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Tourette syndrome information

Tourette syndrome (also known as Gilles de la Tourette syndrome) is a condition in which people have uncontrollable movements or sounds. These are called tics. It usually appears in younger people and some find that their tics get better as they grow older. 

What causes Tourette's and who can get it?

Tourette's is a neurodevelopmental disorder. Developmental means something that happens during development, usually in children or teenagers. It is neurodevelopmental because it affects the nervous system. Tics affect one in 100 young people.

The condition occurs because of a development problem in a very small part of the brain. This doesn't mean that people with Tourette's have useless brains it just means sometimes they do things – like a quick movement or sound – that they are not in control of. These are called tics. Perhaps it helps to think of tics as being a bit like brain hiccups!

Doctors don't really know what causes Tourette's. It often runs in families so the cause is likely to be genetic and something that is passed down in your family.

What are the signs and symptoms of Tourette's?

The main symptoms of Tourette's are tics. These are certain quick and sudden actions that cannot be controlled by the person.

Tics are completely involuntary - you cannot stop yourself from doing a tic without feeling an increasing urge to do it again. A person may be able to suppress a tic for a short time but most find it hard to suppress them for more than an hour.

There are two types of tics; motor tics and vocal tics.

Motor tics are sudden, sharp and twitch-like body movements like shrugging shoulders, head movements, blinking or leg movements.

Vocal tics are tics that involve the voice such as grunting, coughing, stuttering, barking, saying obscene words for no reason and repeating what people have said.

Tics can be described as simple or complex. Simple tics involve one muscle group such as twitches or blinking. Complex tics involve more than one muscle group so include things like repeating what someone has said or twirling around.

Tics can change over time. You might have a period of time when a tic gets worse or better. They can fade over time or be replaced by another tic.

Other problems linked to Tourette's syndrome

Lots of people don't understand Tourette's, they can react to a tic as if a person has behaved badly. They don't realise that a person can't control their tic and that it is not their fault at all.

The reactions of other people can be very stressful for people with Tourette's.

Young people can get bullied because of their condition. This can make them feel upset, depressed or even angry that they are being teased because of something they can't control.

Many people with Tourette's also suffer from other conditions such as obsessive-compulsive disorder (OCD), Attention Deficit Hyperactivity Disorder (ADHD) and rage attacks.

How is it normally diagnosed and treated?

If you have longstanding motor and vocal tics it is likely you have Tourette's. This can be confirmed by your doctor, who will ask you about your tics and any other problems you experience.

Tics can be sometimes be helped by medicine but not always. You may have to try a few before finding the one that works for you.

There are lots of things that your doctor will suggest trying before prescribing medication for your tics:

Exercise

Exercise can help people with Tourette's to get a tic out of their system. Lots of different activities can help. Some people find running around is useful, others prefer to hit a punch bag. For some, controlled sports like martial arts really help.

Therapy

There are lots of different types of therapy available. Some therapy can help people to cope with the problems that are linked with Tourette's, like depression, and can help their families cope with it too.

Behaviour therapy can help some people: techniques called habit referral therapy, and also a special form of cognitive behaviour therapy.

Relaxation

Relaxation therapy can help people who have a tic that gets worse when they are anxious and stressed.

Support groups

It can be useful to go to support groups where you can meet other people your age with Tourette's and share advice and tips. It can be a relief to talk to other people who understand what it is like to have a tic.

Some of these techniques work for some people and not others so it is always to try a few different things to see what helps you the most.

Can it be prevented?

Tourette's can't be prevented but there are lots of things you can to try to control your condition and minimise your tics.

When should I seek medical help?

If you have tics it is a good idea to go to see your doctor. They can give you advice on how to deal with your condition and put you in touch with other specialists and local organisations that may be able to help.

Looking forward

For a lot of young people with Tourette's the most troublesome period of their condition is between the ages of eight and thirteen. Most then improve as they get older and many people lose most or all their tics completely.

More information

  • For more help and advice on Tourette's talk to your doctor or go to the Tourettes Action website.

 

Last reviewed by Great Ormond Street Hospital: February 2013