Tourette syndrome is a neurological disorder in which you display unusual movements or sounds over which you may have little or no control (tics). For instance, you may repeatedly blink your eyes, shrug your shoulders or jerk your head. In rare cases, you might even blurt out obscenities.
An estimated 1 percent to 2 percent of American children and adults have Tourette syndrome. Males are about three to four times more likely than females to develop Tourette syndrome.
Although there’s no cure, you can live a normal life span with Tourette syndrome, and many people with Tourette don’t need treatment when symptoms aren’t troublesome. Children often outgrow Tourette syndrome after adolescence.
Tics are the hallmark sign of Tourette syndrome. Symptoms range from very mild to severe and debilitating.
The first sign of Tourette is often a facial tic, such as eye blinking. But the spectrum of tics that people experience is amazingly diverse, and there’s no typical case.
Tics involve movement (motor tics) and sound (vocal tics). They’re classified in two ways:
- Simple tics, which are sudden, brief and repetitive and involve a limited number of muscle groups
- Complex tics, which are distinct, coordinated patterns of movements involving several muscle groups
|Some of the more common tics seen in Tourette syndrome|
|Simple tics||Complex tics|
|Eye blinking||Touching the nose|
|Head jerking||Touching other people|
|Shoulder shrugging||Smelling objects|
|Eye darting||Obscene gestures|
|Finger flexing||Fapping the arms|
|Sticking the tongue out||Hopping|
|Simple tics||Complex tics|
|Hiccuping||Using different voice intonations|
|Yelling||Repeating one’s own words or phrases|
|Throat clearing||Repeating others’ words or phrases|
Tics can vary in type, frequency and severity over time. They may worsen during periods of high stress and anxiety, fatigue, illness, recent head injury, or excitement. They can even occur during sleep. You may experience sensory symptoms before the onset of motor or vocal tics. This is called a premonitory urge.
Different tics may develop over time. Tourette symptoms are most often at their worst during the teenage years and then sometimes get better during the transition to adulthood.
With great effort and concentration, some people with Tourette syndrome can sometimes stop themselves from having these tics or hold back the tics until they find a place where it’s less disruptive to express them. But most tics must be expressed eventually.
In rare cases, people with Tourette syndrome may involuntarily shout obscenities or repeat the words of other people.
The exact cause of Tourette syndrome isn’t known, and there’s no known way to prevent it. There is likely a combination of genetic and environmental factors. Theories about the causes of Tourette include:
- Genetics. Some studies of twins and families suggest that Tourette may be an inherited disorder. The specific genes involved in Tourette syndrome are still being defined.
- Brain chemical abnormalities. Certain neurotransmitters in the brain may play a role, including dopamine and serotonin.
- Infections. Some research suggests that there’s a link between infections and tics, but this remains controversial.
Some factors may increase the risk of developing Tourette syndrome. These may include:
- Having a family history of the disorder or other tic disorders
- Premature birth
There’s no specific test that can diagnose Tourette syndrome. Instead, doctors must rely on the history of the person’s symptoms to diagnose the disorder.
To be diagnosed with Tourette syndrome, someone must meet criteria spelled out in the Diagnostic and Statistical Manual of Mental Disorders (DSM). This manual is published by the American Psychiatric Association and is used by mental health professionals to diagnose certain conditions and by insurance companies to reimburse for treatment.
According to the DSM, the criteria to diagnose Tourette syndrome include:
- Both motor and vocal tics must be present.
- Tics occur several times a day, nearly every day or intermittently, for more than a year. There must not be a break in tics for more than a three-month period.
- The onset of tics occurs before age 18.
- Symptoms are not caused by medications, other substances or another medical condition.
Diagnosis of Tourette syndrome may be delayed because families and even doctors are sometimes unfamiliar with the symptoms, or the symptoms may mimic other problems. Eye blinking may be initially confused with vision problems, for instance, while sniffing may be attributed to allergies.
Because tics and movement problems can be the result of other serious health conditions, your doctor may suggest having tests to rule out other problems. These tests include blood tests or neuroimaging studies, such as magnetic resonance imaging (MRI).
People with Tourette syndrome have a normal life span and often lead a healthy, active, happy life. The complications that Tourette may cause are usually psychosocial. That is, they can negatively affect self-image, social relationships, and school or work situations.
In addition, with Tourette it’s not unusual to develop some mental health problems, including attention-deficit/hyperactivity disorder (ADHD), obsessive-compulsive disorders, depression and anxiety disorders.
There’s no cure for Tourette syndrome. Treatment of Tourette syndrome is intended to help control bothersome tics and to help cope with psychosocial aspects of the condition. When tics aren’t severe, treatment may be unnecessary.
Treatment options include:
- Medications. Some medications can be used to help control or minimize tics. These may include certain antipsychotic medications, antidepressants, stimulant medications and central adrenergic inhibitors. But none of the medications will completely eliminate the symptoms, and the side effects may outweigh any benefits gained.
- Psychotherapy. Psychotherapy can be helpful for two reasons. It can help with accompanying problems, such as ADHD, obsessions, depression and anxiety. Therapy can also help people cope emotionally.
- Deep brain stimulation. For debilitating tics that don’t respond to other treatment, early research suggests that deep brain stimulation (DBS) may be effective. DBS consists of implanting a battery-operated medical device (neurostimulator) in the brain to deliver electrical stimulation to targeted areas that control movement. Further research is needed to determine whether DBS is beneficial for those with Tourette syndrome.
One of the most unfortunate things about Tourette syndrome may be that it occurs during vulnerable childhood years, when kids are often subject to ridicule or teasing by their peers.
Self-esteem and relationships can suffer when someone has Tourette syndrome. Those affected may be distressed, frustrated and embarrassed about their tics. They may avoid social activities, such as dating or going to the movies. All of this can lead to an increased risk of depression and substance abuse.
School may pose special challenges for children with Tourette syndrome, and students may need special accommodations for studying or taking tests.
People who feel a tic coming on may be able to take steps to suppress it. But suppressing tics typically produces profound anxiety and tension. And when they finally allow the tic to occur, it may be worse than it would have been had they not tried to suppress it.
If you have Tourette syndrome, consider these tips for coping with your disorder:
- Remember that tics usually lessen in severity as you get older. Tics usually reach their peak in the early teens to midteens.
- Get involved in physical activities or hobbies. Research indicates that being engrossed in activities can help reduce the frequency and severity of tics.
- If you must be in a public place for a while, such as on an airplane or bus, take something to occupy your mind, such as crossword puzzles, computer games or sketchbooks.
- Reach out to others dealing with Tourette syndrome for support and information.
If you are living with a child or another loved one who has Tourette syndrome, these coping skills may help you:
- Get informed. Learn as much as you can about Tourette syndrome. Talk to your doctor about any questions you have.
- Find a support group. Ask your doctor for the names of local Tourette syndrome support groups. If there aren’t any, consider starting one.