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Chronic Tic Syndrome


Guest Phoenix180

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Guest Phoenix180

Not sure if I'm putting this in the right spot, but I'm hoping to learn more about a recent diagnosis. What I had been told for 14 years was a nervous tic I'd outgrow or gain complete control over turns out to be Chronic Tic Syndrome.

No one I know has this, or anything else on the Tourette's, OCD, Tic Syndrome spectrum except for my grandfather whose OCD is untreated. Is there a treatment for Tic Syndrome? My neurologist said the only thing I could do was chew Nicorette gum for two minutes when I needed a break from suppressing my tics and needed to not have them for a few hours, but he said I could only use it once a week and even at that frequency it started to lose power. Is there anything else out there?

Additionally, it turns out my tics cause damage to my spine, nerves and back muscles so I've had to have physical therapy. Is this common? Do people with Tourette's also have long-lasting damage because of the physical tics? Any suggestions on how to cope? The physical therapy has helped cut down on my daily headaches, but not completely.

I'd appreciate any information you could share. My neurologist has dropped me from his patient load since it is just a tic syndrome and he doesn't handle tics. He won't return my calls or requests for more information. I'm still pretty confused about the whole thing and trying to think of ways to explain it to my parents who are hoping that there is a cure out there and I'll finally stop my fidgeting and tics.

Yikes... lotta questions for my first post. Sorry to unload!

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Hi Phoenix180 and welcome to the board

I have come across the Nicorette treatment for Tourettes as well and it is based on sound research, but I'm a little suprise that no alternatives have been offered.

I would have thought that one of the tic suppressants would have been worth trying in a similar way to which they are used in TS. Personally I take Amisulpiride, and although it is a fairly heavy drug it has reduced my tics considerably (sorry, I have TS). Like you I was sustaining physical injuries such as pulled muscles and damaged ligaments, so yes I guess it can get that bad I'm afraid.

It does not sound as though your neurologist has been terribly helpful so it could be worth while going back to your family doc and explaining that the tics are so severe they are causing injuries not to mention distress. Mention that you know drugs are used in TS solely for the purpose of suppressing tics......the drugs generally belong to the 'anti psychotic' or 'neuroleptic' group of drugs. Ask if it would be possilbe to try a low dose of one of these eg Sulpiride or Risperidone to see if it helps you to gain some control over your tics.

It sounds a bit rough for you at the mo especially as its reached the point where you need physical therapy, so be gently persistant if you can.

It may also be worth your while contacting the Tourettes Assc and their web site is www.tsa.org.uk

I do hope you get some satisfaction.

Catherine original.gif

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Hello,

Just thought I would add a note as I also suffer from chronic tic syndrome. I haven't been diagnosed, but I know from reading around that that is what it is.

I have had tics on and off since I was 10, but consistantly for the last 7 or so years. Like you, I don't know anyone with the same problem, so for years I had no idea what was wrong with me and wouldn't discuss it with anyone.

I have never heard of Nicorrete gum as a possible treatment. I would have thought that nicotine would make tics worse as it is a stimulant. I'd be interested to hear if you find a treatment that does work for you. Keep us informed!

Good Luck

Vicki xx

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Yeh, the nicorette patch/gum treatment is interesting and from what I know it came out of some research into smoking and TS. Apparently it was hit upon that something, eventually identified as nicotene, in cigarettes helped relieve/suppress tics. Obviously you could just smoke, but the gum/patches have less harmful effects associated with them.

I have to say that I wasn't aware it was an officially approved treatment for tics/TS and that established drugs would have been a more proven treatment.

Catherine

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Guest Phoenix180

According to my doctor, the only other medications he knew of that would suppress my tics were ones that had the unfortunate side effect of making me like a zombie and he didn't feel comfortable prescribing it.

For anyone looking for immediate, temporary relief, the gum did work for me. Just don't use it very often or it might start to lose potency like it did with me. I was to chew it a couple times and then store it in my cheek for two minutes, rechewing any time the tingle stopped, and spit it out after two minutes. The doc said he didn't suggest I try the patch since it caused nausea for Chronic Tic patients who had never smoked and that's also why I was to only chew for 2 minutes.

I'm not sure what research he was citing when he mentioned the possibility of nausea for non-smokers trying the gum, but since he doesn't have any tic patients himself, I'm fairly confident someone else must have done the research.

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Thanks Phoenix........I take the point about drugs making you like a zombie to a degree and yes, some of them can. But I have to say that Sulpiride/Amisulpiride has made a huge difference to my life and my tics are 70% improved. In fact in one way I have more energy since my body is so much more relaxed. I take 100mg Amisulpiride in the morning and 100 mg at night and can honestly say that now I'm used to them I get minimal side effects in terms of tiredness. Lets put it like this, I'm able to function far better with the meds than without. To be honest I think it just takes a doc who is prepared to put themselves out a bit and try low doses of different meds with you. Maybe I was lucky with mine unsure.gif

Speaking personally, I'd be tempted to ask for a second opinion from someone more experienced in the management of tics dry.gif

Catherine original.gif

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