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Tourettes Action
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It’s all gone Pete Tong.

If you were there you would know that my so-called talk on complimentary therapy at the TA conference the other weekend went somewhat pear shaped. It’s quite a difficult task talking to a crowd that includes a proportion of ticcers some of them having coprolalia like myself. So here goes, this is what I was supposed to say.

When I told my brother I had been diagnosed with Tourette’s he answered “Trust you!” He’s right in a way; Tourette’s syndrome is a strange, quirky condition and as no two people with TS are the same and individual approach needs to be taken with regards to the treatment for each person.

Now I’m quite a stubborn person, I don’t like being told what to do unless what I’m being told to do has some kind of logical benefit to me. I’ve tried three different anti-psychotics so far to treat my tics, I’m not saying that nobody should try them (obviously under the supervision of a specialist) I have friends who have been taking them for long periods of time and found them very helpful. The first landed me in A&E imagine the scene there I was with my German friend, bear in mind that since her arrival in Coventry she learnt English from her Coventrian partner and hasn’t bother learning to read or write English. My jaw was clamping up causing me the most painful experience I have ever had. All I managed to do to explain my predicament is write “haloperidol” on a bit of paper. Meanwhile I’m sitting on the A&E reception floor, the receptionist asks my friend what the problem is, my mouth is clamped shut, during the last opening I managed to fit in my scarf between my teeth, I get a few odd looks sitting on the floor in my leathers with an Arafat scarf in my mouth.. Well, it turned out I had a dystonic reaction to the haloperidol, this was quite frightening, not an experience I wish to repeat so obviously I became a bit wary when offered Risperidone, Risperidone works a treat for getting rid of tics, but it also ridded me of my mental faculties, I wasn’t me, as well as my faculties my personality had also drained away. However I gain some enhancement in the bosom department. That’s 2 dress sizes and 5 bra sizes.

By this time I had been referred to a specialist and reached the end of the queue, I was referred for a course of Habit Reversal Training which I found very helpful, It was very useful to meet up around once a month and chat to my HRT therapist about my TS and other things that were going on my life and understand the “mechanics” behind each tic and try and break it down and turn it into something else. I gave it my best shot and to help me along it was suggested I try a course of aromatherapy massages. This was a welcome treat and reliefs as some of my tics were causing me physical pain. This made perfect sense to me and after each treatment I hovered serenely to the station, got on the train and then, BANG the tics were back with a vengeance. Well at least they weren’t hurting as much.

If you haven’t met me in the flesh you will know that I’m not very good at holding tics in and I’m constantly ticcing, I tic around once or twice a second. That’s including little blinks, rabbit nose twitches, finger wiggles and muscles’ tensing that isn’t visible. The HRT was hard work, as trying to stop a tic and turn it into something else was difficult, my therapist would laugh as I would often hold my breathe whilst concentrating on replacing the tic. My record for stopping tics is 5 seconds. WOW!!!

To help me along with the HRT I was also prescribes Aripiprozole, along with the aromatherapy this helped by subduing the tics, but after giving it a good try Aripirozole wasn’t for me.

There is more to this, but I’m in need of a cup of tea and it’s getting a bit long so I’ll write some more maybe tomorrow.

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