15/05/2022
What actually is Tourette Syndrome?
Tourette Syndrome is a complex neurological condition that there is no cure for. It is characterised by involuntary movements and sounds called tics. Tics are movements or sounds that are done repeatedly. Movement tics are called motor tics and sounds are called vocal tics.
To be diagnosed with Tourettes you need to have at least one vocal tic and multiple motor tics and need to have had tics for at least one year, however these do not have to be the same tic, the tics can change all the time.
“Usually” tics will start gradually, so may start with something like an eye roll or a facial grimace, this may last a few months and go and then the month after something else like a nose scrunch may appear. This may also hang around for a few months and then go and be replaced by something else. This starting and stopping and changing of symptoms is often what confuses families and what stops them from getting medical advice, as after watching for a few months and observing, families may be ready to go to the GP and the tic will go. But then they find a few months later it is replaced by something else. For children with Tourette’s, tics usually peak in intensity in the run up to puberty and it is usually at that point that people get medical advice.
Before a tic an individual usually experiences what is called a premonitory urge, this can be explained as a build up of increasing tension, which gets greater and greater until the tic is released and then it is temporarily relieved.
Many people think that Tourettes is rare, it however it is thought to affect 1 in 100 school aged children, many often going undiagnosed or being misdiagnosed! Around 80% of people with Tourettes will have other cooccuring conditions, the most common occurring are ADHD, OCD and ASD. Sometimes individuals will not meet the criteria to get a diagnosis of these other conditions but they will almost always have traits of these conditions alongside their Tourettes.
Motor tics are things like:
blinking
facial grimicing
rolling eyes
squinting
sticking tongue out
kicking legs out
pulling on clothes
jumping
head jerking
body extension and twisting
toe curling
touching things repeatedly
running
dropping to the floor
thrashing your body about
twisting your body
stomach clenching
punching
breathing in and out repeatedly
Vocal tics are things like:
throat clearing
grunting
coughing
spitting
screaming
growling
repeating words or phrases
change in voice pitch, high or low
animal sounds
shouting
squeaking
sniffing
swearing
With Tourettes often comes impulsive tics, these can include things like: running into a road, touching hot things, touching flames, squeezing the contents of bottles, throwing items, ripping up school work, scribbling over school work etc.
Practically anything can be a tic. Tics and the associated symptoms of Tourettes are different for EVERY person with Tourettes, no two people with Tourettes will have exactly the same symptoms.
Tics can change daily, this can cause confusion as people think “you weren’t doing that yesterday”, Tourettes likes to keep us on our toes.
Tics can also sometimes seem purposeful in nature and mistaken for "naughty" behaviour. Vocal tics may cause someone to shout things out about a persons appearance or make them shout things about a certain environment they are in, so for instance shouting "bomb" when at an airport. This does not mean that the person is thinking those things or wants to say those things.
Lots of people that have Tourette’s hate the attention that it brings and have learnt to suppress when in public, this can bring problems of people not believing they have Tourettes as they don't see it. Suppression is exhausting and causes a lot of pain. Tics that have been suppressed come out later when home usually with more ferocity and frequency, often causing tic attacks. Tic attacks are tics that continue for hours with no break, they are extremely distressing and exhausting. Its like running a race, being out of breath, being physically exhausted, wanting to stop but can't, so the exhaustion and pain gets worse. Often after a tic attack individuals can be left exhausted, in pain, with muscle strain and often emotional.
Tics can cause injuries such as: repetitive strain injuries, broken bones, dislocations, cuts and bruises, bleading toes, bleeding throat, to name a few things. People with Tourettes talk about feeling pain daily, this is to do with the repetitive nature of the tics, often suffering with headaches and tiredness from the strain tics put on the body.
If this wasn’t enough to deal with, they have to deal with the small minded people in society. Lots of people will stare, tutt, move away or even hail abuse. Maybe these things wouldn’t happen so much if awareness was greater and would make Tourettes just that little bit easier to deal with. Tourettes can be an extremely isolating condition.
Tourettes remains one of the most complex and misunderstood conditions, even by professionals and is a lifelong condition. Many people even professonals still believe that you need to swear to be diagnosed with Tourettes and also that it is behavioural, both statements are incorrect!
Between 10% and 20% of people with Tourettes swear and Tourettes is a neurological condition not behavioural. There is minimal treatment currently available for Tourettes, treatments offered can include: medication or CBiT (Comprehensive Behavioural Intervention for Tics). CBiT is often misunderstood by its name, making people think that tics are often behavioural in nature, when they are not. CBiT can help individuals change bothersome tics into a less bothersome tic, so if the person had a tic that was causing them huge amounts of pain, they would be taught by the therapist to first concentrate on the premonitory urge associated with this tic and then going forward when ever they felt this urge they would be shown a different movement to do, overtime it is believed that the pathways in the brain change and this tic will in fact be amended to the new movement which is not as bothersome.
For anyone who suspects their child has Tourettes, my advice would be to firstly go to your GP and ask for a referral to a neurologist. If you are not successful in accessing a diagnosis or care due to lack of services locally to you, then I would strongly recommend that you write to your CCG, Parent Carer Forum and MP highlighting the issue locally.
Secondly my advice would be to surround yourself with good friends who understand (unfortunately not everyone will understand), reach out to charity’s where you can educate yourself and join a local support group where you will find so much help and understanding, these people understand you, they are fighting the same battle, they get the struggles and they can offer endless advice and if all else fails you can laugh and cry together.
Hopefully by reading this you have learnt a little bit about Tourettes and what it entails.
Please share - Tourette’s Awareness Month 15th May to 15th June 2022
