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Tourette's syndrome Content Supplied by NHS Choices
Introduction

Tourette's syndrome is a neurological condition (affecting the brain and nervous system), characterised by a combination of involuntary noises and movements called tics.

It usually starts during childhood and continues into adulthood. In many cases Tourette's syndrome runs in families and it's often associated with obsessive compulsive disorder (OCD) or attention deficit hyperactivity disorder (ADHD).

Tourette's syndrome is named after the French doctor, Georges Gilles de la Tourette, who first described the syndrome and its symptoms in the 19th century.

Tics

Tics can be:

  • vocal (sounds) - such as grunting, coughing or shouting out words
  • physical (movements) - such as jerking of the head or jumping up and down

They can also be:

  • simple - making a small movement or uttering a single sound
  • complex - making a series of physical movements or speaking a long phrase

Most people diagnosed with Tourette's syndrome have a combination of physical and vocal tics, which can be both simple and complex.

The tics don't usually pose a serious threat to a person's overall health, although physical tics, such as jerking of the head, can often be painful. However, children and adults with Tourette's syndrome may experience associated problems, such as social isolation, embarrassment and low self-esteem.

Read more about the signs and symptoms of Tourette's syndrome.

What causes Tourette's syndrome

The cause of Tourette's syndrome is unknown. However, it's thought to be linked to problems with a part of the brain known as the basal ganglia, which helps regulate body movements.

In people with Tourette's syndrome, the basal ganglia 'misfire', resulting in the characteristic tics.

Read more about the causes of Tourette's syndrome.

Treating Tourette's syndrome

There's no cure for Tourette's syndrome, but treatment can help to control the symptoms.

If your child is diagnosed with Tourette's syndrome, their treatment plan may involve a type of psychological therapy, known as behavioural therapy.

Two types of behavioural therapy have been shown to reduce the impact and intensity of tics in some people. These are described below.

  • Habit reversal therapy - involves monitoring the pattern and frequency of the tics and identifying any sensations that trigger them. The next stage is to find an alternative, less noticeable method of relieving the sensations that cause a tic (known as premonitory sensations). This is known as a competing response.
  • Exposure with response prevention (ERP) - involves increasing exposure to the urge to tic to suppress the tic response for longer. This works on the theory that you get used to the feeling of needing to tic until the urge, and any related anxiety, weakens.

When the tics are more frequent or severe, medication can help to improve them, such as alpha2-adrenergic agonists, muscle relaxants and dopamine antagonists.

Surgery may be recommended in particularly severe cases that don't respond to treatment. However, surgery for Tourette's syndrome is rare.

Read more about how Tourette's syndrome is treated.

Associated conditions

Children with Tourette's syndrome will usually also have one or more other developmental or behavioural conditions.

The two most commonly reported conditions are:

  • obsessive compulsive disorder (OCD) - a condition characterised by unwanted persistent obsessive thoughts and useless compulsive behaviour, for example, a compulsion to keep washing your hands due to a fear of catching a serious illness
  • attention deficit hyperactivity disorder (ADHD) - a behavioural condition with symptoms such as a short attention span, being easily distracted, a tendency to be impulsive and not being able to sit still because you are constantly fidgeting (hyperactivity)

Children with Tourette's syndrome may also have other behavioural problems, such as flying into a sudden rage, or behaving inappropriately or anti-socially with other children.

In many cases, these associated conditions and behavioural problems can be more disruptive and troublesome than the tics of Tourette's syndrome, and are the main focus of treatment.

Read more about the conditions associated with Tourette's syndrome.

Outlook

In around two-thirds of cases of Tourette's syndrome, symptoms improve significantly (usually around 10 years after they started).

In many of these cases, medication or therapy will no longer be needed to control the person's tics. Some people's symptoms become less frequent and troublesome, or they disappear completely.

In one third of people with Tourette's syndrome, the symptoms continue throughout their life. However, they usually become milder as the person gets older. This means the need for medication and therapy may pass over time.

Who is affected by Tourette's syndrome

Tourette's syndrome is more common than most people realise. It affects around one in every 100 people.

The symptoms of Tourette's syndrome usually begin at around seven years of age and become most pronounced at 10-11 years.

For unknown reasons, boys are more likely to be affected by Tourette's syndrome than girls.


Symptoms of Tourette's syndrome

If your child has tics, it doesn't necessarily mean they have Tourette's syndrome.

Children often develop tics before growing out of them after several months. These are known as transient tics.

For tics to be classified as Tourette's syndrome, they have to be present for at least a year and include at least one vocal tic.

Tics can be:

  • vocal (sounds) - such as grunting, coughing or shouting out words
  • physical (movements) - such as jerking of the head or jumping up and down

Tics can also be:

  • simple - for example, making a small movement or uttering a single sound
  • complex - for example, making a series of movements or speaking a long phrase

Most people diagnosed with Tourette's syndrome have a combination of physical and vocal tics, which can be both simple and complex.

Simple vocal tics

Examples of simple vocal tics include:

  • grunting
  • clearing the throat
  • coughing
  • screaming
  • sniffing
  • squeaking
  • blowing

Simple physical tics

Examples of simple physical tics include:

  • blinking
  • jerking the head
  • twitching the nose
  • teeth grinding 
  • rolling the eyes
  • twisting the neck
  • rotating the shoulders

Complex vocal tics

Examples of complex vocal tics include:

  • repeating other people's phrases (echolalia)
  • repeating the same phrase over and over again (palilalia)
  • swearing loudly or shouting inappropriate words and phrases (coprolalia)

Swearing is often associated with Tourette's syndrome, but it's actually a fairly uncommon symptom affecting a minority of people with the syndrome.

Complex physical tics

Examples of complex physical tics include:

  • shaking the head
  • hitting or kicking objects
  • jumping
  • shaking
  • touching themselves or others
  • copying the movements of others (echopraxia)
  • making obscene gestures, such as giving someone 'the finger' (copropraxia)

Premonitory sensations

Most people with Tourette's syndrome experience uncomfortable or unusual feelings before having a tic. These feelings are known as premonitory sensations.

Premonitory sensations are only relieved after the tic has been carried out, in a similar way to how an itch can only be relieved by scratching it.

Examples of premonitory sensations include:

  • a burning feeling in the eyes that feels as if it can only be relieved by blinking
  • tension in a muscle that can only be relieved by twitching or stretching the muscle
  • a dry or sore throat that can only be relieved by grunting or by clearing the throat
  • an itchy joint or limb that can only be relieved by twisting the joint or limb

Pattern of tics

If your child has Tourette's syndrome, their tics will probably tend to follow a set pattern. They may be worse during periods of:

  • stress
  • anxiety
  • tiredness
  • illness
  • nervous excitement
  • relaxation after a busy day 

On the other hand, the tics are often reduced when they're doing an enjoyable activity involving a high level of concentration, such as reading an interesting book or playing competitive sports.

You may find your child is able to control their tics when they're in situations where they would be particularly noticeable, such as in a school classroom. However, controlling tics can be difficult and tiring over prolonged periods of time.

Many children with Tourette's syndrome often experience a sudden 'release' of tics after trying to suppress them - for example, after returning home from school.

When to seek medical advice

You should contact your GP if either you or your child starts experiencing tics.

Many children have tics for several months before growing out of them, so a tic doesn't necessarily mean your child has Tourette's syndrome.

However, symptoms such as tics do need to be investigated.


Causes of Tourette's syndrome

The cause of Tourette's syndrome is unknown. However, it's thought to be linked to problems with an area of the brain known as the basal ganglia.

Basal ganglia

The basal ganglia are a group of specialised brain cells located deep inside the brain. The cells help regulate the body's movements.

Research suggests the basal ganglia may also play a role in higher brain functions such as motivation and decision making.

In people with Tourette's syndrome, it appears tics are the result of a temporary problem occuring inside the basal ganglia which disrupts the decision-making process.

The person suddenly develops an unconscious urge to perform an action (the tic) that the conscious mind regards as both unwanted and unexplained.

It's not known what actually goes wrong with the basal ganglia. One theory suggests excessive levels of a naturally occurring chemical called dopamine, which can have powerful effects on the brain, could be responsible.

Alternatively, the dopamine levels could be normal in people with Tourette's syndrome, but they may be particularly sensitive to its effects.

Brain imaging studies have also shown the structure of the basal ganglia is different in people with Tourette's syndrome. However, it's unclear whether these changes are due to a dopamine imbalance or sensitivity, or the cause of it.

Possible triggers

As with the cause of Tourette's syndrome, it's not known what triggers it. There are several theories, which are outlined below.

Genetics

Genetics appears to play a part in some cases of Tourette's syndrome, as it often runs in families.

Further evidence suggests if one identical twin develops Tourette's syndrome, there's about a one in two chance the other twin will also develop it.

A genetic mutation may disrupt the normal development of the brain, triggering the symptoms of Tourette's syndrome. A genetic mutation is where the instructions contained in all living cells become scrambled in some way.

Read more about genetics.

Childhood infection

Another theory is Tourette's syndrome may be linked to a childhood infection by streptococcal bacteria (bacteria that usually cause a sore throat).

In an attempt to fight off the infection, the immune system produces antibodies (proteins). The antibodies may interact with brain tissue, affecting the brain's functioning.

Following a throat infection, some children have developed the symptoms of Tourette's syndrome, as well as the symptoms of obsessive compulsive disorder (OCD).

Some doctors believe this may be a separate condition in its own right and have called it 'paediatric autoimmune neuropsychiatric disorders associated with streptococcal infections', or PANDAS for short.

However, the concept of PANDAS is controversial because research findings have been inconsistent. It may be that it's only responsible for a small number of Tourette's syndrome cases. Further research is needed to clarify the issue.

In the meantime, the same treatments are recommended as those used in ordinary tic disorders and Tourette's syndrome.


Diagnosing Tourette's syndrome

The first stage in diagnosing Tourette's syndrome is to rule out other possible causes of your child's symptoms.

Other possible causes include:

  • allergies - if they're sniffing and coughing
  • vision problems - if they're blinking more than usual

It's also necessary to rule out other conditions that can cause tic-like behaviours, such as:

  • autistic spectrum disorder - a developmental disorder which causes problems with social interaction, learning and behaviour, and may cause mannerisms or stereotypies (repetitive movements) that can be mistaken for tics
  • dystonia - a condition that causes involuntary muscle spasms

To help rule out these conditions, your child may be referred to a number of experts, such as:

  • a neurologist - a doctor who specialises in treating conditions affecting the brain and nervous system
  • a psychiatrist - a doctor who specialises in treating mental health conditions
  • an educational or clinical psychologist - healthcare professionals who work with children who have learning, developmental or behavioural difficulties

Brain-imaging scans, such as computerised tomography (CT) scan and magnetic resonance imaging (MRI) scan, can also be used to check for any brain or nervous system abnormalities suggesting a neurological cause for your child's symptoms, other than Tourette's syndrome. However, most children with tics or Tourette's syndrome don't require a brain scan.

Confirming the diagnosis

There's currently no single test for Tourette's syndrome. A diagnosis can only be made by assessing your child's symptoms to see whether they follow the pattern usually associated with the syndrome.

A confident diagnosis of Tourette's syndrome can usually be made if your child:

  • has symptoms that are not being caused by other medical conditions or any medication they are taking
  • started having tics before 18 years of age
  • has had several physical tics and at least one vocal tic
  • has tics that occur many times during the day, virtually every day
  • has been having tics for at least a year

Tourettes Action

If your child is diagnosed with Tourette's syndrome, you may want to find out as much as you can about it, including available treatments and support.

A good place to start is Tourettes Action, a UK charity for people with the syndrome.


Treating Tourette's syndrome

There are several treatment options available for people with Tourette's syndrome.

The various treatments for Tourette's syndrome are outlined below. You can also read a summary of the pros and cons of the treatments for Tourette's syndrome, allowing you to compare your treatment options.

Treatment plan

The first and most important part of treatment for Tourette's syndrome is to ensure you, your child and, if needed, your child's teachers, friends and other family members all have good information and knowledge about the condition. This includes:

  • being able to explain Tourette's syndrome to others if asked about tics
  • understanding that tics are not 'put on'
  • understanding that tics come and go and sometimes they may be better than at other times
  • knowing that having tics doesn't generally stop you doing anything you want to do
  • knowing that treatments may help to relieve tics, but are unlikely to make them go away completely
  • being aware that most people 'outgrow' tics by the time they reach adulthood

Next, the treatment plan for tics could involve one or more of the following:

  • treatments that don't involve taking medication - such as behavioural therapy
  • medication - the three types of medication that may be prescribed are alpha2-adrenergic agonists, muscle relaxants and dopamine antagonists
  • surgery - in extremely rare, severe cases, surgical techniques may be suitable

Non-medical treatments alone, such as behavioural therapy, may be needed if the tics are relatively mild and infrequent.

In cases where a person's tics are more severe and disrupt day-to-day activities, a combination of therapy and medication may be recommended.

Surgery is usually only recommended as a 'treatment of last resort' if the tics are particularly severe and fail to respond to other treatment.

The doctor in charge of your or your child's care, usually a neurologist (a brain and nervous system specialist), will recommend what they think is the best treatment option. However, the final decision will be yours.

If your child is old enough to understand fully the implications of their decision, they'll be asked to decide what treatment they prefer.

Read more about consent to treatment.

Detecting and treating mental health problems associated with Tourette's syndrome, such as obsessive compulsive disorder (OCD), attention-deficit hyperactivity disorder (ADHD), depression and anxiety, is often seen as more important than treating the tics.

Behavioural therapy

Behavioural therapy is a widely used non-medical treatment for Tourette's syndrome. It's a type of psychological treatment designed to change the pattern of your or your child's behaviour.

Habit reversal

Habit reversal is a type of behavioural therapy that has proved successful in treating Tourette's syndrome. It's based on the following two principles:

  • people with Tourette's syndrome are often unaware of their tics
  • tics are used to relieve uncomfortable feelings, called premonitory sensations, that build up before tics

The first stage is to monitor the pattern and frequency of the tics, and identify any sensations that are triggering them. The next stage is to find an alternative, less noticeable method of relieving the premonitory sensations instead of a tic. This is known as a competing response.

For example, your child may experience an unpleasant sensation in their throat that causes them to grunt. Therefore, the next time your child feels the unpleasant sensation, they are asked to take a series of deep breaths rather than grunting, to try to relieve the sensation.

Habit reversal is often combined with relaxation therapy. Relaxation techniques, such as deep breathing or visualisation (thinking about something pleasant as a distraction), can help prevent feelings of stress and anxiety, which can often make tics worse.

Exposure and response prevention (ERP)

Exposure and response prevention (ERP) involves increasing exposure to the urge to tic in order to suppress the tic response for longer. This works on the theory that you get used to the feeling of needing to tic until the urge, and any related anxiety, decreases in strength.

Medication

Alpha2-adrenergic agonists

Alpha2-adrenergic agonists are usually recommended for treatment of mild to moderate symptoms of Tourette's syndrome.

This type of medication is thought to stabilise levels of a brain chemical called norepinephrine. This is thought to decrease the risk of the basal ganglia misfiring and triggering tics.

Clonidine is the alpha2-adrenergic agonist widely used to treat Tourette's syndrome.

Common side effects of clonidine include:

These side effects are usually mild and should improve when the body gets used to the medication.

Muscle relaxants

Muscle relaxants have been shown to be effective in helping control tics, particularly physical tics.

Baclofen and clonazepam are two muscle relaxants that are sometimes used to treat Tourette's syndrome. You or your child may feel drowsy and dizzy after taking these.

Adults being treated with muscle relaxants shouldn't drive or use tools or machinery if they feel dizzy or drowsy. You should also avoid drinking alcohol while taking muscle relaxants because it could make you feel very ill.

Dopamine antagonists

Dopamine antagonists are the most effective type of medication for preventing tics. However, they can cause a wide range of side effects, so will only be recommended in cases where the symptoms are particularly severe or fail to respond to other medications.

Dopamine antagonists are given orally (as a tablet) or by injection. They work by blocking the effects of dopamine on the brain. Dopamine is a chemical in the brain thought to be associated with tics.

There are two main types of dopamine antagonists. They are:

  • first generation dopamine antagonists - developed in the 1950s
  • a newer generation of dopamine antagonists - developed in the 1990s

Both the older and newer dopamine antagonists have side effects, although not everyone experiences them, and their severity differs from person to person.

The side effects of the older dopamine antagonists include:

  • drowsiness
  • shaking
  • trembling
  • muscle twitches
  • spasms

Side effects of both the older and newer dopamine antagonists include:

  • weight gain
  • blurred vision
  • constipation
  • a dry mouth

The newer generation of dopamine antagonists are usually recommended because they're less likely to cause side effects. However, they aren't suitable or effective for everyone.

Adults with Tourette's syndrome who are being treated with dopamine antagonists may also experience a loss of libido (decreased sex drive).

If your child has been prescribed a dopamine antagonist, and they're finding the side effects particularly troublesome, you should contact the doctor in charge of their care. There may be an alternative your child will be able to tolerate better.

Aripiprazole is the newest type of dopamine medicine that seems to be helpful and appears to have fewer side effects. Although there hasn't yet been a large clinical trial of this medicine for Tourette's syndrome, it has been used successfully in many people with tics.

An experienced doctor may be able to offer aripiprazole as a treatment option.

Surgery and deep brain stimulation (DBS)

Surgery is usually regarded as a 'treatment of last resort' for people with severe Tourette's syndrome that has failed to respond to other treatments. It's usually only recommended for adults.

The aim of surgery is to make a small 'break' in some of the pathways in the brain that may be responsible for tics. The region of the brain that is usually operated on is called the limbic system, although several different areas have been target=""=""=""=""=""=""=""=""=""=""=""=""=""ed.

Surgery has largely been replaced with deep brain stimulation (DBS). This is a relatively new technique that, like surgery, has been used to treat very severe cases of Tourette's syndrome where other treatments have failed.

DBS involves permanently implanting electrodes (small metallic discs) in the parts of the brain known to be associated with Tourette's syndrome.

The electrodes are attached to small generators that are implanted elsewhere in the body. The generators send electronic pulses to the electrodes, which stimulate different parts of the brain. By stimulating certain areas of the brain the symptoms of Tourette's syndrome can often be controlled.

Initial results of DBS have been encouraging, with some people showing a substantial reduction in their tics lasting for more than five years. DBS appears to be most effective when combined with behavioural therapy (see above).

However, both limbic system surgery and DBS have only been used on a small number of people with Tourette's syndrome, and there's not yet sufficient evidence to justify their use as standard treatments for the syndrome.

Read more about clinical trials into Tourette's syndrome.


Problems associated with Tourette's syndrome

Tourette's syndrome is often associated with psychological and behavioural problems, as well as learning difficulties.

However, Tourette's syndrome doesn't usually affect a person's intelligence.

Obsessive compulsive disorder

Up to 60% of children with Tourette's syndrome also develop obsessive compulsive disorder (OCD).

OCD is a long-term mental health condition where a person has obsessive thoughts and compulsive behaviours.

In children with Tourette's syndrome, the symptoms of OCD usually take the following forms:

  • constantly checking things - for example, checking windows are locked or the door isn't left open
  • a desire for order and symmetry - for example, their toys have to be lined up on the shelf in a specific way (if the order is disrupted, the child may become very upset)
  • hoarding - holding on to objects with no real value, such as bus tickets or flyers for takeaways
  • cleaning - constantly cleaning due to an obsessive fear of disease and contamination (this often takes the form of compulsive hand-washing)

A physical tic and compulsive behaviour may be combined. For example, the child might constantly pick up an object and then place it down, or repeatedly open and close a door.

OCD is treated using a combination of medication, such as selective serotonin reuptake inhibitors (SSRIs) and psychological therapy, such as behavioural therapy.

With treatment, most people's symptoms will improve and some people will achieve a complete cure.

Read more about treating OCD.

Attention deficit hyperactivity disorder (ADHD)

Attention deficit hyperactivity disorder (ADHD) is another condition that often affects children with Tourette's syndrome. It's thought to affect up to 70% of children with the syndrome.

ADHD is a behavioural condition causing problems with attention span, ability to control impulses, and ability to concentrate and plan ahead.

Children with Tourette's syndrome and ADHD usually find it very difficult to focus on specific tasks for a prolonged period of time and are often easily distracted.

Read more about treating ADHD.

Behavioural problems

Other behavioural problems that can affect children with Tourette's syndrome include:

  • irritability
  • anxiety
  • antisocial behaviour
  • flying into sudden rages
  • self-harming behaviour (less commonly)
  • inappropriate behaviour to others

As a child gets older, this inappropriate behaviour can often take the form of making inappropriate sexual remarks or acting in a sexually aggressive manner.

These types of problems often improve once a child begins treatment for Tourette's syndrome and their tics start to be better controlled.

Learning difficulties

Tourette's syndrome can be associated with learning difficulties, particularly if a person also has ADHD or OCD.

Many people with Tourette's syndrome find it difficult to learn through habit (this is how a child usually learns to read, for example). This is because the basal ganglia is the part of the brain that controls habit learning, and is also the part most associated with Tourette's syndrome.

Therefore, children with Tourette's syndrome may have difficulty mastering skills and activities that other children pick up as a matter of routine, such as reading, writing and simple maths (adding and subtracting).

Some children with Tourette's syndrome may require additional specialised educational support. Your local education authority (LEA) can arrange an assessment of your child's educational requirements before drawing up a plan to meet their needs.

Read more about special educational needs (SEN).


"The urge to perform the tic is overwhelming"

Joanna has had tics all her life and was diagnosed with Tourette's syndrome in her 30s. She describes what it is like living with the syndrome, the effects medication had on her and how she can now manage without medication.

 
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