The Facts About Tourette Syndrome

An estimated 350,000 to 450,000 children and adults in the United States have Tourette syndrome. While the condition can be challenging for some, there are treatments available that can help effectively manage it.

Tourette syndrome is a developmental neuropsychiatric disorder that causes affected individuals to have tics. Tics can be displayed as repetitive movements or sounds that are largely involuntary and difficult to control.

Tourette syndrome is one of many conditions that fall along the wide spectrum of tic disorders. Research indicates tic disorders affect about 0.5 percent to 0.7 percent of the population.

The defining symptom of Tourette syndrome is the manifestation of tics. These usually appear between the ages of 2 and 15, according to Mayo Clinic. Tics are known to range in severity, anywhere from mild to severe. A mild tic could look like repeated blinking of the eyes, whereas a more severe tic could include difficult-to-control vocal outbursts that can get in the way of daily communication.

The severity of tics can change over time and often lessen during early adulthood.

There are two umbrellas under which tics can fall: simple and complex. Simple tics are characterized by repetitive, sudden and brief movements of a limited group of muscles. Complex tics involve several muscle groups and manifest as coordinated patterns of movement, according to Mayo Clinic.

Some examples of a simple tic can include:

• Facial twitches (motor tic)
• Rapid blinking (motor tic)
• Shrugging (motor tic)
• Throat clearing (vocal tic)
• Grunting (vocal tic)

Complex tics can include:

• Copying the movements of others (motor tic)
• Jumping (motor tic)
• Using obscene gestures (motor tic)
• Blurting out obscene words or phrases (vocal tic)
• Repeating yourself or others (vocal tic)

Tics can heighten in severity when an individual is sick, distressed or overly eager. Experts have suggested tics often increase in severity during a patient's teen years and lessen in severity over time.

While tics are not strictly involuntary, they are generally difficult for individuals to suppress. People with Tourette syndrome may experience a premonitory urge—a surge of discomfort in their body before a tic occurs—which can only be relieved through expressing the tic.

Depending on the person and the severity of symptoms, tics may be temporarily suppressed with extreme effort. Some tics are involuntary and can even occur during sleep.

There is no single known cause of Tourette syndrome, though experts believe there is likely a genetic component. Research is still underway to determine which genes may be linked to the disorder.

Additionally, environmental and biological factors are believed to play a role in the cause of Tourette syndrome.

No single test can diagnose Tourette syndrome. Rather, the syndrome is typically diagnosed after a thorough review of your personal history or potential signs and symptoms of the condition. During this evaluation, your doctor may ask you how often tics occur, when they began and what type of specific tics you experience.

Because the symptoms of Tourette syndrome can mirror ones caused by other conditions—obsessive-compulsive disorder (OCD) or other behavioral conditions—it is often misdiagnosed or missed altogether.

Before you are diagnosed with Tourette syndrome, your doctor may order lab work and imaging studies to rule out other potential causes for your tics.

For individuals with Tourette syndrome whose tics are mild or otherwise manageable, treatment may not be necessary. However, for people whose tics are impacting their quality of life, treatment is available.

Treatment for Tourette syndrome typically includes medication, therapy or both. Which medication your doctor recommends for you depends largely on the type and severity of your tics. For some, Botox injections may be used to paralyze certain small muscle groups.

Other medications used to treat Tourette syndrome include those used primarily for attention-deficit/hyperactivity disorder (ADHD), antidepressants, antiseizure drugs, and other medications that work by blocking or lowering dopamine levels.

Treatments may include deep brain stimulation, psychotherapy or even behavioral therapy.

Tourette syndrome is often associated with a variety of other conditions that can present behavioral and social challenges.

Those with Tourette syndrome may struggle with sleep disorders, depression, anxiety, chronic headaches and anger management issues. Autism spectrum disorders, OCD, ADHD and some learning disabilities are also associated with Tourette syndrome.

There is no mode of prevention for Tourette syndrome, but there are factors that put an individual at greater risk for the condition, including a family history of Tourette syndrome or any other tic disorders.

Men are at a greater risk for Tourette syndrome and are estimated to be three to four times more likely to develop the condition than females.

If you struggle with involuntary or difficult-to-control movements or sounds, don't hesitate to contact your healthcare provider for evaluation. If you notice these symptoms in your child, make an appointment.

The presence of tics does not always mean you have Tourette syndrome. Your doctor will be able to help determine if these movements and vocalizations are due to an underlying health problem or Tourette syndrome and help you determine the best path forward for treatment.

Research into Tourette syndrome is steadfast and new discoveries are made regularly.

Five genes and genetic variations (CNTNAP2, SLITRK, HDC, NRXN1 and CNTN6) have been linked to rare forms of Tourette syndrome and an increased risk for developing conditions such as OCD, according to the Tourette Association of America (TAA).

The TAA also reports that deep brain stimulation, though experimental, may be on the path toward FDA approval for the treatment of severe cases of Tourette syndrome.

Ongoing research into Tourette syndrome will help further the current understanding of the condition's causes and potential treatments.

What triggers Tourette syndrome?

Tics can occur at any time, even during sleep. People with Tourette syndrome may experience more severe tics when stressed, anxious, tired, sick or overly excited.

What are the main symptoms of Tourette syndrome?

The symptoms of Tourette syndrome vary by person and can be wide-ranging. Symptoms can include repetitive movements of limited groups of muscles and result in repeated nose twitching, blinking or shoulder shrugging. More complex tics may result in the echoing of what other people say, blurting out obscene or vulgar words, or stepping in certain patterns.

What is the life expectancy for living with Tourette syndrome?

There's no specific limit to life expectancy for people with Tourette syndrome and many with the condition live long, happy and healthy lives. Many people with Tourette syndrome may not require treatment at all if the condition is mild. Those with more severe symptoms have effective treatment options available.