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Current time: March 28, 2024, 8:11 pm

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Tourette's is Hell
#1
Tourette's is Hell
Edit: This post was written a few months ago, but I hadn't got around to posting it.

Ok, I have no idea why I'm writing this, but I need something to do whilst my MacBook copies my old 250GB hard drive to my new 640GB hard drive, so it seemed like something to keep me busy. This is more of a personal story / rant about Tourette's Syndrome, and as I don't talk about my personal life much on here, you may find it a different style to what I usually use. Ok, are we all sitting comfortably? Then I'll begin.



I'm in agony at the moment, knife-stabbing, gut-wrenching agony. My neck is tense; it hurts to move it even an inch, and I can't stop the pain. I've tried some ice-cold spray that is meant to ease muscle pain, but it doesn't work. I've tried rubbing Ibuprofen Gel into it - repeatedly - to no noticeable affect. To make matters worse, my brain, usually the most rational of items I have a claim to, is ordering my neck to move violently from side to side, twisting the already tightened muscles, causing even more pain. In short, I suffer from a neurological disorder known by the medical community as "Tourette's syndrome", and by the grossly misinformed public as "Hey look at that guy, he's shouting out swearwords...LMAO".

I've pretty much always had Tourette's, but I've only been able to call it Tourette's for the last 10 years or so. When I was 3, I started coughing, without reason, repeatedly. There wasn't anything stuck in my throat, I would just cough. Sometimes I'd be coughing regularly for weeks, and then suddenly have a brief period of silence. It made no sense. My parents were obviously concerned, and a doctor diagnosed me (falsely) with asthma. Of course, the inhaler just made me cough worse when I had to breathe in whatever they put in it, but a diagnosis is a diagnosis, right?

Later, some clever doctor worked out that I didn't have asthma after all! Huzzah! Unfortunately, that was the limit of his medical ability, and his knew solution was to take the lazy way out. "Why", he said to my mother, "young Adrian just has a bad habit". So, now instead of inhalers, I had punishments. The only way to get rid of habits is to make the child realize what they are doing is...*gasp*...naughty. So, I'd find myself denied treats because I was overheard coughing for no reason. My mother would hear me coughing in front of the TV and send me to sit on the stairs. "If you don't cough for 5 minutes, you can come back and watch TV" she'd say. Of course, none of this was her fault, and I forgive her entirely for her actions; she was taking the advice of bone-headed doctors. How was a child to explain to his mother that he honestly couldn't help coughing? When you are growing up, you have the opinion that how you experience is how other people experience, so you have no basis for what is "normal". In my eyes, my cough was normal for me, but if my mother was saying it was wrong, then I must be doing something wrong.

A few years later (when I was 7 I believe) I developed a new "tic"; head-twitching. For no apparent reason, I'd shake my head to one side, repeatedly. My mother noticed and questioned me about it. Afraid to admit to not being able to control it (in fear of it being labelled another "habit"), the young genius that I was came up with an elegant solution: "My hair gets in my eyes and I don't like it, so I have to shake it out of the way". How clever I was, to have come up with such a perfect solution! Don't blame me, blame the hair!

So my mother did, and took me to the hairdressers. A few snips here and there, and I had a short fringe, with absolutely no way of my hair getting in the way. I step out of the hairdressers...and...*shake* *shake*...I'm off again. My mother scolds me; "There isn't any hair to get in the way! Stop it!". I had nothing to say; I couldn't explain it. I didn't want to shake my head, but I could feel the motion coming on, and I couldn't stop it. I'd literally lost control of parts of my body.

A year later and I develop a new tic, what my mother calls an "exaggerated swallow". My throat contorts, as if about the swallow, but instead does something...well...weird. I'm not even quite sure how to describe it myself. I've just done one as well, whilst I was in the middle of writing this. You see, that is the bizarre thing about Tourette's (or at least, my Tourette's); you start talking about your tics and you have a compulsion to do them. I could quite easily write my life history here and by the time I was done, I'd have physically done all the tics I've ever had. But I digress; back to the story. Another year, another doctor. This one was concerned about the exaggerated swallow, so concerned that he felt it was a good idea to shove a camera down my throat to have a look.

I don't know if anyone here has had the unfortunate medical procedure of having a camera put down one's throat, but it starts badly and ends badly. First, they spray some disgusting liquid up your nose in order to clear the airway. This travels all the way up and then back down into your mouth, and it was foul. Once that is over (and as an 8 year old, I have no idea what is happening at this point), the guy takes a long thing tube, and starts feeding it up my nose. It hurts, it's annoying, and they've turned the TV monitor towards me so I can see everything as well. Naturally, I'm panicking and crying. As I watch my vocal chords move rapidly to the sound of my crying, the doctor gets me to do one of my swallows. His analysis? Nothing out of the ordinary at all. So, back to the "habit" theory for now.

Finally, after years of being ignored and told everything is my fault, a breakthrough. My mother, now determined to get some kind of answer, takes me to a private clinic. I spend an hour with the doctor there (a lady this time!), talking about what I feel like, and showing her my tics. At the end of the appointment, she turns to my mother and tells her (quite matter-of-factly) that "Your son has Tourette's syndrome".

Of course, whilst knowing what I had was a relief, the worst was yet to come. Tourette's syndrome is exacerbated by puberty, and that was right around the corner. So an onslaught of new tics came, one by one. I'd have more movements with my neck, I'd excessively blink, and (perhaps the worst of all) my tongue would repeatedly flick itself against the side of my mouth. If you want to try an experiment, try flicking your tongue over your bottom set of molars every few seconds or so. Do it until it really starts to hurt. Ok, you can stop now. Imagine that, but instead of being able to stop, you *had* to continue. Your brain was telling your tongue to cut itself to shreds in your own mouth. I would reach the point where I had to wear a mouthguard on my lower teeth to stop the pain. Of course, that didn't stop the tongue flicking, and eventually the mouthguard would wear through completely. I went through three of them in a couple of years.

I'd had enough; I wanted some way out of the pain. My mother took me to the local hospital, and I was prescribed Haloperidol, an antipsychotic drug used to suppress the brain's orders to my muscles. The only problem was, the doctor prescribing it didn't get to dosage correct. He gave me 5 times the recommended dosage for a child, and as a result, I lost control of some of my muscles completely. At school, my jaw suddenly locked up, and I was sent home. That evening, my limbs went out of control; my legs wouldn't support me, and my arm had a tendency to lift up above my head. That was the last time I used the drug (or any drug for that matter) to control my Tourette's.

So life continued, I went through puberty, and emerged relatively unscathed. My mother became an activist for Tourette's syndrome, holding lectures at schools about the reality of Tourette's, and how barely 20% of sufferers actually swear, or how it affects 1 in 100 school children. Later, she would become the chair of the Tourette's Syndrome Association (UK) and run various marathons for the charity. I developed verbal tics (squeaking noises mostly), which meant I had to sit my exams in a separate room so as not to annoy my classmates. I've sat my exams in a separate room every single time I've had to take one, even up through University, and in all probability, that will continue for the foreseeable future.

...and that's my story...so far.
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#2
RE: Tourette's is Hell
You're pretty awesome.
"God is dead" - Friedrich Nietzsche

"Faith is what you have in things that DON'T exist. - Homer J. Simpson
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#3
RE: Tourette's is Hell
I can't imagine anything more annoying. It kind of reminds me of that piece from the Simpsons with that man who had been hiccuping for two years and all he could say was, "Kill me, kill me now!", between hiccups.

Coming from the position of utter ignorance it does seem like a psychological condition, not that that makes it any less real, and if so, would some sort of hypnotherapy be helpful?

When we had the IQ2 debate I seem to remember that you twitched a bit but didn't take too much notice at the time. I probably thought it was just something you did when you were nervous or outside your normal area of comfort. Is this reasonable? I mean are there times in your life when it is more active than others, what sort of patterns do you notice?

I sympathise not only with your condition which must be very irritating, after all, there's only so much you can adjust to, but also the neck pain which I'm sure, at the moment, is the thing driving you up the wall the most!
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#4
RE: Tourette's is Hell
I said above that it was neurological Wink

Unfortunately nothing helps other than some medication that I'm planning on taking in the future. It's got to the point where it has stopped being just a nuisance and has started to make me worried about the damage I'll eventually do to my neck.

It does get worse in stressful situations; meeting new people, etc. However at the moment the noises I make happen regardless of whether I'm stressed or completely relaxed.
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#5
RE: Tourette's is Hell
I hate it when a sickness is stereotyped. Some people think Dyslexia is just reading words backwards, when really it's about your brain having trouble connecting the letters to become words. It can manifest itself as reading backwards, but not always. But yeah, I used to think Tourettes was about yelling things, the South Park episode certainly didn't help. I ended up watching a special on it, showing a kids camp and all the children had very different manifestations of the syndrome.

I definitely feel for you, Adrian. Dealing with medical problems as a child is the worst, because you can't even really understand what is happening or why.
"The way to see by faith is to shut the eye of reason." Benjamin Franklin

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#6
RE: Tourette's is Hell
The South Park episode is hilarious though Big Grin
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#7
RE: Tourette's is Hell
I feel for you, too. I know what's it's like to get a disease as a child. Er, well, preteen.

Tourette's sounds awful...
Eeyore Wrote:Thanks for noticing.
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#8
RE: Tourette's is Hell
If I were you, I would have preferred the blatant swearing. Wink

Obviously, that sucks. That about sums it up. I sincerely hope that you find some sort of relief in the future.
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#9
RE: Tourette's is Hell
Beautifully written Smile

And here I was thinking this was going to be an excuse for you insulting people and getting away with it Big Grin
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#10
RE: Tourette's is Hell
If Adrian gets away with calling me a shithead because he has tourettes, I am going to freak out. /kidding
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