Tourette syndrome

Overview

Tourette (too-RET) syndrome is a disorder that involves repetitive movements or unwanted sounds (tics) that can't be easily controlled. For instance, you might repeatedly blink your eyes, shrug your shoulders or blurt out unusual sounds or offensive words.

Tics typically show up between ages 2 and 15, with the average being around 6 years of age. Males are about three to four times more likely than females to develop Tourette syndrome.

Although there's no cure for Tourette syndrome, treatments are available. Many people with Tourette syndrome don't need treatment when symptoms aren't troublesome. Tics often lessen or become controlled after the teen years.

Symptoms

Tics — sudden, brief, intermittent movements or sounds — are the hallmark sign of Tourette syndrome. They can range from mild to severe. Severe symptoms might significantly interfere with communication, daily functioning and quality of life.

Tics are classified as:

• Simple tics. These sudden, brief and repetitive tics involve a limited number of muscle groups.
• Complex tics. These distinct, coordinated patterns of movements involve several muscle groups.

Tics can also involve movement (motor tics) or sounds (vocal tics). Motor tics usually begin before vocal tics do. But the spectrum of tics that people experience is diverse.

In addition, tics can:

• Vary in type, frequency and severity
• Worsen if you're ill, stressed, anxious, tired or excited
• Occur during sleep
• Change over time
• Worsen in the early teenage years and improve during the transition into adulthood

Before the onset of motor or vocal tics, you'll likely experience an uncomfortable bodily sensation (premonitory urge) such as an itch, a tingle or tension. Expression of the tic brings relief. With great effort, some people with Tourette syndrome can temporarily stop or hold back a tic.

When to see a doctor

See your child's pediatrician if you notice your child displaying involuntary movements or sounds.

Not all tics indicate Tourette syndrome. Many children develop tics that go away on their own after a few weeks or months. But whenever a child shows unusual behavior, it's important to identify the cause and rule out serious health problems.

Causes

The exact cause of Tourette syndrome isn't known. It's a complex disorder likely caused by a combination of inherited (genetic) and environmental factors. Chemicals in the brain that transmit nerve impulses (neurotransmitters), including dopamine and serotonin, might play a role.

Risk factors

Risk factors for Tourette syndrome include:

• Family history. Having a family history of Tourette syndrome or other tic disorders might increase the risk of developing Tourette syndrome.
• Sex. Males are about three to four times more likely than females to develop Tourette syndrome.

Complications

People with Tourette syndrome often lead healthy, active lives. However, Tourette syndrome frequently involves behavioral and social challenges that can harm your self-image.

Conditions often associated with Tourette syndrome include:

• Attention-deficit/hyperactivity disorder (ADHD)
• Obsessive-compulsive disorder (OCD)
• Autism spectrum disorder
• Learning disabilities
• Sleep disorders
• Depression
• Anxiety disorders
• Pain related to tics, especially headaches
• Anger-management problems

Diagnosis

There's no specific test that can diagnose Tourette syndrome. The diagnosis is based on the history of your signs and symptoms.

The criteria used to diagnose Tourette syndrome include:

• Both motor tics and vocal tics are present, although not necessarily at the same time
• Tics occur several times a day, nearly every day or intermittently, for more than a year
• Tics begin before age 18
• Tics aren't caused by medications, other substances or another medical condition
• Tics must change over time in location, frequency, type, complexity or severity

A diagnosis of Tourette syndrome might be overlooked because the signs can mimic other conditions. Eye blinking might be initially associated with vision problems, or sniffling attributed to allergies.

Both motor and vocal tics can be caused by conditions other than Tourette syndrome. To rule out other causes of tics, your doctor might recommend:

• Blood tests
• Imaging studies such as an MRI

Treatment

There's no cure for Tourette syndrome. Treatment is aimed at controlling tics that interfere with everyday activities and functioning. When tics aren't severe, treatment might not be necessary.

Medication

Medications to help control tics or reduce symptoms of related conditions include:

• Medications that block or lessen dopamine. Fluphenazine, haloperidol (Haldol), risperidone (Risperdal) and pimozide (Orap) can help control tics. Possible side effects include weight gain and involuntary repetitive movements. Tetrabenazine (Xenazine) might be recommended, although it may cause severe depression.
• Botulinum (Botox) injections. An injection into the affected muscle might help relieve a simple or vocal tic.
• ADHD medications. Stimulants such as methylphenidate (Metadate CD, Ritalin LA, others) and medications containing dextroamphetamine (Adderall XR, Dexedrine, others) can help increase attention and concentration. However, for some people with Tourette syndrome, medications for ADHD can exacerbate tics.
• Central adrenergic inhibitors. Medications such as clonidine (Catapres, Kapvay) and guanfacine (Intuniv) — typically prescribed for high blood pressure — might help control behavioral symptoms such as impulse control problems and rage attacks. Side effects may include sleepiness.
• Antidepressants. Fluoxetine (Prozac, Sarafem, others) might help control symptoms of sadness, anxiety and OCD.
• Antiseizure medications. Recent studies suggest that some people with Tourette syndrome respond to topiramate (Topamax), which is used to treat epilepsy.

Therapy

• Behavior therapy. Cognitive Behavioral Interventions for Tics, including habit-reversal training, can help you monitor tics, identify premonitory urges and learn to voluntarily move in a way that's incompatible with the tic.
• Psychotherapy. In addition to helping you cope with Tourette syndrome, psychotherapy can help with accompanying problems, such as ADHD, obsessions, depression or anxiety.
• Deep brain stimulation (DBS). For severe tics that don't respond to other treatment, DBS might help. DBS involves implanting a battery-operated medical device in the brain to deliver electrical stimulation to targeted areas that control movement. However, this treatment is still in the early research stages and needs more research to determine if it's a safe and effective treatment for Tourette syndrome.

Coping and support

Your self-esteem may suffer as a result of Tourette syndrome. You may be embarrassed about your tics and hesitate to engage in social activities, such as dating or going out in public. As a result, you're at increased risk of depression and substance abuse.

To cope with Tourette syndrome:

• Remember that tics usually reach their peak in the early teens and improve as you get older.
• Reach out to others dealing with Tourette syndrome for information, coping tips and support.

Children with Tourette syndrome

School may pose special challenges for children with Tourette syndrome.

To help your child:

• Be your child's advocate. Help educate teachers, school bus drivers and others with whom your child interacts regularly. An educational setting that meets your child's needs — such as tutoring, untimed testing to reduce stress, and smaller classes — can help.
• Nurture your child's self-esteem. Support your child's personal interests and friendships — both can help build self-esteem.
• Find a support group. To help you cope, seek out a local Tourette syndrome support group. If there aren't any, consider starting one.

Preparing for an appointment

If you or your child has been diagnosed with Tourette syndrome, you may be referred to specialists, such as:

• Doctors who specialize in brain disorders (neurologists)
• Psychiatrists or psychologists

It's a good idea to be well-prepared for your appointment. Here's some information to help you get ready, and what to expect from your doctor.

What you can do

• Be aware of any pre-appointment restrictions. At the time you make the appointment, be sure to ask if there's anything you need to do in advance, such as restrict your diet.
• Write down any symptoms you or your child is experiencing, including any that may seem unrelated to the reason for which you scheduled the appointment.
• Write down key personal information, including any major stresses or recent life changes.
• Make a list of all medications, vitamins or supplements that you or your child is taking.
• Make a video recording, if possible, of a typical tic to show the doctor.
• Write down questions to ask your doctor.

Your time with your doctor is limited, so preparing a list of questions can help ensure the best use of time. List your questions from most important to least important in case time runs out. For Tourette syndrome, some basic questions to ask your doctor include:

• What treatment, if any, is needed?
• If medication is recommended, what are the options?
• What types of behavior therapy might help?

Don't hesitate to ask other questions during your appointment anytime you don't understand something or need more information.

What to expect from your doctor

Your doctor is likely to ask you a number of questions. Being ready to answer them may allow time later to cover other points you want to address. Your doctor may ask:

• When did the symptoms begin?
• Have the symptoms been continuous or occasional?
• How severe are the symptoms?
• What, if anything, seems to improve the symptoms?
• What, if anything, appears to worsen the symptoms?