What is Tourette syndrome?
Tourette syndrome is a neurological disorder. It causes repeated, involuntary physical movements and vocal outbursts. The exact cause is unknown.
Tourette syndrome is the most severe kind of tic syndrome. Tics are involuntary muscle spasms. They consist of abrupt intermittent twitches of a group of muscles. The most frequent forms of tics involve:
- throat clearing
- shoulder movements
- head movements
According to the National Institute of Neurological Disorders and Stroke, about 200,000 people in the United States exhibit severe symptoms of Tourette syndrome. As many as 1 in 100 Americans experience milder symptoms. The syndrome affects males nearly four times more than females.
What are the symptoms of Tourette syndrome?
Symptoms can vary from one person to another. They usually appear between the ages of 3 and 9, starting with small muscle tics in your head and neck. Eventually, other tics may appear in your trunk and limbs.
People diagnosed with Tourette syndrome often have both a motor tic and a vocal tic. The symptoms tend to worsen during periods of excitement, stress, or anxiety. They’re generally most severe during your late teen years.
According to the Mayo Clinic, tics are classified by type, as in motor or vocal. Further classification includes simple or complex tics. Simple tics usually involve only one muscle group and are brief. Complex tics are coordinated patterns of movements or vocalizations that involve several muscle groups.
|Simple motor tics||Complex motor tics|
|eye blinking||smelling or touching objects|
|eye darting||making obscene gestures|
|sticking the tongue out||bending or twisting your body|
|nose twitching||stepping in certain patterns|
|Simple vocal tics||Complex vocal tics|
|hiccupping||repeating your own words or phrases|
|grunting||repeating other people’s words or phrases|
|coughing||using vulgar or obscene words|
What causes Tourette syndrome?
Tourette is a highly complex syndrome. It involves abnormalities in various parts of your brain and the electrical circuits that connect them. An abnormality may exist in your basal ganglia, the part of your brain that contributes to your control of motor movements.
Chemicals in your brain that transmit nerve impulses may also be involved. These chemicals are known as neurotransmitters. They include dopamine, serotonin, and norepinephrine.
The cause of Tourette is unknown and there’s no way to prevent it. Researchers believe that an inherited genetic defect may be the cause. But they have yet to identify the specific genes directly related to Tourette. Still, family clusters have been identified. These clusters lead researchers to believe that genetics play a role for some people with Tourette.
How is Tourette syndrome diagnosed?
Your doctor will ask you about your symptoms. The diagnosis requires both one motor and one vocal tic for at least one year. Some conditions may mimic Tourette, so your doctor may order imaging studies, such as an MRI, CT, or EEG. But these imaging studies aren’t required for making a diagnosis. People with Tourette often have other conditions, as well, including:
- attention deficit hyperactivity disorder (ADHD)
- obsessive-compulsive disorder (OCD)
- a learning disability
- a sleep disorder
- an anxiety disorder
How is Tourette syndrome treated?
If your tics aren’t severe, you may not need treatment. But if they are severe or lead you to harm yourself, several treatments are available. Your doctor may also recommend treatments if your tics worsen during adulthood.
Your doctor may recommend behavioral therapy or psychotherapy. This involves one-on-one counseling with a licensed mental health professional. Behavioral therapy includes awareness training, competing response training, and cognitive behavioral intervention for tics.
This type of therapy can also help ease symptoms of ADHD, OCD, and anxiety. Your therapist may also use the following during psychotherapy sessions:
- relaxation techniques
- guided meditation
- deep breathing exercises
You may find group therapy helpful. You’ll receive counseling with other people in the same age group who are also dealing with Tourette syndrome.
No medications can cure Tourette syndrome. However, your doctor may prescribe one or more of the following drugs:
- haloperidol (Haldol), fluphenazine, tetrabenazine, or other neuroleptic drugs: These can help to block or dampen dopamine receptors in your brain and help control your tics. Common side effects include weight gain and mental fogginess.
- onabotulinumtoxina (Botox): The injections may help control simple motor and vocal tics. This is an off-label use of onabotulinumtoxinA.
- methylphenidate (Ritalin). The stimulate medication and others can help to reduce the symptoms of ADHD without increasing your tics.
- clonidine: The blood pressure medication or other similar drugs can help control rage attacks and support impulse control. This is an off-label use of clonidine.
- fluoxetine (Prozac): This and other antidepressants can help control obsessive-compulsive behavior.
Off-label drug use means that a drug that’s been approved by the FDA for one purpose is used for a different purpose that hasn’t been approved. However, a doctor can still use the drug for that purpose. This is because the FDA regulates the testing and approval of drugs, but not how doctors use drugs to treat their patients. So, your doctor can prescribe a drug however they think is best for your care.
Deep brain stimulation is another form of treatment available for people with severe tics. For people with Tourette the effectiveness of this kind of treatment is still under investigation.
Your doctor may implant a battery-operated device in your brain to stimulate parts that control movement. Alternatively, they may implant electrical wires in your brain to send electrical stimuli to those areas. This method has been useful in some people with tics deemed very difficult to treat. But you should talk to your doctor about the potential risks and benefits for you.
Why is support important?
Living with Tourette syndrome can make you feel alone and isolated. Your inability to control outbursts and tics may make you feel reluctant to participate in normal activities. But there is support.
To cope with Tourette syndrome, you should take advantage of resources available to you. For example, talk to your doctor and ask for information about local support groups. You might also consider group therapy.
Support groups and group therapy may help you cope with depression and social isolation. Meeting and establishing a bond with those who have the same condition can improve feelings of loneliness. You’ll hear their personal stories, including their triumphs and struggles, and receive advice that you can incorporate in your life.
If you attend a support group, but feel it isn't a right match, don’t be discouraged. You may have to attend different groups until you find the right one.
If you have a loved one living with Tourette syndrome, you can join a family support group and educate yourself. The more you know about the condition, the more you can help your loved one cope. The Tourette Association of America (TAA) can help you find local support.
As a parent, you should be an advocate for your child. This includes notifying their teachers of the condition. Some children with Tourette syndrome are bullied by their peers. Educators can play a role in helping other students understand your child's condition, which may stop bullying and teasing.
Tics and involuntary actions can also distract your child from schoolwork. Talk to the school about allowing your child extra time to complete tests and examinations.
What is the long-term outlook?
Like many people with Tourette syndrome, you may find that your tics improve in your late teens and early 20s. Your symptoms may even stop spontaneously and entirely in adulthood. However, even if your Tourette symptoms decrease with age, you may continue to experience and need treatment for related conditions, such as depression, panic attacks, and anxiety.
Tourette syndrome doesn’t affect your intelligence or life expectancy.