What is Tourette's syndrome - and how do you manage it?

What is Tourette's syndrome?

Tourette's syndrome is a neurological condition¹ - which means it affects the brain - that causes a person to make sounds and movements that they cannot control. These are called tics. Currently, there is no cure for Tourette's syndrome, but treatment can help manage the symptoms. Often, the symptoms develop in childhood or adolescence and sometimes they disappear over time.

The condition is more common amongst boys. Although the exact causes of Tourette's syndrome are unknown, research shows it is likely influenced by genetics, meaning it is inherited². People with Tourette's syndrome may also have other conditions, including tvångssyndrom (OCD) or attention deficit hyperactivity disorder (ADHD).

Tics are the main symptom of Tourette's syndrome. It's a common misconception that tics usually involve swearing. In fact, this only affects 1 in 10 people with Tourette's.

Tics can be physical, vocal or they can be a combination of both. Physical tics can include blinking, twitching, touching things, shoulder shrugging, eye rolling or other movements. Vocal tics can include whistling, coughing, making sounds, saying random words or phrases, repeating sounds or words, or swearing.

Stress, tiredness och ångest can make tics worse - and people with Tourette's may experience tics more often on some days. People with the condition may experience a strong urge before a tic - described as being like an itch or a sneeze. These are known as premonitory sensations.

Although some people can learn to control their tics for short periods, this can be difficult and exhausting.

There isn't a specific test to diagnose Tourette's syndrome, but scans may be carried out to make sure there is no other condition causing the tics. Your doctor may diagnose you with Tourette's syndrome if you've had several tics for at least a year, or they may refer you to a neurologist - a brain specialist.

Not everyone with Tourette's needs treatment, but it may be suggested to help someone gain control over their tics.

Specific types of behavioural terapi may help reduce tics, such as habit reversal training, which helps an individual become more aware of potential triggers so they can find different ways to relieve the urge³. A specialist may suggest exposure and response prevention (ERP), a therapy that encourages you to tolerate the urge to tic until it passes⁴. Medication may be recommended if the tics are severe.

Electrical impulse treatment

Recently, researchers developed a device worn on the wrist to help people control their tics⁵. One prototype - which delivers electrical pulses to reduce tics - was recently trialled by 121 people in the UK, including Capaldi.

The device was created after University of Nottingham scientists found that tics were reduced in people with Tourette's syndrome when the median nerve was electrically stimulated at the wrist. This was found to affect electrical activity in the brain known as brain oscillations, which in turn reduced the frequency and intensity of tics. The results of the trial of the device were promising, but the device is not yet available to the public⁶.

If you need advice, the charity Tourettes Action offers information and support.

1. Tourettes Action: What is Tourette Syndrome?

2. National Institutes of Neurological Disorders and Stroke: Tourette syndrome.

3. Pile et al: Interoceptive accuracy in youth with tic disorders: Exploring links with premonitory urge, anxiety and quality of life.

4. Wetterneck et al: An evaluation of the effectiveness of exposure and response prevention on repetitive behaviours associated with Tourette's Syndrome.

5. Morera Maiquez et al: A double-blind, sham-controlled, trial of home-administered rhythmic 10Hz median nerve stimulation for the reduction of tics, and suppression of the urge-to-tic, in individuals with Tourette syndrome and chronic tic disorder.
   

6. Morera Maiquez et al: Entraining movement-related brain oscillations to suppress tics in tourette syndrome.