ironically, to do that also takes a lot of courage!) If, on the other hand, you are willing to let go of your current belief system, and to replace it with another one, which is more based on actual facts (“I am a very courageous person”), you will be amazed at your enormous courage and you will deploy it.

          Another thing is that it never works to try to comply with requirements of the world around you. By doing so, you are not being yourself. This makes you unhappy, as well as it doesn’t positively contribute to the world around you. (And yes, we with CD are specifically inclined to do this!) But only after we have made sure that we are happy ourselves, we can also make a positive contribution to the world around us. Love yourself first, then you can love others. I understand that this is an exceptionally hard nut to crack for you, coming from a society with high levels of social and familial control. But you would really help yourself if you stop complying with your family’s requirements and start taking real care of yourself. This doesn’t necessarily mean that you have to break with your environment, but it might. You are the better judge of that.

          Looking forward to hearing from you again.

          CCD

  13. Hello there,
    I am 54 yrs old and recently diagnosed with dystonia – actually I diagnosed myself after trawling the internet for my symptoms! Doctors no use whatsoever as they only want to give you muscle relaxants and Neurologists just wants to inject botox. I am of the same mind as you, I believe that it is within ourselves to put an end to CD, I do not take any medications to mask the symptoms as I need to understand what is helping and what is not. I believe in the power of neuroplasticity also. I am currently undertaking course of Bowen therapy and it greatly relieves some pain but also seems to allow me to release my emotions too (which is probably something that I never do normally). I am definitely the type of person to not show emotions, anger, stand up for myself or have my voice heard and I am slowly realising that this is not a healthy way to be.
    So, here starts the rest of my life. I have listened to my body ‘shouting’ at me and am going to try to be more relaxed, self aware and empowered to be me (and put myself first for a change).
    I am also interested in Somatics course of exercise, currently studying a book written by Thomas Hanna on this. Looks very interesting and puts me in control of my situation.
    Your website is great, very interesting reading and I hope that more people find your pages. I will stay in touch and let you all know how things go – particularly if I find something that helps.

    • Hi Hilary and welcome to the site (even though I understand you would rather not have to be here)

      I’m interested to learn more about these Bowen sessions :-) I have someone not to far away from me who does it but I’m a bit concerned as I know that certain areas shouldn’t be massaged on people with CD/ST – does the person who does the practice on you know what these areas are or is it ok with this treatment? Also how much does it cost as I can’t seem to find any prices on the site I looked at?

      Thank you and I hope it works for you! :) x

      • Michelle,
        I’m sure that it is okay to massage all of our muscles, why do you think it is not?

        the strc states not to have our scm’s massage, but i am even skeptical of this. I have massaged my own scm’s and have felt no negative effect, but then again we are all different.
        How are you doing lately?

        • Hi :)

          I’m doing better thanks Hun but each day is still a challenge especially as my little girl is 9 months old now so is starting to crawl :-/ I’m having Botox injections that are helping but I don’t want to have Botox for long so am also having release treatment (not sure the correct name for the treatment she does),hypnotherapy, doing daily exercises and massage, having natural healing and am emailing a lady who is a Bowen Therapist who has helped a lady before with CD…..

          Life is hard but I have faith that one day I will find the correct path I need to heal :)

          I think it’s so hard to know what path to take, would be so much easier if you knew 100% what you was doing was the correct thing then it would give you the confidence and strength to carry on and not give up!

          How are you Hun?x

          • Hi Michelle,
            Wow! you are doing so many things. I don’t think you are in any danger of giving up ;) but I know what you mean, we have so many options it’s hard to know what to pick.
            Since we know from our good friends here, that the feldenkrais method and the Cross clinic work, have you thought of these methods?
            In any event you are already on the right path, you are healing a little everyday even though it isn’t evident yet. You will see it soon, and life will get much easier! really!

            For myself I am improving a little all the time, It is nice to be straight and looking normal, i don’t even mind being in pictures again!

            At the moment I am focusing on healing the emotional body with “The Presence Process”. I’ve been Processing for over a week, and feel it is a very effective method. I can already feel energetic shifts taking place. I feel really committed to this and will continue until my body returns to complete health!!
            The core of the method is conscious connected breathing twice a day for 15 min. I was worried that I wouldn’t be able to do it, but it’s real easy.
            The breathing alone is very good for the body. I feel physically stronger,
            it’s a good way to release stored toxins and raises the bloods alkaline level, which is good for us!

            Sorry I have not heard of the Bowen therapy, let us know if you decide to do this. Hypnotherapy sounds interesting, how does this feel for you?
            Give your baby a hug for me, take care!

          • Hi Michelle, I think we’re here at the same time!
            You need your own quiet space to do the breathing, no watching tv at the same time. It is only 15 min. twice a day, so it’s easy to find the time, but I know for a mom this would be more challenging.

            Sorry I cannot help you with recommendations on pain, as I have been lucky, and never had any pain, pulling has been my only symptom.
            Take care and keep that positive attitude!

          • Hi Sunflowersprout :)

            Sorry tried a couple of times to reply to you but something kept popping up (including problems with my Internet)

            I did look into the cross training but they don’t do long distance programmes so I’m sticking with the exercises from the ST clinic :)

            The breathing exercises you do (I had a quick search and a quick read about the book) can you do them while watching TV (or being in a room with a baby) or do you need quiet time? Good to hear they are helping you, think the key is to find what helps then stuck to it….give it your all until you reach your target :)

            Do you suffer from pain as well as pulling? If so what things do you find helps the pain?x

          • Yes even though I really shouldn’t be on here as its 12.30am and I like to wake up before baby does so I can do some exercises and positive thinking! :-/

            No 15 minutes twice a day wouldn’t be a problem for quiet time but as I’m already doing other stuff that also needs quiet time it might be a bit to much to hope for :) but I might still buy the book and see :) x

      • Hi Michelle,

        Massage of the SCM is often discouraged. But the thing is that you yourself are the only one who can know/feel what is good for you personally. Once you regain that capacity, your CD will disappear. So it is no use to ask others; just ask yourself. The answer is there, I promise you.

        Good luck.

        CCD

    • Hi Hilary,

      Sorry for the late reply! Right, doctors are no use whatsoever, since they don’t (want to) understand the root cause of the problem.

      Very good that you see your symptoms as an opportunity to learn what is triggering them. Apart from stress (due to external circumstances, bad food, or other physical pressure on the body), which aggravates the conequences due to trauma (freeze responsse), I notice that I have more symptoms: when I am unloving toward myself, when I apply rigid control to live my life, when I allow/create a disconnect between body and mind. Since I have been working on those aspects quite a lot, my neck is doing better and better. I still feel CD, but people cannot see anything strange about my neck anymore.

      Bowen therapy sounds very interesting. Do keep us updated!

      Take care!

      CCD

      • Hello again,
        after living with ‘cervical dystonia’ for just under one year and after many months of research, I have chosen to approsch this illness not as a neurological problem but a mechanical one. No botox for me since the diagnosis in June 2012, when I only accepted this treatment because I was in shock to have my self diagnosis confirmed. I have spent the past 9 months in absolute agony and have tried several treatments ranging from Bowen therapy, somatics and osteo work. All to no avail. Having scoured the internet, I came across the work of Dr Brendan Stack in USA. Found his treatment fascinating, videos of his work on you tube. I contacted over 100 orthodontist in UK and by sheer luck was put in touch with orthodontist in Sounthampton who has spent the past 20nyears working with Stack. After assessments, I am on the treatment path. The evidence these guys habe put together is that muscle spasms are the result of trauma to the head, neck and jaw areas. I broke my arm when 10 yrs old and MRIs show that at that time (together with other falls), I dislocated my jaw. Now with the passing of time ((I am now 54 yrs old) and with muscles losing their tautness, my jaw displacement has impacted on major muscles and nerves. This has resulted in chronic constant neck pain and head turnig, to the point where I can no lo ger function. I have had 2 assessments and a treatment plan has been formulated and I am now wearing my first orthotic on my bottom teeth. When I arrived at the orthodontist, after 1 1/2 hr trip, I was in terrible pain and tears. Within 10 mins of the orthotic in my moith, my pain stopped and I am able to look forwards for the first time in 9 months! I have to go back for adjustments to my orthotic over the next 4 to 6 months per treatment plan, then will need to waer braces to realign my teeth. If I then dont want to wear braces long term, I will need to choose surgery to permanently secure my jaw in the correct position.
        It is early days as I am only 1 week into wearing my orthotic but life is good for the first time in 9 months.
        I will update my progress for your information.
        as this treatment is not available currently on the NHS, I have to pay myself. Without including the cost of surgery, this treatment over the next year will cost me about £6000. But for me this is a cost worth taking considering the undeniable difference it is making to my life.i never bought into the neurologists diagnosis as he himself could not explain the exact cause. For me, I do not believe that dystonia exists, what exists is a misfiring of messages to muscles caused by some mechanical defect. My orthodontist is not treating my ‘dystonia’, he is treatment the problems that my TMJ dislocation is causing, and so far with great success.

        • Hi Hilary,

          Thanks for the update. Did you read my previous comment to you? Of course I respect your choice to treat the illness as a purely mechanical one. But it isn’t. The symptoms appear as mechanical problems, but the root cause is something else. Be careful. You may get some relief from the splints, but you won’t heal yourself with them. Only if you use the TMJ alignment as a supporting method, next to true trauma release, will you be able to heal yourself. You have suffered several traumatic falls when you were young – and usually such physical trauma follows previous psychological trauma. Anyway, whatever shape or form the trauma, it remains trauma: frozen survival energy, stuck in the body. That is what you need to work on first and foremost.

          Good luck.

          CCD

        • My experience of CD and reserach support 100% the bio-mechanical biew of the cause of CD.
          Please see my comment herebelow.
          The orthotic that you are using are not sufficient as they are still based on the paradigm that the jaw should close with only vertical forces.
          The key in developping CD is that the plane of occlusion (the direction of the teeth in yhe mandible and maxila) has ROTATION FORCES AND TORQUE. When the axis of the plane of occlusion is not aligned with the axis of the spine, the result is a twisting movement of the spinal cord and CD.
          The “Bennet Movement” of the condyles in the glonoyd fosa is a sideway shift ofnthe condyles that twists and aligns the mandible and the maxila with the cervical spine.
          I can assure you (ask if you do not bekive it) that 99.9% of dentists willbtell you that a good occlusion has only vertical forces. It is whatbthey are thought at dentistru school around the world. Every time they wirk on tour mouth, yhey will always use the drill to get rid of contacts of the teeth that produce sideway or rotational forces.
          That vertical ocxlusion model and phylosophy is called “mutually protected occlusion with tricuspidation” andnit only works with reasonably symmetric skulls ans skeletal structures.
          Modern dentistry, by definition, calls “bruxism” any mouth that does not apply to this simplistic and wrong model of the stomatognatic system.
          People like tou and I, have skeletal assimestries and micro traumas to the upper cervical spine and end up dystonic.

  14. interesting about the sensory tricks.
    one of my symptoms recently is my left arm flails uncontrollaby when i do tai chi. i have found that if i wrap my other hand around my left elbow, it will not flail anymore. i am not holding it, just touching it lightly. i believe that this way some new circuit is created. a completion a of a positive, negative cycle, a place for the energy to flow freely, giving it direction and focus.
    so it is a question of meridians.
    it is also similar to the way there are trigger points – have you noticed that when you press certain points, then symptoms get worse. has anyone noticed this?
    i am studying shiatsu, and very often while giving a treatment, there will be a reaction of sudden muscle twitches or shaking, this is in people without cd, everyone!!!. we all have a few blockages somewhere. in shiatsu, we see this as a good thing, a way for the blockage to be released. hey ho to muscle twitching:)

    michelle – you asked about the pain-
    i experience a lot of pain in everyday life and sometimes more intensely and specifically, especially my back, but also in other parts too.
    i have a few ways of dealing with it, but i am sure there are many more ways to explore too.
    so i try relax, lie down if i can, and just let the pain be, accept it, allow it to happen, and let it flow, follow it inside my body, see where its going, let it be released, while trying to stay relaxed, not tensing up. i try to analyse the pain, give it a taste, a colour, quality, intensity. this way my mind gets absorbed and interested in the pain instead of carried away by feeling sorry for itself. i also often try to give the place that hurts love and warmth. i will put a hot water bottle over the area, breathe into the area, apply moxibustion (a chinese medicine method), or gently touch, press or massage the area that hurts.
    i also make sure that i am not adding additional stress to weak areas by having bad posture . although when i try to straighten my back, my symptoms always get immediately worse. so i try to work on that when i have some time to myself.

    i also often get high fevers – which i believe is my body’s way of dealing with various toxins that have collected inside of me. they are stuck in pockets so that i don’t feel it at all, but when they get released its extremely painful,and my body has to fight it. i just rest and let it pass through my body, including some of the emotions that go with it.

    i just started reading about the presence process. it sounds really interesting – i need to read more.
    i like what mr brown says about when you go into the emotional body there needs to be a consistency and responsibility. i am not sure exactly what this means or how to achieve this. but i am pretty sure that with me it is not always responsible. my emotions are so strong sometimes, and i let them out onto the world, blaming them for everything i feel. angry and hurt. in one way, all i want is to be able to express myself freely, but in another way, i see this is not always good. its way too much for people to handle. so then i keep it to myself, which just causes cd. my hatred and mistrust and blaming has been so strong that even my therapists have taken offence and not been able to deal with it. sometimes i wish that i could shout at someone and they would just stand there stable, strong and centered , and look back at me with love, unconditional love. just let it be, let it happen. just listen and love. i need to learn how to do this with myself too. and for others. not to take other peoples outbursts personally, just to love them while still not letting them hurt you

    • Hi Mary,

      Yes, I used to lose control of my right hand and arm in certain positions. Now that my condition has dramatically improved, I do not experience that anymore. As everything in the body is connected (or should be) once disturbance (like CD) can trigger another one. It makes sense.

      Call it meridians, or anything else you like. I think it is more interesting to look at the symbolics. I think the sensory trick shows us that we can help ourselves, that resolution is literally within reach. I also think that it shows us that once we reconnect with our bodies, usually by touching our head (mind) with our hand (body), the problem is gone. Our traumas have made us disconnect from the body. Reconnecting is healing.

      Great to hear how you deal with pain. That is like Somatic Experiencing! And very good not to add additional stress to the body (physically through bad posture or bad food, or emotionally, or mentally, or…), as it will of course aggravate the symptoms – being the message that we have put too much stress on ourselves.

      Wow, your trouble really does surface. It means that you are a courageous person, wanting to resolve, wanting to live. Again, be careful not to project it on your external world (other people, external circumstances). The external world as you experience it, merely is a reflection of what goes on inside you. Yes, let the anger and hatred out, shout and scream, but do it when you are alone, with harm to no one. And after discharge, carry on with your healing (until the next eruption ;-) ) and love yourself unconditionally.

      CCD

    • Ah, yes, interesting story. Lee-Ann recently brought up this story of Jill Bolte Taylor. (You can search on the blog for the related comments.)

  15. I am so grateful for your website; frankly its refreshing! I am convinced by SD started due to a stress reaction from dealing with my difficult mother…a result of “freezing” every time I would see her (she has now passed away). I get so fed up going to doctors who are so quick to prescribe botox or muscle relaxants – so frustrating. Thank you for putting the time and effort into this site!

  16. Hi. I’m 40 years old from New Zealand and have had Cervical Dystonia for the past three years. As a result of the dystonia (I’m guessing) I’ve also developed very loud permanent tinnitus. The tinnitus is so bad it’s almost worse than the CD. Can anyone else relate?

    • Hello Matt,

      Yes, I also have the (occasionally loud) ringing in my ears. But it doesn’t bother me anymore: I tend to consider it as symbolic – just like I consider CD to be symbolic. One symbolic explanation for the ringing is that it tells us that there is a message from our (higher) self that we are not (yet) able to hear, but that our ears are very sensitive and in the process of getting ready to receive it. To me this makes a lot of sense. Since I heard this explanation, the symptom appears to be fading away. And I know for a fact that other people who got this understanding, gradually lost the ringing and simultaneously got and integrated the message.

      I hope this also makes sense to you! If not, did you read the pages Phenomena and Perspectives of this blog?

      Take care.

      CCD

      • Thanks so much for the reply. Yep, it definitely makes sense, as does everything else on your site, which I have to say is the best thing I’ve come across since developing this bizarre condition. I’ve certainly read through Phenomena and Perspectives, along with the rest, Treatments etc, and can’t believe how much sense it all makes. I do take botox, but I’ve never been able to shake the underlying feeling that I’ve had from the start: That I created this disorder, and I can therefore get rid of it. Thanks so much for this site, and for what you are trying to achieve.

        • Happy to hear that. I should also add a section with more specific details about how to heal ourselves. You can find this information on the blog, but it is scattered.
          One important thing for you to realize at this stage is that wanting to get rid of the condition will be very counterproductive. Embrace CD as a friend, a messenger, created by yourself to help yourself change your way of life. Understand the message, and integrate it into your life, so that at some point CD can stop to send you the message…

          CCD

  17. Pingback: Een Synchronische Tijd | Marthijn's blog over een zwaar hoofd

  18. You have composed an interesting collection of insights on dystonia. I too have investigated to find an answer on my illness. Don’t we all want to find an answer? I know I have had friends cure themselves of illness and wonder what is wrong with me? So I have searched for answers. It has been an interesting journey. I truly believe that disease is more than just the physical, it is the mental and emotional issues as well. We are really 3 parts to the whole. I use to beat myself up on what negative thought, or emotional issues haven’t I resolved. It gets tiring. But I know that wasn’t healthy but I still look. Maybe it is the control part of me that needs to know the answer. That answer might never come but I know it is where I am in the moment.
    I read something years ago in a book I have about cervical dystonia. It said what are you turning away from? Maybe you want to go in another direction in your life (which your head is constantly doing) but you haven’t the courage, the finances or drive to do so. Another interesting fact if you are familiar with the chakras, the throat chakra is related to the area where the disease affects. So if we have a tendency to avoid conflict, or try to be the peace makers in life what are we not speaking about? Disease is literally something you don’t have ease with.
    So I thank you for your insight and providing this forum to speak our truth. We are all different and maybe this is part of the plan to experience this? Why do some go into remission and others don’t? Is it because they are searching for the answer or are they just supposed to experience that?
    So I bless you all on your journey with this illness and wish you all well. This is only my opinion what I expressed and maybe it resonates with you and maybe not.

    I just came across this website and have much more to explore here. I am sure I will be connecting again. Blessings!

  19. This site is beautiful, it rings so true to my quest on figuring out the message behind the illness, I posted something here yesterday but it didn’t seem to keep. Do tell how the posts get answered or kept. Thanks!

  20. I have had oromandibular dystonia for almost 14 years and have tried most of the therapies you list on this website. The only thing that really is effective for me, is the sleep drug Ambien. Ambien is an agonist for the neurotransmitter GABA. GABA is an inhibitory neurotransmitter used (among other things) to control movement. Many things can effect neurotransmitters in our brains, that is why many alternative therapies can seem to provide some relief. However, I believe that the real issue, the core of the problem is to be found in the imbalance of certain neurotransmitters in the brain, GABA being the most obvious – and that is why Ambien is so damned effective. Chiro/Neurologists can devise exercises to manipulate the neurotransmitters and produce changes in the brain through plasticity. I think all of us in the dystonia community ought to be pushing for research into how to bring these brain chemicals into harmony so that we can gain control of, or even cure dystonia

  21. Hoi CCD, Nog bedankt voor je reactie inzake de mogelijke relatie tussen een jeugdtrauma en het ontstaan van CD. Ik heb de info op je website over karaktertypologie etc. gelezen. Erg interessant. In een aantal dingen herken ik mezelf wel, in een groot aantal ook weer niet. Zelf denk ik meer in de richting van een virusinfectie. Er zijn patiënten die goed schijnen te reageren op het middel Valtrex of Ganoderma Lucidum. Altijd het proberen waard. Verder lees ik dat een aantal lotgenoten goede resultaten behalen met het STRC programma. In dit kader trouwens nog een positief nieuwtje: in de eerste helft van 2015 wordt er waarschijnlijk een tweede recovery clinic geopend, in Slowakije, aldus Abigail.

    • Hoi EML,

      Dank voor je reactie. Iedereen mag uiteraard denken wat hij of zij wil. Maar ik heb geen enkel geloof (meer) in een extern geneesmiddel of in een “mechanische” oorzaak zoals een virusinfectie. Dat zijn slechts randsymptomen die relatief veel mensen met CD hebben. Net zo goed als CD zijn dat soort symptomen gewoon gevolgen en geen oorzaken. In het herstelproces is geloof een belangrijke factor. Vandaar dat mensen die sterk geloven in een bepaald geneesmiddel, er ook baat bij zullen hebben. Dat komt echter niet door het middel, maar door het placebo-effect, dat sowieso vele malen sterker is dan “echte” geneesmiddelen. In dit kader kan ik je aanbevelen het volgende stukje nog te lezen:
      http://curecervicaldystonia.com/remission-revisited-2/
      Als je meer leest op deze blog, zul je erachter komen dat mensen die initieel niet geloofden in trauma en bezig waren om allerlei middeltjes te proberen, daar op een gegeven moment van terug zijn gekomen. Inmiddels is ook een aantal van die mensen volledig hersteld van CD, maar wel via de route van traumaverwerking.
      Mooi dat er nog een kliniek in Slowakije komt. Echter, het is ook heel goed te doen (en een stuk goedkoper) om een thuiscursus te kopen. Bovendien luistert het allemaal niet zo nauw. Nog goedkoper: je kunt ook je eigen rekoefeningen ontwikkelen en er verder een beetje gezond bij eten en drinken. Heeft hetzelfde effect. Het ondersteunt in het genezingsproces, omdat je lichamelijk meer balans aanbrengt. Maar echte genezing komt pas na oplossen van het jeugdtrauma.

      Succes & grt,
      CCD

      • Beste CCD, Bedankt voor de link naar de info. Ik heb het gelezen en pieker me (al jaren trouwens) suf waar bij mij de sleutel tot verbetering/genezing ligt. Is het inderdaad een (jeugd) trauma en hoe pak ik dit aan? Ik lees een aantal keer op deze website dat het antwoord in jezelf zit maar ik zou niet weten wat het antwoord is. Op welke manier kan ik hier achter komen? Is bijvoorbeeld regressietherapie een goede manier om helderheid te krijgen? Heeft het verder zin om meridiaanpunten aan te pakken om mogelijke energieblokkades vrij te maken? Op welke manier kun je dit het beste doen? Accupunctuur heeft bij mij niet geholpen. Wie heeft er goede tips?

        • Hoi EML,

          Het antwoord ligt gewoon in je lichaam. Daar hoef je je hoofd niet over te breken. (Wat alle mensen met CD typisch wel altijd doen.) Het is de kunst om het lichaam dus te laten spreken en ontladen. Zoek een lichaamsgerichte traunatherapie, zoals Somatic Experiencing of Brainspotting. Of doe het Presence Process (boek van Michael Brown). En er zijn nog wel meer methoden om het trauma los te laten, stukje bij beetje. En vaak is het helemaal niet nodig om je het trauma letterlijk te herinneren. Regressietherapie lijkt me niet de weg en acupunctuur al helemaal niet.

          Als je het lichaam laat spreken, ga je er weer contact mee maken. En dat is alles wat nodig is om te helen. Mensen met CD lijden aan dissociatie en leven in hun hoofd, met bovenmatige drang tot rationele controle van hun leven. Dat zijn symptomen, manieren om met het trauma om te gaan en ermee te leven. Maar na een heel leven lang in dat patroon, knapt er iets van binnen en komt CD. CD is je vriend, geeft je het signaal dat je letterlijk bent scheefgegroeid en dat alle controledrang averechts is gaan werken.

          Laat maar weten als je meer vragen hebt.

          Succes,
          CCD

          • Hi CCD, Allereerst heel erg fijn dat je steeds de moeite neemt om een goed onderbouwd antwoord te sturen. Je hebt me weer hoop en kracht gegeven om door te zetten en ik moet erop vertrouwen dat ik eruit ga komen. Dit vertrouwen was ik even helemaal kwijt. Ik vind het nog steeds moeilijk om TS als mijn ‘vriend’ te zien en vecht er teveel tegen. Dat is wellicht ook de oorzaak van 2 hevige terugvallen in 11 jaar tijd. Keer op keer heb ik moeten knokken om er weer bovenop te komen en soms is mijn energie op. Diep in mijn hart denk ik dat het leven dat ik leid mij niet gelukkig maakt en dat ik een andere weg in moet slaan. Hier wil ik graag, met de juiste begeleiding, aan gaan werken. Bedankt voor je therapie tips. Je hebt me enorm geholpen met je advies. Ik hou je op de hoogte van de ontwikkelingen. Fijne feestdagen en hartelijke groetjes EML

          • Hoi EML,

            Fijn dat je iets met mijn inbreng kunt! Het is heel begrijpelijk dat je tegen je TS vecht. We leven nu eenmaal in een maatschappij waarin iedereen vecht tegen kanker en tegen ALS. Treurig. Een ziekte is een deel van jezelf. Daar moet je niet tegen vechten. Het is een boodschapper. Een boodschapper ga je toch niet proberen de nek om te draaien (haha)? En dat is toch wat er in dit deel van de wereld gebeurt: symptoombestrijding, onderdrukking. Dat betekent de boodschapper afschieten, zodat die steeds sterker en steeds op een andere manier van zich moet laten horen. En het is zo simpel: gewoon de oorzaak wegnemen i.p.v. de consequenties ervan bestrijden. Enfin, er komt wellicht een tijd dat zelfs onze medische wereld dit gaat inzien.

            In ieder geval is het zeer positief dat jij alvast hebt besloten een andere, heilzame weg in te slaan. Dat is m.i. het belangrijkste van het genezingsproces. De rest komt vanzelf (ahum). Weet in ieder geval dat ik nu na 3 jaar eigenlijk weer alles kan doen wat ik wil. Ik voel nog wel eens wat stijfheid of spanning, maar het is niet te vergelijken met wat het in het begin was toen ik ineens helemaal niets meer kon. Er gaan soms dagen voorbij dat ik echt helemaal nergens last van heb. En het zal steeds beter worden, naarmate ik nog meer kan loslaten en steeds onvoorwaardelijker van mezelf kan houden.

            Ik wens je een heilzaam en liefdevol 2015!

            Grt,
            CCD

  22. Hi CCD,
    Ik heb inmiddels wat gelezen over de methode Brainspotting en dit spreekt mij bijzonder aan. Denk dat ik daar best ver mee kan komen en heb info opgevraagd bij een behandelaar. Ik ga vanaf nu proberen minder tegen de TS te vechten. Zal niet makkelijk zijn want ik sta al 11 jaar in de vechtmodus. Maar de knop moet om wil ik eruit gaan komen. Fijn om te lezen dat het zo goed met je gaat en dat je weer alles kunt doen wat je wilt. Ik wens je alle goeds toe voor het komende jaar. Deze website is een geschenk voor veel lotgenoten en ik hoop dat je er mee door blijft gaan.

    Groetjes EML

  23. CCD, ik vergat nog iets te vragen. Doe je nog steeds oefeningen voor je nek icm fysiotherapie? Krijg je botox toegediend of doe je het zonder? Mijn streven is om van die rommel af te komen. Sinds ik een overdosis heb gehad weet ik wat het met je lichaam kan doen, ben hier erg van geschrokken.

    • Hoi EML,

      Dank voor je positieve commentaren en fijn dat je enthousiast bent geworden voor brainspotting. Ik doe inderdaad regelmatig rekoefeningen en ga af en toe naar de fysiotherapeut voor een stevige massage van nek en rug. Botox heb ik nooit gekregen, ben ook nooit meer bij de neuroloog geweest. Treurig om te zien dat een neuroloog volstrekt niet is geïnteresseerd is in de achterliggende oorzaak van deze symptomen, maar wel graag wil injecteren met botox. Mij niet gezien. Is zo ongeveer het zwaarste gif dat er bestaat en kan allerlei gevaren met zich meebrengen (mijn fysiotherapeut kent iemand met CD waarvan de hartspier voor 80% blijkt te zijn opgelost, hetgeen wel aan botox te wijten moet zijn).

      Sterkte!

      CCD

  24. I have this and I am an infp. I have repressed trauma memory of being molested that only comes to me in dreams. I believe this is my psyche’s way of protecting me. work with a counselor, chiropractor and massage therapist are helping and the love and support of friends is invaluable.

    • Hi Jill,

      Thanks for your comment. Well, I guess being introverted is very key to developing CD, even though so far, almost all people have specifically tested as INTJ. In your case the trauma is clear, so you know what to work on. When you read more on this blog, you will see that most people benefit from body-oriented trauma therapy. Most traditional counseling isn’t suitable at all for trauma resolution. It only reinforces the negative thoughts and beliefs… So I recommend you to investigate Somatic Experiencing, Brain Spotting, The Presence Process, and such.

      Good luck and let me know if you want to discuss further.

      CCD

  25. Great work.
    According to my experience and research, many of the conditions that tou desceibe are consequences of the desease.

    Let me explain:
    I have developed secondary cervical dystonia as a result of a negligent dental treatment, from one day to the next. In used to be a triathlon runner and the next day my spine structure was twistwd and collapsed.

    Fortunately, I have some invisalign retainers that were done for my teeth at the end of and orthodontic treatment a few years before and reproduce the.correct shape of my teeth and their articulating movement during occlusion.

    I also have a solid 3D model of how my teeth occluded just before the negligent treatment.

    The point: when I sleep with the retainers in my mouth I wake up without any dystonia. Without the retainers, my neck and spine twist and colapse.

    I have studied thoroughly the difference between the two ways my mouth occludes and the conclusion are very, extremely intetrsting.

    With the retainers the teeth accomodate and occlude with ROTATIONAL forces and TORQUE.

    The dentist who treated my mouth and caused dyatonia got rid with a drill of all the contacts that where not “vertical” because “they are wrong and teeth do not occlude this way”.

    It is a paradigm in modern dentistry that teeth should occlude only with vertical forces and that there is one position where the whole skeletal system is in balance. They see the jaw as a “stool woth 3 legs standing on a floor. This model is called “mutually protected ocxlusion with tricuspidation and is profoundly WRONG!!!

    That model only works on reasonably symmetrical skeletal and skull structures.

    It dies not take into account that natural teeth work as an articulation and adjust sideways shifts and rotation of the condyles in the glenoyd fosa (technically it is called the “Bennet movement”).

    The Bennet movement of the jaw and condyles articulated by teeth contact is the key to aligning the axis of the plane of occlusion with the axis of yhe cervical and thoracic spine.

    In conclusion: secondary cervixal dystonia is caused by iatrogenic damage performed.by dentists who apply an occlusion philosophy that does nit reproduce the workingnof the human body.

    I have scientific evidence od what I am stating. I am organizing a group of researchers (invluding dentist, neurologists and sacro-craneal therapist) to expand rhisblinenline od research.

    Any contribution or help is highly appriaciated.

    My email: mmazza@neweuropean.net

    • hello mazza,
      I have been reading and watching vidoes on this CD related to TMJ. there is a Dr in CA that fits you for a mouth piece, and it takes the CD symptoms totally away. I want to go to CA and try this, but I don’t know how much it costs or if it is covered by medical insurance. all I know is the DR emailed me back and said I would have to go to CA for 10 days for the initial first visit. I need to raise money to do this.

  26. In Spanish:
    Simplificar el modelo condilar mandibular sólo a fuerzas verticales implica ver los dientes como sólo puntos de apoyo de la mandíbula y dar por descontado que  exista una posición específica de la mandíbula y de los condilos donde las fuerzas son esclusivamente verticales y  el sistema estomatognatico está en equilibrio.

    LA OCLUSION MUTUAMENTE PROTEGIDA 

    Este paradigma empreña toda la práctica y académica dental moderna. Tecnicamente se llama “oclusión mutuamente protegida”.  

    El potencial daño iatrogenico de este paradigma llega hasta el punto que a los dentistas se les enseña a: 

    – aplanar la natural y fisiológica curva de Spee (distribución mesio-distal de los dientes en la mandíbula y maxila); 

    – utilizar a los caninos para que, en todo movimiento excéntrico de la mandíbula desde una única posición elegida arbitrariamente, se pierda instantáneamente y simultáneamente todo contacto  entre molares y premolares, superiores e inferiores;

    – ignorar por completo que las bocas naturales, que nunca han sido tocadas por un dentista, presentan dos claras posiciones con un recorrido que describe una curva de circa 2 mm entre ellas (tecnicamente se llaman “Oclusión Céntrica” y “Máxima Intercuspidaciòn”).

    – Rectificar las inclinaciones curvas de las cúspides dentales.

    – ver el eje de rotacion de los condilos como un bisagra con movimientos de ese eje en translacion lineal en dos dimensiones respecto al cráneo. 

    OCLUSIÒN COMO ARTICULACIÒN

    Si se consideran la oclusión entre los arcos dentales y el sistèma estomatognático como una articulaciòn compleja (como el hombro pero con mayor amplitud y complejidad de movimiento), la consecuencia directa es que:

    – No existe ninguna posicion única con fuerzas verticales; 

    – en cada posición hay fuerzas repartidas en curvas y fuerzas de torsión. 

    – Las curvas de las cuspides dentales se relacionan de forma que la mandìbula funciona como una capsula receptáculo articular concavo (con curvas que reproducen las curvas de la fosa glenoidea)  y la maxila como una bola elipsoide convexa con curvas que reproducen las curvas de los condilos.

    – Es una articulación “triple” ya que se caracteriza por el libre movimiento en cualquier dirección, (incluida la separación que no tienen la coxofemoral y el hombro-humeroescapular) pero siempre en sincronía entre las dos ATM y la oclusión dental.

    – el eje de rotacion de los còndilos se mueve respecto al cráneo describiendo curvas sinusoidales. 

    EN UNA IMAGEN

    Para visualizarlo, los dos paradigmas ven el sistema estomatognatico y la función de la mandíbula como:

    – Mutuamente protegida: un taburete de 3 patas que se apoya en un suelo. 

    – Articulación: Imaginate morder una pelota de ping pong metida en la boca. 

  27. I have dystonia in both shoulders and legs. Numerous sensory tricks work including touching that limb, looking at in a mirror (but seeing my shadow does not which I expected would), or touching my cheek on that side. This is the first web pages that I saw mentioning green tinted sunglasses. That also works for me and greatly surprised me.

  28. Is this bog active now, 2016. There are no dates. I have had CD for over 20 years. Some things help a little but it is a primary negative factor in my physical life and is also a burden in my social life.

  29. I was shocked after reading from the website because I have many of those traits and characteristics including being ambidextrous. On the Myers-Brigg, my profile is ISTJ. I was diagnosed about two years ago with cervical degeneration/stenosis. My neurologist told me this caused my dystonia where my head wants to pull to the left.

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