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Medication for Tourette Syndrome

This is an introductory guide only. If you have questions about medication for Tourette Syndrome (TS), you should discuss them with a specialist who can take into account individual factors. Information about side effects given here is not intended to be comprehensive.

Medication can reduce symptoms and improve quality of life of people with TS when needed. Unfortunately side effects of the treatments are not uncommon and their effectiveness varies from person to person, so they are not beneficial for everyone who tries them. In an ideal world behavioural treatments  would more often be a first choice. Unfortunately specialised therapists are often not available which increases the likelihood of medication being offered. In some patients medication can be highly effective and a better solution than behavioural options.

Finding the right medication

Selecting treatment for TS is an individual process due to the wide range and severity of symptoms and the occurrence of associated conditions such as attention deficit hyperactivity disorder (ADHD), obsessive compulsive disorder (OCD) and depression. Clinicians need to work closely with patients and their families when deciding on the most appropriate medication, in order to balance potential risks and benefits of treatment with medication. The decisions that need to be made include:

  • whether or not to treat;
  • which symptoms to treat - tics or the other conditions such as ADHD or OCD
  • whether a combination of medications is necessary to treat the different symptoms.

Assessing the effectiveness of treatment is complicated by the fact that tics naturally ‘wax and wane’, meaning that periodically they get better and worse over time. Sometimes therapies appear to be working well but this may be a period in which tics are naturally less severe.

General rules for using medication to treat TS and related symptoms

Sometimes there can be different views about which symptoms are the main problem for example a child with TS may think the tics are the biggest problem, whilst the parents may be more concerned about behaviour in school. This requires discussion and agreement before treatment is started.

Treatments in TS usually follow the ‘start low, go slow’ rule (i.e. start at a low dose and increase the dose slowly). This means that side-effects, if they do occur, can be more easily recognised and controlled. It is also advisable to make just one change at a time. If too many changes are made quickly and the TS improves or gets worse, it is hard to know why.

Stopping treatments suddenly is usually not a good idea, however sometimes, this has to be done (e.g. if a person gets an acute reaction to a treatment). This should only be done in consultation with your doctor.

It can be useful to keep a diary of how you feel on each dose of medication or medication type. This means that you can look back and work out which treatment or combination worked best for you with the fewest side-effects.

When you go and see your doctor about TS, always bring your medication or prescription with you so that the doctor knows what you are taking.

Types of Medication

None of the options are addictive and there is no single drug that is clearly best for all patients. As the available drugs vary in how effective they are for each person with TS it can be necessary to try more than one option. Common types of medications used to treat TS are discussed below:

Drugs used to treat tics

The most commonly used medications for the treatment of tics are referred to as antipsychotics. This is because they are primarily marketed for treating psychotic conditions such as schizophrenia. However, as these drugs are increasingly being used for the management of non-psychotic conditions, this label is no longer appropriate and is likely to be changed in the future. There is no clinical link between psychosis and TS.

All antipsychotic drugs work by modifying the effect of dopamine on the brain, specifically by blocking dopamine receptors, mainly the D2 receptor. Dopamine has been strongly linked with TS and some of these drugs are the most useful medications for reducing tics.

Antipsychotic drugs can be further divided in to first, second and third generation. Although they all work by modifying dopamine effects, they differ in their side effect profile.

First generation antipsychotic drugs for tics.

These include haloperidol and pimozide. Their main side effects are neurological and include sudden stiffness and prolonged muscle contraction (known as acute dystonia), shaking and restlessness. These neurological effects are reversible when the drug is stopped. Long-term treatment can very occasionally cause another movement disorder called tardive dyskinesia (involuntary repetitive movements, different to tics). This risk is very small but the movements may occasionally persist after treatment is stopped.

Haloperidol was the first medication used to treat tics but is now less often prescribed than second and third generation drugs because of the risk of side effects. However, by keeping to a low dose, these side-effects can be avoided and haloperidol can be an effective and well-tolerated treatment for tics in some people.  

Pimozide was widely used in Europe for the treatment of tics as studies showed that it is an effective treatment and causes fewer neurological side-effects than haloperidol. Unfortunately it can cause problems in heart rhythm and its use declined. In fact, it is now known that many antipsychotic drugs in the first and second generation groups can potentially cause this effect on the heart. Patients should have a heart trace (ECG) before starting, shortly after starting and then at least every year.  Some common drugs (such as antibiotics) can make the effect of pimozide on the heart stronger, so care needs to be taken when other drugs are prescribed at the same time. You should always make sure that your doctor or pharmacist knows what other medication you are taking

Second generation antipsychotic drugs for tics  

These include risperidone, olanzapine, sulpiride and quetiapine. There is evidence from clinical trials that risperidone can be effective in controlling tics and it is widely used. Olanzapine, sulpiride and quetiapine are similar drugs but are used less often because there is less research evidence. Second generation  drugs are prescribed more often than first generation drugs because they are less likely to produce neurological side-effects. However, they can produce a different set of side-effects because of their influence on other brain chemicals in addition to dopamine. Importantly, they can cause the ‘metabolic syndrome’ which is weight gain and abnormal glucose and lipid (fat) metabolism. If not monitored this can lead to high blood pressure, diabetes and effects on the liver. Patients should have their weight and blood pressure monitored and their blood tested before and soon after starting medication and then at least once a year. Olanzapine is the drug that is most likely to cause this problem.

Third generation antipsychotic drugs for tics

Aripiprazole is the main drug in this category and is commonly used for TS. There is clinical trial evidence that it can be effective and it tends to be better tolerated than other options. Aripiprazole has a unique mechanism of action in that it can both block and stimulate dopamine receptors depending on how much naturally occurring dopamine there is around.  It has the advantage of being less likely to cause weight gain, neurological and cardiac side-effects. The side-effects from this drug are usually mild to moderate and temporary and include insomnia, drowsiness, fatigue, nausea and headache. Aripiprazole can also cause restlessness which can be very uncomfortable. If this happens the medication should be stopped. 

Other drugs for tics (non- antipsychotic)

Tetrabenazine reduces the effect of dopamine on the brain by a different mechanism than antipsychotics. This drug has been linked to side effects of fatigue, nausea, depression and insomnia. A newer version is now available and is being tested in TS in a clinical trial.

Clonidine works by acting on a different chemical system to dopamine by stimuating adrenaline receptors in the brain. Clonidine has been used for many years in the treatment of tics and also improves ADHD. It also is a way to avoid the side effects of antipsychotics so is frequently used in children. Most specialists feel it is not very effective in adults. Side effects may include drowsiness, sedation, headache, depression and dizziness. Clonidine was originally a blood pressure treatment. This means that people taking clonidine should have their blood pressure taken before they start and during treatment. Clonidine should not be stopped suddenly and must be reduced slowly in order to avoid a potentially dangerous increase in blood pressure. A newer drug called guanfacine, which works in a similar way to clonidine, is reported to have  fewer side effects than clonidine and is now also available in the UK for people under 18 years old.

Finally, topiramate is a drug for epilepsy and migraine that can reduce tics in some patients and does not act on the dopamine pathway. A clinical trial has shown it can be effective on its own or in addition to other anti-tic medication. However the evidence on topiramate is considered weak because of the small number of patients that took part in the clinical trial. Possible side effects include tingling, weight loss and depression. It should be avoided in women who may become pregnant.

Research drugs

There has been research on a drug that blocks the D1 rather than the D2 receptor called Ecopipam. It may be effective but further information is needed.

Medical versions of cannabis (cannabinoids) are often in the news for the treatment of various neurological and other conditions including certain forms of epilepsy. There has been preliminary research in TS which is promising but needs to be extended. Illegal cannabis contains hundreds of different chemicals, but medical versions contain two different important components in different ratios; CBD and THC. THC is the part that produces psychoactive effects in illegal cannabis, Some CBD preparations are available legally from health food shops in the UK but probably do not help tics. This has not been tested in scientific trials, and some patients have reported that these preparation have helped. Another current line of research is a new kind of drug that alters the action of the body’s own brain cannabinoids that are important in the basal ganglia circuits that control movement.

Drugs used to treat ADHD

There are a number of drugs used to treat ADHD including stimulants such as Ritalin, Concerta and Equasym. These are different forms of the same active drug, methylphenidate, which differ only in how and when the active drug is released. Methylphenidate is the most effective treatment for ADHD.

A commonly asked question about the treatment of ADHD in people who also have TS is whether or not the treatment for ADHD makes the tics worse. Tics vary over time and so it can be difficult to find out whether a change in treatment (such as adding a stimulant) was responsible for making tics worse or whether it was just a natural change in the severity of the TS which would have happened anyway. ADHD is often apparent at a younger age than tics, so tics may appear to start after ADHD medication has already been used. More recent studies and opinion suggest that drugs for ADHD do not generally lead to worsening of tics so then stimulants for ADHD can be used safely in children with tics.

Atomoxetine is a well-established but newer medication in the treatment of ADHD. A large trial showed that it is effective in children with TS and may even improve tics as well as ADHD.

Drugs used to treat OCD

The group of drugs used to treat depression known as SSRIs (Selective Serotonin Reuptake Inhibitors) are also effective for OCD, sometimes requiring high doses. Cognitive behavioural treatment used in combination with SSRIs is most effective. 

For further information about TS and co-occurring conditions visit our web page.

Further Information about medication for TS

In November 2017, Nottingham University held an open lecture with three speakers from the United States, all of whom are specialists in Tourette Syndrome. In this video, James T McCracken  M. D., Professor of Child Psychiatry Director, Division of Child & Adolescent Psychiatry, Dept of Psychiatry & Bio-Behavioural Sciences at UCLA, gives an overview of the role of medical treatments in the treatment of TS and co-occurring conditions.

Please note that the information about medication on the Tourettes Action’s website is for guidance only. You should seek advice from a medical professional if you have any questions or concerns regarding medication.

The original version of this information was written by Professor Hugh Rickards.

The latest update was by Dr Jeremy Stern, Dr Helen Simmons, Professor Eileen Joyce and Professor Andrea Cavanna, December 2018.

"Having a diagnosis has meant that I can access the help and support I need to be independent and happy"

 
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