Tourette Syndrome & Tic Disorders Support Group

Tics are sudden, repetitive, stereotyped, nonrhythmic, involuntary movements (motor tics) and utterances (phonic tics) that involve discrete muscle groups. Tourette syndrome is one of several tic disorders, which are classified by the Diagnostic and Statistical Manual of Mental Disorders (DSM) according to type (motor or phonic tics) and duration (transient or chronic). Transient tic disorder consists of multiple motor tics, phonic tics or both, with duration of at least 4 weeks, but less than 12 months. Chronic tic disorder is either single or multiple, motor or phonic tics – but not both – which are present for more than a year. Tourette's disorder is diagnosed when multiple motor tics, and at least one phonic tic, are present for more than a year. Although Tourette's is the more severe expression of the spectrum of tic disorders, most cases are nonetheless mild. There is a wide range of severity of symptoms in persons with Tourette syndrome, and mild cases may be undetected.

A large, community-based study suggested that over 19% of school-age children have tic disorders. The children with tic disorders in that study were usually undiagnosed. (Kurlan) As many as 1 in 100 people may experience some form of tic disorder. (NIH) Tourette syndrome is the more severe expression of a spectrum of tic disorders, which are thought to be due to the same genetic vulnerability. Nevertheless, most cases of Tourette syndrome are not severe. Although a good body of investigative work indicates genetic linkage of the various tic disorders, further study is needed to confirm the relationship.

Tourette syndrome (also called Tourette's syndrome, Tourette's disorder, Gilles de la Tourette syndrome, GTS or the more common Tourette's or TS) is an inherited neurological disorder with onset in childhood, characterized by the presence of multiple motor tics and at least one phonic tic, which characteristically wax and wane. Tourette syndrome is defined along a spectrum of tic disorders, which includes transient tics and chronic tics.

Tourette syndrome was once considered a rare and bizarre syndrome, most often associated with coprolalia, which is present in fewer than 15% of persons with Tourette's. It is no longer considered a rare condition, but the condition may not be identified because of the wide range of severity, with most cases classified as mild. The precise cause of Tourette syndrome is not known and the genes have not been identified, but genetic and environmental factors each play a role.

People with Tourette's have normal life expectancy and intelligence. Notable individuals with Tourette syndrome are found across many professions and in all walks of life. The severity of the tics decreases for most children as they pass through adolescence, and extreme Tourette's in adulthood is a rarity. Medication is not needed for most cases. Although no medication is effective for all persons with tics, there are medications and therapies that can help when their use is warranted. Understanding, knowledge about the condition, and a supportive family and community are the best treatments.

Tics are movements or sounds "that occur intermittently and unpredictably out of a background of normal motor activity". The tics of Tourette syndrome constantly change in number, frequency, severity, and anatomical location. Waxing and waning — a natural increase and decrease in severity and frequency of tics — occurs differently in each individual. Tics also occur in "bouts of bouts", which vary for each person.

Coprolalia (the spontaneous utterance of socially objectionable or taboo words or phrases) is the most publicized symptom of Tourette syndrome, but it is not required for a diagnosis of Tourette's. Fewer than 15% of Tourette syndrome patients exhibit coprolalia. Echolalia and palilalia occur in a minority of cases, while more common tics are eye blinking, throat clearing, coughing, neck stretching, and shoulder shrugging.

In contrast to the stereotyped movements of other movement disorders (e.g.; choreas, dystonias, myoclonus, and dyskinesias), the tics of Tourette's are temporarily suppressible and preceded by a premonitory urge. Immediately preceding tic onset, most individuals with Tourette syndrome are aware of an urge, which is similar to the need to sneeze or scratch an itch. Individuals describe the need to tic as the buildup of tension in a particular anatomical location, which they consciously choose to release, as if the subject "had to do it". Examples of the premonitory urge are the feeling of having something in one's throat, or a localized discomfort in the shoulders, leading to the need to clear one's throat or shrug the shoulders. The actual tic may be felt as relieving this tension or sensation, similar to scratching an itch. Another example is blinking to relieve an uncomfortable sensation in the eye. These urges and sensations, preceding the expression of the movement or vocalization as a tic, are referred to as "premonitory sensory phenomena". Published descriptions of the tics of Tourette's identify sensory phenomena as the core symptom of Tourette syndrome, even though they are not included in the diagnostic criteria.

Tics are described as semi-voluntary or "unvoluntary", because they are not strictly involuntary: they may be experienced as a voluntary response to an unwanted, premonitory urge. Tics are experienced as irresistible and must eventually be expressed. People with Tourette syndrome are sometimes able to suppress their tics to some extent for limited periods of time, but doing so often results in an explosion of tics afterward. The control which can be exerted (from seconds to hours at a time) may merely postpone and exacerbate the ultimate expression of the tic. People with Tourette syndrome may seek a secluded spot to release their symptoms after suppressing them in school or at work. Some people with Tourette syndrome may not be aware of the premonitory urge. Children may be less aware of the premonitory urge associated with tics than are adults, but their awareness tends to increase with maturity. They may have tics for several years before becoming aware of premonitory urges. Children may suppress tics while in the doctor's office, so they may need to be observed while they are not aware they are being watched. The ability to suppress tics varies among individuals, and may be more developed in adults than children.

Although there is no such thing as a "typical" case of Tourette syndrome, the condition follows a fairly reliable course in terms of age of onset and the natural time course of severity of symptoms. Tics may appear up to the age of 18, but the most typical age of onset is five to seven. The ages of statistical highest tic severity are 8 to 12 (average 10), with tics steadily declining for most patients as they pass through adolescence. The most common, first-presenting tics are eye blinking, facial movements, sniffing and throat clearing. Tics most frequently present initially in midline body regions where there are many muscles: the head, neck and facial region. This can be contrasted with the stereotyped movements of other disorders (such as stims and stereotypies of the autism spectrum disorders) which typically have an earlier age of onset, are more symmetrical, rhythmical, bilateral, and involve extremities (e.g.; flapping hands). Tics appearing early in the course of the condition are frequently confused with other conditions such as allergies, asthma, and vision problems: pediatricians, allergists, and ophthalmologists are typically first to see a child with tics.

Among patients whose symptoms are severe enough to warrant referral to clinics, obsessive-compulsive disorder (OCD) and attention-deficit hyperactivity disorder (ADHD) are often associated with Tourette's. Not all persons with Tourette syndrome will have ADHD or OCD, although in clinical populations, a high percentage of patients presenting for care do have ADHD. Approximately 40% of patients with Tourette syndrome have "TS-only" or "pure TS", referring to Tourette syndrome in the absence of ADHD, OCD or other disorders.

Treatment of Tourette syndrome focuses on identifying and helping the individual manage the most troubling symptoms. Most cases of Tourette's are mild and pharmacological treatment is not warranted: the prognosis is good for uncomplicated cases. In cases where treatment is warranted, treatment of Tourette syndrome can be divided into treatment of tics, and treatment of co-occurring conditions, which, when present, are often a larger source of impairment than the tics themselves. Not all persons with tics will also have co-occurring conditions, but when comorbid disorders are present, they often take treatment priority.

There is no cure for Tourette syndrome and no medication which works universally for all individuals without significant adverse effects. Knowledge and understanding are the best treatments available for tics. Management of the symptoms of Tourette's may include pharmacologic, behavioral and psychological therapies. While pharmacological intervention is reserved for more severe symptoms, treatment with other modalities may help avoid or ameliorate depression or social isolation, and improve supportive family functioning. Educating the patient, family, and surrounding community (school, church, friends, etc.) is a key part of treatment.

The majority of people with Tourette syndrome require no medication, but medication is available to help when symptoms interfere with functioning. Because children with tics often present to physicians when their tics are at their highest severity, and because of the waxing and waning nature of tics, it is recommended that medication not be started immediately or changed often. Frequently, the tics subside with understanding of the condition and a supportive environment. When medication is used, the goal is not to eliminate symptoms: it should be used at the lowest possible dose that manages symptoms without adverse effects.

The classes of medications with the most proven efficacy in treating tics — typical and atypical neuroleptics — can have long-term and short-term adverse effects. The antihypertensive agents, clonidine (Catapres®) and guanfacine (Tenex®), are also used to treat tics. Stimulants and other medications may be useful in treating ADHD when it co-occurs with tic disorders. Drugs from several other classes of medications can be used as alternatives when stimulant trials fail. Clomipramine (Anafranil®), a tricyclic antidepressant, and SSRIs, a class of antidepressants including fluoxetine, sertraline, and fluvoxamine, may be prescribed when a Tourette syndrome patient also has symptoms of obsessive-compulsive disorder.

Cognitive Behavioral Therapy (CBT) is a useful treatment when OCD is present, and there is increasing evidence supporting the use of habit reversal in the treatment of tics. Relaxation techniques, such as exercise, yoga or meditation, may also be useful in relieving stress that may aggravate tics.