Coming to terms with my Tourettes

Posted Mon 22nd Jul 2019 at 06:00
by Amber Wood

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Amber Wood writes about her sudden onset of TS at the age of 18.

It started the day after I took sertraline, an antidepressant, which was on Halloween ironically. It was my first year in university doing music, at 18, suffering majorly from depression and anxiety to the point where my safety and my ability to function were both at crisis point, and I was urgently referred to a psychiatrist. I was pretty jittery and odd on day one but the second day? I was in a lecture, and my shoulders were twitching on their own. I brushed it off as restlessness as a side effect. But my concern grew when my head jerked to the side of its own accord. This then spiralled into vocal sounds at the same time, a loud hiccup noise. I was embarrassed, my lecturers were confused and my friend (already with motor and vocal tics) was setting my movements, and vice versa.

A trip to A&E and they were confident it would go away by tomorrow when the sertraline would be out my system. I woke up and was lying still. But the moment I sat up, they went wild. Luckily I was to go home anyway as I'd managed 6 weeks away from there. I remember FaceTiming my Mum and she was over an hour away watching in distress at my rather startling movements and sounds. It was completely CONSTANT and exhausting to say the least.

I went to a GP at home in out of hours and was given a generous dose of diazepam. It was a lovely break from them but I was a zombie and they only came back with more power once I'd finished taking the lot of them. This was serious and not going away so it was then the neurologist, who advised an MRI scan and did all sorts of odd neurological tests. He described them as 'tics' but I didn't quite fit the criteria for Tourette's.

I came home for good. University was out of the question. My degree I strived for was out the window. Whatever 'this' was has got in the way. A clear sign that my body was in so much constant stress that it finally took its last toll and I had to withdraw and move out.

The unpleasant events continued after taking haloperidol and suffering the most bizarre and even more terrifying reaction beginning with severe restlessness, shaking, and progressing to tongue and head spasms, my head felt as if it was on fire and vibrating, pulling backwards, sideways, downwards on its own. My eyes rolled back with no control, I saw double, I couldn't speak properly, my teeth grinded on their own. All for 10 hours. And luckily wore off. And I am so lucky it wasn't permanent but it has led me to develop health anxiety. I did try clonidine but felt highly unwell, anxious and half my face swelled a little...meds are not the way for me.

I came to terms with it over time. People who knew me didn't treat me any different. It was hard to explain. The last time anyone saw me, I was still and quiet. Now I'm quite the opposite. My unofficial Tourette's completely changed me. People stare. I get the most dreadful headaches and muscle aches. Going to the shops exhausts me and I need a break the day after. But they are SO much better. I have particular triggers. But I am now able to keep still to play piano and guitar. Music is my ultimate passion and not even this can stop me. I can now meditate without any tic urges, which were severe when I first tried. I go regularly to a class.

Yes I worry about the possibility of becoming the stereotype of swearing, lashing out and shouting, I worry about going to the dentist next week as I was completely still last time, I worry about being unable to get a job like anyone else, I worry I'll be old and grey still jerking my head and making odd sounds, I worry I'll damage my neck over the years and need an operation, I worry everyday about my health due to the medication reaction, I worry about future medication trials.

But I have so much support. I got through something I'd never predict would happen. Who would? 'Oh, this time next year you'll have Tourette's'. I'd think you were mad! But I've just learnt so much, from this very rare and unfortunate experience. It took me out of uni which I was too unwell for, it's still allowed me to do music, and it's just a part of me but it's not a definition of who I am. It's something I now have to deal with daily, that I took for granted because of a small imbalance in my brain. Some days I will accept it, some days I wish it would go away. But it's decided to stay, and I think I'm okay with that.

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