Medications in Tourette Syndrome
Please note: this page if for information purposes only. If you have any specific questions about your medication, you should discuss this with your TS specialist before undertaking any changes.
Tourette Syndrome (TS) is a neuro-behavioural disorder with a variety of symptoms that can lead to problems in everyday life. Therefore, for some people, medications to reduce the symptoms are an effective way to increase their quality of life. Unfortunately, side effects are common with these drugs meaning that sometimes, pharmacological treatment is not the most appropriate. Clinicians therefore need to work closely with patients and their families when deciding about drug treatments, especially when it comes to balancing potential risks and benefits. The types of decisions that need to be made include:
- Whether or not to treat?
- When to start treatment?
- Which treatment to chose?
- Which dose to use?
- How quickly to increase or decrease the treatment?
- When to stop the treatment?
Finding the right treatment for Tourette's is often a long and complicated process due to the wide range and severity of symptoms and the occurrence of associated conditions such as ADHD, OCD and depression. Tics are also known to naturally ‘wax and wane’ meaning that they periodically they get better and worse over time. Therefore, sometimes therapies appear to be working well, but this may be coincidental with a period in which tics are naturally less severe.
General rules for using medications to treat TS and related symptoms
Medications do not treat the underlying cause of TS but they can treat some of the symptoms. There are a number of general rules that clinicians use in deciding on drug therapies. Firstly, the most important thing to find out is which symptoms are the most problematic in order to aim treatment at them accordingly. Sometimes families and clinicians disagree about which symptoms are the main problem (ie. the child with TS may think that the tics are the biggest problem and the parents may think that behaviour or concentration in school are the biggest problems). This area requires sensitive discussion and agreement before treatment is started.
Treatments in TS should 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 recognized and that it is easier to tell the difference between effects of the treatment and underlying fluctuations in the TS symptoms. It is also advisable to make just one change at a time. If too many changes are made too quickly and the TS improves or gets worse, it is hard to know which change was responsible.
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) but this should only be done in consultation with your doctor. Drugs in the SSRI group should not be stopped suddenly as this can lead to withdrawal symptoms.
It can be very useful to record 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.
Finally, when you go and see your doctor about TS, always bring your medications or prescription with you so that the doctor knows exactly what you are taking and can give you the best advice.
Type of Medication
There are many types of medication available for tics and associated conditions however no single drug has been discovered that can treat all tics in all sufferers. Common types of medications used to treat TS are discussed below:
• Neuroleptics
These drugs work by blocking dopamine receptors in the brain and include drugs regarded as the most useful in ameliorating tics. Generally speaking, the more effective the drug is in blocking dopamine activity, the better the treatment. Dopamine has been strongly linked with TS – more information can be found here. Examples of drugs in this group include Haloperidol, Sulpiride, Risperidone, Pimozide, Olanzapine and Quetiapine.
It is generally agreed that these medications are likely to reduce tics. However, these types of drugs can also block other important signalling pathways in the brain such as cholinergic, serotonergic and alpha adrenergic transmission. This may lead to unpleasant side effects including sudden stiffness and prolonged muscle contraction (acute dystonia), shaking, restlessness and drowsiness. Some of these side effects may persist for a while after treatment is stopped.
Medicines in this group may also affect a person’s emotional state (for instance, make them feel sad or tired). Longer term treatment with these drugs can very occasionally cause another type of movement disorder called tardive dyskinesia (involuntary repetitive movements). The risk of this is small but it may happen more commonly with haloperidol than with the other neuroleptics.
Haloperidol is reported to reduce tics in 78-91% of cases but is associated with more side effects than any other neuroleptic meaning that for some, this drug is not appropriate to use. Olanzapine and quetiapine are generally less likely to lead to side effects but the evidence for their beneficial effects is less clear. Pimozide is widely used in Europe for the treatment of tics and at least two good studies show this drug is an effective treatment. Pimozide works by blocking a certain dopamine receptor known as D1 and is sometimes regarded as a ‘cleaner’ drug than Haloperiodol as it causes fewer side effects. However, it has been associated with problems in heart rhythms and therefore patients should have a heart tracing (ECG) before use. This should be repeated shortly after starting treatment and at intervals thereafter. Some quite common drugs (such as antibiotics) can make the effect of Pimozide stronger so great care needs to be taken when other drugs are prescribed at the same time. Another drug in this catergory is Fluphenazine which is also thought to have fewer side effects than Haloperidol and work effectively.
• Atypical Antipsychotics
These types of drug are more selective dopamine signalling blockers, however they are also known to affect serotonin - an important signalling chemical in the brain. Again, this may also cause significant side effects. Drugs in this category include Risperidone, Clozapine, Olanzapine, Quetiapine and Aripiprazole.
Risperidone has been investigated extensively with many studies reporting positive effects – one such study reporting a 28% reduction in tics. Risperidone may also have a positive effect on other co-morbid conditions associated with Tourette’s such as obsessive compulsive behaviour and agression. Side effects however can include fatigue and somnolence, emotional disturbance, nausea, vomiting, sleep problems and weight gain.
Clozapine is a weaker dopamine blocker than other drugs and therefore may be less effective in treating tics, however it is reported to be beneficial in some studies. Olanzapine has been shown to reduce tic severity by as much as 30% and have fewer side effects than other drugs. This drug is also thought to have a beneficial effect on ADHD and aggression but has been linked with causing weight gain.
Aripiprazole is another drug that has become more popular in recent years. This drug has a unique mechanism of action as it partially stimulates the dopamine D2 receptor as well as having an effect on other receptors in the brain. Many studies have reported that this drug is highly effective in relation to tic reduction as well as improving behavioural symptoms. Side effects from this drug are usually mild to moderate and transient including insomnia, fatigue, nausea, headaches and tremor. As these side effects are usually mild, this drug is often used for young people with Tourette’s.
• Other drugs
There are also several other drugs that can be used to treat TS that do not fall neatly into the categories previously described. Benzamides (for example Sulpride and Tiapride) are thought to be effective in reducing tics – some studies suggest these drugs have a beneficial effect in around 60% of patients but side effects can include drowsiness and depression. These drugs could also be described as neuroleptics. Tetrabenazine is another dopamine antagonist that reduces the amount of dopamine signalling. This drug is also thought to be effective but has been linked to side effects including fatigue, nausea, depression and insomnia.
Other drugs such as Clonidine work by stimulating the alpha-2 adrenergic system which inhibits the release of noradrenaline. Clonidine has been used for many years in the treatment of tics, even though the evidence for its effectiveness is not all that strong (it is thought to work well in about half of cases but may need to be taken for long periods of time for the most benefit to be seen). This drug also works well on other conditions such as hyperactivity, impulsiveness, obsessive compulsive behaviours and aggression. Other effects may include drowsiness, sedation, headaches and dizziness. Clonidine is also used in adults as a medication for people with high blood pressure. This means that people taking Clonidine should have their blood pressure taken before they start the treatment and during treatment. Some children and adults taking Clonidine have reported feeling lethargic or low in mood.
Other types of drugs such as Topiramate and Levetiracetam work by modulating other signalling pathways such as GABA rather than dopamine. Other types of drugs have acetylcholinergic and cannabinoid-like properties that may reduce tic severity, but also have known side effects. Further studies are needed to fully understand how these drugs work.
Drugs used to treat ADHD
There are a number of drugs used to treat ADHD and a long discussion of these is outside the scope of this article. One of the main questions about the treatment of ADHD in people who also have TS is whether or not the treatment for ADHD makes the tics worse? Many doctors have reported that treatment with stimulant medications such as Ritalin (methylphenidate) may have casued tics to worsen, even though attention and concentration has often improved. However, tics can vary considerably 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.
One recent study (a randomized controlled trial) showed that methylphenidate did not lead to worsening of tics when compared to placebo treatment or clonidine (another medication used for tics and ADHD) but this study needs to be repeated. Atomoxetine is a relatively new medication in the treatment of ADHD. At the moment, the question of the effect of atomoxetine on people with tics has not been fully explored but it is likely that trials looking at this area may be published in the near future.
Conclusion
There are many drug treatments available for the symptoms of TS but they will only form part of the overall treatment plan and some people will not need drug treatments at all. Make sure you know what the symptoms of TS are and which symptoms are the most problematic. Also try to balance up the good effects of treatment with any side-effects that may occur. It is important to keep talking to your specialist as this will help them to advise you about which treatments to use.
Most of this information has been adapted from Eddy et al., (2011) and Roessner et al., 2011 which contains further details on the types of treatments available for TS. Please note: this page if for information purposes only. If you have any specific questions about your medication, you should discuss this with your TS specialist before undertaking any changes.
Compiled by:
Dr Andrew Clempson, Research Manager, Tourettes Action, Camberley, Surrey.
Dr Hugh Rickards, Consultant in Neuropsychiatry, The Barberry, 25 Vincent Drive, Edgbaston, Birmingham B15 2FG.
Dr Jeremy Stern, Tourettes Action Honorary Medical Director and Consultant Neurologist at St George's Hospital, Tooting, London.