Tourette Syndrome affected me at a very early age. By the age of nine I was diagnosed with this neurological disorder after months of motor and vocal tics.
Although Tourette Syndrome tends to first cause tics in childhood, tics can sometimes begin later in life. They may disappear in adulthood or be lifelong. The severity and frequency over the years can vary also, sometimes affected by external factors such as diet.
I can only speak from my experience as TS varies for everyone. However I will mention statistics from notable organizations and charities that show how experiences may differ for others.
When do tics start?
I was nine. This is a little later than the average age of tics to develop, over at Tourettes-Action they state the average is around six to seven years of age.
The NHS puts it a little earlier at five years, adding the following:
‘Very occasionally they can start in adulthood’
So an adult onset of tics doesn’t seem too rare.
Despite this, the Tourette Association of America states that individuals must show tics before the age of 18 to be diagnosed with Tourette Syndrome.
This may be partly due to the fact that tics can develop for other reasons in adults.
Moleculera Labs state that 1 in 3 adults with new tics have an external factor cause it, such as a head injury, illness or traumatic event.
It is important to remember that not all tics are Tourette Syndrome. There are various factors that determine what tic disorder they are caused by, depending on the number of tics, whether they are motor, vocal or both and duration.
Can tics improve/ worsen over time?
Going back to my experience, they have certainly varied over time. Not only in the kind of tics that I carry out, but the intensity of them and frequency.
Mine were certainly strongest when I was diagnosed. They were more complex and required more muscles to do them, and this was noted in my medical records.
My teenage years were not so bad, probably helped by medication I was on. However in my twenties they came back, in the form of more mild tics such as blinking, head nodding and humming/grunting.
They have stayed this way until the present day.
However as I type this at the age of 32, on the 24th September 2021, they are worse than they have been in years. This has been the case for a week.
I put this down to quitting alcohol, sugar and caffeine, however relapsing and consuming caffeine and sugar again in the past two weeks. I have stopped consuming these as of two days ago and will see the results of this.
Speaking with specialists it is apparent that for many tics begin to subside in adulthood.
I was first made aware of this as a child. My neurologist told me that two-thirds of patients see tics reduce.
I have explained to the family the nature of this condition and how in approximately two-thirds of patients the motor twitches tend to dampen in early adulthood. However in one-third of patients the condition can be permanent.Consultant Paediatric Neurologist- Dated 16th April 1999
The NHS still states that symptoms ‘usually improve after several years’.
Can tics go away completely?
Although there is no cure for Tourette Syndrome, tics can reduce significantly or sometimes go away completley.
There doesn’t seem to be many statistics on those that have stopped experiencing tics however most organisations such as the NHS and NINDS agree that ‘sometimes’ tics disappear or ‘some people’ become tic-free.
It is great news to hear that so many sufferers tend to see a reduction of tics over time. However this isn’t always the case.
In my experience tics have varied in intensity, but over time have reduced in complexity from more complex to more simple tics.
And although I have seen a very recent increase in tics, they aren’t as troublesome and obvious as they were in childhood.
Many sufferers understand what can affect tics, such as diet and exercise or stress.
For this reason, there are ways to create the best life possible around the neurological disorder, even if it never goes away completely.
Tourettes-Action: Symptoms of TS
NHS: Tics overview
Tourette Association of America: FAQs- What is Tourette Syndrome?
Moleculera Labs: Motor and Vocal Tics
National Institute of Neurological Disorders and Stroke: Tourette Syndrome Fact Sheet