Anyone else have a tic disorder or Tourette Syndrome?

[Southern Discomfort]

I had a really bad day yesterday. I came home from my voluntary job and for the next five hours I was facing horrible frequent tics. I had a tic where I had to tense all my neck muscles and bring my head forward and hold that position for minutes on end. Every time I attempted to break from it I'd go straight back into it. That's lasted a while. Then after that I had to strain my throat effectively limiting my amount of breathing and making me talk like I was a really heavy, long time smoker. It was the breathing that was the problem, I felt out of breath for hours. I was finally able to break from that as I was trying to go to sleep. All the while this was going on I was frequently jolting my neck to the right, I'm still doing it now.

I think it was set off by looking up this weekend retreat next month on the internet that I was invited to just a few hours before. A bit exciting and anxiety provoking. Bit not majority so I don't know why that made such a big deal. Maybe I'm hitting a threshold limit of the total amount of stress I can handle or something.

This is the second time it's felt really disabling. This time much worse.

 

[Southern Discomfort]

My tics have changed again. I started barking like a dog a few weeks ago. That was a bit concerning but that's quite a rare one now. Another frequent tic has also popped up, I have to slap the side of my head with my hands. And there's variants of this tic, sometimes to preceded by a squeak, or I have to slap my head three tics. I mostly have to close my eyes and grimace too. Sometimes it's both hands on both sides of my head or I have to do all that and cover my face too. Slapping yourself constantly kind of hurts.

I went on a weekend retreat last week and I was just ticcing all the way through the evening because there wasn't a lot for me to keep myself engaged in. I should have brought a book or something, trouble is I didn't have any more space in my bags.

 

[Datura]

I have some ticks that corelate strongly with my stress levles. The first tick is pretty much the mirror immage of what SD has, a sudden jerking of the head to the left. My other tick is much more severe. It is a kind of bobbing motion centered around thoracic contractions. My mom calls it "bird necking" as I apparently look like a bird with a broken neck when I do it. This is sign of extreme emotional duress for me. I first experienced it while writing a paper for college. It landed me in the hospital as I couldn't stop and it was very exhausting.

 

[xudo]

I couldn't stop and it was very exhausting.

Sometimes my facial tic gets like this, and you can't even explain to people how exhausting something like that is.

 

[Southern Discomfort]

Starting aripiprazole tonight at 10 mg to see if that helps with my tics. If I'm able to tolerate this new drug I'm going to go up to 20 in a month or twos time and then I'll drop the risperidone if it works.

Gonna have to wait and see and hope that this doesn't suck ass. I guess though I'm going to be fairly passive for a little while though. If I could get no side effects again like I do with the lamotrigine, that would be great.

 

[Southern Discomfort]

I got a letter from my psychiatrist about the last appointment. He confirmed they are actually tics and he's listed in the ICD 10 diagnosis box on the letter as 'F95.2, combined vocal and multiple motor tic disorder. Which if you look it up the full title of that diagnosis includes at the end [de la Tourette]. So although they haven't told me directly it is official that I have a diagnosis of Tourette syndrome now. Yay?

I guess they haven't said it to me directly because it's not that well understood and I might freak out about it or something; people think Tourette's is just people swearing when it really isn't.

I don't know, I wish people wouldn't do the whole 'smoke and mirrors' thing with me. I mean it's pretty useless, I'm going to find it out through my own means - even if I didn't know it for years before hand - because I have Asperger's after all.

I'm somewhat indifferent about it. I'm glad it's being properly recognised now just like it was with Asperger's, a diagnosis helps me understand where before I'm wandering around in the darkness; my last psychiatrist was crap in that regard, he didn't explain anything. But I do just want it out in the open now and I don't want to be the person who makes it like that, I shouldn't have to be.

 

[xudo]

I got a letter from my psychiatrist about the last appointment. He confirmed they are actually tics and he's listed in the ICD 10 diagnosis box on the letter as 'F95.2, combined vocal and multiple motor tic disorder. Which if you look it up the full title of that diagnosis includes at the end [de la Tourette]. So although they haven't told me directly it is official that I have a diagnosis of Tourette syndrome now. Yay?

My official diagnosis was "a tic disorder which is Tourette's like". Talk about helpful..

 

[Southern Discomfort]

My official diagnosis was "a tic disorder which is Tourette's like". Talk about helpful..

Yeah, I'm had ones that are like this: "Asperger's?" "Psychosis?" I suppose it's some what good that they are open to other possibilities but a lot of the time the patient just wants answers already because they've been struggling with something for quite a while already. It's frustrating.

 

[Southern Discomfort]

Well I don't think that 10 mg of aripiprazole is doing anything unfortunately in terms of managing tics, I've had two days in a row recently which I had sort of episodes of tics pretty badly, sort of stammering tics for one. So it looks like 20 mg is definitely going to have to be the way forward as planned.

As I've said before, I don't know if I've said it here but I don't care if the tics don't go away, I'd just like to be able to manage the times when they're constant.

 

[Streetwise]

What are the

Well I don't think that 10 mg of aripiprazole is doing anything unfortunately in terms of managing tics, I've had two days in a row recently which I had sort of episodes of tics pretty badly, sort of stammering tics for one. So it looks like 20 mg is definitely going to have to be the way forward as planned.

As I've said before, I don't know if I've said it here but I don't care if the tics don't go away, I'd just like to be able to manage the times when they're constant.

side effects of your medicine
Im getting a tic that pulls my whole head to the side my neck really hurts afterwards
bizarrely it only happens when i watch tv what does that mean

 

[Southern Discomfort]

What are the side effects of your medicine

Ah, all sorts of side effects are listed on the three I'm on. Too many to list, but look them up yourself if you're interested - risperidone, lamotrigine and aripiprazole. But that stammering tic is something that only occasionally occurs, it's not constant, and it was something that I also had before I started aripiprazole so it's not that.

Im getting a tic that pulls my whole head to the side my neck really hurts afterwards
bizarrely it only happens when i watch tv what does that mean

Well tics - if it is a tic - can occur when a person is excited. I don't get mine like that. I'm not sure what factors into my tics apart from boredom.

 

[xudo]

Well tics - if it is a tic - can occur when a person is excited. I don't get mine like that. I'm not sure what factors into my tics apart from boredom.

I find caffeine makes mine worse. I used to drink a can of monster a day, and they were always so much worse afterwards.

 

[Southern Discomfort]

I find caffeine makes mine worse. I used to drink a can of monster a day, and they were always so much worse afterwards.

I...don't think caffeine really does anything to mine. Mine are weird. I can go through certain events without barely ticcing when I know I need to be quiet. I think I must just be able to suppress them really well too.

 

[xudo]

I...don't think caffeine really does anything to mine. Mine are weird. I can go through certain events without barely ticcing when I know I need to be quiet. I think I must just be able to suppress them really well too.

I can suppress pretty well, although my ability to do that has been getting worse as time goes on. Then they're a million times worse when I get home and can tic freely. Recently my facial motor tic refused to be suppressed at all, around the time we had to go out for a meal for my sister's birthday. Nobody was more surprised that I when it just carried on the whole time we were out I've never noticed any difference if I drink say, a lot of tea..just monster. Maybe it's because it's such a huge amount of caffeine in a relatively short space pf time.

 

[Southern Discomfort]

I can suppress pretty well, although my ability to do that has been getting worse as time goes on.

That's got to be bad. I just find mine have spreading through my body, going downwards it was my arms that were the latest and that was about 4-5 months ago.

I've got to learn how I suppress them at times when I really don't want to tic. I find I tic more around people I'm comfortable with or at home than I do at places where I know it's not okay.

 

[xudo]

I've got to learn how I suppress them at times when I really don't want to tic. I find I tic more around people I'm comfortable with or at home than I do at places where I know it's not okay.

Yes, I'm exactly the same. There are friends who I've never suppressed in front of before and they've just accepted it and never mentioned it and then there's my Dad, who I pretty much always suppress in front of because he's awful about it.

 

[Southern Discomfort]

There are friends who I've never suppressed in front of before and they've just accepted it and never mentioned it and then there's my Dad, who I pretty much always suppress in front of because he's awful about it.

Do you worry a lot about what others think? I do a bit with certain people or certain situations, for example the funeral I went to last Monday.

Those that matter don't mind, and those that mind don't matter. And that's what I try to keep in mind, if only it was truly that simple though.

 

[xudo]

Do you worry a lot about what others think? I do a bit with certain people or certain situations, for example the funeral I went to last Monday.

Those that matter don't mind, and those that mind don't matter. And that's what I try to keep in mind, if only it was truly that simple though.

Most people, no. Around my Dad it's that he made a really big deal about it when I was growing up so I just sort of learned to suppress around him. I would worry more in a situation like a funeral, where it's supposed to be very quiet and sombre. Nobody wants (or would even try to understand) someone sat there making weird noises and pulling faces in that situation. I do at least attempt to sort of suppress if I'm on the bus, because people are in relatively close proximity (even on a quieter bus) and I don't want people staring at me for the entire journey. I find that listening to music helps sometimes. Generally out and about in town with my husband though I'm not really that bothered, but I find that my vocal tics are generally suppressed then too, as I think I just became so good at it while I was in high school.

 

[Southern Discomfort]

I'm being referred to a St George's Hospital in London; they run the country's biggest tic clinic. I've seen a lot of psychiatrists in the past few years and a lot of them say different things but roughly along the same lines. I'm hoping for this I'll at least get a definitive answer from this at least.

I'm sort of able to control my tics subconsciously, I can substitute vocal tics for motor ones. But I don't know how to stop doing them for a time, like, make a concious effort to do so. If that makes sense. If they can help me learn to suppress my tics then that would be amazing.

 

[Butterfly88]

I screamed a lot in high school and it didn't seem to be from meltdowns and one doctor thought it was a tic disorder. I never got that diagnosis firmed up though. I hope your appointment goes well.