CONDITIONS

Tourette Syndrome

What Is Tourette Syndrome

Tourette syndrome, or TS, is a condition of the nervous system that is characterized by tics—or involuntary twitches, movements, or sounds that a person does repeatedly. For example, a person might make a noise repeatedly or keep blinking their eyes again and again. Having tics is described by some as being a bit like having the hiccups—though you may not want to hiccup, your body does it anyway. You might be able to exert some control over the hiccup, but not easily. TS is named for Dr. George Gilles de la Tourette, the French neurologist who was the first to describe the condition in an 86-year old French noblewoman, in 1885.

The first symptoms of TS are usually first noticed in childhood, and the average age of onset is between the ages of 3 and 9. TS occurs in people from all racial and ethnic groups, though boys are three to fives times more likely than girls to be affected by TS. In the U.S.A, 1 out of every 360 children between the ages of 6 and 17 has been diagnosed with TS.

TS can be a chronic condition with symptoms that can last a lifetime, but the good news is that most people who have TS experience it most acutely during their early teens, with symptoms improving in the later teen years and into adulthood.

There are two main types of tics—vocal and motor.

  • Motor tics are movements of the body that can include blinking, jerking, or shrugging.
  • Vocal tics are sounds that a person makes, like humming, yelling out a word or phrase, clicking, or humming.

Tics can be either simple or complex.

  • Simple tics involve only a few parts of the body—and can include such things as blinking or squinting.
  • Complex tics generally involve several different parts of the body, and often have a pattern. For example, jerking the arm and then touching the nose.

What Causes Tourette Syndrome

While the exact cause of TS is unknown, scientists currently theorize that abnormalities in certain regions of the brain, like the basal ganglia, frontal lobes, and cortex, and in the circuits and neurotransmitters that connect these regions, are not functioning properly, leading to some “miscommunication” that may in turn, cause TS. There is much variation in how TS expresses itself in an individual, which points to it being a complex disorder.

Risk Factors For Tourette Syndrome

There are data from both family and twin studies that suggests that TS is an inherited disorder. Genetic studies also point to a connections between some forms of ADHD and OCD and TS. It is important to understand that genetic predisposition does not mean that TS will develop—it means that there is a potential for TS to occur, which depends on environmental factors as well.

Gender is another factor in the expression of TS. Males who at risk for TS are more likely to have tics, and females who are at risk are more likely to exhibit obsessive-compulsive symptoms. Genetic counseling is available to those who have TS to review all potential hereditary conditions in the family.

Diagnosing Tourette Syndrome

There is no single test that can be used to diagnose TS. Healthcare professionals have to look at a person’s symptoms to diagnose TS or other tic disorders.

Tic disorders differ from one another in the manner in which the tics present—motor, vocal, or a combination of the two—and how long the patient has had symptoms. TS can be diagnosed if a patient presents with both motor and vocal tics, and has experienced tic symptoms for a duration of at least one year.

A diagnosis of TS is confirmed when doctors verify that a patient has experienced motor as well as vocal tics for a duration of at least 1 year. The presence of other neurological or psychiatric issues may also facilitate a diagnosis. Common tics are not often incorrectly diagnosed by knowledgeable clinicians; however, atypical symptoms or late-stage presentations (for example, onset of symptoms in adulthood) may require referral to a specialist to confirm a diagnosis. Blood, laboratory, and imaging tests are not required to make a diagnosis of TS.

Patients often do not receive a formal diagnosis of TS until symptoms have persisted for some time. At the onset, mild to even moderate tics may be seen as insignificant, a natural component of physical developmental, or the manifestation of another condition. During childhood and adolescence, for example, parents may correlate their child’s eye blinking with vision problems or sniffing with seasonal allergies. In many instances, self-diagnose TS after they, their parents, relatives, and friends read or hear about the condition from others.

Symptoms of Tourette Syndrome

The primary symptom of TS is tics. The onset of tics usually occurs between the ages of 5 and 10 years, with the first symptoms manifesting as motor tics occurring in the head and neck area. Tics are often worse at times of increased stress or excitement; conversely, tics symptoms improve when a person is calm or focused on a specific task.

The type and frequency of tics that a person experiences changes over time. While symptoms may come and go, TS-related tics are considered a long-term, chronic condition.

Oftentimes, the frequency of tics decreases during adolescence and early adulthood, sometimes disappearing entirely altogether. Other times, however, tics can become worse during adulthood.

Although common media portrayals of TS show involuntary cursing (called coprolalia) or “copycatting” (also known as echolalia) as the primary symptoms of TS, these are rare and not required for a diagnosis of TS.

Tics are divided into two classes—simple and complex. Simple motor tics are sudden and brief, often repetitive in nature, and involve only a few muscle groups. Examples of simple tics include: abnormal blinking or eye movements, contorting of facial muscles, shrugging of the shoulders, sudden jerking of the head or shoulders, and/or repetitive throat-clearing, grunting, sniffing, or barking. Complex motor tics are distinct, coordinated, and patterned movements that involve multiple muscle groups. Complex tics may manifest as a combination of simple tics, such as contorting of facial muscles combined with jerking of the head and a grunt. Some complex motor tics may appear almost purposeful, such as touching objects, hopping, jumping, bending, or twisting. Many contend that most disabling tics include motor movements that may cause harm to the individual (such as punching oneself in the face) or vocal tics that result in coprolalia or echolalia. For patients with TS, some tics may be brought on by an urge or sensation in the affected muscle group, which is also referred to as a premonitory urge. More specifically, a tic may be preceded by the need to complete a tic in a certain way or a certain number of times in order to relieve the urge or decrease the sensation.

Tics vary significantly type, prevalence, location, and degree of severity. They may come and go over time. The first symptoms usually occur in the head/neck area and may progress to other muscles of the trunk and extremities. Motor tics generally precede the development of vocal tics; likewise, simple tics often precede complex tics. Most patients experience peak tic severity before the mid-teen years. Furthermore, patients tend to improve—for the most part—in the late teen years and early adulthood. Roughly ten to fifteen percent of patients with TS have a progressive or disabling subset of the disease that lasts into adulthood.

Prognosis

TS often goes hand-in-hand with other condition, which are commonly referred to as co-occurring conditions. Nearly 90% of children diagnosed with TS have also been diagnosed with at least one additional mental health, behavioral, or developmental condition, the two most commonly occurring of which include obsessive-compulsive disorder (OCD) and attention-deficit/hyperactivity disorder (ADHD).

Although there is no cure for TS, many patients with the condition see vast improvements in symptoms in the late teens and early 20s. Accordingly, some patients may become symptom-free and no longer need medication to suppress tics. And although TS is commonly considered a lifelong and chronic condition, it is not degenerative in nature and provides patients with a normal life expectancy. Furthermore, the condition does not impair intelligence. And although tic symptoms typically decrease with age, neurobehavioral disorder including as ADHD, OCD, depression, panic attacks, anxiety, and mood swings may continue into adulthood and result in impairment throughout life.

Living With Tourette Syndrome

As discussed earlier, tics vary significantly type, prevalence, location, and degree of severity. They may come and go over time. The first symptoms usually occur in the head/neck area and may progress to other muscles of the trunk and extremities. Motor tics generally precede the development of vocal tics; likewise, simple tics often precede complex tics. Most patients experience peak tic severity before the mid-teen years. Furthermore, patients tend to improve—for the most part—in the late teen years and early adulthood. Roughly ten to fifteen percent of patients with TS have a progressive or disabling subset of the disease that lasts into adulthood.

Although TS-related symptoms are completely involuntary, some people are able to somewhat suppress, disguise, or otherwise manage tics in an attempt to minimize the overall that they have on patient function as a whole. Patients with TS, however, often report a vast increase in tension and anxiety when they attempt to suppress tics. This buildup in tension may in fact “backfire” and cause the tic to be expressed against the person’s will.

When it comes to managing children with TS, parents face the challenge to obtain the best possible educational setting that will foster development of their child. Students with TS often struggle with co-occurring conditions like ADHD, learning disabilities, and OCD. Furthermore, frequent tics have been shows to interfere with classroom performance and social integration alike. After undergoing a comprehensive assessment, students with TS should be placed in an educational setting tailored to their individual needs. Special accommodations including tutoring, smaller specialized classes, and—in extreme cases—special schools may be required.

All students with TS need a tolerant and compassionate setting that both encourages them to work to their full potential and is flexible enough to accommodate their special needs. This setting may include a private study area, exams outside the regular classroom, or even oral exams when the child’s symptoms interfere with his or her ability to write. Untimed testing reduces stress for students with TS.

Screening

There is no single test that can be used to screen for TS. Healthcare professionals must closely examine a person’s symptoms to diagnose TS or other tic disorders.

Prevention

The cause of Tourette syndrome is unknown. While the condition is more common in boys than girls and many people tend to outgrow symptoms, there is no recommended approach to preventing TS altogether.

Common Treatment

Although TS cannot be cured, various treatment options are available to help manage the tics. Many people with TS have tics that do not get in the way of their daily life and, therefore, do not need any treatment; however, medication and behavioral treatments are available if tics interrupt the normal day-to-day happenings in your life.


Medication

Because tic symptoms often do not cause impairment, the majority of people with TS require no medication for tic suppression. However, effective medications are available for those whose symptoms interfere with functioning. Neuroleptics (drugs that may be used to treat psychotic and non-psychotic disorders) are the most consistently useful medications for tic suppression; a number are available but some are more effective than others (for example, haloperidol and pimozide).

Unfortunately, there is no one medication that is helpful to all people with TS, nor does any medication completely eliminate symptoms. In addition, all medications have side effects. Many neuroleptic side effects can be managed by initiating treatment slowly and reducing the dose when side effects occur. The most common side effects of neuroleptics include sedation, weight gain, and cognitive dulling. Neurological side effects such as tremor, dystonic reactions (twisting movements or postures), Parkinson’s-like symptoms, and other dyskinetic (involuntary) movements are less common and are readily managed with dose reduction.

Discontinuing neuroleptics after long-term use must be done slowly to avoid rebound increases in tics and withdrawal dyskinesias. One form of dyskinesia called tardive dyskinesia is a movement disorder distinct from TS that may result from the chronic use of neuroleptics. The risk of this side effect can be reduced by using lower doses of neuroleptics for shorter periods of time.

Other medications may also be useful for reducing tic severity, but most have not been as extensively studied or shown to be as consistently useful as neuroleptics. Additional medications with demonstrated efficacy include alpha-adrenergic agonists such as clonidine and guanfacine. These medications are used primarily for hypertension but are also used in the treatment of tics. The most common side effect from these medications that precludes their use is sedation. However, given the lower side effect risk associated with these medications, they are often used as first-line agents before proceeding to treatment with neuroleptics.

Effective medications are also available to treat some of the associated neurobehavioral disorders that can occur in patients with TS. Recent research shows that stimulant medications such as methylphenidate and dextroamphetamine can lessen ADHD symptoms in people with TS without causing tics to become more severe. However, the product labeling for stimulants currently contraindicates the use of these drugs in children with tics/TS and those with a family history of tics. Scientists hope that future studies will include a thorough discussion of the risks and benefits of stimulants in those with TS or a family history of TS and will clarify this issue. For obsessive-compulsive symptoms that significantly disrupt daily functioning, the serotonin reuptake inhibitors (clomipramine, fluoxetine, fluvoxamine, paroxetine, and sertraline) have been proven effective in some patients.


Behavioral treatments

Behavioral treatments such as awareness training and competing response training can also be used to reduce tics. A recent NIH-funded, multi-center randomized control trial called Cognitive Behavioral Intervention for Tics (CBIT), showed that training to voluntarily move in response to a premonitory urge can reduce tic symptoms. Other behavioral therapies, such as biofeedback or supportive therapy, have not been shown to reduce tic symptoms. However, supportive therapy can help a person with TS better cope with the disorder and deal with the secondary social and emotional problems that sometimes occur.

Complementary and Alternative Treatment

In addition to behavioral treatments, a number if alternative measures are available that may help to regulate TS. Changes in diet as well as the addition of certain supplements may be used to treat the condition.

Diet. As with many conditions, it will be important to determine any “trigger” foods and eliminate them altogether.

  • In terms of dietary changes, an elimination diet may help you to identify personal trigger foods. Many individuals with TS, for example, have benefited a diet that limits the intake of yeast, caffeine, sugar, and other artificial sweeteners. It is important to follow general dietary guidelines as well.
  • Furthermore, balancing of the alkaline environment within the body has also been shown to help alleviate TS-related symptoms. Baking soda may help neutralize acidity in the body and to establish a more stable, pH-balanced environment. Adding a baking soda regimen to your diet may help achieve an alkaline state, thereby helping the body to function more effectively, alleviating the symptoms of the condition.

Supplements. Finally, Omega-3s have been shown as another essential element in a balanced diet. Omega-3 fats function to lubricate the neurotransmitters in the brain and to facilitate better functioning of the nervous system. A daily omega-3 supplement may help to alleviate TS-related tics.

Care Guide

While there is no cure for Tourette’s syndrome, affected individuals can lead a normal, satisfied life. Incorporating some of the approaches outlined above may help to alleviate your TS symptoms as well as to develop effective coping strategies. It’s important to remember that no treatment is needed unless the tics interfere with everyday life. Excitement or worry can make tics worse. Calm, focused activities may make them better. Medicines and talk therapy may also help.

When To Contact A Doctor

Although no treatment is needed unless tics interfere with everyday life, you should contact a doctor if you exhibit any of the signs and symptoms of TS to ensure proper and timely diagnosis. If you receive a diagnosis of TS, you can then work with your doctor to develop a treatment plan, if necessary.

Questions For Your Doctor

Questions For A Doctor

  • How do I know if my TS requires treatment?
  • Will my symptoms worsen over time?
  • What are your thoughts on some of the complementary and alternative treatment options? What can I do naturally?

Resources

Tourette Association of America has comprehensive information about TS.

Centers for Disease Control and Prevention offers education and training on TS.