New to TS...
 

Hi everybody...
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.

Hi jnt,
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.

http://www.tsa-usa.org/aPeople/Livin...S/LivingTS.htm
LIVING WITH TS: ADULT ISSUES

http://www.tsa-usa.org/aPeople/Livin...Employment.htm
EMPLOYMENT
Getting a Job and Keeping It
by Mitzi Waltz

Keep talking.

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".

Hi...
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...

What an amazing experience that was, Lara! I remember walking in the opening session with hundreds of ticcers - like a wave of movement and sounds - and Ed saying "I hope my tics don't bother anyone". :D He talks about that conference as a "tic smorgasboard...all you can tic".


Welcome, Jasmine. I hope you find the support and maybe the answers that you need here. I don't have TS but I am in the minority in my household. My husband, now our 7 year old daughter and our 6 year old son is showing some minor tics. I have 2 grown children whose tics have waned.

Read this from Neurosurgeon Dr. Jack Kruse:
http://jackkruse.com/primal-cpc-1-to...nary-medicine/
..

A bit of an update...

So, my doc started me on sertraline for my mood swings. She's gradually upping it...still at a low dose, though. The idea was that maybe if my moods weren't so up and down, maybe my tics wouldn't be so bad. Well, moods aren't getting any better. I'm not having a problem with tics now, though. I mean, a few insignificant ones here and there, but nothing major.

Well, I started seeing a therapist again just for an outlet of sorts. She thinks I might actually be bipolar. I'm just so up and down now...it's like I'm on a rollercoaster and I'm not sleeping well. So, if it's not one thing, it's another.

Hope y'all are doin' well...

Jasmine, it's very good to read your update. Sometimes getting those other issues under control does help the tics wane. It's great you're taking these steps to sort through everything. Hope you get some good sleep soon. Keep in touch and let us know how you're getting on there.

take care

Been sleeping MUCH better...well, except for last night cuz I got really hyper last night.
I tried to email the doc to let her know how it's goin' with the sertraline like she asked me to, but no respone. So, I don't know.
Decided to learn to crochet. Only, mom can't remember how to do it right. I've just been messin' around with it. It's actually really relaxing. It gives me something to do with my hands (which I really need). So maybe havin' something to do that I can actually work on will be good.
I'm trying to get a roadtrip set up and planned for this summer too. A week long vacation with my sister and my grandma...if I can get off work. I just really need a break and a chance to just escape this everyday mundane life and relax! I guess I've been a little worried about my tics flaring up on the trip, but oh well. I'll just have to deal with it...and make sure I pack my meds! Lol! I'm really excited about it and it's givin' me something to look forward to where I've had nothing to look forward to or be excited or happy about for a while! So, things are lookin' good! If only the doc would email me back so I don't get really frustrated over not getting any response...

Hey Jasmine!

Sounds from what you've typed that things are going way much better. That's wonderful news.

I just had a look online and there are some video tutorials if you want to learn to crochet.

When my son was little and his tics really bad, I bought him origami paper and books and he would find that really relaxing too. Gosh, he got so good at it really fast. He did that for a very long time. To other people the amount that he made may have seemed a little excessive lol but it really did help him a lot.

The road trip sounds great, tics or not. Might be just what you need right now.

Hope the doc. gets in touch soon.

Take care there and keep up the good work. YAY I love good news.

EDITED to ask...

Do you play any type of musical instruments at all? Piano. Guitar? That would keep those fingers busy too.

No, I don't play any instruments. I sing, but that ain't gonna keep my hands busy! Lolz!
When I get paid next week, I'm gonna see if I can find some books or something. I think my aunt knows how, but we don't get to spend a lot of time together. Maybe asking her to teach me will give us a chance to spend some time together. I don't know. Anyway... I don't know. I have so many ideas about what I want to do this summer, and I know only so many of them can actually happen! And then I wonder how long it'll be before I get bored with these projects and plans and how many will actually get finished.

No, singing won't keep your hands busy, but it is relaxing. :)

One step at a time. Don't think you're alone by having many plans and ideas that don't always end up being done for whatever reasons. Happens to all of us I think.

Woohoo! :D
I'm going to the eye doctor to get some contacts Thursday! I haven't been able to wear them for a long time because the constant blinking and squeezing my eyes shut really hard all the time really bothered my eyes when I wore them...but I'm giving it a try now that the tics seem to be under control for the most part.
My brother looked at me like I was stupid cuz I was so excited, but hey, it's a big deal for me, and I'll be stinkin' excited if I want! (Well, just not TOO excited! Haha!)

Hey, that's really good news, Jasmine.
Contacts are great. You've obviously had them before from what you wrote, so you would know how they feel at first. You certainly do have reasons to be excited. Go for it. Thanks for your update.