New to TS...
I was diagnosed with TS this past May. I just turned 22 in November.
I had a few tics when I was a kid, but they would come and go and never the same one. In fact, there were so few, my parents just thought they were nervous habits I'd picked up, and I would stop doing it just as sudden as I'd started doing it.
My senior year of high school, I had a lot of psych issues (depression, self-injury, anxiety). I worked at Pizza Hut for a few years. I eventually started blinking really fast and hard all the time, and eventually added jerking my head. We didn't think anything about it. I thought I was just really stressed out. After I changed jobs a year and a half ago, it got way worse! We didn't know what was going on. And to keep from jerking my head or arms, I would end up curled up in a ball really tight.
Now, I'm on meds, and usually just have the blinking or tense my neck muscles. When it gets bad, I jerk my head, jerk my arms really hard and fast and hit myself or the table or counter or whatever if there is one in front of me, stomp, twist my wrists weird. I say huh and up and hey over and over again, but just "hey" recently and it's more like i'm yelling...
It's confusing to me sometimes, and exhausting, but for the most part, I try to just laugh it off. I guess that's how I deal with a lot of things, though...laugh it off and joke about it.
I was supposed to see the doc last week to see what else we could do besides meds, but it turned out that the only thing she planned on trying was botox because I've gotten to where I squench my eyes shut really tight and can't open them. I don't like the idea of botox though, so ended up not going because she told me flat out there was no idea in going if I didn't want to do that (cuz I live 2 hours away).
I'm just at a point where I don't know what else to do when it gets bad enough that I can't drive because of squeezing my eyes shut. I'm afraid that I'm going to end up losing my job because of days missed or something.
Sorry this turned out so long. I guess I just needed to get it out and I'm so thankful to find somewhere that maybe I can.
Welcome to the NeuroTalk Support Groups.
My two children are around your age - a little older. Not so many tics anymore. Occasionally.
It sounds as if you've been having a really difficult time with some of your tics lately. What type of doctor are you seeing if you don't mind my asking? Do you think that dealing with the anxiety and depression has been a sort of trigger in bringing about this flurry of tics?
I don't know how long you've been having the eye tics that are affecting your ability to drive, but hopefully those tics will wane soon.
There are a few adults who come here to post from time to time. Hopefully they'll see your message and be able to offer some of their thoughts.
Have you met any other adults who have TS at all? Sometimes that can be really helpful.
There's actually some really good information on the TSA-USA website for adults living with TS.
LIVING WITH TS: ADULT ISSUES
Getting a Job and Keeping It
by Mitzi Waltz
Edited to add: When your eye tics are more settled, and if you like to read...
there's a really good book by Amy Wilensky called "Passing for Normal: A Memoir of Compulsion".
I've seen a movement disorder specialist a couple of times, and that's who I was supposed to see that wanted to do the botox. I know one person my age who has TS, but his is barely even noticeable. We work together, and it gets kind of aggravating when we are on the same shift and I'm having a bad problem cuz I think seeing him tic triggers mine a little (of course, he thinks its funny).
It only flares up really bad to where I can't drive on occasion. I think it just aggravates me cuz I get used to it not being so bad and then suddenly it does out of the blue.
I'll have to check out the book.
I'm Jasmine, by the way...
welcome Jasmine :)
my son is adult now, dx with TS when he was 10
He has had great success following a nutritional treatment plan, that I have documented here http://neurotalk.psychcentral.com/thread1145.html
Most people who try natural treatments for TS have found increasing their magnesium intake to really help with their tics. There is research to support this by Bonnie Grimaldi, who has developed her own supplement line after the success her child, and many others had with her protocol www.bonniegr.com
If you are interested in natural treatments, there is also a very helpful reference book here http://www.latitudes.org/book.html
Hi again Jasmine.
I went to a TS conference in D.C. in 1998. I don't know how many people were there, maybe 500 or more in the one room, but it was a real tic-fest (and I mean that in the nicest way)... tics can be quite catchy indeed. :)
Lara: I imagine it was...
Chemar: Thanks, I'll have to check it out...
I guess it's just really aggravating me cuz it seems like she won't even suggest anything to try. Like she's saying, oh, well, yeah, you have TS, if you don't wanna do botox, then good luck, I'll see ya in a year when you come back (and for what I have no idea, I guess just to check in with how I'm doin' on these meds?).
Jasmine, you mentioned in your first post that in the past you had some depression and anxiety issues. I'm wondering if you have those under control now and if not then perhaps addressing the anxiety may help you in reducing the tics. What med. are you taking at present?
Yeah, um, well... Lol
See, I had thought that I had it all under control for the most part. I mean, I won't deny that there were still some symptoms of depression, but they weren't a big problem for a while.
The tics got really bad right about the time I was trying to stop the self-injury. ER doctors thought they were from meds I had taken or just psychological.
The first time I saw the specialist, she wanted me to see the psychiatrist just to check up and make sure there wasn't a problem. He suggested talk therapy just as an outlet. I did take his suggestion. Now my mood swings n everything are getting worse...to the point that this therapist has mentioned the idea that I might actually be bipolar. I explained the mood swings and irritability to the specialist last time I emailed her.
I've been taking clonidine since May and now I've taken sertraline for about a week now.
I had one of those days today where I was really hyper and literally runnin n bouncin all over the place and squealin like a weirdo! Lol And I kinda started to tic a bit, and my mom said "You know, you're all hyper and excited andstuff today. And now you're startin' this. Seems like it was the same way last time you started to tic really bad." So, I don't know...
Jasmine, I just wanted to mention that my son had very adverse reactions to meds when we initially tried those and yes, part of those side effects were severe impacts on his mood and general psyche. Once he stopped the meds, things really improved in that area.
Although clonidine is generally not known for intense side effects, I do know of it having psychotic reactions in some people. So it may be the meds causing those mood swings.
Whatever it is, it really sounds like perhaps you getting a asecond opinion on it all may be a good idea...the fact that your doctor felt botox was the only real solution is a bit troubling to me!
If you can, try to find an Integrative doctor who has experience with TS. Integrative docs are ones that are fully qualified in conventional medicine (MD or DO) but have gone on to also specialize in alternative/naturopathic medicine and so they have a far more holistic approach.
Yeah, I had thought about it being a side effect. She suggested the sertraline, so I thought I'd give it a try.
I had emailed her the day before I was supposed to go up there, and I asked her if there was anything she would really do since I really wasn't ticcing. She said that she had just planned on doing the botox for my eyes since that was the main thing keeping me from driving and getting to work. I was like, "Is that all you planned on doing?" She said "Whenever your blinking is bad enough that you think it is worth to discuss btx face to face come for an office visit."
Anyway, I'd been thinking about going to see the psych up there about my moods, but since she gave me this, I'm thinking that I might see what happens with it first. I thought I'd ask him what he thought about it all if I went (cuz he's trained in movement disorders n such). I have a feeling it's gonna be trial and error for a while.
Hopefully I can get my work to give me some more intermitent leave papers since my family doctor filled them out wrong...
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