Dystonia

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

⇓ Profile INTJ (click to expand)

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

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