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Anyone else have a tic disorder or Tourette Syndrome?

Southern Discomfort said:
Well I didn't get any of the things I wanted. He confirmed that what I do have are tics and that I am on a "tic spectrum" but stopped short of diagnosing me with Tourette's Syndrome because I do not copy what others say (echolalia) nor do I swear (coprolalia) which is just flat out wrong. So I've written to him to explain in more detail, I've also challenged him on what he knows of the condition mainly the above. I've also emailed Tourette's Action because I don't feel like I was given a fair deal; I am worried about my future employment prospects if I can't give a sufficient explanation to why I might be violently punching myself in the face whilst working.
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Sounds like you're coming up against the same problems I faced. It's like how people think of 'Rain Man' when they think of Asperger's; Tourette's means swearing. I had that issue in even being referred by a GP. Like I've said before, my diagnosis by a neurologist was "a tic disorder which is Tourette's like", which is far from helpful as it doesn't actually mean anything. It's not an actual diagnosis of anything. Plus in my case it doesn't help that there's nothing on my medical records about it beyond that I was referred to neurology :rolleyes:

Tourette's action have lists of consultants who can diagnose, however they're not always 100% up to date and it doesn't always guarantee that the person you will end up seeing on the NHS even knows much, if anything, about it.

I wish you luck.
 
xudo said:
Sounds like you're coming up against the same problems I faced. It's like how people think of 'Rain Man' when they think of Asperger's; Tourette's means swearing. I had that issue in even being referred by a GP. Like I've said before, my diagnosis by a neurologist was "a tic disorder which is Tourette's like", which is far from helpful as it doesn't actually mean anything. It's not an actual diagnosis of anything. Plus in my case it doesn't help that there's nothing on my medical records about it beyond that I was referred to neurology :rolleyes:

Tourette's action have lists of consultants who can diagnose, however they're not always 100% up to date and it doesn't always guarantee that the person you will end up seeing on the NHS even knows much, if anything, about it.

I wish you luck.
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Okay, thanks. I've just heard back from TA in the last hour so the ball is moving now. I've told them that I have not see a specialist in TS yet.
 
I have good news! I recently received a letter from St George's University Hospital London's Tic Clinic! I have an appointment in October. This has been 3 months in the making since I saw my GP about my tics. They've say they can offer a diagnosis and treatment if necessary. Just confirmation would be nice at this stage although the future does worry me.

I've had a nice break from my tics for the last few months, I think I have my games to thank for that, I got back into World of Warcraft for a couple of months now I'm focused on my table top role playing games. My dad actually asked me where they went but unfortunately they've never stopped. But are starting to wax again though. But I don't mind. Bring it on.
 
I had my appointment at St George's! I was diagnosed with adult onset Tourette's Syndrome. The doctor said my case with doubly unusual because of my late onset and quiet ramp up of tics to where they are now. And not an explosive onset like many others.

On the topic of where they are now I'm still barking like a dog a lot but I'm also saying "Gertcha" a lot (Cockney slag for something I don't know, RIP Chas). But I've also started swearing unfortunately. I've started giving the two finger salute and saying a lot of words. Last week I replied to my boss when she said "A line of..." in reference to something on a crossword puzzle, I replied back saying, "Drugs!". Yeah, it's a difficult transition when you start having responsive tics like that.

On the plus side though I've gotten lots of support from friends on Facebook and also found myself invited to two groups on there with lot of people around the UK with Tourette's, some from documentaries so that's been quite nice.
 
Had enough appointment at St George's again, yesterday. Came back from London in the dying minutes of the night.

Gonna try another medication, topiramate. So that'll be three things I'm on. the doctor took an interest in my friend's assistance dog he brought with him. Never had he seen a dog like that for Tourette's (my friend has TS too), he asked a colleague in to have a look too.

We had a lot of fun and was setting each others tics off all the time. When I barked, he'd meow.
 
Spent the nearly the entire of Monday last sounding like a raven. Sigh. Just writing about it brings it back. It was awful. I couldn't do anything for the whole day. It was truly a disabling day. I couldn't write. I couldn't relax. I didn't even want to game. I did basically bugger all the entire day. I took most of the week for me to bounce back. Fortunately sleeping on it my brain each night forgot how to do it - sort of a shame in some regard because by the end of Monday I had nailed it! Haha. But it was nice to break the cycle.

Apart from that. More swearing. More reactive tics.

Oh my blog on the Tourette's Action Website has gone live! Here's the link: Tourettes Action Blog -


And my podcast episode on the Tourettespod is going to air any week now, I'll post that too when it does, may be in a separate thread and here as well.
 
I only have motor tic disorder, no vocal tics so not Tourette's. I had a squinting tic when I was 5 but it was thought it was because I had eye surgery. Then I had another tic which would happen when I was watching tv - I would tilt my head back and rub my neck. It's hard to describe but I got told off for doing it and so would do it in private. I learnt that early to suppress and hide my tics.

My mum told me that when she was in primary school she had a nose twitch she couldn't help doing and she was teased for it. Now I know where I get it from.

Now my tics are tensing up my stomach muscles and my side muscles. It's only noticeable when I feel the need to stick my elbows out while I'm sitting down. Again it's hard to explain. The worst tic I've had was a breathing tic. I would breathe in fine but then only let my breath out bit by bit. I would get out of breath and dizzy because of it and had to up my medication. Now I take 5mgs of haloperidol every night and it certainly got rid of that breathing tic. I still have the other tics but they don't keep me awake at night now.

I'd like to try aripiprazole to manage my tics but it's too expensive. My psychiatrist would like me to come off haloperidol because of tardive dyskinesia risk. It's high as I've been on it for 7 years. I tried ziprasidone and liked it but I had an ECG and they said something about the QT interval being abnormal so I tried risperidone which made me feel shaky, weak and nauseous. So it was back to haloperidol. I've been on it ever since.

Thanks for reading my rambling!
 
renaeden said:
I only have motor tic disorder, no vocal tics so not Tourette's. I had a squinting tic when I was 5 but it was thought it was because I had eye surgery. Then I had another tic which would happen when I was watching tv - I would tilt my head back and rub my neck. It's hard to describe but I got told off for doing it and so would do it in private. I learnt that early to suppress and hide my tics.

My mum told me that when she was in primary school she had a nose twitch she couldn't help doing and she was teased for it. Now I know where I get it from.

Now my tics are tensing up my stomach muscles and my side muscles. It's only noticeable when I feel the need to stick my elbows out while I'm sitting down. Again it's hard to explain. The worst tic I've had was a breathing tic. I would breathe in fine but then only let my breath out bit by bit. I would get out of breath and dizzy because of it and had to up my medication. Now I take 5mgs of haloperidol every night and it certainly got rid of that breathing tic. I still have the other tics but they don't keep me awake at night now.

I'd like to try aripiprazole to manage my tics but it's too expensive. My psychiatrist would like me to come off haloperidol because of tardive dyskinesia risk. It's high as I've been on it for 7 years. I tried ziprasidone and liked it but I had an ECG and they said something about the QT interval being abnormal so I tried risperidone which made me feel shaky, weak and nauseous. So it was back to haloperidol. I've been on it ever since.

Thanks for reading my rambling!
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Remember the results are based on tormenting animals not a human, as you can't reproduce in 30 days ,what basis do they have for healing a human.
 
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