Questions and Answers on Tourette Syndrome
There is one machine that weighs just three pounds, contains ten billion working parts, functions by chemistry, electricity and means not yet fully understood, and can casually perform acts that make even the most modern super-computer seem primitive.
It is the human brain. Sometimes, however, it is mysteriously mis-wired...
- What is Tourette Syndrome?
- How are tics classified?
- Do people with T.S. have other associated behaviors in addition to tics?
- Obsessive Compulsive traits
- Attention Deficit Hyperactive Disorder
- Learning Disabilities
- Behavioural Problems
- Sleep Disorders
- What are the first symptoms?
- What causes the symptoms?
- Is T.S. inherited?
- How is T.S. diagnosed?
- Is there a cure?
- Is there ever a remission?
- How would a typical case of T.S. be described?
- How is T.S. treated?
- How many people have T.S.?
Q: What is Tourette Syndrome?
A: Tourette Syndrome (TS) is a neurological or "neurochemical" disorder characterized by tics -involuntary, rapid, sudden movements that occur repeatedly in the same way. The symptoms include:
- Both multiple motor and one or more vocal tics present at some time during the illness although not necessarily simultaneously;
- The occurrence of tics many times a day (usually in bouts) nearly every day or intermittently throughout a span of more than one year; and
- The periodic change in the number, frequency, type and location of the tics, and in the waxing and waning of their severity. Symptoms can even disappear for weeks or months at a time.
- Onset before the age of 21.
The term "involuntary" used to describe tics is a source of confusion since it is known that most people with TS do have some control over their symptoms. What is not recognized is that the control, which can be exerted from seconds to hours at a time, only results in more severe outbursts of symptoms. Tics are experienced as irresistible and, as the urge to sneeze or scratch a mosquito bite, must eventually be performed. People with TS often seek a secluded spot to release their symptoms after delaying them in school or at work. Typically, tics increase as a result of tension or stress and decrease with relaxation or concentration on an absorbing task.
Q: How are tics classified?
A: The two categories of the tics of TS and some common examples are:
Simple:
- Vocal - Throat clearing, barking noises, sniffing, and tongue clicking.
Complex:
- Motor - Jumping, touching other people or things, smelling, twirling about, and self-injurious actions including hitting or biting oneself.
- Vocal - Uttering noises, ordinary words or phrases, coprolalia (vocalizing socially unacceptable words), and echolalia (repeating a sound, word, or phrase just heard).
The variety of tics or tic-like symptoms that can be seen in TS is enormous. The complexity of some symptoms often confuses family members, friends, teachers and employers, who may find it hard to believe that the actions or vocal utterances are involuntary.
Q: Do people with TS have other associated behaviors in addition to tics?
A: Some people with TS may have such additional problems as:
in which the person feels that something must be done over and over. Examples include touching an object with one hand after touching it with the other hand to 'even things up' and repeatedly checking to see that the flame on the stove is turned off. Children sometimes beg their parents to repeat a sentence many times until it 'sounds right'.
Hyperactivity and/or Attention Deficit Disorder (ADD)
Often children will show signs of hyperactivity before TS symptoms appear. Indications of hyperactivity and ADD may include:
- difficulty in concentrating
- failing to finish what is started
- not seeming to listen
- being easily distracted
- often acting before thinking
- shifting constantly from one activity to another
- needing a great deal of supervision
- and general fidgeting.
Adults may have residual signs of ADD such as overly impulsive behaviour and concentration difficulties.
such as dyslexia, arithmetic disorders and perceptual difficulties.
which may result from obsessive compulsive traits, attention problems, poor self-esteem due to TS symptoms, and poor school performance.
which may include walking or talking in one's sleep and frequent awakenings.
Q: What are the first symptoms?
A: The most common first symptom is a facial tic such as rapidly blinking eyes or twitches of the mouth. However, involuntary sounds, such as throat clearing and sniffing, or tics of the limbs may be the initial sign. For some, the disorder begins abruptly with multiple symptoms of movements and sounds.
Q: What causes the symptoms?
A: The cause has not been definitively established, although current research presents considerable evidence that the disorder stems from the abnormal metabolism of at least one brain chemical (neurotransmitter) called dopamine. Undoubtedly, other neurotransmitters are also involved.
Q: Is it inherited?
A: Genetic studies indicate that TS is inherited as a dominant gene that may produce different symptoms in different family members. A person with TS has about a 50% chance of passing the gene to one of his/her children. However, that gene may express itself as TS, as a milder tic disorder, or as obsessive compulsive symptoms with no tics at all. It is now known that a higher than normal incidence of milder tic disorders and obsessive compulsive behaviors occur in the families of TS patients.
The sex of the child also influences the expression of the gene. The chance that the child of a person with TS will have the disorder is at least three times higher for a son than for a daughter. Yet only about 10% of the children who inherit the gene will have symptoms severe enough to ever require medical attention. In some cases, TS may not be inherited; these cases are identified as 'sporadic' TS because the cause is unknown.
Q: How is TS diagnosed?
A: The diagnosis is made by observing the symptoms and by evaluating the history of their onset. No blood analysis, x-ray or other type of medical test exists to identify TS. However, a doctor may wish to order an EEG, CAT scan or certain blood tests to rule out other ailments that could be confused with TS.
Q: Is there a cure?
A: Not yet.
Q: Is there ever a remission?
A: Some people experience either a complete remission or a marked improvement in their late teens or early twenties and find that they get better, not worse, as they mature. Those diagnosed with TS can anticipate a normal life span.
Q: How would a typical case of TS be described?
A: The term 'typical' cannot be applied to TS. The expression of symptoms covers a spectrum from very mild, which is true of most people, to quite severe.
Q: How is the Syndrome treated?
A: Lots of people with TS are not significantly disabled by their tics or behavioural symptoms, and therefore do not require medication. However, many must use medications to help control symptoms which interfere with functioning. The drugs include haloperidol, clonidine, pimozide, chonazepam, Mogadon and clomipramine. Stimulants such as Ritalin and Dexedrine that are prescribed for hyperactivity may increase tics, and their use is controversial.
The dosage necessary to achieve maximum control of symptoms varies from each patient and must be gauged carefully by a doctor. The medicine is administered in small doses with gradual increases to the point where there is a maximum alleviation of symptoms with minimal side effects. Some of the undesirable reactions to medications are muscular rigidity, fatigue and motor restlessness, most of which can be reduced with specific medication (which, however, may have its own side effects). Depression and cognitive impairment, other possible side effects, can sometimes be alleviated with dosage reduction or a change of medicaiton.
Other types of therapy may also be helpful. Psychotherapy can assist a person with TS and his/her family cope with the psycho-social problems associated with TS. Some behaviour therapies can teach the substitution of one tic with another that is more acceptable. The use of relaxation techniques and/or biofeedback can serve to alleviate stress reactions that cause tics to increase.
Q: How many people have Tourette?
A: Since many people with TS have yet to be diagnosed, there are no absolute figures. Recent genetic studies suggest that the figure maybe one in two hundred, if those with chronic multiple tics and/or transient childhood tics are included in the count.