Tourette's syndrome usually appears between the ages of six and eight and can develop into adulthood, according to Institut du Cerveau. This disorder can be particularly difficult to live with. Singer Billie Eilish, who was interviewed for My Next Guest Needs No Introduction, a show hosted by David Letterman that was broadcasted on Netflix, on 20 May 2022, confided about her condition. The Ocean eyessinger was diagnosed with Tourette's syndrome at the age of 11. Since then, she has had to live with it and admits that ‘it's very exhausting’. She shared:
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I never really have tics, because the main tics I do constantly, throughout the day, are going to be wiggling my ear, raising my eyebrow, snapping my jaw or flexing my arm or muscles here and there. These are things you'll never notice if I don't tell you (...) When I move, I don't tick at all. When I ride, move and sing, I concentrate and I don't tick either.
What is Tourette's syndrome?
First documented in 1825, Tourette's syndrome (TS) is an uncommon neurological disorder that begins in childhood. The prevalence for chronic tics in adults is generally estimated at one in 200 individuals according to the Quebec Association of Neuropsychologists. And, it is three times more common in boys than girls, as per Dr Cristina Victorio from Akron Children's Hospital. The syndrome is characterised by the appearance of tics which can be both motor and vocal. But the severity of the symptoms varies according to the individual and over time. For example, in childhood, it is not uncommon for some tics to go unnoticed.
Motor tics are usually the first to appear and are related to involuntary muscle contractions. These may include eye blinks, shoulder shrugs, twitching, or facial movements. Next may come sound tics such as mouth or nose noises. The most common are throat clearing, sniffing, grunting, screaming, involuntary laughter, or tongue clicking. Contrary to popular belief, the production of obscene words or coprolalia is rarer (less than 20% of cases), according to Institut de Cerveau.
Uncontrollable tics
Tics are usually uncontrollable and occur in bursts after a feeling of psychological or physical discomfort. However, not all tics are necessarily developed in the same person, and they may stop, change, or resume after a while. New ones may also appear over time. The frequency or intensity of tics is increased by certain factors such as stress, anxiety, fatigue, or stimulants. Sleep, alcohol, or activities requiring concentration tend to decrease them.
Often, tics are associated with OCD (obsessive-compulsive disorder) in the form of obsession or recurrent ideas leading to compulsive actions, according to DrVictorio. In addition, the syndrome is accompanied by other disorders such as attention deficit, hyperactivity, mood changes, sleep, or learning disorders. Individuals may also be prone to rage attacks or even panic attacks. However, Tourette’s syndrome does not affect intellectual ability or life expectancy.
What causes this?
The syndrome and its various symptoms are thought to be linked to a biochemical dysfunction in the brain, more specifically in the basal ganglia. This would lead to a dysfunction in the production of neurotransmitters, in particular dopamine, which is known to play a role in modulating actions and behaviour. However, the precise mechanisms remain unclear, as do the causes.
Research has revealed a genetic component. Although the syndrome is not contagious, it is hereditary and in the majority of cases is passed on to offspring (one chance in two). Within a family, the risk of a relative also being affected is estimated to be 10%. But the genes involved have not yet been clearly identified, eliminating the possibility of genetic screening for the disease. In addition, researchers have found that other non-genetic, environmental, or infectious factors can worsen the severity of symptoms, without actually causing the syndrome.
Once the first symptoms appear, the course of the disorder will vary from one individual to another. However, in general, the tics usually begin between the ages of 4 and 6, increase in severity with a peak around age 10 to 12, and decrease in adolescence, according to Dr Victorio. By adulthood, the patient is often able to better control his or her environment and modify the tics, making them less noticeable. Severe cases are therefore rare in adulthood.
Treatment for Tourette's syndrome
Tourette's syndrome cannot be cured, but there are treatments that can reduce the effects. They are not usually necessary in early years when the signs are still low. They become necessary when the tics become more severe, are difficult to manage, or are particularly disabling in everyday life. In the case of mild tics, the recommended medications are agitators of certain neurotransmitters (pergolide, ropinirole, clonazepam, or clonidine).
In the case of moderate or severe tics, neuroleptics (e.g. risperidone) are recommended. Depending on the case, antidepressants or anxiolytics may also be prescribed. However, these treatments have significant side effects such as weight gain and fatigue. Other alternatives have been tested but have not yet proved effective.
In addition, behavioural therapies can help some people to reduce or better control their tics and OCD. In the same way, the people around them play an essential role in de-stigmatising the condition and helping the sufferer to integrate into social life.
Sources used:
- Syndrome de Gilles de la Tourette - Institut du cerveau
- Syndrome de Gilles de la Tourette - Association québécoise des neuropsychologues
- Syndrome Gilles de la Tourette - CHU Sainte-Justine
- Tics et syndrome de Gilles de la Tourette chez l'enfant et l'adolescent - Le Manuel MSD
This article is translated from Gentside FR.
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