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.
- 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
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.
- 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!
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
- 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