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What is Tourette Syndrome?

  Tourette Syndrome or TS is a Neurodevelopmental or brain-based condition that causes people who have it to make involuntary sounds and movem...

 

Tourette Syndrome or TS is a Neurodevelopmental or brain-based condition that causes people who have it to make involuntary sounds and movements called tics.

 


 

What is a tic?

Tourette Syndrome (TS) tics are sudden, intermittent, repetitive, unpredictable, purposeless, nonrhythmic, involuntary movements or sounds. Tics that produce movement are called “motor tics,” while tics that produce sound are called “vocal tics” or “phonic tics.” Tics can be either simple or complex.

Simple motor tics involve one muscle group and include eye blinking, lip-licking, shoulder shrugging, and head jerking. Complex motor tics involve a coordinated movement produced by a number of muscle groups. For example, touching objects, jumping, or spinning around. Complex motor tics may also include imitating someone else’s actions (echopraxia) or exhibiting inappropriate or taboo gestures of behaviours (copropraxia.)

Simple vocal tics include sniffing, grunting, throat clearing, uttering single syllables (e.g. uh-uh-uh) and humming. Complex vocal tics include uttering linguistically meaningful utterances (words and phrases), or changing the pitch and volume of voice. Complex vocal tics may also involve repeating a phrase he/she has heard over and over (echolalia), repeating one’s own words (palilalia) or uttering obscenities or socially taboo phrases (coprolalia).

The most important thing to understand about the tics associated with Tourette Syndrome is they are the result of a neuropsychiatric condition. The sounds and behaviours are involuntary and are not being done by choice.

 


 

impact2

What is the impact of tics on the person with TS?

Whether they are simple or complex, tics can be troubling to individuals with TS. They can cause embarrassment and discomfort. In some cases, they can cause physical pain, such as headaches, muscle strain, or soreness. Issues such as repetitive strain injuries have also been reported.

The disorder can be stigmatizing especially if the person with TS is in environments that do not support or tolerate anyone who may appear a bit different. Most parents of children with TS worry about the psychological impact of TS and how their child will be viewed by other children, by their teacher, and by society at large. They are concerned about teasing and bullying, about the ability to make friends, succeed at school and get and keep a job.

Peer education and awareness can help with acceptance. See our Support page for how Tourette Canada can help with education and awareness.

 


 

Suppression1

Can tics be suppressed?

Many people describe a premonitory urge that precedes a tic. This premonitory urge is a feeling similar to what you feel when you need to sneeze or when you have an insect bite that itches. With tics, the premonitory urge is described as a build up of pressure, tension or energy that is relieved when the tic is expressed.

The temporary ability to withhold or suppress a tic is somewhat like the feeling of holding in a sneeze or trying not to scratch an insect bite. The ability to suppress tics varies between individuals. Tic suppression can take a lot of energy, making it hard to concentrate on other tasks. The effort required to suppress tics can also be exhausting. Most people who try to suppress their tics report that the tic will eventually be released.

Young children may not be aware of their tics, and even if they are aware they may have no ability to suppress their tics. Asking a child to suppress their tics is generally not a good idea because the effort involved in suppressing the tics involves a high level of concentration and it makes it difficult for the child to pay attention to other tasks such as paying attention in class. In fact many children and teens with TS find that when they are in a supportive environment where they can tic without attention being paid to the tics, there is a decrease in the number of tics they experience.

It used to be thought that suppressing tics caused a rebound effect after the suppression is stopped. This was described as the expression of all the tics that had been suppressed when the person could no longer suppress them. However, more recent studies have disproven this rebound effect. The study resulted showed that the number of tics did not substantially increase following a period of suppression.

Many parents observe that their child or teen will try to suppress their tics at school and then will come home and explode in bouts of tics. This is often accompanied by other emotional behaviours. The studies on the rebound effect of suppressing tics indicates this behaviour is not the result of suppressing tics, and that further study is required to fully understand the behaviour.

 


 

genetics

What causes TS?

TS is a genetic condition, meaning it is passed on from parent to child. This does not mean that if someone has TS their son or daughter will also be born with TS. Studies indicate that a person with TS has between a 5-15% chance of having a child, sibling or parent with the condition. Scientists originally thought that TS was carried in a single gene, but it’s now believed that TS involves multiple genes. Though it appears that there is likely to be a significant genetic factor, some studies indicate prenatal, perinatal, autoimmune, and environmental factors may contribute to or modulate the severity of symptoms. More research is required to fully understand the disorder.

 


onset

 

When do the symptoms start?

The symptoms of TS usually begin in early childhood around age five, but may occur as early as age one or two, or as late as the age of 17. Typically the first tics to appear are facial tics like eye blinking, nose twitching, or grimacing.

 

 


 

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Why do people tic?

Brain imaging studies suggest that people with TS have neurological differences in their brains, specifically in their cortico-striatal-thalamo-cortical (CSTC) circuitry. What these differences are precisely and whether or not other areas of the brain are also involved continues to be explored by researchers. Currently, the basal ganglia and the frontal lobes of the cerebral cortex are believed to be involved in TS. The frontal lobes plan and execute movements and thoughts, while the basaI ganglia acts as a brake to prevent unwanted movements and sounds. For individuals with TS, something abnormal happens when the frontal cortex “tells” the basal ganglia to stop particular movements. As a result, unwanted movements and sounds, or tics, occur.

How is Tourette Syndrome diagnosed?

What is the Diagnostic Criteria for Tourette Syndrome (TS)? In order to be diagnosed with TS, a person must meet a set of conditions or diagnostic...

What is the Diagnostic Criteria for Tourette Syndrome (TS)?

In order to be diagnosed with TS, a person must meet a set of conditions or diagnostic criteria. These criteria, found in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-V) are:

  • At least two motor tics and at least one vocal tic (not necessarily at the same time);
  • Tics persist for more than a year (tics can wax and wane during this period);
  • Tics begin before age 18; and
  • Tics are not caused by a substance or other condition (e.g., Huntington Disease, infection, head injury).

Currently there is no laboratory test or brain scan that conclusively shows a person has TS. The diagnosis is a clinical one, which means that it is based on a medical professional taking a medical history, observing the patient, and doing any necessary tests to rule out other conditions that may look like TS or that could cause tics.

 

How-is-TS-diagnosed

 


 

Who can diagnose TS?

TS can be diagnosed by any medical professional who is familiar with Tourette Syndrome, including family doctors, neurologists, psychiatrists, and psychologists.

If you are looking for help with getting a diagnosis from a clinician in your area try using our T-Search directory.

 


 

What is the prognosis?

TS is a chronic, life-long disorder that currently has no cure. However, it is not a degenerative condition and the severity and intensity of the tics generally decrease when the individual reaches their late teens or early 20s. Some individuals become tic-free by adulthood. Although the tic symptoms tend to decrease with age, the associated disorders (e.g. ADHD, OCD, neurobehavioural disorders) can persist throughout adulthood.

 


 

What is the prevalence of TS?

Although it was once considered rare, TS is a common medical condition. Approximately 1% of the population has TS; however, depending on the study, the prevalence rate can be as high as 3.8%. Studies also report that up to 24% of children develop tics during childhood at some point.

TS affects three to four times as many boys as girls. The tic symptoms can range from mild or severe. Tics will manifest differently between individuals.

 


 

Diagnosis Centres

Search our online T-Search directory to find a specialist near you.

How is Tourette Syndrome treated?

Determining if Treatment is Needed In cases where symptoms are mild, treatment for TS is usually limited to education. Medical treatment is conside...

Determining if Treatment is Needed

In cases where symptoms are mild, treatment for TS is usually limited to education. Medical treatment is considered when symptoms cause psychological distress or physical pain, or interfere with social, academic or professional functioning. While there is no cure for TS, behavioural therapy or medication can help with symptom management.

 

Cognitive or Comprehensive Behavioural Intervention for Tics (CBIT)

CBIT (pronounced see-bit) combines six strategic therapeutic components in the form of a clinically-proven comprehensive non-medication therapy to help a child (person) with Tourette Syndrome manage their tics. CBIT employs techniques used in Cognitive Behavioural Therapy (CBT) along with traditional Habit Reversal techniques (HRT)

That a behavioural treatment helps reduce tic severity is a step forward and reflects modern understanding of how the brain, through brain plasticity, can be shaped by the environment. CBIT focuses on increasing a person’s awareness of their tics, understanding and managing the environmental factors that influence their tics, and teaching them how to perform a competing response that effectively blocks the tic when they sense that the tic is about to happen. Strong evidence suggests that this form of treatment is effective that can be an option to consider as a way to help manage tic symptoms.

CBIT is not a cure, and does not eradicate tics, but rather allows the individual to gain better control over symptoms by managing factors that cause tics. This treatment requires active participation from the patient and tolerance of distress, so it may not be suitable for everyone. It also requires the patient to be aware of their tics, so it may be ineffective for children younger than age nine.

Tourette Canada along with other Tourette advocacy groups are providing training for qualified medical practitioners to provide CBIT for their patients. Information about training, or currently trained practitioners can be obtained by contacting Tourette Canada.

It is hoped that in the near future, other means of delivering CBIT may become available for individuals who don’t have access to a locally trained practitioner.

How is TS treated2Medication

There are a number of different medications that may be prescribed to an individual with TS. Not every medication is effective for everyone and it may take some time to find the right medication and dosage. To learn about possible medication side effects or whether a medication is recommended for tics, see the Canadian Guidelines for the Evidence-based Treatment of Tourette Syndrome. You can download a free PDF copy from our website.

 

Botulinum Toxin Injection (Botox)

Botox injections have been used to treat both vocal and motor tics. There is anecdotal evidence that this treatment is effective, however it has only been the subject of a few well-designed studies. As a result, Botox injections are given a weak recommendation in the current Canadian treatment guidelines for TS. Botox can only treat tics in a specific area of the body rather than all of an individual’s tics because of technical and dose limitations. The effects of the injection(s) wear off over time, in approximately three to six months. Other limitations include the cost of the treatment and availability of individuals with the expertise needed to administer it properly.

 

Transcranial Magnetic Stimulation (TMS)

Repetitive Transcranial Magnetic Stimulation (TMS) is a new experimental procedure being tested as a potential treatment for TS. Doctors place an electromagnet on the scalp over the supplementary motor area and activate the magnet for short periods, sending pulses of magnetic waves into the brain. The goal is to help to reduce tics by altering the rhythms in the brain. While the treatment is noninvasive, a risk of seizures exists, particularly if someone has had seizures in the past. This treatment is costly and not widely available. According to the Canadian Guidelines for the Evidence-based Treatment of Tourette Syndrome, there is currently no good evidence to support the use of TMS in the treatment of TS.

 

Deep Brain Stimulation

For a small number of people with TS, their tics are extremely severe, significantly and negatively impact their quality of life and are resistant to medication. For these individuals, a relatively new surgical approach, called Deep Brain Stimulation (DBS), could be a potential treatment. DBS refers to the direct delivery of an electric pulse to the brain to help moderate abnormal signals associated with TS. The electric pulse comes from an electrode that is implanted in the brain and connected to a pulse generator via a cable or lead. The lead and generator are also surgically implanted in the body, with the lead running down the neck and skull, and over the collarbone with the pulse generator sitting in the upper chest. DBS is controversial partly because it’s so new (not a lot of studies or cases exist) and partly due to questions about side effects and effectiveness. The Canadian Guidelines for the Evidence-based Treatment of Tourette Syndrome rates DBS as having insufficient evidence to make a formal recommendation for adults and is not recommended for children.

 

Dental Appliance (Occlusal Splint)

There is some anecdotal evidence that a removable mouthpiece or dental appliance helps to reduce tic severity. While no published studies exist supporting the use of this device for TS, its effectiveness in reducing tic severity in children is currently being studied.

 

Other Treatments

Massage therapies, chiropractic therapy and acupuncture have been used to help relieve pain or soreness resulting from tics. Little research or studies are available on the efficacy of these treatments in treating TS symptoms.

Some evidence suggests that exercise can help reduce tic symptoms. Relaxation exercises and meditation may have similar beneficial effects as stress often exacerbates tics.

Some individuals modify their diets or take supplements to help manage their symptoms. Very little research has been done on in this area, and any individual considering taking supplements for this purpose is advised to consult their doctor first.

 

What conditions are associated with Tourette Syndrome?

TS+ Many other conditions result from genetic factors that are similar to TS. Consequently, the vast majority of people with TS (90%) have one or...

TS+

Many other conditions result from genetic factors that are similar to TS. Consequently, the vast majority of people with TS (90%) have one or more other conditions as well. These common co-occurring conditions include Attention Deficit Hyperactivity Disorder, Obsessive-Compulsive Disorder and Mood
what is ts4Disorders among others. The medical term for these associated conditions is comorbidities. Rather than listing several conditions, many people opt for the shorter term, TS+, although this isn’t a diagnostic term.

 

ADHD

60% of children with TS also have Attention Deficit Hyperactivity Disorder or ADHD. ADHD is a neurodevelopmental condition that affects both adults and children. It appears in three ways or “types” depending on the particular symptoms. It can appear as an Inattentive Type, Hyperactivity/Impulsive Type or as a combination of the symptoms of inattention, hyperactivity and impulsivity called the Combined Type. Symptoms usually start in childhood, sometimes continuing throughout adulthood, and may vary depending on the type of ADHD and the individual. To be diagnosed with ADHD, symptoms must interfere with a person’s daily functioning or development. While symptoms must be experienced in at least two different places (e.g. home and school, or home and work), symptoms can be mild, or even absent altogether in some circumstances, such as in the doctor’s office or during an enjoyable activity. Having TS and ADHD is associated with a number of difficulties including academic challenges, family conflict, peer rejection, low frustration tolerance and aggression.

 

OCD

Up to 30% of people with a tic disorder also have Obsessive-Compulsive Disorder or OCD. People with TS are even more likely to have OCD than individuals with any other type of tic disorder. Like TS, the condition affects both children and adults. OCD has two primary symptoms: obsessions and compulsions. Obsessions are unwanted thoughts that recur over and over again causing a lot of stress or anxiety and ultimately resulting in attempts to either ignore the thoughts or to make them go away. Examples include fear of disease or fear of dirt and germs. Compulsions are recurring actions, which have the indented purpose of preventing or reducing distress, or preventing a bad situation or event from happening. Examples include checking something over and over or placing things in a particular order. To have OCD, these obsession and or compulsions must take an hour plus of the person’s time each day, cause extreme distress, or interfere with daily functioning in a significant way. It can be hard to tell the difference between a complex tic and a compulsion. Complicated tics tend to happen in response to a feeling of physical tension or a premonitory urge (e.g., a tingling up the spine or a vague feeling of discomfort). In contrast, compulsions usually happen because a person is trying to relieve anxiety. Compulsions also tend to be more elaborate than tics.

 

Anxiety & Mood Disorders

In addition to TS, some individuals have anxiety and/or mood disorders such as depression or Bipolar Disorder. These conditions may occur together because both have common origins or causes. Alternatively, a person may develop a mood disorder or anxiety due to emotional distress and loss of self-esteem, which can result from living with TS. Anxiety and mood disorder symptoms can be even more challenging than tics and may require specific intervention and treatment. While reduction in tic severity can help with mood disorder symptoms, this is not always sufficient.

 

Neurological Storms

Approximately one-third of individuals with TS+ have neurological storms or rage episodes/attacks. A neurological storm is a sudden, out-of-control explosive outburst that is totally out of proportion to the triggering event or environment. It’s different from a temper tantrum because it isn’t goal-directed. Storms are also very different from predatory anger, which refers to psychopathic individuals who get pleasure from inflicting pain on others. The more associated conditions a person has and the more severe their symptoms are, the more likely they are to have storms. Like tics, storms wax and wane in frequency, are more likely to occur when the person is tired or sick, and are unintentional. They may happen multiple times a day, several times a week or less frequently.

 

Sleep Disorders

As many as 60% of children with TS have problems with sleep. These problems may stem from ticcing, associated conditions like ADHD and depression, medications (including those that may be used to treat TS symptoms) and alterations in brain structures or neurotransmitters due to TS. Common sleep complaints from individuals with TS include difficulty falling asleep, sleep talking, night terrors, poor sleep quality and non-refreshing sleep. Disturbed or insufficient sleep is associated with poor school performance, impaired memory and concentration, greater behavioural or conduct problems, mood disorders and poor quality of life.

 

Executive Dysfunction

Executive functions are a set of mental processes that help people perform activities like planning, organizing, strategizing, paying attention to and remembering details, as well as managing time and space. Several neurological conditions are associated with deficits in executive functions, otherwise known as executive dysfunction, including OCD, ADHD and mood disorders. Executive dysfunction can cause significant challenges such as problems with goal-setting, planning, completing work on time, adjusting behaviour based on feedback, prioritizing, and sustaining effort. Students with executive dysfunction may require accommodations in order to learn best.

 

Dysfunction in Sensory Integration

Some individuals with TS have sensory integration deficits meaning they are either hyper- or hypo-sensitive to sensory stimuli. This can affect a child’s gross and fine motor development, coordination, balance, as well as visual, perceptual and self-help skills. Individuals who are hypersensitive will overreact to sensory stimuli. For example, a soft touch may cause them to feel pain. In contrast, individuals who are hyposensitive will underreact to sensory stimuli leading them to crave stimulation. For example, while a hypersensitive individual might appear to be a picky eater, a hyposensitive individual may lick or taste inedible objects.

 

Other Conditions

Other conditions and neuropsychological deficits associated with TS may include Autism Spectrum Disorder, substance use disorders, Oppositional Defiance Disorder, learning disabilities, memory deficits, Panic Disorder, social skills deficits, visual-perceptual motor disabilities and epilepsy.

 

How are the associated conditions treated?

Behavioural Therapies Depression can be treated using a behavioural therapy that focuses on increasing positive activities while decreasing negati...

Behavioural Therapies

How is TS treated3

Depression can be treated using a behavioural therapy that focuses on increasing positive activities while decreasing negative ones. This common approach is called behavioural activation. Two other effective behavioural treatments for depression are Cognitive Behavioural Therapy (CBT) and Rational Emotive Behaviour Therapy (REBT), which focus on helping patients to replace their negative thinking with more accurate thoughts.Exposure and Response (or Ritual) Prevention (ERP) is the most effective type of behavioural therapy for Obsessive Compulsive Disorder (OCD) symptoms. This therapy exposes patients to the source of their anxiety and assists the patient with countering their tendency to perform compulsions. The primary goal is to reduce both a patient’s anxiety and their reliance on compulsions.

 

Occupational Therapy with a Sensory Integration Approach

Sensory-based therapies, such as sensory integration therapy, are used by occupational therapists and other therapists to treat children with sensory challenges. These therapies involve activities that are believed to organize the sensory system. They include the use of brushes, swings, balls and other recreational equipment. Occupational therapy with the use of sensory-based therapies is one component of a comprehensive treatment plan.

 

Medication

How is TS treated1

Individuals with TS+ may take prescription medication to help with the symptoms of their associated conditions. In many cases, individuals may take multiple medications for both their tics and associated disorder symptoms. This is called targeted combined pharmacotherapy.Treating rage episodes is challenging. In the long-term, a person may take a prescription medication. It’s also possible to take a preventative approach by trying to isolate and understand the triggers or pathways that lead to the episodes and then attempt to reduce exposure to these factors in the future. If a rage episode begins, there is very little that can be done to stop it. A person who is mid-storm lacks the neurological resources to have a logic-based conversation. It is advisable to give the person space, have others exit the area if possible, and let the storm pass. If the person must be moved due to a high risk of injury to self or others or potential for damage to property, it is best to put them in a private location that allows them to move around. Rather than punishing someone for having a storm, allow them to cool off and then work with them to repair any damage they caused (e.g., by cleaning up a mess or apologizing for hurt feelings).

 

What are the myths about TS?

Why do some people call TS the ‘swearing disease’? It is a common misconception that the main symptom of TS is swearing. Up to 10% of ...

myth1

Why do some people call TS the ‘swearing disease’?

It is a common misconception that the main symptom of TS is swearing. Up to 10% of people with TS may experience coprolalia at some point. Coprolalia is the involuntary utterance of obscenities, profanities and derogatory remarks. This extreme tic may include yelling inappropriate or culturally taboo remarks or phrases. As with all tics, the behaviour is not intentional. The extreme nature of this vocal tic can cause embarrassing and distressing situations for those affected.

When TS is represented in movies and TV shows it is common to see a person with TS exhibiting this extreme tic. This has resulted in a misrepresentation of the true nature of TS and a stereotype around swearing.

 


 

Does TS affect intelligence?

No. TS does not impact intelligence.

 


 

different ways

Does everyone with TS have the same tics?

There are many different types of tics and everyone with TS experiences tics differently. Just because two people have TS does not mean they will have similar tics in common. Also a person with TS does not always keep the same tics. Tics tend to change over time. Someone who has an eye-blinking tic, a shoulder-jerking tic, and a sniffing tic at the age of 8 may have a completely different set of tics at the age of 9.

 


 

Can people with TS control their tics?

Some people can hold their tics for short periods of time. The effort to hold or suppress tics can be difficult and requires concentration. Some people describe holding in a tic as feeling similar to having a very itchy bug bite that you cannot scratch. The effort to not tic (or not scratch the bite) takes over almost all of the person’s concentration, making it very difficult to pay attention to other things such as what the teacher is saying.

 


 

If you have tics, does that mean you have TS?

All individuals with TS have tics, but having tics does not necessarily mean you have TS. TS is the most severe type of tic disorder. There are other tic disorders such as Persistent Motor Tic Disorder, Persistent Vocal Tic Disorder, and Provisional Tic Disorder. Also there are other conditions that can cause tics including Huntington Disease, Lesdh-Neyhan Syndrome, and Cerebral Palsy. Certain medications can cause tics, and tics can be a result of a head injury.