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Sunday, January 18th, 2009
10:58 pm - tourettes/prednisone?

desikitteh
does anyone know if prednisone has an effect on TS? my partner reported significant repeated twitching in my sleep during the day today. it was in both legs and my one free arm. things worth noting:

i'm taking the prednisone in an attempt to abort status migranius (2.5 months) migraine does aggravate my TS.
i currently have a cold that's kicking my ass.
i was dreaming oddly during the sleep.
i woke up overheating, although i do not believe that i have a fever.
both upper legs now hurt significantly.

(my TS meds are clonodine 50mcg twice daily)

current mood: worried

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Friday, December 12th, 2008
7:05 am - quick question

desikitteh
hi all. i'm an aspie. i have fairly mild tourettes and i'm a migraineur. i'm also new to this group... my quesion is: any advice on how to deal with migraine aggravating my tics at all? it's to the extent that my leg tic is a whole body tic. :os

current mood: frustrated

(3 comments | comment on this)

Saturday, November 29th, 2008
1:12 pm - hi + intro

justlikebella
hi everyone! i just joined so i wanted to introduce myself. this is the very first time i have ever talked about my Tourette's so i am a bit embarassed, but i think it will help me to talk about it with others who also have it :).

my name is Suzanne and i am 33 years old. i was first diagnosed with Tourette's when i was really little....1st grade i believe. though back then (1980/1981) Tourette's was not as widely known so i was just diagnosed with "nervous tics". i remember shrugging my shoulders a lot while at the same time blinking my eyes and bobbing my head. i dont remember how long that lasted nor do i remember dealing with it much growing up but i noticed it starting again about 3 or so years ago. different tics this time - opening and closing my mouth and rolling my eyes. that died down for a bit then some time later the tics popped up again as jerking my hands. now recently...i would say about a month or so ago i have started vocal tics and it has become extremty bothersome - the worst tics as of yet. it varies between high pitched "hoots" (which to me, sounds kind of like a monkey. ugh. embarassing!) and low pitched growl-like noises.

yesterday i purchased an herbal supplement called Nutri-Calm. the very first time i tried it it worked really well. it did not take the tics away completely, just calmed me down so much that my high pitched hoots came out soft and low like a moan. however i took it again this morning and it did not help at all :(. i am hoping with repeated use it will go back to helping like it did the first time.

i was curious if anyone here has found relief with herbal supplements? i cant afford to go on any prescription stuff so my only hope if something i can get OTC. i have seen a few different OTC stuff and was curious who has tried what and if anything has worked for you?

(3 comments | comment on this)

Wednesday, June 11th, 2008
12:54 pm

gunblade_girl
Does anyone with tourettes ever experience muscle weakness? Whenever I have a really bad month or so with frequent tics, the muscles in my arms get really weak and I have trouble lifting things. I've broken several glasses because they were 'too heavy'. The neurologist who diagnosed my tourettes had no idea what was going on with the muscle stuff.

For a while now the tics haven't been too bad but for the past month or so they've been constant, strong, and very noticable. I've put up with my family mimicing the tics and making fun of me for it for years now, but now my coworkers are noticing the tics and mimicing them/making fun of me for it. So that's really helping my self esteem... yeah. :( I try to supress them but I think most of you know about how well that works. Anyway, just wanted to say this out loud because I really don't have anyone to talk to about it who understands.

(11 comments | comment on this)

Monday, May 12th, 2008
10:29 pm - Eye tics and makeup
ctrl_alt_dance Hi everyone, this is my first post here. My name is Arity and I have a relatively mild set of tics. However, I had a question for any of you girls (or guys, if you're so inclined) who have eye-blinking (or other facial) tics, like me, and find that it messes up their makeup. I know this sounds extremely trivial, but I find that after not too long any eyeliner I wear gets smeared to high heaven. Does anyone have any tips for preventing or dealing with that?

On a similar note, I've also got some shoulder blade tics (my mom calls them my "chicken wings" - thanks Mom!) and I find it tends to shift my bra straps around and, often, off my shoulders (though tightening the straps seems to help). Wearing one of those t-shirt bras that hooks in the middle of the back (in addition to the regular enclosure: it makes a sort of X on your back) solves that problem, except then my chicken wings unhook that hook!

Has anyone else found any little lifestyle changes like these that they've had to/wanted to make?

Thanks!

-Arity

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Thursday, March 13th, 2008
10:44 am
vividexpression Hey, how is everyone? This community is so dead... :(

p.s. I bought a bit of a heavy duty knee tensor and it's awesome. I went on a trip a couple weeks ago and I was worried about all the walking we were doing and sitting in the car but when I was wearing it, it supported my knee and I didn't have much pain at all.

Just a suggestion for anyone else who has tics in their legs/knees.

(2 comments | comment on this)

Friday, January 18th, 2008
11:53 am
vividexpression What do you guys do about stiff joints/muscles? I have tics where I clench my muscles and my back, neck, shoulders, knees, and legs hurt because of them. In the past I've done yoga and gotten massages... does stretching help?

(3 comments | comment on this)

Monday, December 10th, 2007
3:43 pm
vividexpression Anyone with TS and tattoos? I know exactly what I want and where, but because of my back tics I don't think I'll be able to get it. (won't be able to sit still)

(1 comment | comment on this)

Tuesday, September 25th, 2007
11:18 pm

saltthewoundd
 I am extremely happy I have found this community. I have had TS since I was in 3rd grade. It has varied throughout the years waxing and waning. Now all of a sudden I get random outbursts so out of control and outrageous that I can't function whatsoever. They last anywhere from one hour to a whole day where I have severe tics of tightening muscles, and holding in my breath at the same time until it feels okay. However when I exhale I feel so sick and my heart beats fast from not breathing and I almost feel like I will pass out. I will repeat this with a bunch of hand jesters and the occasional hitting of my leg or arm. It's so painful to go through, if anyone has any kind of coping mechanicsm it would highly be appreciated here. 
Thank you.

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Wednesday, August 29th, 2007
4:11 pm - Possible Tourette's Treatment
morbidmoony I don't think this would really work for me, or many of the other people I know with Tourette's, but it's worth a read, if just to get us all talking about our opinions on it :) :

"Taking on Tourette's: A new approach to stopping tics before they happen offers hope to thousands who live with the disorder"

Personally, my tics get worse whenever I try to suppress them, and if I do successfully suppress them for a short period of time, they just show up worse later.

What about everyone else? What's your view on this?

~Corey

(3 comments | comment on this)

Saturday, June 2nd, 2007
11:24 am - Wow, this community has been dead for a while
vividexpression I'll start with a little background information.Collapse )

I have no desire to get pregnant. (I've had this feeling since I was 15) Neither of my parents believe me when I say I don't want to get pregnant. Over the years it has almost become a phobia. I am terrified of even the thought of being pregnant and if I have a dream that I'm pregnant I wake up crying. This makes no sense because I would make a GREAT mother and when I picture my life in ten years I see myself with kids.

I think where this feeling comes from is that I would feel extremely guilty if I had a child with TS. I don't see TS as a bad thing, but I don't feel like risking having to see my own child go through this disorder. I have what I'd consider moderate TS and I have back pain and headaches 24/7. My tics never let up and medication has always failed me.

I know I could change my mind down the road about having children, and there is only a 50/50 chance that the baby will have TS, and medicine could even find a cure for it in the future (like brain surgery) but these thoughts still don't make me want kids.

I was wondering what everyone's opinions are of having children with disorders. Should I stick with my gut feelings? Should it not matter?

(6 comments | comment on this)

Thursday, February 1st, 2007
9:54 pm

happyfranks
has anyone noticed tics being dominant one side of your body?
almost all my regular ones are on my left side. incedentally, i'm right handed.

(5 comments | comment on this)

Friday, January 26th, 2007
9:25 am - Obsessive thoughts getting in the way of work
mushr00mfairy Okay, I know this is ‘Tourettes’ help, but I’m going to post about OCD!
Does anyone know any good ways of coping when you’re at work and you can’t concentrate because a random thought keeps going through you’re head.
All I can think about is ‘what if my teeth fall out?’ which is stupid, but I get that one a lot (often dream that it happens too) and i’m worried that, because I once got hit in the mouth in a Jujitsu class when I was 16 (I’m now 23), they have been permanently damaged and it’s just a delayed thing but one day they’re going to fall out! And that deep down my body can sense this and that is why I have this obsession and keep having dreams.
It’s worth noting that no dentist has ever implied this is the case!
I can’t stop thinking this! It’s really annoying, I’m supposed to be doing work and I just want to go home and sleep so I won’t be thinking anymore.

Does anyone have a good way of dealing with it? When you really need to concentrate on something (e.g. work) but you just can’t because of an obsession.

current mood: Obsessive!

(3 comments | comment on this)

Monday, January 15th, 2007
5:33 pm - Venting

blakdove
So I really have never minded most of my tics, but this latest grunting thing is killing me. Sometimes it's even a combination grunt-then-sniff. But because I'm not breathing properly, I'm dizzy and disoriented and my head feels swollen. The way the muscles work during the tic gives me occasional muscle spasms, and my shoulders are insanely tense. yMy throat is sore. Not to mention people looking at me funny (although my coworkers either don't notice or pretend not to). Not to mention my parents giving me a hard time about it (because obviously, if you tease me about it or get mad at me about it, I'll stop ticcing. Because, you know, I do it for fun).

So yeah, this is really messing me up, so I'm venting. And also wondering -- what's your most destructive/physically uncomfortable tic?

(11 comments | comment on this)

Sunday, January 14th, 2007
7:01 pm - Oppositional Defiant Disorder

krsonmar
I was just on another TS community on Yahoo,and some people were talking about oppositional-defiant disorder.I never knew what I had had it when I was little until I outgrew it and then read about it in Don't Think About Monkeys.These people in this community were talking about spanking and how oppositional defiant kids are lacking in discipline and all this stuff,and it just made it seem like these kids are just bad kids.And these were their own parents talking about them,and just not getting what it's about.One parent said his kid"isn't allowed"to have rage attacks in the house,so he makes him go outside of the house so the family doesn't have to see or hear him.As if the kid can help it,and like putting him on display for the neighbors and basically telling him,"We don't accept you when you're like this"is okay.It got me kind of upset.And then I followed this link someone put up to a site defining ODD(that's what they abbreviate it as),and it was also saying these kids could help it and it's a psychological thing
and all that.Does anybody have any insight into this?I guess I'm just really bothered because I was like that as a child and I was terrified of being thought of as a"bad kid".I still am.I was raised well and disciplined well and was a good kid,but I still had ODD.It just really bothers me that these are these kids PARENTS and they're not getting them.And I guess because recently I've kind of been feeling like my parents both aren't getting my TS or something.My mom went on this whole thing at me last week that made me feel like she thinks I'm lazy or inconsiderate or something for not changing my tic(it's a very socially embarrassing one),and she's usually so good about it.And my dad,who's an idiot and I usually don't take seriously,sent me this e-mail about how they can't all make adjustments for me and I can't be cloistered and all this stuff.He was doing it to hurt me and he's wrong about a lot of what he says and has never gotten me or my Tourettes,but it still hurts.I guess as little as I expect from him,I expected better than this.I don't know.Can anybody share any stories about what they were like with ODD as a child?Any insights into these parents on this other community?

current mood: generally negative

(6 comments | comment on this)

Monday, January 8th, 2007
7:53 pm - Question
morbidmoony So, I just developed a new tic after about three years of no new tics. I have to slam the heels of my palms together and slam the heels of my feet on the ground. It's really annoying.

In light of this, does anyone know what prompts a new tic to develop? I used to have some caused from repeating a motion often, but others are just incredibly random.

Ideas? Research? Good jokes?

:D

~Corey

(1 comment | comment on this)

Sunday, December 17th, 2006
3:16 pm
vividexpression I was just wondering, for the people who aren't on medication, how do you manage your tics? People who are on meds can respond too if you do other things.

After about four months of taking clonidine, I decided to go off it. It wasn't helping my tics much and making me into a zombie. (sleepy) I could barely get my schoolwork done because I was falling asleep 90% of the time. Now I'm trying to keep my stress levels low and I swim, and sometimes I get massages. I've had to go for physio in the past for my jaw. (I have TMJ from grinding)

current mood: bored

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Saturday, December 9th, 2006
2:55 am - tourette syndrome survey,,,

zildjian7akid
if anyone wants to share their story:: (you dont not have to be a teenager!!)

www.freewebs.com/teensWts under "what is it like?" they can be found. these are the questions you fill out and send to teensWts@gmail.com

name:
age (optional)::
state/country::
how long youve had TS?::
when you were diagnosed with TS?::
do you have anything else like ocd or adhd, etc?::
in one sentence, describe your tourette::
what would you say to someone newly diagnosed with tourette syndrome?::
something you have accomplished/love doing despite having tourette syndrome::

(and anything else you want to say about your tourette.)
also if you could send me a link to a picture of you that isnt required but if want to then you can.

(comment on this)

Thursday, December 7th, 2006
3:18 am - my tourette syndrome website!

zildjian7akid
not to take anyone away from here!

i have a tourette syndrome website targeted to teens but its for anyone!
www.freewebs.com/teensWts is the link. you can find a petition there, the link to our myspace, info, and on the "whats it like" page you can be featured there!
my name is jamie-grace, and i am 15 years old. ihave had ts for like 7 or 8 years and i have ocd and axiety

(4 comments | comment on this)

Wednesday, December 6th, 2006
10:04 am - Disturbing Dreams

midwestmike
I started back on medication about a month ago. My tics started to improve dramatically and it's amazing the type of physiological change they can bring. However, I still feel mental/emotional anguish.

I am now dreaming of myself having violent tic outbursts in public. These dreams are so disturbing because they are so vivid. I'm in a room of people and tic-ing very badly - both motor and vocal. But I am trapped inside feeling normal and trying to go on with my life. Then in my dream I get tackled by a group of people and put on a stretcher and taken away. It's so vivid and has been haunting me for days.

does anyone else have these sort of Tourette's dreams?

(3 comments | comment on this)

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