What Is Tourette's Syndrome?
Tourette's syndrome is a problem with the nervous system that causes people to make sudden movements or sounds, called tics, that they can't control. For example, someone with Tourette's might blink or clear their throat over and over again. Some people may blurt out words they don't intend to say.
Treatments can control tics, but some people don’t need any unless their symptoms really bother them.
About 100,000 Americans have full-blown Tourette's syndrome, but more people have a milder form of the disease. It often starts in childhood, and more boys than girls get it. Symptoms often get better as children grow up. For some people, they go away completely.
Tourette's has been linked to different parts of the brain, including an area called the basal ganglia, which helps control body movements. Differences there may affect nerve cells and the chemicals that carry messages between them. Researchers think the trouble in this brain network may play a role in Tourette's.
Doctors don't know exactly what causes these problems in the brain, but genes probably play a role. It's likely that there is more than one cause.
People who have family members with Tourette's are more likely to get it themselves. But people in the same family may have different symptoms.
The main symptom is tics. Some are so mild they're not even noticeable. Others happen often and are obvious. Stress, excitement, or being sick or tired can make them worse. The more severe ones can be embarrassing and can affect your social life or work.
There are two types of tics:
Motor tics involve movement. They include:
Vocal tics include:
- Barking or yelping
- Clearing your throat
- Repeating what someone else says
Tics can be simple or complex. A simple tic affects one or just a few parts of the body, like blinking the eyes or making a face.
A complex one involves many parts of the body or saying words. Jumping and swearing are examples.
Before a motor tic, you may get a sensation that can feel like a tingle or tension. The movement makes the sensation go away. You might be able to hold your tics back for a little while, but you probably can't stop them from happening.
Doctors aren’t sure why, but about half of people with Tourette's also have symptoms of attention deficit hyperactivity disorder (ADHD). You may have trouble paying attention, sitting still, and finishing tasks.
Tourette’s can also cause problems with:
Getting a Diagnosis
If you or your child has symptoms of Tourette's, your doctor may want you to see a neurologist, a specialist who treats diseases of the nervous system. There aren't any tests for the condition, but they'll ask you questions, like:
- What did you notice that brought you here today?
- Do you often move your body in a way you can’t control? How long has that been happening?
- Do you ever say things or make sounds without meaning to? When did it start?
- Does anything make your symptoms better? What makes them worse?
- Do you feel anxious or have trouble focusing?
- Does anyone else in your family have these kinds of symptoms?
Your doctor may do imaging tests of your brain to rule out other conditions that have symptoms like those of Tourette's. They might include:
- MRI. It uses powerful magnets and radio waves to make pictures of organs and structures inside your body.
- CT scan. It's a powerful X-ray that makes detailed images of your insides.
Questions for Your Doctor
- How long will these symptoms last? Will they ever go away?
- Do I need any more tests?
- What kind of specialists do I need to see?
- Do I need any treatment?
- Do the treatments have any side effects?
- If I have children, what are the chances they will have Tourette’s?
If your child has Tourette’s, you may also want to ask how long their tics might last or what you can do to help them deal with their symptoms at home and at school.
Many times, tics are mild and don't need to be treated. If they become a problem, your doctor may prescribe medicine to help them. It can take a while to find the right dose that helps control tics but avoids side effects, so be patient as you and your doctor work through it.
Medications can include:
- Haloperidol (Haldol), fluphenazine (Prolixin), and pimozide (Orap), which work on a brain chemical called dopamine to control tics.
- Clonidine (Catapres) and guanfacine (Tenex, Intuniv)), high blood pressure drugs that can also treat tics.
- Fluoxetine (Prozac), paroxetine (Paxil), sertraline (Zoloft), and other antidepressants, which can relieve anxiety, sadness, and obsessive-compulsive symptoms.
Along with medicine, you may want to consider talk therapy. A psychologist or counselor can help you learn how to deal with the social issues your tics and other symptoms may cause.
Behavior therapy may also help. A specific kind, called habit-reversal training, teaches you how to recognize that a tic is coming and then move in a way that stops it.
Taking Care of Yourself
Often the hardest part of living with Tourette's is dealing with the embarrassment or frustration of having tics you can't control. While you're getting help from your doctor, you can do a few other things to feel better:
Get support. Your family, friends, health care team, or a support group can help you meet the challenges of Tourette's.
Stay active. Play sports, paint, or volunteer. These activities will take your mind off your symptoms.
Relax. Read a book, listen to music, meditate, or do yoga. Low-key activities you enjoy can combat the stress that can lead to tics.
Educate yourself. Learn everything you can about your condition so you'll know what to do when you have symptoms.
If your child has Tourette’s, talk to their school about it. You can give staff the facts about the condition and see what kind of support they can give them, like extra tutoring or smaller classes.
Fitting in socially also can be hard for a child with the disease. Help them practice ways to handle teasing or comments from other kids.
What to Expect
In most cases, kids grow out of their tics by their late teens or early 20s. A few will have them for the rest of their lives, but their symptoms may get better as they get older.
For more information on Tourette’s syndrome or to find others who are facing its challenges, visit the web site of the national Tourette Syndrome Association.