My tic List I Things I struggle with I Things that help me with Tourette’s I Tourette’s Information
I have had tics for as long as I can remember really. My parents first noticed tics when I was about 5 years old when I was in a school play. They noticed me doing small things like twitching my nose and opening my mouth really wide. These two tics I still do to this day! Because they were so small, my parents ignored them for a while and we would just call them my habits or twitches. More small tics like this developed over the next few years and we started noticing patterns. We started noticing that these “twitches” or “habits” would get worse when I was tired, excited or worried. The next thing I developed was what we now think was a breath holding tic which would make me feel super lightheaded and dizzy.
Because of this I had already started struggling in school and being in the classroom for so long everyday so I started flexi-schooling. This meant that I spent the first three days of the school week (Monday-Wednesday) in school and then would do home education on the last two days (Thursday and Friday). This made a big difference and really helped me cope with school better. This also gave me extra time for music lessons and to practice which rapidly grew my love and passion for music.
Then in November 2015 my world turned upside down. I started having around 1000 very violent often full body tics everyday which completely disabled me. I was no longer able to eat on my own, walk on my own, go to school or basically do anything. My parents made a makeshift bedroom for me that was safe with as many pillows as possible and a mattress on the floor so that I couldn’t fall off my bed or damage my head on the walls. I spent all my time in that room if I wasn’t in hospital. At the time no one knew that it was Tourette’s Syndrome (TS) so they were checking for all sorts of other things. Lots of these tests were made challenging because of my tics. Having an MRI scan of my brain meant having to have a general anaesthetic. I also had many epilepsy tests like EEG’s, some of which were 72 hour ones were I had wired attached to my head connected to an electrical box monitor which I had to wear and take home with me for a couple of days! But don’t worry I still convinced my mum to let me go to string orchestra despite all the wires!
My paediatrician eventually came to the conclusion that I should start taking a medication called Clonidine which is sometimes used to treat TS. Because I was very young and it is a blood pressure medication being used off-label I had to go on it very slowly step by step so it took a long time to get to the right dose. At first the chronic fatigue side effect really knocked me out making me a little bit like a zombie but this lessened slightly over time. Once I reached a certain dose my tics became just about manageable.
It was around this time that I also got referred to CAMHS for the first time. They really helped me deal with my anxiety and especially with my transition back into school. After three months of not being at school I started to transition slowly and going in a couple of mornings a week which was quite a big step for me as I was very anxious having not been there for so long, and also I was never sure when I would tic or hurt myself. CAMHS really helped with my transition back to school and supported me, my family and the staff at the school.
At the time no one in Cornwall could diagnose TS (Tourette’s Syndrome) so I got referred to Great Ormond Street Hospital in London (GOSH). However, because this is a clinic in London there was quite a long waiting list. Once I managed to get an appointment me and my parents travelled up to London which was when I got my proper diagnosis of Tourette’s Syndrome and OCD (obsessive compulsive disorder). They offered me an online course of ERP (exposure response prevention) which is a type of tic therapy. It taught me how to be more aware and to recognise my tic urges (premonitory urges) and then to resist the urge for a short amount of time. This meant that I could learn to put down a glass of water before ticcing or walk up and down stairs safely on my own. Tic therapies are not cures but I describe them as tools in your tool-kit to help you manage through daily life.
A couple of years later I developed my first “wordy” vocal tics. My first one was the word “cat” which stuck around for a long time! From then I’ve had a wide range of other vocal tics. Check out the “my tic list” page for more information.
I also had a period of time in my first two years of secondary school where I struggled a lot with a variety of leg and foot tics. This made walking increasingly impossible. In the end I started using a wheelchair for longer distances, like outside of the house and around school. It was hard to adjust to at first but it gave me my freedom back and I started to view it as a positive instead!
In more recent years I got referred to the Evelina Children’s hospital in London for a different tic therapy. This one is called Habit Reversal Therapy (HRT). This is a brief explanation of what HRT is. It involves highlighting particularly annoying or painful tics and talking through which parts of the body and muscles are involved. The next step is increasing the persons’ awareness of the premonitory urge. The most important part is to then find a ‘competing response’. This trains the person to perform an intentional movement which means that the tic cannot happen. It has to be something which is less obvious or bothersome than the tic itself. Holding this intentional movement until the tic urge itself fades away. Once again HRT is not a cure but a tool which you can implement with future tics.
TS is a condition that is always changing so I don’t doubt that there will be many new challenges I have yet to face in the future. I am sharing some of my journey so far to educate, raise awareness and help anyone else out there who is having similar struggles to know that they are not alone.