Tourette’s Disorder

Tourette’s disorder is a neurological condition that causes sudden, repeated movements or sounds called tics that a person cannot control. While the symptoms can range from mild to severe, most people experience significant improvement as they grow older, and many find that tics lessen or disappear by early adulthood.

Table of contents

• What is Tourette’s disorder?
• Symptoms and types of tics
• Causes and risk factors
• How doctors diagnose Tourette’s
• Other conditions that often occur with Tourette’s
• Treatment options
• Living with Tourette’s disorder
• Outlook and prognosis

What is Tourette’s disorder?

Tourette’s disorder, also called Tourette syndrome (TS), is a condition of the nervous system that affects the brain and nerves. It causes people to have tics, which are sudden, repeated movements or sounds that happen involuntarily^[1][2]. Having tics means you cannot stop your body from making these movements or sounds, even though you might not want to. It is a little bit like having hiccups—your body does it anyway^[2].

Tourette’s disorder is part of a larger group of conditions called tic disorders, which affect the developing nervous system^[1]. It is the most severe type of tic disorder^[5].

Symptoms usually begin in early childhood, typically between ages 5 and 10 years, often starting in the head and neck area^[1][2]. The condition affects more boys than girls. Males are about three to four times more likely than females to develop Tourette syndrome^[3][5].

Tourette syndrome affects approximately 1 out of every 160 children in the United States, which means around 300,000 children have the condition^[5]. Most people with TS experience their worst tic symptoms in their early teens, but tics typically lessen and become controlled by the late teens to early 20s^[1]. For many people, tics decrease during adolescence and early adulthood, and sometimes they disappear entirely^[2].

Tourette syndrome is not a condition that continues to get worse over time. People with TS have a normal life expectancy^[1].

Tourette syndrome, TS, Gilles de la Tourette syndrome

Symptoms and types of tics

The main symptoms of Tourette’s disorder are tics. If you have tics, you cannot stop your body from having them, although sometimes people can hold back a tic for a short time. However, tension builds up and the tic eventually comes out^[7].

There are two main types of tics: motor tics, which involve body movements, and vocal tics, which involve sounds made with the voice^[1][2]. Motor tics usually begin before vocal tics develop^[1][5].

Tics are classified as either simple or complex. Simple tics are sudden, brief, and involve only a few muscle groups. They are more common than complex tics and often appear before complex tics develop^[1][2].

Simple motor tics may include:

• Eye blinking and other eye movements
• Facial grimacing
• Shoulder shrugging
• Head or shoulder jerking
• Nose twitching
• Mouth movements

Simple vocal tics may include:

• Repetitive throat clearing
• Sniffing
• Barking
• Grunting
• Coughing
• Humming

Complex tics involve several different parts of the body and usually have a pattern. They are distinct, coordinated movements or sounds involving several muscle groups^[1][2][3].

Complex motor tics might include:

• Facial grimacing combined with a head twist and shoulder shrug
• Sniffing or touching an object
• Hopping, jumping, bending, or twisting
• Stepping in a certain pattern
• Repeating observed movements (echolalia)
• Making obscene gestures

Complex vocal tics may include:

• Repeating one’s own words or phrases
• Repeating others’ words or phrases (echolalia)
• Using vulgar, obscene, or swear words (coprolalia)
• Calling out syllables or words

Although the media often show people with TS involuntarily shouting out swear words (coprolalia) or constantly repeating the words of other people (echolalia), these symptoms are rare and are not required for a diagnosis of TS^[2].

Some tics are preceded by an uncomfortable feeling called a premonitory urge or sensation in the affected muscle group^[1]. People may feel like they have to complete a tic in a certain way or a certain number of times to relieve the urge or decrease the sensation^[1]. These sensations may include a sore throat, itchy joints, muscle tension, or burning in the eyes^[23].

The types of tics and how often a person has tics can change a lot over time. Even though the symptoms might appear, disappear, and reappear, Tourette’s is considered a chronic condition^[2]. Tics can range from mild to severe. Severe symptoms might significantly interfere with communication, daily functioning, and quality of life^[3].

Certain situations can trigger or worsen tics. These include stress, anxiety, fatigue, excitement, or activities requiring high concentration^[15][23]. On the other hand, tics may improve when a person is focused on other tasks or engaged in activities that require concentration, such as playing an instrument or participating in competitive sports^[23].

Causes and risk factors

Scientists do not know the exact cause of Tourette syndrome. Research suggests that it is an inherited condition, meaning it is passed on from parent to child through genes^[2][5]. The condition tends to run in families, and genes play an important role in a person’s risk of developing TS^[2][5].

Issues with how the brain breaks down chemicals called neurotransmitters may also contribute to Tourette syndrome. Neurotransmitters, like dopamine, are chemicals in the brain that regulate behavior and movement^[5]. Some studies suggest alterations in the brain chemical that controls voluntary movements cause tic disorders^[10].

Scientists are also studying other possible causes and environmental factors that might contribute to TS. Some studies have shown that the following factors might be associated with TS, but additional research is needed to better understand these connections^[2][5]:

• Being male—males are 3 to 4 times more likely to develop Tourette syndrome
• Maternal smoking during pregnancy
• Pregnancy complications
• Low birth weight
• First trimester maternal stress and severe nausea or vomiting
• Infection
• Family history of TS, tics, OCD, or ADHD

How doctors diagnose Tourette’s

There is no single test, like a blood test or imaging exam, that can diagnose Tourette syndrome^[2][5]. The diagnosis is based on clinical history and the person’s symptoms^[8].

Health professionals look at the person’s symptoms to diagnose TS. To diagnose Tourette syndrome, a doctor checks when the tics started—they should begin before age 18^[5][8]. The criteria used to diagnose Tourette syndrome include^[8]:

• Both motor tics and vocal tics are present, although not necessarily at the same time
• Tics occur several times a day, nearly every day or intermittently, for more than a year
• Tics begin before age 18
• Tics are not caused by medications, other substances, or another medical condition
• Tics must change over time in location, frequency, type, complexity, or severity

Knowing when tics started and how long symptoms have lasted can help healthcare providers make an accurate diagnosis^[2]. The provider will carefully review the medical history and symptoms^[5].

A diagnosis of Tourette syndrome might be overlooked because the signs can mimic other conditions. For example, eye blinking might initially be associated with vision problems, or sniffling might be attributed to allergies^[8]. The provider may do tests to rule out other conditions that could be causing tics^[5][8].

Other conditions that often occur with Tourette’s

Most people with Tourette’s have other health conditions in addition to tics. It is common for people with TS to have other conditions, and these usually involve mental or behavioral health disorders^[5][9].

The most common conditions that occur alongside Tourette syndrome include^{[2][5][9][10]}:

• Attention-deficit/hyperactivity disorder (ADHD)—affects about 54% of people with TS
• Obsessive-compulsive disorder (OCD)—affects about 50% of people with TS
• Anxiety disorders
• Depression
• Learning disabilities
• Autism spectrum disorder (ASD)
• Oppositional defiant disorder (ODD)

People with additional conditions will require different treatments based on the symptoms. Sometimes treating these other conditions can help reduce tics^[9].

Treatment options

There is no cure for Tourette syndrome^[2][3][9]. However, treatments are available to help manage the tics caused by TS. Many people with TS have tics that do not get in the way of their daily life and do not need any treatment^[3][9]. Mild tics that don’t affect everyday activities might not require treatment^[5].

However, medication and behavioral treatments are available if tics cause pain or injury; interfere with school, work, or social life; or cause stress^[9]. Treatment is aimed at controlling tics that interfere with everyday activities and functioning^[8].

To develop the right treatment plan, people with tics, parents, and healthcare providers can work together and include teachers, child care providers, coaches, therapists, and other family members^[9].

Behavioral therapy

Behavioral therapy is a treatment that teaches people with TS ways to manage their tics^[9]. It is not a cure for tics, but it can help reduce the number of tics, the severity of tics, the impact of tics, or a combination of all of these^[9].

One specific type of behavioral therapy is called Comprehensive Behavioral Intervention for Tics (CBIT) or habit reversal training. This approach helps people gain awareness and control over their tics^[10]. The therapy helps retrain the brain’s habit loop so it doesn’t automatically engage in the tic^[15].

Techniques used in behavioral therapy include:

• Habit reversal—replacing the tic with less disruptive behavior
• Competing response training—teaching people to engage in physically incompatible behaviors with their tics, making it physically challenging to tic

Medications

Medications can be used to reduce severe or disruptive tics that might have led to problems with family, friends, school, or work^[9]. Medications also can be used to reduce symptoms of related conditions, such as ADHD or OCD^[9].

Medications do not eliminate tics completely, but they can help some people with TS in their everyday life^[9]. Common types of medications used include^[8]:

• Medications that block or lessen dopamine (such as haloperidol, risperidone, fluphenazine, and pimozide) can help control tics
• Alpha2-adrenergic agonists (such as clonidine) are recommended for mild to moderate cases
• Muscle relaxants (such as baclofen and clonazepam) can help control tics, especially physical ones

As with all medications, those used to treat tics can have side effects. Side effects can include weight gain, stiff muscles, tiredness, restlessness, and social withdrawal^[9]. The side effects need to be considered carefully when deciding whether or not to use any medication to treat tics. In some cases, the side effects can be worse than the tics^[9].

Medications affect each person differently. One person might do well with one medication but not another. When deciding the best treatment, a doctor might try different medications and doses, and it may take time to find the treatment plan that works best^[9]. There is no one medication that is best for all people^[9].

Living with Tourette’s disorder

Many people with Tourette’s disorder say, “I have Tourette’s, but Tourette’s doesn’t have me.” People can live full lives despite their diagnosis^[19]. What’s important is a strong support system that includes emotional backing coupled with a specially trained medical team^[19].

Several strategies can help people cope with Tourette syndrome in everyday life^[15]:

• Learn about TS and available treatments—it will empower better management of the condition
• Educate family and friends to help them understand TS and provide support
• Join a local support group or online community to connect with others living with Tourette’s
• Work with a doctor to find the medication and dosage that is most effective with the fewest side effects
• Practice stress management—stress and anxiety often make tics worse
• Prioritize sleep and limit caffeine
• Maintain a healthy diet and exercise regimen
• Avoid triggers when possible, such as lack of sleep, stress, flashing lights, and loud noises
• Engage in high-concentration activities, such as playing an instrument or competitive sports

When interacting with someone who has Tourette’s, it helps to understand what makes them feel comfortable. Important tips include^[16]:

• Don’t stare when they have a tic—give it normality and act as if you don’t notice
• While conversing, try to pretend that tics aren’t there—ignoring them is often the best approach
• Be patient if the person has any kind of tic that interrupts their speech
• Ask about their tics only if they seem comfortable discussing them

For parents of children with Tourette’s, education and support are crucial. Training and other educational resources can help parents and schools support children with TS in achieving their full potential^[9]. The first step is to build confidence and understand the condition^[5].

Outlook and prognosis

The outlook for people with Tourette syndrome is often promising. Most people with TS experience their worst tic symptoms in their early teens, but tics typically lessen and become controlled by the late teens to early 20s^[1]. Tics often lessen or become controlled after the teen years^[3].

In most cases, tics decrease during adolescence and early adulthood, and sometimes they disappear entirely^[2]. However, many people with TS experience tics into adulthood, and in some cases, tics can become worse during adulthood^[2]. For some people, TS can be a chronic condition with symptoms that last into adulthood^[1].

Tourette syndrome is not a condition that continues to get worse over time. It is not a degenerative condition, and individuals with TS have a normal life expectancy^[1]. Most of the time, tics become milder and occur less frequently in late adolescence and adulthood^[5].

The severity and presentation of tics in a person may fluctuate over time^[10]. The degree of impairment varies across the population with a diagnosis of Tourette syndrome, and the type and severity of tics experienced by a person may change over time^[10].