IamA Teenager Living With Severe Tourette's Syndrome, Ask Me Anything!

I believe I have mild Tourette's, although I've never been diagnosed. No health insurance, but I figure it doesn't really make a big difference to have it made "official" or not. My tics are really subtle, I think. The most common ones are jaw stretching, blinking and eye rolling, making an odd but quiet "hmm" sound, and toe curling.

My question is: do you find that talking or thinking about the tics makes them worse? Maybe I'm just noticing them more, but when I read about other people's tics, I feel a much stronger urge to do mine.

I feel the same way. Learning or hearing of a new tick invokes a curiosity to test it. I formed ( and got rid of, luckily ) a case of Trichtilomania that way.

What's the funniest story about your syndrome?

One of my tics is slamming a hand against a object or surface that won't break, usually. I introduced this new one to my girlfriend who also has tourette's by slamming my hand against a table and yelling like a mobster. "Damn it, Lorriane! You's gettin' on my noives..." and then told her.

My six year old was just diagnosed last week. He also has several comorbid conditions, including adhd and OCD. Since he just started grade one, can you give me any suggestions or hints to help him out at school? Also, I haven't discussed his dx with him yet, and am not sure how or when to do it. Any ideas?

Not OP but I have tourettes.

Tourettes is weird, because it's a known thing that a lot of people with it have problems with math, so keep an eye on that and make sure he has support in school. His emotions and anxiety levels will affect his tics, so focus on making HIM feel better, not surpressing the tics themselves.

Just remember :happy, calm child=less tics.

At school, as long as he has something to focus on, the tics will be less prominent. Talk to his teachers, explain this to them so they know he's not just acting out.

Also, one of those medical bracelet things (the silver ones) you can order online to explain he has OCD and TS will help so people stop giving him shit in public. They're a lifesaver.

But yeah, treat the kid, not the tics.

Thanks for replying, I hadn't thought about the bracelet - good idea!

Also, ask the school about a 504 plan. They help children who need extra help for whatever reason. If he needs more time on a test, he gets it. If he needs a study buddy, he can most likely get one. It's a little trampoline if he falls a bit. My mother and father both came really straight to me, saying it wasn't just me, a lot of kids have it. They also discussed how people who have tourette's aren't freaks, we just get to move our bodies and get limbered up faster then other people. Practice some sports, even. All the moving around can really help, for some cases. And medication is a touchy subject. It helps, but side effects are weight gain and drowsiness. Drowsiness only really lasts an hour, in my case, but it can wax and wane from tome to time.

Similar question, any advice for 4th grader with increasing tics- how to deal with social issues? I notice he tics much worse during video games. Could they be a trigger?

Depends on the game. If it requires thinking or people are yelling, yeah, it can get nasty. Social issues are akward, because they get nasty with people who don't know and won't listen. I stay away from FPS's for personal reasons, and I stick to fantasy and RPG. I get angered faster then. And it depends on what the childs tics are, really. Every case is individual, like a baseball player. They are all playing the same game, but each one is different in every area. Some things are constant, some aren't. It all depends on the case. Sorry if I couldn't help you!

Hi, thanks for chatting!

What kind of things do you do? Curse at people? And do you think it's funny sometimes? What's the worst part?

I snap my fingers and toes, blink rapidly, twitch my legs and arms a LOT, and slam my hand against any object that isn't breakable. I also cough and clear my throat a ton, and I chew on a lot of stuff ( I'm a dentists wet dream of fixing teeth, sometimes ) and I can never sit still. I also shake my head. Most of these are usually going on two or three at a time, usually all the time, unless I'm reading, gaming, or even just talking to my friends. I find it hilarious when I slam my hand against the table, I always yell ( at home ) "Ya sleepin' in t'e chop'ouse t'night, Lorriane!" to my girlfriend. ( She too, has Torette's, but only a mild case. )

If you try to stop a tic from happening, does it stop? Or is it something you have to try and control like every part of your body type thing. Being someone who hasn't ever experienced a tic (probably because I don't have anything that would make me) it's hard for me to understand how they work.

Hell No. It's like holding a pee. Go now and get it over with, or hold it in and risk an accident.

Have you seen the Restaurant Opening scene in Curb Your Enthusiasm that features a tourettes outburst? If so, thoughts? Genuinely curious.

Hahahah oh my god that was hysterical. The majority of us that have Tourette's don't scream out curse words, however. But it is possible.

I don't sceram or curse, and when I do, it's cause I'm P.O.-ed at a person, not Tourette's. I thought it was accurate, however, because I've seen people do that, and they liked it. So, yeah. It's funny, kinda.

If you have Tourette's, you must check out this:

http://www.youtube.com/watch?v=aHk-u-tEcXg&list=UU44UOUJtqfyXr42JwzarWRA

http://www.youtube.com/watch?v=UzlGPUUSJpw&index=46&list=UU44UOUJtqfyXr42JwzarWRA

This doctor fits a retainer to the mouth and it stops the tics. This is not voodoo medicine, this is brilliant cutting edge understanding of how TMJ nerve can create tics.

Dr. Demerjian is a brilliant doctor.

My Tourette's are now so common and so much a part of me, I'd rather not get rid of them. Although I'm not one to call bs, I don't really believe it.

Have you watched tourettes guy?

Nope. I've seen an episode of Taboo where one of the guys had Tourette's, though.

Is school difficult? Are your teachers helpful?

I have a 504 plan in place, so I get to take tests longer, extra help, but i'm not a vocal person, mainly severe physical tics, so no, school isn't difficult ( I love to read, and science is what I wanna go into ), and my teachers treat me the same, on MY request.

But does it?

No, you should try the cake.

what is your favorite flavor of Ice Cream and why is it chocolate?

I too, like cookies. Love ya, Lorraine.

Please dont assume this is a troll comment, but have you ever seen the South Park episode "My petite tourette"?

If you have, whats your opinion on it? Im asking because an association actually said that they made a truthful approach on what it means to live with such a condition.

I did indeed see it, and I was a little mad at first, but it did accurately represent what life with Tourette's was like for the most part. Some of it was exaggerated, and they missed very little. I applaud Trey and Matt for their research, and it brought Tourette's into a bigger light.

do you ever just cuss someone out and then blame it on the tourettes?

No, my tics aren't vocal, mainly physical, maybe a throat clear, but never in words.

From what I understand, holding in your tic is like holding in pee. You can only do it for so long until it comes out. Is this accurate? If so, how long can you hold it in, for lack of a better phrase?

Yeah, it's like containing anger at a stupid person. Do I lash out and feel a little, or hold it in and be scared at what I can do when I explode. I can hold it in for I dunno when I'm calm or having fun, but when I'm doing normal things, I can take around 30 seconds before I get really bad.

- Has it gotten more controllable as you get older?

- Have you tried/considered cannabis as treatment?

- Does anyone else in your family have it?

- Do you also have any form of OCD or other annoying condition?

I have it and my mother has it (both mild cases; mostly tics and I do random vocalizations when I'm stressed), and my son has a stronger case. I find that I can control the tics moreso now than when I was young, and that tics/vocalizations such as barking are completely gone if I use cannabis. My son does not live in an area where medicicinal use of cannabis is tolerated and that makes me sad.

It doesn't really get more controllable, I just accept it. I have smoked weed before, and yes, it does actually help bring my tics down a few notches. No one else in my family has it, which has always confused me. I experienced symptoms of OCD when I was younger, but not so much anymore. And hey lets hope soon enough for at least medicinal legalization! It could help a great deal.

Has it gotten better? Yes and no, because I've taken small amounts of medication, and that tones it down, but I usually don't take it due to weight gain and drowsiness as side effects. It's a turn off.

I don't do drugs, sorry. It's not horrible, it's always interesting. Head Of The Class is a good reference to why I don't take treatment via drugs, save medical perscriptions.

My Mom and Dad both have OCD, so yeah. Why I got the elephant when they got the monkeys, I dunno.

What's taking you soFUCKIN ASSFACElong to answer?

I dunno, beauty sleep, family issues, whatever floats your boat. Some things come up in life you weren't soFUCKIN ASSFACE ready for. :D