Tourette syndrome involves chronic tics or tic disorders. Tics are involuntary sounds or words that are usually accompanied by equally uncontrolled jerky and rapid movements (e.g., twitching).
What is Tourette syndrome?
Tourette syndrome is the name given to a neurological-psychiatric disorder, the causes of which are not fully understood to date. The name of the disorder goes back to the French neurologist Georges Gilles de la Tourette, who first described Tourette syndrome scientifically in 1885. Characteristic symptoms of Tourette’s syndrome are motor and vocal tics, i.e. sudden, uncontrolled, arhythmic movements of certain muscle groups (motor tics) and uncontrolled vocalizations (vocal tics). The uncontrollable tendency to make obscene remarks (coprolalia), which is often associated with Tourette’s syndrome, can only be observed in about one fifth of those affected and is not a characteristic symptom of Tourette’s syndrome. In addition, symptoms such as AD(H)S, obsessive-compulsive disorder, anxiety and obsessive-compulsive disorder, and depression may be observed in Tourette syndrome sufferers (comorbidity).
Causes
Tourette syndrome can be genetic and nongenetic. According to recent studies, in genetic Tourette syndrome, not a single gene but several genes are responsible for the inheritance of Tourette syndrome, although these, as well as the exact mechanism of inheritance, have not been determined one hundred percent to date. It is known for certain that children of a parent suffering from Tourette syndrome have a 50 percent probability of inheriting the disease, and that men are affected more frequently than women. In addition, Tourette’s syndrome is attributed to a disturbed metabolism in the dopaminergic system of the brain. The neurotransmitter dopamine is excessively active in Tourette syndrome sufferers, leading to a disturbance in motor processes. This metabolic imbalance is amplified by emotional stimuli (such as stress, pleasure) and triggers the tics typical of Tourette syndrome. In a very small proportion of those affected by Tourette syndrome, a bacterial streptococcal infection in childhood (such as scarlet fever, tonsillitis) is thought to trigger the condition (PANDAS syndrome).
Symptoms, complaints, and signs
Affected individuals experience repeated rapid physical movements (motor tics), vocalizations (vocal tics), or a combination of these two actions that serve no purpose. Affected individuals can delay the tics but cannot suppress them. If Tourette syndrome is present, there is a combination of several motor tics with at least one vocal tic. In many cases, simple motor tics occur, such as eye blinking, grimacing, head jerking, or shoulder jerking. Less commonly, there are complex motor tics such as jumping, touching people and objects, copropraxia (performing obscene gestures), body twisting, or smelling. Another symptom is repeated self-injurious behavior. For example, sufferers bang their head against the wall or certain objects, hit or pinch themselves. Simple vocal tics that occur frequently include grunting, squeaking, clearing the throat, whistling, clicking the tongue, or sniffing. Sufferers often also suffer from complex vocal tics such as coprolalia (emitting obscene words), echolalia (repeating sounds or word fragments they have just heard) or palilalia (repeating words they have just spoken themselves). Affected individuals generally tend to suddenly throw out words and short phrases in conversations that are unrelated to the topic of conversation. Also associated with Tourette’s syndrome are depression, sleep disturbances, learning difficulties, and general restlessness.
Diagnosis and course
No neuro-psychological diagnostic procedures are available for Tourette syndrome, and the diagnosis is made solely on the basis of symptomatology, that is, the symptoms present. Tourette syndrome is present when at least two motor tics and one vocal tic are observable for a period of at least one year before the age of 21. Most people affected by Tourette syndrome become ill between the ages of 6 and 8. Tourette syndrome has a chronic course and is characterized by a gradual onset.In the further course of the disease, the tics are subject to strong fluctuations in terms of both intensity and frequency and reach their strongest expression predominantly during puberty. In the majority of those affected by Tourette syndrome, a marked decrease in tics is observed in adulthood.
Complications
Tic and Tourette syndrome has a very negative impact on the quality of life of the affected person, and in the process can also lead to severe social tensions. Especially for outsiders, the tics and disorders can seem very strange, so that the affected person is often bullied or teased. However, in some cases, aggressive acts against sufferers also occur. During puberty, tics and Tourette’s syndrome can therefore cause severe psychological distress or depression. The syndrome also causes various muscle groups to move involuntarily, resulting in twitching and possibly spasm. However, in many cases the severity of the syndrome decreases with age, so that the daily life of the affected person becomes normal. Unfortunately, a causal treatment of tic and Tourette syndrome is not possible. Sufferers are dependent on various therapies that can alleviate the symptoms and limit the tics. However, a positive course cannot be guaranteed. Furthermore, medication can also be taken. Complications do not occur. Also, the life expectancy of the patient is usually not negatively affected by the tic and Tourette syndrome.
When should you see a doctor?
When there are abnormalities in behavior or motor skills, special care should always be taken. A doctor is needed as soon as there are involuntary or uncontrollable movement impulses or other peculiarities. A loss of control over phonation is a warning signal from the organism. A doctor is needed to initiate an investigation into the cause. Sleep disturbances, a general restlessness, nervousness and concentration problems indicate an irregularity. The complaints should be presented to a doctor, as the affected person needs medical care. Repetition of sounds just heard without any meaning behind it is considered a cause for concern. In the event of self-injurious behavior, a physician should be consulted as soon as possible. Hitting the wall with the hands, banging the head on objects or unusual twisting of the body indicate an existing disorder. Affected individuals cannot explain their actions and in most cases have no triggering stimulus. If words or parts of a sentence escape the mouth of the affected person without control, a physician should be informed of the observations. Making obscene gestures, insults, or other unpleasant actions are also part of the disorder. Impaired memory, learning difficulties, or withdrawal from participation in social life should be discussed with a physician.
Treatment and therapy
Tourette syndrome, because its causes have not yet been fully elucidated, cannot be cured either with medication or psychotherapy. Accordingly, only the symptoms of Tourette syndrome can be alleviated with the aid of pharmacologic and/or psychological therapeutic measures. Within the framework of psychotherapeutic measures, methods for coping with stress as well as relaxation techniques can be learned. Particularly positive results are achieved by the so-called reaction umber method, in which those affected by Tourette syndrome are trained to perceive the first signs of possible tics and learn to develop mechanisms of counter-regulation. Additional drug treatment, on the other hand, should only be considered if the symptoms are particularly pronounced and are perceived as disturbing. The pharmacological treatment methods developed to date also address the symptoms rather than the cause. In this respect, good results are achieved with dopamine antagonists. These are bound by the receptors of the neurotransmitter dopamine and prevent the neurotransmitter from docking, thus blocking it and minimizing the metabolic imbalance in the dopaminergic system described above. A drug of this group used in many cases in Germany is tiapride.
Prevention
No preventive measures exist for Tourette syndrome.Nevertheless, it makes sense to avoid situations that trigger stress or to learn how to deal with them. According to some studies, some non-genetic, environmental or psychosocial factors may not cause Tourette syndrome, but may influence the expression and severity of the disorder. For example, smoking and stress during pregnancy, as well as complications during childbirth, are risk factors that may increase the expression of tics typical of Tourette syndrome.
Follow-up
Based on current knowledge, Tourette syndrome is not completely curable. The disease can only be alleviated with medication. Patients must be able to cope with their tics in everyday life for the rest of their lives. For this reason, aftercare makes sense. It takes the form of behavioral therapy under the guidance of a specialist or psychologist. The goal of aftercare is to help the patient deal appropriately with the syndrome. During aftercare, the patient learns ways to control impulses. Regular appointments with a behavioral therapist are necessary for successful recovery. Those affected by Tourette’s syndrome often experience a lack of understanding and rejection in their environment. In the workplace, they form a risk group for mobbing. In the family environment, the patient may also feel rejected. Depression or reduced self-confidence are the result. In this case, follow-up care is psychotherapeutic. The prevention of mental disorders has priority here. It involves close people if they feel overwhelmed by the patient’s condition. Tourette’s patients can have a normal job. Many of them have a distinct creativity. The aftercare aims at the elaboration and (professional) realization of the individual talent. By becoming aware of their own abilities, the patient’s self-confidence increases.
What you can do yourself
Tourette syndrome is a neurological disorder of the nervous system that is primarily genetic. It usually runs chronically, so it is neither curable nor treatable. Only the symptoms can be improved by pharmacological or psychological behavioral therapy. Through targeted exercises, behavioral therapy can lead to a reduction or targeted suppression of tics, resulting in an improvement or semi-normalization of the affected person’s everyday life. Particular mention should be made here of “habit reversal training”, which is considered to be a particularly helpful way of treating tics. In Germany, however, there are not yet very many experienced therapists. It should also be noted that this measure usually only has an effect if the severity of the symptoms is not yet too pronounced. It also depends on how long the person has been suffering from tics. A much more important measure would be the sensitization or education of the personal environment. Since tics are frequently and strongly perceived in public, the psychological suffering pressure of affected persons is very high. Both Tourette’s syndrome and the tics are met with anger, astonishment and rejection in the environment of the affected person, which can lead to exclusion on both sides. Many people feel provoked especially by the vocal tics and cannot imagine that they are part of a disease. For this reason, it is important to educate the environment to avoid shame and ridicule and to integrate the affected individuals.
