1. What is TS?
TS is a tic disorder. It is a neurological condition. It is not emotional in origin but it may have psychological consequences and effects.
A tic is an involuntary movement (motor tic) or sound (vocal tic). Movements may vary from minor, e.g. eye blinking, to severe, e.g. complex movements of the whole body. Similarily, sounds may vary, from throat clearing to whole phrases. (For examples, see Appendix 1)
Although the movements are involuntary, the person may be able to control them at times. For example a child may control or suppress tics at school, however they may then tic constantly for a while as soon as they get home. Sometimes they may only release the tics in the privacy of their own room, so that others, even parents, aren't aware of their existence.
To be diagnosed with TS a person must:
> have motor and vocal tics (movements and sounds)
> have had them for at least a year
> have tics that come and go (wax and wane)
> have tics that started in childhood or adolescence, although they may not have been recognised as tics at the time
Other Tic Disorders
Transient tic disorder, chronic tic disorder and TS are a continuum all on the same spectrum and are a matter of degree:
Transient Tic Disorder - tics are present for less than a year
Chronic Tic Disorder - tics are present for over a year, either motor or vocal but not both
2. Does everyone with TS swear?
Calling TS "the swearing disease" is unhelpful and inaccurate.
Only 1 in 5 people who are seen at a clinic with TS have coprolalia (involuntary swearing).
It is a relatively unusual symptom of TS.
3. How common is TS?
Most research shows that 1 in a 100 people have TS! Many of these will never know or need any treatment.
Boys and men show the symptoms of TS more frequently than girls and women. The ratio is about 4:1.
However females in the same family are more likely to show symptoms of OCD (see Q6).
4. What causes TS?
In most people TS is a genetic, i.e. inherited, condition. However, there is not a single gene that causes the condition. At least 3 possible gene sites have been identified.
Other factors before or after birth may determine whether or not an individual with a TS gene has any symptomss.
There is a very strong genetic link between TS and OCD (see Q6).
Therefore, when a person has TS, other family members may have OCD.
5. Are there any symptoms other than tics? Yes!
Echolalia - repeating of phrases, immediate or delayed
Palallia - repeating of words or syllables
Coprolalia - speaking obscenities or socially taboo phrases
Copropraxia - obscene gestures
Apraxia - inability to carry out an action, such as reading, without neurological cause
Eating Difficulties - from compulsive over-eating to anorexia nervosa
Because of the overlap with OCD, some behaviours, e.g. repetitive touching or tapping may be seen as complex tics or compulsive behaviours.
Other examples may be sniffing or licking objects.
(See "Lesser known symptoms of TS" - Appendix 2 )
6. Are there any other conditions associated with TS? Yes!
OCD (Obsessive Compulsive Disorder)
Symptoms include intrusive thoughts, e.g. of harm coming to a loved one and compulsions to carry out actions or rituals to overcome the associated anxiety or to stop the "bad thing" happening.
ADHD (Attention Deficit Hyperactive Disorder)
Symptoms include poor concentration, impulsiveness, over activity and disorganisation.
SLD (Specific Learning Difficulties)
e.g. Dyslexia - difficulty with reading and writing
Dyscalcia - difficulty with numbers
DCD (Developmental Coordination Difficulties)
Dyspraxia - difficulty with fine and/or gross motor control (may cause clumsiness)
SMD (Sensory Modulation Difficulties)
Symptoms include being over sensitive to some stimulation, e.g. to smells, touch, noise or under sensitive to others.
ASD (Autistic Spectrum Disorders)
Most people with TS are not autistic, however, a significant proportion of people with ASD, particularly Aspergers Syndrome, also have TS.
It is really important that the person with TS is seen as a whole person and all their difficulties are looked at and not just their tics.
Polydipsia - Excessive Water Drinking
People with polydipsia drink about 15 bottles of water a day. Toilet trips are very frequent. It is believed that the altered serotonin levels in Tourette's is to blame. Serotonin levels affect vasopressin levels and vasopressin controls the amount we drink.
Sensitivity to Heat
With this symptom, the person is always warm. In hot weather, the person boils, in cold weather they wear much less heavy clothing than would be expected. No theories were offered as to why this happens, but one person guessed that their body temperature was actually lower than the room.
5 out of the 13 Touretters mentioned they had this symptom. Some of them couldn't stand the feel of hair on their skin. Most cannot wear synthetic material or wool. Pure cotton undergarments seem to be the only acceptable alternative and a couple of women go bra-less because they are too uncomfortable otherwise. There seems a higher than normal level of allergies to things like detergents and cheap metal jewellery. Even the thought of touching chalk makes some of them squirm. Often a person with this symptom will feel suddently itchy all over, for no discernable reason. This itchiness can be triggered by watching seeing a biting insect, seeing someone else scratch, and even talking about scratching or itches.
7. How do I know if it is TS or just naughtiness?
Of course children with TS can be naughty. However, having TS is part of how you are made and influences everything you do, including misbehaving.
Therefore, children with TS may find it much more difficult to control their behaviour or may feel an irresistable urge to do things that they know they shouldn't, e.g. blurting out answers or comments in class, even when they know they should put their hand up.
When you have TS it is though, when a thought comes into your head, you just have to say or do "it". This is important for parents and teachers. For example, if you say to a child with TS "don't touch the fire", they may then feel compelled to do exactly that. Always tell a child with TS what you want them to do, not what you don't want them to do!
8. Why can people control tics sometimes but not at others?
Imagine trying to control a tickly cough during a wedding ceremony, or try holding your breath - you will eventually have to breathe! This is how some people with TS explain the need to tic.
The diagram below shows how different parts of the brain cause and try to control the tics. Many factors will influence who wins the "battle".
Whether the tics occur may depend on what the person is doing, e.g. when they are doing something they really enjoy that requires a lot of concentration, e.g. playing a musical instrument or on a PC, the tics may disappear.
If they are stressed, or relaxed but not doing much, e.g. watching TV, the tics may become worse.
9. Can it be treated?
The symptoms of TS can be treated but the condition cannot be cured. The best treatment can only be decided after a full assessment of all the person's TS related difficulties, not just the tics.
Drugs may be used to treat tics, OCD and ADHD.
Finding the right medication or combination of medications can be very difficult and several possibilities may have to be tried.
Commonly used drugs include:
Clonidine - may help tics and ADHD
Methylphenidate - may help ADHD - current thinking differs about the effect of methylphenidate on tics. In some children it can make tics worse and in others it may help.
Clomipramine, Fluoxetine and Paroxetine may all help OCD.
Sulpiride, Risperidone and Olanzapine are amongst the medications used to help tics.
All these medications may have side effects as well as positive benefits. Decisions to use them should be made jointly by all involved.
Cognitive Behavioural Therapy
May be used to help ADHD and OCD. Family counselling may help everybody to live with TS.
10. What is the outcome?
Many people with TS live very happy, successful lives.
You have probably met many, even if you didn't know it!
It is impossible to predict the outcome in any one individual.
Symptoms can be particularly difficult in adolescence but may settle down as the person approaches adulthood; although not always, unfortunately.
Outcome can be influenced by early diagnosis and positive intervention.
Compiled by adults and children with TS, parents of children with TS and Medical Adviser: Dr. Dorothy Taylor MBBS DCH MRC Psych
2010 © Tourette Scotland