Tourette syndrome: what it is, symptoms, causes and treatment

Tourette syndrome is a condition that causes tics. The NHS describes tics as sudden, repetitive sounds or movements. Tourettes Action, a UK support and research charity, describes it as a genetically determined neurological condition, covering a wide spectrum of symptoms.

The NHS tics page says that Tourette's syndrome is the term used when tics have lasted for more than a year. Plenty of children have tics at some point, and the NHS stresses this does not always mean they have Tourette syndrome.

Tics are not the same as habits or bad behaviour. The NHS says tics are movements or sounds the person does not choose to make and cannot control.

The NHS lists vocal tics such as whistling, sniffing, clearing the throat a lot, making animal sounds, and repeating a sound, word or phrase. Swearing is described as rare. Motor tics include rolling the eyes, blinking, shrugging the shoulders, jerking or twitching, tensing the stomach muscles and jumping.

Tics can be triggered by stress, excitement or tiredness, according to the NHS. The NHS tics page adds that they tend to get worse if they are talked about or focused on, and that they often start with an unpleasant build-up sensation, an urge, relieved by the tic, which can sometimes be partly suppressed.

Tics tend to come and go in waves. The NHS says they are normally most severe from around 8 years of age through the teenage years, and usually begin to improve after puberty.

• Blinking, eye rolling or grimacing

• Shoulder shrugging or head jerking

• Throat clearing, sniffing or grunting

• Repeating sounds, words or phrases

• An urge or tension that builds before the tic

• Tics that change over time and worsen with stress or tiredness

The NHS says symptoms of Tourette syndrome usually start around the age of 6 and can get more noticeable around age 10, and that it is more common in boys than girls. Tics in general are fairly common in childhood and typically first appear at around 5 years of age, according to the NHS tics page. Lots of children have tics at some point, and this does not always mean they have Tourette syndrome.

The NHS tics page says tics are not usually serious, do not damage the brain and normally improve over time. In most cases they improve or stop completely, sometimes lasting just a few months but often coming and going over several years.

For parents, the NHS suggests trying to ignore the tic and not talking about it too much, because drawing attention to it may make it worse. It also says not to tell a child off when a tic occurs, and to reassure them that everything is okay and there is no reason to feel embarrassed. If your child finds school difficult, talk to their teacher; it may help if they are allowed to leave the classroom when tics are particularly bad.

The NHS says Tourette syndrome cannot be cured, but treatment may be offered if tics cause problems. Mild tics do not always need treatment. Self-help tips such as avoiding stress and tiredness are often useful, according to the NHS tics page.

Behavioural therapy is often recommended as one of the first treatments. The NHS describes habit reversal therapy, in which the person learns about their tics, notices the urge and learns a new response, such as stretching the arms instead of shrugging. Comprehensive behavioural intervention for tics (CBiT) and exposure and response prevention are also used. These usually need several sessions and work best if you keep using them afterwards.

If therapy has not helped, medicine may be offered. The NHS says neuroleptics, also called antipsychotics, are the main medicines for tics, with examples including risperidone, pimozide and aripiprazole. Clonidine may reduce tics and help ADHD symptoms at the same time. Botulinum toxin injections can relax particular muscles but the effect lasts up to 3 months. All carry a risk of side effects, which the doctor should discuss.

Deep brain stimulation has been used in a few cases of severe Tourette syndrome. The NHS says uncertainties remain about its effectiveness and safety, so it is considered only in a small number of adults with severe tics that have not responded to other treatments.

The NHS says it is not known what causes Tourette syndrome. You are more likely to have it if your mother or father has it. The NHS tics page says tics are thought to relate to changes in the parts of the brain that control movement, that they can run in families, and that there is likely to be a genetic cause in many cases.

The NHS notes that people with Tourette syndrome often have other conditions, such as obsessive compulsive disorder (OCD) or attention deficit hyperactivity disorder (ADHD). These can affect daily life as much as tics do, so an assessment should look at them too.

The NHS tics page also says tics can sometimes be triggered by illegal drugs such as cocaine or amphetamines, and are occasionally caused by other conditions such as cerebral palsy or Huntington's disease.

Neither the NHS Tourette syndrome page nor the tics page describes it as something passed on by contact. Tourettes Action describes it as a genetically determined neurological condition, and the NHS says you are more likely to have it if your mother or father has it.

See a GP if you think you or your child has Tourette syndrome. The NHS says the GP may ask when the tics started, how often they happen, whether anyone in the family has been diagnosed, and whether there are other conditions such as OCD or ADHD.

The NHS says a GP should be able to diagnose a tic from a description and, if possible, from seeing it. Recording a short video can help, but the NHS warns not to draw attention to the tic while filming because that can make it worse.

The GP may refer you to a neurologist or a paediatrician. The NHS says a specialist may use tests such as an EEG, MRI scan or blood test to check whether another condition is causing the symptoms.

The NHS uses "tics" for the individual movements or sounds, and "Tourette syndrome" for the condition when particular features are present. The table brings together what the two NHS pages say.

The NHS suggests a consistent daily routine with lots of physical activity, and a calm, regular bedtime routine without phones or other devices before bed. It says to avoid stressful situations where possible because stress can make tics worse.

For children, the NHS suggests thinking about telling school so staff understand and can offer support, and notes that it may help if a child is allowed to leave the room when tics are bad. In the workplace, speak to an employer about help if tics make work difficult.

Tourettes Action offers online and face-to-face support groups and information on education and employment. The NHS says there is little evidence that herbs and supplements help with symptoms.

Tics can cause pain or injury. The NHS says to see a GP if tics hurt, cause emotional or social problems, interfere with school or work, or come with anger, depression or self-harm.

The NHS says you do not always need to see a GP for mild tics that are not causing problems. See a GP if you are concerned about your or your child's tics, you need support or advice, or the tics occur very regularly or become more frequent or severe.

The NHS also lists tics that cause emotional or social problems such as embarrassment, bullying or social isolation, tics that cause pain or discomfort (some can cause a person to accidentally hurt themselves), tics that interfere with daily activities, school or work, and tics that come with anger, depression or self-harm. If anyone is in immediate danger of harming themselves, call 999.

On the NHS, assessment usually starts with the GP and may lead to a paediatrician or neurologist, with psychological services for behavioural therapy. The NHS says you may be referred to a specialist psychological treatment service if a doctor feels therapy might help.

Some families choose a private neurologist, paediatrician or psychologist for assessment or therapy. Ask whether the clinician has experience of tic disorders, whether co-occurring ADHD or OCD will be assessed, and how any medicine would be monitored.