Oct. 17, 2023
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Tourette syndrome (TS) is a neurological disorder that may cause sudden unwanted and uncontrolled rapid and repeated movements or vocal sounds called tics. TS is one of a group of disorders of the developing nervous system called tic disorders.
The motor (involving body movement) or vocal (involving sounds you make) tics of TS come and go over time, varying in type, frequency, location, and severity. If you have tics, you cannot stop your body from having them. The first symptoms usually occur between the ages of 5 and 10 years, generally in the head and neck area. These may progress to include the muscles in your torso, arms, and legs. Motor tics generally occur before the development of vocal tics.
Tourette syndrome affects more boys than girls. Most people with TS experience their worst tic symptoms in their early teens, but tics typically lessen and become controlled by the late teens to early 20s. For some people, TS can be a chronic condition with symptoms that last into adulthood. In some cases, tics may worsen in adulthood. TS is not a degenerative condition (one that continues to get worse) and individuals with TS have a normal life expectancy.
Classification of tics and symptoms. If you have TS, you may experience simple or complex motor tics. They may range from very mild to severe, although most cases are mild.
Simple tics are sudden, brief, repetitive movements that involve a few muscle groups. They are more common than complex tics. Simple tics often precede complex tics.
Simple motor tics include:
Simple vocal tics include:
Complex tics are distinct, coordinated patterns of movement involving several muscle groups in different parts of the body.
Complex motor tics might include facial grimacing combined with a head twist and a shoulder shrug. Other complex motor tics may appear purposeful, including:
Complex vocal tics may include:
Some of the most dramatic and disabling tics may include motor movements that result in self-harm such as punching yourself in the face or vocal tics such as echolalia or swearing. Some tics are preceded by an urge or sensation in the affected muscle group (premonitory urge). You may feel like you have to complete a tic in a certain way or a certain number of times to relieve the urge or decrease the sensation.
Tic triggers. Your tics may worsen with excitement or anxiety and get better during calm, focused activities. Certain physical experiences can trigger or worsen tics; for example, tight collars may trigger neck tics. Hearing another person sniff or clear the throat may trigger similar sounds. Tics do not go away during light sleep but are often significantly diminished; they go away completely in deep sleep.
Although the symptoms of TS are unwanted and unintentional (involuntary), some people can suppress or otherwise manage their tics to minimize their impact on functioning. However, people with TS often report a substantial buildup in tension when suppressing their tics to the point where they feel that the tic must be expressed (against their will). Tics in response to an environmental trigger can appear to be voluntary or purposeful but are not.
Disorders associated with TS. Like many other individuals with TS, you may experience additional co-occurring neurobehavioral problems (how the brain affects emotion, behavior, and learning) that often cause more impairment than the tics themselves. Although most people with TS experience a significant decline in motor and vocal tics in late adolescence and early adulthood, the associated neurobehavioral conditions may continue into adulthood.
The most common co-occurring conditions include:
Educational Settings. Although students with TS often function well in the regular classroom, ADHD, learning disabilities, obsessive-compulsive symptoms, and frequent tics can greatly interfere with academic performance or social adjustment. After a comprehensive assessment, students should have access to an educational setting that meets their individual needs. Students may require tutoring, smaller or special classes, private study areas, exams outside the regular classroom, other individual performance accommodations, and in some cases special schools.
Who is more likely to get Tourette syndrome?
Most cases of TS involve the interaction of multiple gene variations and environmental factors.
Although the cause of TS is unknown, current research points to abnormalities in:
TS Inheritance. Changes (mutations) in one or more genes have been shown to be involved with TS. A small number of people with TS have mutations involving the SLITRK1 gene, which affects how neurons grow and connect with one another. Abnormalities in the NRXN1 and CNTN6 genes, which also regulate the normal formation of these nerve connections, also may play a role in TS. Scientists continue to look for other genes involved with TS. Although there may be a few genes with substantial effects, it is also possible that many genes with smaller effects and environmental factors may play a role in the development of TS.
It is important to understand that genetic tendency may not necessarily result in TS; instead, it may express itself as a milder tic disorder or as obsessive-compulsive behaviors. It is also possible that children who inherit the gene abnormality will not develop any TS symptoms.
Genetic studies also suggest that some forms of ADHD and OCD are genetically related to TS, but there is less evidence for a genetic relationship between TS and other neurobehavioral problems that commonly co-occur with TS.
Gender also plays an important role in TS gene expression. At-risk males are more likely to have tics and at-risk females are more likely to have obsessive-compulsive symptoms.
Genetic counseling of people with TS should include a full review of all potentially hereditary conditions in the family.
How is Tourette syndrome diagnosed and treated?
Diagnosing TS. To diagnose TS, a doctor will ask if you have:
Common tics are often diagnosed by a primary care provider, pediatrician, or mental healthcare specialist. Atypical symptoms (different from classical symptoms) or atypical presentations (for example, symptoms that begin in adulthood) may require additional expertise for diagnosis.
There are no blood, laboratory, or imaging tests needed for diagnosis. In rare cases, neuroimaging studies, such as magnetic resonance imaging (MRI) or computerized tomography (CT), electroencephalogram (EEG) studies, or certain blood tests may be used to rule out other conditions that might be confused with TS.
It may take some time to receive a formal diagnosis of TS. Families and physicians unfamiliar with the disorder might think mild and even moderate tic symptoms may be insignificant, a part of a developmental phase, or the result of another condition. For example, some parents may think that eye blinking is related to vision problems or that sniffing is related to seasonal allergies.
Treating TS. Currently, there is no cure for TS but treatments are available to help manage some symptoms.
If tic symptoms are mild and do not cause impairment, you may not need treatment. If symptoms interfere with daily functioning, there are effective medications and other treatments. Some medications may have or cause side effects and should be carefully managed by your physician or healthcare provider.
Unfortunately, there is no one medication that is helpful to all people with TS, nor does any medication completely eliminate symptoms.
Other therapies and treatments can include:
What are the latest updates on Tourette syndrome?
The National Institute of Neurological Disorders and Stroke (NINDS) and other components of the National Institutes of Health (NIH)—such as the National Institute of Mental Health, the Eunice Kennedy Shriver National Institute of Child Health and Human Development, the National Institute on Drug Abuse, and the National Institute on Deafness and Other Communication Disorders—support research relevant to TS, either at NIH laboratories or through grants to major research institutions across the country.
Another component of the Department of Health and Human Services, the Centers for Disease Control and Prevention (CDC), funds professional education programs as well as TS research.
Knowledge about TS comes from studies across numerous medical and scientific disciplines, including genetics, neuroimaging, neuropathology, clinical trials (medication and non-medication), epidemiology, neurophysiology, neuroimmunology, and descriptive/diagnostic clinical science.
You may find more information about research on TS by using NIH RePORTER, a searchable database of current and past research projects supported by NIH and other federal agencies. RePORTER also includes links to publications and resources from these projects.
How can I or my loved one help improve care for people with Tourette syndrome?
Consider participating in a clinical trial so clinicians and scientists can learn more about TS. Clinical research uses human volunteers to help researchers learn more about a disorder and perhaps find better ways to safely detect, treat, or prevent disease.
All types of volunteers are needed—those who are healthy or may have an illness or disease—of all different ages, sexes, races, and ethnicities to ensure that study results apply to as many people as possible, and that treatments will be safe and effective for everyone who will use them.
For information about participating in clinical research visit NIH Clinical Research Trials and You. Learn about clinical trials currently looking for people with TS at Clinicaltrials.gov, a searchable database of current and past federal and private clinical trials.
Where can I find more information about Tourette syndrome?
Information may be available from the following resources:
Child Neurology Foundation
Tourette Association of America
Content source: https://www.ninds.nih.gov/health-information/disorders/tourette-syndrome Accessed July 17, 2023.
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