Tourette's syndrome

Page last reviewed: 13/07/2011

Tourette's syndrome is a condition affecting the brain and nervous system (a neurological condition) that is characterised by involuntary, random sounds and movements, known as tics.

It usually begins in childhood.

Tics

Tics can be:

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

Tics can also be:

  • simple, involving moving only one muscle or uttering a single sound
  • complex, involving 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.

Read more about the symptoms of Tourette's syndrome.

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

Treating Tourette's syndrome

Some people with Tourette's syndrome only experience tics occasionally and do not require treatment.

When the tics are more frequent, there are several medications that have proved reasonably effective in helping to control them.

A type of psychotherapy known as behavioural therapy can also be effective in many people with Tourette's syndrome.

Read more about the treatment of Tourette's syndrome.

Associated conditions

Children who develop Tourette's syndrome will usually also have one or more other developmental or behavioural conditions. The two most commonly reported conditions are described below:

  • Obsessive compulsive disorder (OCD) is a condition that causes persistent obsessive thoughts and compulsive behaviour. For example, feeling compelled to constantly wash your hands because you are obsessed with the fear that you will catch a serious illness if you don't.
  • Attention deficit hyperactivity disorder (ADHD) is a behavioural condition that causes symptoms such as short attention span, being easily distracted and being unable to sit still because you are constantly fidgeting (hyperactivity).

In addition, children with Tourette's syndrome may have other behavioural problems, such as flying into sudden rages or engaging in inappropriate or anti-social behaviour with other children.

In many cases, these associated conditions and behavioural problems can be more disruptive and troublesome than Tourette's itself.

Read more about the complications of Tourette's syndrome.

Causes

The cause of Tourette's syndrome is unclear but it appears to be strongly associated with a part of the brain called the "basal ganglia", which plays an important role in regulating body movements.

In people with Tourette's syndrome the basal ganglia appears to "misfire", resulting in the tics associated with the condition.

Read more about the causes of Tourette's syndrome.

Who is affected by Tourette's syndrome?

Tourette's syndrome is a lot more common than most people realise, as it affects around 1 in every 100 people.

The symptoms usually begin at around the age of seven and become most pronounced during the teenage years.

Boys are more likely to be affected by Tourette's syndrome than girls. It is unclear why this is the case.

Outlook

Two thirds of people will experience a marked improvement in their symptoms, usually around 10 years after they first began. Many of these people will no longer require medication or therapy to control their tics.

For some people the Tourette symptoms become much less troublesome and frequent, while for others they can disappear entirely.

In the remaining third of people with Tourette's syndrome, their symptoms will persist throughout their life, but the symptoms will usually become milder as they grow older. This means their need for medication and therapy may pass over time.

Brain
The brain controls thought, memory and emotion. It sends messages to the body controlling movement, speech and senses.

Georges Gilles de la Tourette

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

Page last reviewed: 13/07/2011

Experiencing tics does not automatically mean that your child has Tourette's syndrome, as many children have tics for several months before growing out them.

The tics that are caused by Tourette's syndrome can be:

  • physical, such as the jerking of the head or blinking
  • phonic (making sounds), such as grunting

Tics can be further classified as

  • simple, involving moving only one muscle or uttering a single sound
  • complex, involving a series of physical movements or speaking a long phrase

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

Simple physical tics

Examples of simple physical tics include:

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

Simple phonic tics

Examples of simple phonic tics include:

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

Complex physical tics

Examples of complex physical tics include:

  • shaking of the head
  • hitting or kicking objects
  • jumping
  • shaking
  • touching themselves or others
  • copying the movements of other people - the medical term for this is "echopraxia"
  • making obscene gestures, such as giving somebody "the finger" - known as copropraxia

Complex phonic tics

Examples of complex phonic tics include:

  • repeating other people's phrases - known as "echolalia"
  • repeating the same phrase over and over again - known as "palilalia"
  • shouting swear words or inappropriate or words and phrases - known as "coprolalia"

While many people associate shouting swear words with Tourette's, it's actually a relatively uncommon symptom and only affects a minority of people with the syndrome.

Premonitory sensations

Most people with Tourette's syndrome find that they experience uncomfortable or unusual physical feelings before they have a tic and this feeling is then only relieved once they carry out the tic - much like an itch that can only be relieved by scratching it.

These types of feelings are known as premonitory sensations.

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 and sore throat that can only be relieved by grunting or by clearing your 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, you will probably find that their tics follow a set pattern. Tics tend to be worse during periods of:

  • anxiety
  • stress
  • tiredness
  • illness
  • nervous excitement

On the other hand, the tics tend to be calmer when the child is taking part in an enjoyable activity that involves a high level of concentration, such as:

  • reading an interesting book
  • playing competitive sports
  • playing a computer game

You may find that your child is able to control their tics to a certain extent when they are in a place where they would be particularly noticeable, such as a classroom or lecture hall. However, maintaining control over 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

It is always recommended that you contact your GP for advice if either you or your child starts having tics.

Many children have tics for several months before growing out of them, so the appearance of tics does not automatically mean that your child has Tourette's syndrome.

However, symptoms such as tics need further investigation and probably a referral to a doctor who specialises in conditions that affect the brain and nervous system (neurologist).

Page last reviewed: 13/07/2011

The cause of Tourette's syndrome is unknown. However, it is thought that the condition is linked to problems with the basal ganglia.

The basal ganglia

The basal ganglia are a group of specialised brain cells located deep inside the brain. These are involved in helping regulate the physical movements of the body.

Recent research suggests that the basal ganglia may play a more fundamental role in higher brain functions such as motivation and decision-making.

For example, at a very simple level, if you suddenly decide that the TV programme you are watching is boring, it appears to be your basal ganglia that prompts your body to pick up the remote and change the channel.

In people with Tourette's syndrome, it appears that tics arise when a temporary disruption takes place inside the basal ganglia and the decision-making process becomes scrambled. The person affected suddenly develops an unconscious urge or motivation to perform an action (the tic) that the conscious mind regards as both unwanted and unexplained.

Exactly what is going wrong with the basal ganglia is still a matter of debate. One theory is that excessive levels of a naturally occurring chemical called dopamine, which can have a powerful effect on the brain, could be responsible.

Alternatively, levels of dopamine could be normal but people who are affected by Tourette's syndrome are especially sensitive to its effects.

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

Underlying causes

Exactly what triggers the onset of Tourette's syndrome is unclear. There are several theories, which are outlined below.

Genetics

Genetics seems to play an important part in some cases of Tourette's syndrome, with it appearing to run in families.

Further evidence suggests that if one identical twin develops Tourette's syndrome there is around a one-in-two chance that the other twin will also develop the condition.

It may be that a genetic mutation disrupts the normal development of the brain, triggering the symptoms of Tourette's syndrome. A genetic mutation is when the instructions that are contained in all living cells become scrambled in some way.

Read more about genetics.

Childhood infection

Another theory is that Tourette's syndrome may be linked to a childhood infection by streptococcal bacteria (a type of bacteria that usually causes throat infections).

In an attempt to fight off the infection, the immune system produces antibodies. These antibodies may then interact with brain tissue, affecting the normal development of the brain.

Some children have developed the symptoms of Tourette's syndrome, as well as the symptoms of obsessive compulsion disorder (OCD), after a throat infection.

Some doctors have suggested that this may be a separate condition in its own right and have given it the name of "paediatric autoimmune neuropsychiatric disorders associated with streptococcal infections", or PANDAS for short.

The concept of PANDAS is controversial as research findings have been inconsistent. It may be the case that PANDAS is only responsible for a small minority of cases of Tourette's.

Further research is required to clarify the issue.

Brain
The brain controls thought, memory and emotion. It sends messages to the body controlling movement, speech and senses.
Genes
Genes contain information that you inherit from your parents, such as eye or hair colour. They are carried by chromosomes.

Plasticity

The human brain has a high degree of what neurologists call "plasticity". This means that the various networks and pathways between brain cells are not set in stone but can change and adapt over time into new networks and pathways.

It is thought that the reason many people grow out of Tourette’s syndrome is that their brain effectively "rewires" itself to compensate for the problems they have with their basal ganglia.

Once this rewiring is complete, symptoms either improve dramatically or vanish all together.

Page last reviewed: 13/07/2011

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

These include:

  • allergies, if they are sniffing and coughing
  • vision problems, if they are blinking more than usual

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

  • autistic spectrum disorder - a developmental disorder that causes problems with social interaction, learning and behaviour
  • dystonia - a condition that causes involuntary muscle spasms
  • Huntington's disease - a genetic condition that can cause a range of symptoms including muscle twitching

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

  • neurologist - a doctor who specialises in treating conditions that affect the brain and nervous system
  • psychiatrist - a doctor who specialises in treating mental health conditions
  • educational psychologist - a health professional who works with children who have learning, developmental or behavioural difficulties

To rule out other possible causes of your symptoms, your child might be referred for tests, such as eye tests or a skin prick test. A skin prick test is used to see if your child has an allergy. Small amounts of potentially allergic-causing substances, such as pollen, are placed onto the skin to see if there is a reaction.

Brain-imaging scans can also be used to check if there are any abnormalities with the brain and nervous system that could suggest a neurological cause of your child's symptoms other than Tourette's syndrome. Scans that can be used include:

Confirming the diagnosis

At present, there is no one test that can be used to diagnose Tourette's syndrome.

A diagnosis can only be made by assessing your child's symptoms to see if they follow the usual pattern that is associated with the condition.

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

  • Your child's symptoms are not being caused by other medical conditions, or any medication that you are taking.
  • Your child started experiencing tics before the age of 18.
  • Your child has had several physical tics and at least one phonic tic.
  • Your child's tics occur many times during the day, nearly every day.
  • Your child has been having tics for at least a year.

Tourettes Action

If your child is diagnosed with Tourette’s syndrome then a natural response is to find out as much as possible about the condition and what treatments and support are available.

A good place to start is to visit the website of Tourettes Support Ireland, which is the leading charity for people who have been affected by Tourette’s syndrome.

Page last reviewed: 13/07/2011

There are various treatment options available for Tourette's syndrome, which are described below.

Treatment plan

A treatment plan can involve one or more of the following:

  • Treatments that do not involve taking medication, such as relaxation therapy or behavioural therapy (sometimes called non-pharmacological treatments).
  • Medication. There are three types of medication: alpha2-adrenergic agonists, muscle relaxants and neuroleptics.
  • Surgery. Some recently developed surgical techniques can be used to treat some selected cases of Tourette's syndrome.

If your child's tics are relatively mild and infrequent, then they may only require behavioural therapy.

If their tics are more severe and disrupting their day-to-day activities then they will probably benefit from a combination of therapy and medication.

Surgery is usually only recommended as a "treatment of last resort" for patients with very severe symptoms that fail to respond to other treatment.

The doctor who is in charge of your child's care - usually a neurologist (a specialist in treating conditions that affect the nervous system) - will recommend what they think is the best treatment option but the final decision will be yours.

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

Behavioural therapy

Behavioural therapy is a widely used non-pharmacological treatment for Tourette's syndrome.

Behavioural therapy is a type of psychotherapy designed to change the pattern of your child's behaviour.

One type of behavioural therapy that has proved to be successful in treating Tourette's syndrome is called "habit reversal". Habit reversal is based on two main principles:

  • People with Tourette's syndrome are often unaware of their tics.
  • Tics are used to relieve uncomfortable feelings (the sensations that often occur before tics).

The first stage is to monitor the pattern and frequency of the tics and to 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 your child feeling stressed and anxious. Stress and anxiety often make tics worse.

Medication

Alpha2-adrenergic agonists

Alpha2-adrenergic agonists are usually recommended as the medication of choice to treat mild to moderate symptoms of Tourette's syndrome.

These types of medications are thought to stabilise levels of a type of chemical called norepinephrine inside the brain. This in turn is thought to decrease the possibility of the basal ganglia misfiring and triggering tics.

The widely used alpha2-adrenergic agonist in the treatment of Tourette's syndrome is called "clonidine".

Common side effects of clonidine include:

  • drowsiness
  • headaches
  • dizziness
  • fatigue
  • constipation
  • diarrhoea
  • a dry mouth
  • difficulties sleeping

These side effects are usually mild and should improve once your child's body gets used to the medication.

Muscle relaxants

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

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

If you are an adult with Tourette's syndrome who is being treated with muscle relaxants then you should not drive or use tools or machinery if you are feeling dizzy and drowsy. It is also recommended that you avoid drinking alcohol when taking muscle relaxants as that could make you feel very ill.

Neuroleptics

Neuroleptics are the most effective type of medication in terms of preventing tics. However, they do cause a wide range of side effects, so are recommended only if your child's symptoms are particular severe or fail to respond to other medications.

Neuroleptics work by blocking the effects of dopamine on the brain. Dopamine is one of the chemicals that are thought to be associated with tics.

There are two main types of neuroleptics:

  • typical neuroleptics, the first generation of neuroleptics, which were developed during the 1950s
  • atypical neuroleptics, a newer generation of neuroleptics that were developed during the 1990s

Atypical neuroleptics are usually recommended because they have less potential to cause side effects.

However, they are not suitable or effective for everyone.

Neuroleptics are given orally (as a tablet) or by injection.

Both typical and atypical neuroleptics have side effects, although not everyone will experience them, and their severity will differ from person to person.

The side effects of typical neuroleptics include:

  • drowsiness
  • shaking
  • trembling
  • muscle twitches
  • spasms

Side effects of both typical and atypical neuroleptics include:

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

Adults with Tourette's syndrome who are being treated with neuroleptics may also find that they have a decreased sex drive (loss of libido).

If your child is finding the side effects particularly troublesome, contact the doctor in charge of their care. There may be an alternative neuroleptic your child can take that they will tolerate.

Surgery

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

Two types of surgery used to treat Tourette's syndrome are described below:

Limbic leucotomy

A technique known as limbic leucotomy can be used to treat Tourette's syndrome. The technique involves a neurosurgeon (a surgeon who specialises in surgery of the brain and nervous system) using an electric current or a pulse of radiation to burn away a small part of the limbic system.

The limbic system is the structure in the brain responsible for some of the most important brain functions, such as emotions, memory and behaviour.

By burning away a small part of the limbic system, the surgeon is often able to "rewire" the brain and, in the process, fully or partially resolve conditions such as Tourette's syndrome.

Deep brain stimulation

A new technique known as deep brain stimulation (DBS) is now available as a treatment for Tourette's syndrome. Electrodes are permanently implanted in the parts of the brain that are known to be associated with Tourette's syndrome.

The electrodes are attached to small generators implanted elsewhere inside your 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.

The initial results of DBS have been encouraging, with some early treated patients having substantial tic reduction that lasted for over five years.

It appears that DBS is most effective when combined with behavioural therapy as described above.

However the use of DBS to treat Tourette's syndrome is still very much in the experimental stage and access to it is usually only available to people taking part in clinical trials.

Page last reviewed: 13/07/2011

Complications of Tourette's syndrome can include some psychological and behavioural problems, as well as learning difficulties. However, Tourette's syndrome does not usually affect a person's intelligence.

Obsessive compulsive disorder

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

OCD is a long-term (chronic) mental health condition that is usually associated with having obsessive thoughts and some compulsive behaviour.

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 is not left open
  • a desire for order and symmetry - for example, their toys have to be lined up on the shelf in one specific way, and if that order is disrupted, the child can become very upset
  • hoarding - keeping hold of objects that have no real value, such as bus tickets or flyers for takeaways
  • cleaning - constantly cleaning because they have an obsessive fear of disease and contamination: this often takes the form of compulsive hand-cleaning

Often a physical tic and compulsive behaviour can combine, so the child might be constantly picking up an object and the placing it down or repeatedly opening and closing a door.

OCD is treated using a combination of medication, such as the selective serotonin reuptake inhibitors (SSRIs) antidepressant, and therapy, such as the talking therapy cognitive behavioural therapy (CBT).

With treatment most people will experience an improvement in symptoms and some achieve a complete cure.

For more information, see the Health A-Z page on treating obsessive compulsive disorder.

Attention deficit hyperactivity disorder (ADHD)

Another common condition to affect children with Tourette's syndrome is attention deficit hyperactivity disorder (ADHD), which is thought to affect up to 70% of children with Tourette's.

ADHD is a behavioural condition that causes problems with issues such as attention span, concentration, the control of impulses and the ability to plan ahead.

Children with both Tourette's syndrome and ADHD usually have great difficulties focusing on specific tasks for a prolonged period of time and are often easily distracted.

For more information, see the Health A-Z topic on attention deficit hyperactivity disorder.

Behavioural problems

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

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

As a child grows older, this inappropriate behaviour can often take the form of saying 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 does not usually affect a person's intelligence but it can cause learning difficulties, particularly if a person also has attention deficit hyperactivity disorder (ADHD) or obsessive compulsive disorder (OCD).

Many people with Tourette's syndrome find it harder to learn through habit, for example when a child learns to read. This is because the part of the brain that controls habit learning is the basal ganglia, which is the part that is 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 adding or subtracting simple numbers, or reading and writing.

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.

Hyperactivity
Hyperactivity is a higher than normal level of activity and restlessness.

Content provided by NHS Choices www.nhs.uk and adapted for Ireland by the Health A-Z.

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