Tourette Syndrome Information

tosy.co.uk - Tourette Syndrome Support in the UK

 

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 don’t “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 isn’t 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.  It's important to request referral to a TS specialist.

 

 

 

 

 

 

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 person’s 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:  [email protected]         

 

 

Tourette Syndrome Support UK

 

www.tourettesyndrome.co.uk    or    tosy.co.uk

 

E-mail:  [email protected]     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 etc

 

If you don’t 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.