Tourette syndrome

What is Tourette syndrome?

Tics are sudden, rapid and recurring movements or sounds. Motor tics may include blinking, facial movements, head jerks, shoulder shrugs or more complex sequences. Vocal tics may include throat clearing, sniffing, coughing sounds, small noises, words or phrases.

Tourette syndrome involves several motor tics and at least one vocal tic, although they do not have to occur at the same time. The tics begin before the age of 18 and have been present for more than a year, even though their form and frequency may change. One tic may disappear as another emerges, and tics can continue into adulthood.

Uttering swear words or socially inappropriate expressions as tics is called coprolalia. It affects a minority of people and does not define Tourette syndrome. Most tics take the form of more common movements and sounds that occur involuntarily and repeatedly.

What does a tic feel like?

Many people experience a premonitory bodily urge: pressure behind the eyes before blinking, tension in the throat before making a sound, or restlessness in part of the body before a movement. The tic often brings brief relief. Some children only begin to recognise the urge over time, and not everyone can describe it clearly.

A tic can often be suppressed for a while, but doing so requires concentration. The urge may build in the meantime. When the person is alone again or feels safe, the tics may become more noticeable. This can explain why a child hardly tics at school but has many tics at home, or why an adult expends considerable effort during a meeting and experiences more tics afterwards.

Being able to suppress a tic briefly does not make it voluntary. A tic is not chosen simply because it occurs in particular situations or changes when attention shifts.

Tics change over time

Tics often wax and wane. They may change in location, sound, rhythm and complexity, and there may be periods with few tics. Tiredness, stress, anticipation, excitement and strong emotions can affect them, although the variation does not always have a simple explanation.

Stress does not cause Tourette syndrome. It can make existing tics more noticeable, while concentration, movement or feeling at ease may reduce them for some people. For others, tics become more apparent during an activity or when they are excited about something they enjoy. Looking at the pattern over time is more useful than searching for a single cause behind each tic.

Other people’s reactions can become more burdensome than the tics themselves. Repeated comments, imitation or demands to stop may increase both self-consciousness and tension. A clear, matter-of-fact explanation of tics can reduce misunderstandings at school, at work and in relationships.

Tourette syndrome and OCD

OCD involves obsessions and compulsions. Some people have both OCD and Tourette syndrome, while others have tics without OCD or OCD without tics.

A simple tic often follows a bodily urge and brings brief relief. A compulsion is usually performed in response to doubt, a feared consequence, a rule, or a sense that something is wrong or incomplete. The person may be trying to obtain certainty, prevent harm or make an action feel right.

The distinction can become less clear with complex tics and compulsions driven by bodily sensations. A touch may begin as a tic and then be repeated according to a rule. A movement may both ease tension and create symmetry. The experience before and after the action is often more informative than its appearance alone.

Three terms with different meanings

Tic-related OCD is a diagnostic specifier in DSM-5-TR. It is used when a person with OCD currently has, or has previously had, a tic disorder. The tics and compulsions may be clearly separate.

Tourettic OCD is a clinical and research term for a narrower pattern of overlap. Tic-like features, bodily urges, just-right experiences and compulsive rules are closely intertwined in the same actions.

Tourette syndrome is diagnosed from the pattern of motor and vocal tics over time. OCD is not part of the diagnostic criteria, but the two conditions can occur together.

Everyday life with Tourette syndrome

Some tics are subtle, while others cause pain, exhaustion, disruption or unwanted attention. Complex tics may take time or make certain activities difficult. The same person can go through periods when tics have little effect on daily life and periods when they are far more intrusive.

OCD, ADHD, anxiety and sleep problems commonly occur alongside Tourette syndrome and may be more burdensome than the tics themselves. Separating these difficulties helps clarify what is caused by tics, what is driven by doubt or rules, and what relates to attention, restlessness or social experiences.

Treatment and support for Tourette syndrome

For mild tics, knowledge, understanding from other people and practical adjustments may be sufficient. Treatment becomes particularly relevant when tics cause pain or injury, disrupt school, work or relationships, or require considerable energy to hide.

Habit reversal training (HRT) and the Comprehensive Behavioral Intervention for Tics (CBIT) are evidence-based behavioural treatments. The person learns to identify the early urge and use a competing movement that cannot be performed at the same time as the tic. CBIT also addresses situations and responses from other people that influence the tics.

Exposure and response prevention (ERP) is also used for tics, but differently from its use in OCD. In tic treatment, the person practises staying with the bodily urge without immediately performing the tic. In OCD treatment, ERP addresses obsessions, doubt and the actions used to obtain certainty or relief.

Medication may be relevant for severe or painful tics and is assessed by a doctor or psychiatrist. Treatment priorities depend on which difficulties are most burdensome, whether these involve tics, ADHD, OCD, anxiety or sleep problems.