What Is Tourette Syndrome?

Overview

Tourette syndrome (TS) is a condition characterised by making involuntary sounds or movements called tics. It is part of a larger group of disorders known as persistent tic disorders.  The syndrome usually develops in childhood and although symptoms may improve after several years, there is currently no way to cure TS completely. 

Causes of tourette syndrome

The exact cause of Tourette syndrome has not been identified. However, genetics are thought to play a role in the condition, as tic disorders tend to run in the family. Tourette syndrome may be associated with other mental health and neurological conditions. The most common co-occurring conditions are:¹ 

• Attention Deficit Hyperactivity Disorder (ADHD)
• Obsessive Compulsive Disorder (OCD) 
• Anxiety 
• Learning disabilities

Signs and symptoms of tourette syndrome

Patients experience Tourette syndrome symptoms differently in terms of presentation and how severe they are. Tics can be motor or vocal, complex or simple. 

Simple tics are brief, sudden, repetitive movements that only involve a few muscles. They are more common than complex tics and may precede them. Simple motor tics include:

• Blinking, and other eye movements 
• Grimacing
• Shrugging 
• Jerking your head or shoulder 

Simple vocal tics include: 

• Clearing your throat repeatedly 
• Sniffing
• Barking 
• Grunting 

Complex tics are distinct, coordinated patterns involving several muscles in different parts of the body. Complex motor tics may combine simple motor tics, such as grimacing and head twisting. Complex motor tics include: 

• Jumping
• Hopping
• Bending
• Twisting 
• Touching an object 

Complex vocal tics include:² 

• Repeating words or phrases, either your own or from other people (echolalia) 
• Swearing or saying obscene, vulgar phrases (coprolalia)

Coprolalia is a common stereotype of Tourette syndrome; however, this condition affects less than 10% of patients suffering from TS.³

Both motor and vocal tics are generally broken down into three stages:^4,5

1. Premonitory urge- this is described as the uncomfortable bodily sensation indicating that a tic is about to occur. It has been described as being an itch, a tingle, or tension within the body  
2. Expression of the tic- whether it be a motor or vocal, simple or complex
3. Sense of relief once the tic has been expressed

Management and treatment for tourette syndrome

Some people can control their tics for a short period of time with concentration: however, this gets easier with practice. Controlling tics can be tiring, and can cause a sudden release after trying to suppress them. Tics may also be less noticeable during activities requiring high levels of focus, such as during sports or doing another activity of interest.¹

If symptoms are mild, then no treatment is needed. However, if tics are impacting daily life, medications and therapies are available to try and reduce the burden of the disorder. Medications include:

• Dopamine blockers- such as haloperidol. This increases the levels of dopamine available to the brain. They can also be used to treat Schizophrenia and hyperactivity disorders 
• Alpha-adrenergic agents- such as clonidine. While these medications are usually taken to treat high blood pressure, they can also be used to help manage impulse control problems 
• Stimulants- such as methylphenidate (Ritalin) and dextroamphetamine (Adderall). These help with ADHD symptoms 
• Antidepressants- such as fluoxetine and sertraline. They can also help to reduce the symptoms of depression, anxiety, and OCD 

Unfortunately, none of these medications can cure tic disorders for good, and they each come with their own different side effects. There is no ‘one-type-fits-all’ when it comes to medication for Tourette syndrome, and it may take a few different tries to find one that suits you best. 

Besides medication, talking therapies can be used to help manage symptoms. These include: 

• Cognitive behavioural intervention for tics (CBIT)- a technique which trains people to use voluntary movements when they can feel the premonitory urge to reduce the symptoms of the tic
• Psychotherapy- can be used to help individuals learn to cope with the disorder, alongside reducing symptoms of depression, anxiety, ADHD, and OCD if present
• Deep brain stimulation- a treatment for Tourette syndrome that is still in its early stages of research. For severe tics that haven’t responded to other treatments, deep brain stimulation may help. This procedure used a battery-operated medical device to deliver electrical stimulation to target areas in the brain. This deep stimulation helps control unwanted movement^2,5

FAQs

How is tourette syndrome diagnosed?

Tourette syndrome does not require in-depth medical diagnostics, and its diagnosis can be made by how it presents itself. Diagnosis of Tourette syndrome requires:⁴ 

• Multiple motor tics or at least one vocal tic 
• That the tics have been present for more than one year since they first appeared 
• That the symptoms started during childhood 
• That the symptoms have not been caused by any illness or by any substance

Patients with Tourette syndrome have the presence of both motor tics and phonic tics, both of which have to be present for at least one year. If only motor or phonic tics are present, then a diagnosis of another persistent tic disorder should be considered, such as persistent motor or vocal tic disorder. If the tics have been present for less than one year, this is known as provisional tic disorder.⁶

Certain tics could be caused by another underlying condition, such as sniffing caused by allergies or blinking caused by an eye disorder. Therefore, your doctor may require additional tests, such as blood tests or imaging, to rule out any other cause.

How can I prevent tourette syndrome?

Since there is no direct cause of Tourette syndrome, it cannot be prevented. However, early diagnosis and treatment can help prevent Tourette syndrome from becoming worse, or lasting into adulthood. Avoiding smoking during pregnancy may help to reduce the likelihood of developing not only Tourette syndrome but many other childhood disorders.⁷

What are the risk factors of tourette syndrome?

Unfortunately, evidence is lacking regarding risk factors for Tourette syndrome. Mothers smoking during pregnancy and babies with low weight at birth seem to be the only risk factors that have the strongest link towards the development of TS.⁸

How common is tourette syndrome?

Tourette syndrome is a fairly common neurological disorder, estimated to affect up to 1% of the population. It  usually presents in childhood, between the ages of 2-15, with 6 being the most common age of onset. Boys are affected three to four times more often than girls.⁴

When should I see a doctor?

If you are concerned about your or your child’s tics, you need support. You should book an appointment with a healthcare professional if the tics: 

• Are regular, or have become more frequent and severe 
• Cause an interference in daily life, school, or work 
• Have an impact emotionally or socially, such as embarrassment or bullying
• Have an effect on mental health, such as anger and depression

To help your healthcare provider understand the full extent of the tics, sometimes it is helpful to provide a video recording. Not all tics are necessarily TS, so it is important to rule out any other conditions. 

Summary

Tourette syndrome is a disorder that causes people to make involuntary movements or sounds. It can be a challenging condition at times, especially when there is no definitive cure, and it may take time to find a treatment, if any, that can help manage the symptoms. Tourette syndrome can improve with age; however, this is not the case for everyone. There are support groups available, such as Tourettes Action, that can provide education and support for people with Tourette syndrome and those affected by it.