TEN COMMON QUESTIONS REGARDING TOURETTE SYNDROME
By Irene Malaty M.D.
1.) My doctor says I have tics. Does that mean I have Tourette syndrome (TS)?
Not everyone that has tics has Tourette syndrome.
Tics are sudden recurrent non-rhythmic stereotypical movements or vocalizations that a person makes. Most typically, a person experiences an urge or sensory discomfort that leads to performing the tic, and there may be a temporary sense of relief upon completion of the tic. At times, however, a person may feel that the tics are completely involuntary. Common tics include blinking, head jerking, sniffing, or grunting. Less commonly, tics can be extremely disruptive and even cause self-injury.
“Tourette syndrome” is the condition of having both motor and vocal tics at some point, with tics lasting over one year and not remitting for more than three months. Tics typically change in presentation (location, type, and/or severity) over time. TS describes a condition that is not caused by another illness. The onset of symptoms is typically before 18 years of age.
2.) Is there a test my doctor can do to tell if I have Tourette syndrome?
Tourette syndrome is diagnosed clinically, meaning that a clinician typically makes the diagnosis based on a person’s symptoms and clinical examination. Sometimes home videos can be helpful as tics may be suppressed while in the doctor’s office. There is not a specific blood test or diagnostic test that confirms the diagnosis. A physician may do lab testing or imaging studies to rule out other conditions that can mimic Tourette syndrome, however.
3.) Can people with tics control them if they want to?
People with tics can often hold them in for a very brief period, but doing so may result in a build-up of the need to perform the tic(s) and a subsequent outburst.
4.) Does everyone say bad words?
No. In fact, the phenomena called “coprolalia” meaning swearing or saying socially inappropriate or derogatory words or phrases, and “copropraxia” meaning performing socially inappropriate gestures, are seen in only a small minority of people with Tourette syndrome. The media and entertainment industry have popularized the perception that these are critical components to the Tourette syndrome.
5.) What is the cause of Tourette syndrome?
Although the cause is not completely understood, there seems to be a genetic component that contributes. Some specific genetic associations have been discovered, such as the rare causes of mutations in the SLITRK1 gene or the HDC genes which have been found in a small percentage of people with TS. Research is ongoing to further work out the genes behind this syndrome. The genetic contribution does not fully explain the variation in symptoms within a family or the fact that some individuals have no family history, and not all sets of twins will both express the TS if one of the twins does. Currently, overactivity of some brain circuits that relate to the neurotransmitter dopamine seems to be at the heart of the condition. Theories relating to an immune mechanism, hormonal influences, and changes in early brain development have all been considered.
6.) What is the prognosis?
People with TS can live full, productive lives. The majority of people with classical TS will have improvement or even full remission of symptoms in late adolescence or early adulthood. The symptoms may persist, however, in some people.
7.) Is there a cure?
At this point in time, there is no cure, but there are many treatments that help control the symptoms that cause some people disability. These include oral medications to help control the tics and also the common “co-morbidities” known to occur in a large number of people with TS (see below).
8.) Do I have to take medicine?
Of course not. Some people with TS do not require any treatment at all, and others decide to take medication or use other therapeutic strategies to control symptoms that are bothersome. Habit reversal training is a non-pharmacologic therapeutic strategy with some evidence of benefit in tic reduction. This behavioral therapy requires working with a practitioner trained in the technique, and learning strategies to have alternative responses to the internal urge to perform tics.
9.) I have tics, but they are not my worst problem. Is it common to have other difficulties (co-morbidities) with TS?
Yes. Children and adults with TS have increased risk of attention deficit disorder (which may or may not involve hyperactivity) and also obsessive compulsive disorder. Depression, anxiety, and impulse control disorders are also more likely to occur in people with TS than in the general population. Sometimes these co-morbidities can be more troublesome than the tics themselves.
10.) What kind of research is taking place?
Research is ongoing to find the cause for TS as well as finding treatments and ultimately cures. One example is a large project called a genome wide association scan, which means that blood is being collected from people with TS to find what genetic component they may have in common. This has potential to help determine the cause and eventually treatments or cures. Medications and also surgical treatments (deep brain stimulation) are under investigation as well.
Great resources for learning the latest about Tourette can come from speaking with your physician and from the following websites:
Tourette Syndrome Association: www.tsa-usa.org
WORLDWIDE EDUCATION AND AWARENESS FOR MOVEMENT DISORDERS: www.wemove.org