What is Tourette’s syndrome?
Tourette’s syndrome is a neurological condition (affecting the brain and nervous system) that is characterised by a combination of involuntary noises and movements called tics.
The syndrome usually starts during childhood and continues into adulthood. In many cases it runs in families and it is 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 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 do not 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 is 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 is 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 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.
When the tics are more frequent or severe, a number of medications can help to improve them, such as alpha2-adrenergic agonists, muscle relaxants and dopamine antagonists.
Surgery may be recommended in very severe cases that do not respond to treatment. However, surgery for Tourette's syndrome is very rare.
Read more about how Tourette’s syndrome is treated.
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.
In around two-thirds of cases of Tourette's syndrome, a person's symptoms will 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 the remaining third of people with Tourette’s syndrome, the symptoms persist throughout their life. However, they will usually become milder as the person gets older. This means their need for medication and therapy may pass over time.
Tourette’s syndrome symptoms
If your child has tics, it does not necessarily mean that 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 who are 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:
- clearing the throat
Simple physical tics
Examples of simple physical tics include:
- 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 is actually a fairly uncommon symptom that affects a minority of people with the syndrome.
Complex physical tics
Examples of complex physical tics include:
- shaking the head
- hitting or kicking objects
- touching themselves or others
- copying the movements of others (echopraxia)
- making obscene gestures, such as giving someone 'the finger' (copropraxia)
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:
- nervous excitement
- relaxation after a busy day
On the other hand, the tics are often reduced when they are doing an enjoyable activity that involves a high level of concentration such as reading an interesting book or playing competitive sports.
You may find that your child is able to control their tics when they are 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 doctor if either you or your child starts experiencing tics.
Many children have tics for several months before growing out of them, so a tic does not necessarily mean your child has Tourette's syndrome.
However, symptoms such as tics do need to be investigated.
Tourette’s syndrome causes
The cause of Tourette’s syndrome is unknown. However, it is thought to be linked to problems with an area of the brain known as the 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 that 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 that tics are the result of a temporary problem that occurs inside the basal ganglia and 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 is not known what actually goes wrong with the basal ganglia. One theory suggests that 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 that the structure of the basal ganglia is different in people with Tourette’s syndrome. However, it is unclear whether these changes are due to a dopamine imbalance or sensitivity, or the cause of it.
As with the cause of Tourette’s syndrome, it is not known what triggers it. There are several theories, which are outlined below.
Genetics appears to play a part in some cases of Tourette’s syndrome, as it often runs in families.
Further evidence suggests that if one identical twin develops Tourette’s syndrome, there is about a 1 in 2 chance that the other twin will also develop it.
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 where the instructions contained in all living cells become scrambled in some way.
Read more about genetics.
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.
Some doctors believe that 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 is 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 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, 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 that affect 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 can also be used to check for any brain or nervous system abnormalities that could suggest a neurological cause for your child’s symptoms, other than Tourette’s syndrome. However, most children with tics or Tourette’s syndrome do not require a brain scan.
Scans that can be used include a:
- computerised tomography (CT) scan – where a series of X-rays are taken to build up a detailed 3D image of the brain
- magnetic resonance imaging (MRI) scan – where strong magnetic fields are used to produce a detailed image of the inside of the brain
Confirming the diagnosis
There is 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 that is 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 you 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
Treatment for Tourette’s syndrome
There are several treatment options available for people with Tourette's syndrome.
The first and most important part of treatment for Tourette's syndrome is to ensure that 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 that sometimes they may be better than at other times
- knowing that having tics does not 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 do not 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 very 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 very 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 will be asked to decide what treatment they would 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 is a widely used non-medical treatment for Tourette’s syndrome. It is a type of psychological treatment that is designed to change the pattern of your or your child’s behaviour.
Habit reversal is a type of behavioural therapy that has proved successful in treating Tourette’s syndrome. It is 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.
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 that is 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 have been shown to be effective in helping control tics, particularly physical tics.
Adults being treated with muscle relaxants should not 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 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 – that were developed in the 1950s
- a newer generation of dopamine antagonists – that were 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:
- muscle twitches
Side effects of both the older and newer dopamine antagonists include:
- weight gain
- blurred vision
- a dry mouth
The newer generation of dopamine antagonists are usually recommended because they are less likely to cause side effects. However, they are not 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 are finding the side effects particularly troublesome, you should contact the doctor in charge of their care. There may be an alternative that 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 has not 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 is 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 targeted.
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 that are 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 that lasted 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 is not yet sufficient evidence to justify their use as standard treatments for the syndrome.
Read more about clinical trials.
Complications of Tourette’s syndrome
Tourette's syndrome is often associated with 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 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 is not 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 that have 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-cleaning)
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 is 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.
Other behavioural problems that can affect children with Tourette's syndrome include:
- 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.
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 it 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 education needs.
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.