Tourette Syndrome: Understanding Tics

Tourette syndrome is a neurological condition that causes people to make sudden, repeated movements or sounds called tics. Many people with Tourette’s feel a buildup of tension in their body that is relieved by the tic, which is involuntary.

Tourette’s is often associated with someone shouting an offensive word in a public setting. However, most people with the syndrome aren’t prone to sudden outbursts of inappropriate words (called coprolalia).

“Due to movies and other media, there’s a popular misconception that all or most people with Tourette’s have coprolalia,” says University Hospitals neurologist Camilla Kilbane, MD. “But this is just a myth.”

Symptoms of Tourette Syndrome

To be diagnosed with Tourette’s, a person must have both motor tics (those involving movement) and vocal tics (those involving sound) before age 18. Tics can be simple or complex, and must last for more than one year.

Simple motor tics include:

• Blinking or squinting
• Making faces
• Twitching the nose
• Jerking the head or neck
• Shrugging shoulders
• Moving arms or hands
• Tightening stomach muscles

Complex motor tics include:

• Bending or twisting
• Jumping or hopping
• Kicking or spinning
• Clapping
• Touching or smelling things
• Making rude gestures (rare)

Simple vocal tics include:

• Grunting
• Throat clearing
• Coughing
• Barking

Complex vocal tics include:

• Coprolalia: involuntary swearing, slurs or obscene language. Only about 10% of people with Tourette’s have coprolalia.
• Echolalia: repeating words said by others.

Who Gets Tourette Syndrome?

Tourette’s almost always starts in children between ages 5 and 10. People who don’t have the condition as a child almost never get it as an adult.

Tourette’s often runs in families. Boys are three to four times more likely to get Tourette’s than girls. Additional risk factors include:

• Low birth weight.
• Smoking during pregnancy.
• Family history of attention-deficit/hyperactivity disorder (ADHD) and/or obsessive-compulsive disorder (OCD).

What Causes Tourette Syndrome?

The exact cause of Tourette’s isn’t known. Experts believe it’s likely caused by a combination of genetics and environmental factors. They’ve also identified the parts of the brain involved in the disease.

“Tourette syndrome is linked to improper function of the basal ganglia,” explains Dr. Kilbane. The basal ganglia is a group of brain cells that control voluntary body movements, decision-making, habit formation, and controlling and expressing emotions. The many functions of the basal ganglia help explain why Tourette’s can cause both simple movements and more complex behaviors.

How Common Is It?

• About 1 in 160 children between the ages of 5 to 17 years in the U.S. has Tourette’s.
• Roughly 4 million people in the U.S. have Tourette’s or persistent tic disorder (PTD), a related condition in which someone has either motor or vocal tics (but not both) for more than one year.
• Approximately 1 in 50 children aged 5 to 14 years in the U.S. has Tourette’s or PTD.

Is Tourette Syndrome Permanent?

Tourette symptoms are usually strongest in the early teen years. Most patients improve as they get older, and their tics stop by late teens or early adulthood. However, for some people, Tourette’s is a lifelong condition.

Can People Control Their Tics?

“Many people with Tourette syndrome can temporarily overcome their urge to express a tic,” explains Dr. Kilbane. “For example, someone might successfully refrain from a tic during a work meeting, until they’re able to get to a private place.”

However, not all people with TS can control their tics. “People with true coprolalia are not in control of what they say and are aware that what they say might be offensive,” says Dr. Kilbane. “They don’t intend to hurt or offend anyone. Yet still they’re unable to stop the tic. This can cause the person to feel embarrassment and distress.”

How Is Tourette Syndrome Treated?

Many people with Tourette’s don’t need treatment if their tics are mild or don’t affect their daily life. When treatment is needed, options include medication and behavioral therapy. People with Tourette’s also often have ADHD, OCD or anxiety. Treating these other conditions can often help manage tics. “Each Tourette’s patient is unique, and what works for one person may not work for another,” says Dr. Kilbane.

Dr. Kilbane and her colleagues often see good results using habit reversal training, a type of therapy that can stop or reduce the frequency of an unwanted behavior by replacing it with a new behavior. Also, many medications can help effectively reduce tics.

In addition, she uses deep brain stimulation to treat refractory Tourette’s syndrome – a severe form of the disease that isn’t helped by other treatments. Small devices are implanted in the brain to deliver electrical impulses to relieve symptoms. University Hospitals was the first hospital in the country to perform a randomized, controlled clinical trial using deep brain stimulation to treat patients with refractory Tourette’s.

New Treatments in Development

Researchers are working on new treatments to help people with Tourette’s and other tic disorders, including:

• Neupulse: a wrist device that may reduce the intensity and frequency of tics.
• Ecopipam: a new medication being studied to reduce the severity of tics.

Related Links

The experts at UH Neurological Institute offer advanced diagnostics and treatment for a wide range of neurological conditions including movement disorders.