Tourette Syndrome Information
Tourette Syndrome is a neurobiological
condition that causes tics. For the vast
majority, it is mild, and there are no problems other than tics.
Tourette Syndrome
20% of children have tics during childhood transient tics
usually last for a while before disappearing again. Chronic
tics stay the same and last for many years. The
tics in tourette syndrome change frequently, and the person often has several tics at any
one time. As a tic disappears, then it is
usually replaced by another one. For
diagnosis of TS, there must be both motor (bodily twitches, blinking etc) and phonic tics
(any sounds), they must frequently change, the tics to have been present for more than a
year, and the tics must have started before the age of 18.
TS was said to affect 1 in 2000 people, but recent research shows it is a lot more common (as much as 3%). It is normally only when problems, in addition to tics, are present, that people seek help from their doctor. TS is invariably misunderstood, and sufferers often endure ridicule and prejudice. Many doctors know little about TS, and the tics are often misdiagnosed as allergy symptoms or nervous habits. The best doctors to treat TS are neuropsychiatrists who specialise in TS and associated disorders.
Tics
Tics are movements or sounds that are repeated again and again. These tics are involuntary, and therefore the
person has no, or very limited, control over them. Some
people are able to suppress them for a short time, but this usually results in even more
tics when they are released. The person with
TS describes these tics as compelling they have to do them, if they try not to,
they dont feel right. The sensation prior to a sneeze has been likened
to that of a tic it has to be expressed. Examples
of tics are: blinking; sniffing; eye rolling;
nodding; facial twitches; throat clearing; head shaking; shoulder shrugging; mouth
opening; and humming. Sometimes the tics can
be particularly embarrassing, such as coprolalia (socially unacceptable words or phrases)
and echolalia (repeating words over and over). Some
tics may be quite bizarre, such as twirling around or touching the ground every few paces.
Tics often disappear during sleep, during times of concentration
(working on a computer etc), or relaxing. They
are often worse during times of stress, or for some, during times of relaxation when they
feel they are able to tic without worrying about the reaction of others. Some people only
tic when they are in the refuge of their own home, and others may not be aware of the
tics. It is often not the tics which cause a
problem, but the reaction or attitude of others.
Cause
TS is believed to be inherited, and people with TS often have
others in their family with tics, or with ADHD or OCD (see Other Problems). The responsible gene appears to cause a
hyper-sensitivity to,
or inability to regulate, dopamine and serotonin
these brain chemicals (neurotransmitters) help to transmit messages through the
nervous system.
Treatment
Treatment often isnt necessary. In the vast majority of cases, TS is mild - a diagnosis though is still important. Having a name for their tics may be all that is
required, an explanation for years of tics and habits (as people invariably
call them), for the teasing, for feeling weird, and being misunderstood. If the tics, or other conditions, are causing
problems, then there are medications that can help. There
is no one medication that will rid all tics. It
is often necessary to try 2 or 3 medications and then vary the dosage until optimum relief
is experienced.
Other treatments such as relaxation, behavioural therapy, or
alternative methods may help. Many people are
able to redirect a troublesome tic, and thereby substitute another, perhaps more
acceptable one.
Prognosis
People with TS live a normal life span. It is thought that tics may peak or worsen at or
between the ages of 9-15, and thereafter decrease. Many
people with TS, about a third, lose all tics completely by adulthood, although tics
sometimes do return later in life. Another
third experience a reduction in their symptoms by adulthood, and the remaining third have
tics (which may be severely disruptive) throughout their life. However, as can be seen from the list of positives
the vast majority of people lead a successful life.
Other Problems
TS may appear on its own, where the only symptom is tics. However, it does often occur with other
conditions. Most commonly, ADHD (Attention
Deficit Hyperactivity Disorder which can occur without hyperactivity) and OCD
(Obsessive Compulsive Disorder) when the person has obsessive thoughts, and actions they
are compelled to do. They may even
things up on both sides, or check things over and over; children may insist things
are repeated until it feels right. Some
other learning difficulties such as handwriting problems may also be present. The tics
themselves, or concentrating on suppressing them, may also cause problems at school. Some people with TS have problems with a quick
temper and get angry easily, or have trouble sleeping.
Positives
Tourette Syndrome does not affect a persons intelligence,
and most people with TS appear to have above average intelligence. The following are also thought to be common
characteristics of people with TS:
Verbal, witty, sharp humour, strength of character, animated, life of the party type, delightful, talented mimic, uninhibited, hard working, musical talent and improvisational skills, quick reactions and reflexes, competitive, playful, energetic, enthusiastic, full of ideas, joyful, natural acting ability, creative and ambitious. There are many successful people documented with TS Samuel Johnson almost certainly had TS, and present day examples include surgeons, pilots, neuroscientists, psychologists, teachers, musicians, actors, photographers, journalists etc.
Help available
The Tourette Syndrome (UK) Association
PO Box 26149, DUMFERMLINE, KY12 9WT
Helpline 0845 4 581 252
E-mail: enquiries@tsa.org.uk
Tourette Syndrome Support UK
www.tourettesyndrome.co.uk
or tosy.co.uk
E-mail: mail@tourettesyndrome.co.uk
or tosy@tosy.co.uk
An internet based information and support
centre for the UK
Information, Discussion Forum, Chat
Room, E-Mail Directory, and many Links including TS Web Sites, Online Support,
Articles, Education, Treatment of TS and Information for Physicians, ADHD, OCD, and
Education links
If you dont have internet access at
home, your local Library may offer free internet access for the public. There may also be an internet café in your town.