Tourette syndrome in adults: diagnosis, treatment and living with tics

Tourette syndrome is a neurological condition characterised by tics. The NHS describes tics as repetitive sounds (vocal tics) or movements (motor tics) that you do not choose to make and cannot control. Vocal tics may include whistling, sniffing, clearing the throat a lot, making animal sounds or repeating a sound, word or phrase, and swearing, which the NHS describes as rare. Motor tics may include rolling the eyes or blinking, shrugging the shoulders, jerking or twitching movements, tensing stomach muscles and jumping.

Tics can be triggered by different things including stress, excitement or tiredness, according to the NHS.

Because symptoms usually start in childhood, most adults diagnosed with Tourette syndrome have had tics for many years. Some were never assessed, some were told the tics would pass, and some were diagnosed as children and are now seeking adult services. The NHS says a GP may think you have Tourette syndrome if tics started before the age of 18, have been happening for 1 year or more and involve both sounds and movements, and that the GP may ask when tics started, how often they occur, whether anyone in the family has been diagnosed and whether there are other conditions like OCD or ADHD.

Tourettes Action sets out the diagnostic basis as multiple motor tics and at least one vocal tic present for at least 12 months. It says TS can only be diagnosed by observing and evaluating symptoms, with rating scales to help assess severity, and that some doctors may use an EEG, MRI, CT scan or certain blood tests to rule out conditions that might be confused with TS such as epilepsy, autism, dystonia and Sydenham's chorea.

Because symptoms usually start in childhood, tics that appear for the first time in adulthood are unusual and are worth a medical assessment, so that other causes can be checked for. Tell your GP if tics began recently and suddenly.

Tourettes Action says health professionals who can diagnose TS are neurologists, psychiatrists and paediatricians, and that GPs are the gatekeepers who refer you to a consultant for further assessment. It suggests keeping a diary of the movements and noises you notice and, if possible, filming the tics so you can show your GP and consultant. It also says there is no universal pathway to diagnosis, and that some people are referred to local services first and others can be referred directly to a specialist.

The NHS says the GP may refer you to a specialist such as a neurologist, who may use tests such as an EEG, MRI scan or blood test to check whether your symptoms are caused by Tourette syndrome or another condition.

Tourettes Action provides a list of UK consultants who specialise in diagnosing and treating TS, which includes both NHS and private consultants. If you choose a private assessment, ask for the report to be shared with your GP so that your NHS records and any prescribing stay consistent.

The NHS says Tourette syndrome cannot be cured but, if tics cause problems, treatment may be offered to help manage them. This may include behavioural therapy to help you learn different ways to manage the tics, and medicine if behavioural therapy has not helped. The type of medicine depends on whether you also have ADHD or OCD, and the NHS says medicines can cause side effects that your doctor should discuss with you.

Tourettes Action sets out the same ladder in more detail. It lists behavioural and cognitive therapies, medication to reduce the frequency or intensity of tics for a period of time, emerging digital therapies and, for very severe TS resistant to all other treatment, deep brain stimulation, which it says is still at the research stage. It states that some treatments are not for everyone and that each is approximately 50% effective, so choices should be individual. It also says that there is no scientific evidence to date that supports diet or complementary therapies for tics, which matches the NHS comment that there is little evidence that herbs and supplements help.

Self-management helps. The NHS suggests a consistent daily routine with lots of physical activity, a calm regular bedtime routine, avoiding stressful situations as much as possible because stress can make tics worse, and learning about the condition.

The NHS notes that people with Tourette syndrome often have OCD or ADHD. Tourettes Action has a dedicated page on co-occurring symptoms and says tics are the primary symptom of TS, yet a large proportion of people with TS also have other difficulties.

The NHS says the type of medicine offered depends on whether you also have ADHD or OCD, so it is worth asking for a joined-up assessment rather than treating each condition in isolation.

Tourettes Action says TS is considered a disability under UK law, which prohibits people with the condition being discriminated against because of it, and refers to the Equality Act 2010. It also says employment should not be a barrier to a career, though symptoms can make it hard to work regular hours or in some fields, and that benefits may be available if you cannot work or face extra costs from a long-term health condition.

In practice, reasonable adjustments at work might include a private space for tics, flexible hours, understanding colleagues and information for managers. Tourettes Action runs online and in-person support groups, helpdesk and information on employment, benefits and the Care Act assessment for adults.

Most tics are not dangerous, but see a GP promptly if tics change suddenly, if tics cause injury or severe pain such as neck strain, if there is a sudden onset of tics in adulthood, or if you feel very low or distressed. If you are in crisis, contact NHS 111 or contact Samaritans, and call 999 for a medical emergency.

Do not stop prescribed medicines without discussing it with your prescriber, because some need to be reduced gradually.