IamA 20 year old guy with Tourette Syndrome. AMA!

What's your tic?

I have a lot.

• Swinging my left arm up and hitting my chest
• Snapping my fingers
• When walking or standing, I sometimes straighten out my right leg as much as I can.
• Yelling "fuck" or "shit" (this is called Coprolalia and is very rare for people with tourettes)
• Clapping

There are probably others I can't think of right now.

I've always had a hard time understanding why it is that the compulsion to shout out a word comes out as "fuck" or "shit" or something else considered inappropriate, and not just a mundane word, like "apple"?

You and everyone else. I don't think doctors have an explanation for why it is only taboo words

Have you ever tried to convince your self some other words are horribly taboo to see if you can replace the others?

nope

Do you reckon it has got anything to do with intrusive thoughts? I hear everybody gets them, but only a few become real. eg: Paul Merton's fear of heights, thinking he might try to jump out of the window.

I doubt it, otherwise I would have a much more colorful tourettes vocabulary.

How does it feel? Specifically the yelling profanity and clapping.

Do you yell "fuck" and then think "fuck, why did I do that?" Can you sense it's about to happen? Do you even notice it when it does?

I can usually feel when its about to happen.

Kind of like a sneeze/hiccup?

Exactly.

Your case is much worse than mine. Most of my tics are internal. I feel for you, brother.

I count things, mostly. Like, everything. All the time. I'm counting and balancing consonants and vowels as I type this. I have some minor physical tics and a buttload more mental ones, too.

I got off lucky.

Sounds like you've got some ocd.

Have you been able to hold down a long relationship?

I was with a girl for about a year and it rarely affected anything other than the few times I accidently hit her while cuddling.

What's the most inconvenient time you have had an 'episode'?

Probably the many times I've yelled "SHIT!" while a passenger in a vehicle.

How did you get diagnosed?

When I was around 12 years old, I noticed my arm started twitching a lot and didn't know wtf was happening. I don't remember all the details but I eventually went to a neurologist who diagnosed me.

I was actually diagnosed around the time the South Park episode on tourettes came out so nobody at school believed me at first.

On that note, how did you feel about that South Park episode?

I love it. South Park is one of my favorite shows and they portrayed tourettes more accurately than anyone else.

So what was the method for getting diagnosed? It is purely observational or are there some more concrete flags for it?

Its observational. Doctors have yet to pinpoint the gene (if any) that causes tourettes.

What positive impact has it had on your life?

I'm not sure if its had much of an impact, positive or negative.

What's the biggest misconception people have about Tourette Syndrome?

That it means I'm just like "Tourettes Guy"

Earlier in the thread you said that the cursing type of Tourette's is rare. Do you believe that Tourette's guy really does curse that often and that loudly? When I used to watch the videos, I always had a suspicion that he was exaggerating for the camera.

I'm certain its an act, or he has some other disorders I've never heard of.

Do you ever do things intentionally and blame then on your condition so you can get away with it?

The medication I took when I was in school had a side effect of making me drowsy. I exaggerated how much it affected me and was able to sleep in class and the teachers couldn't really do anything about it so I usually had a short nap before lunch.

Well played how about the cursing part? You ever scream fuck and shit at people intentionally?

Nope.

Do you think you could get away with yelling "EBOLA!" on a plane and then just blame it on the tourettes?

Haha, nope. I am worried that I might scream "bomb" on a plane sometime. Good thing I rarely fly.

Well don't worry even if something like that did happen I'm sure that our highly trained, highly competent TSA officials would be able to accurately asses the situation and rationally take care of it in a calm and controlled manner.

Only if you're talking about this TSA

As someone with chronic tic disorder, I've read that with Tourettes you have a smaller or no "window" to be able to control your tic. That when you brain says to do it there is no time to when you do it. For us, we can someone control our tics, albeit with a lot of energy.

Do you have absolutely no control? Is it possible to hold them off? If you've known anyone with chronic tic disorder, would it take more energy for you to limit them (if you can) than us? I tend to do decently well earlier in the day, but later on I lose the ability and become a twitching freak.

I have developed a huge amount of control over it, but just like you said, the control weakens later in the day.

For the most part do you notice people being understanding, or are they rude and stare when something happens?

I've never once had someone be a dick about my tourettes.

Has it ever been an issue for you to drive a car anywhere by yourself? It would seem difficult to me I would think?

Nope. Actions that require a lot of concentration tend to suppress my tics.

What about your tic where you have to straighten your right leg out? (smashing on the accelerator)

It only happens if I'm walking or standing.

Simply curious, do you worry you may ever lose control at any point? Or do you have total confidence in your ability to maintain control while driving?

I have total confidence.

have you ever had an awkward situation prompted by your tourette that made even you giggle?

Not that I can recall.

If you could punch anyone in the face, consequence free, who would it be?

Obama

Do you not like Obama, or would that opportunity to punch the president just be too great to miss out on?

Both.

What situations tend to trigger your syndrome more?

Also, what is the swear/tic you say the most?

Lastly, did you ever had an instance when having Tourette Syndrome actually played out to your advantage?

1. Stress and lack of sleep make the tics much worse.
2. http://www.reddit.com/r/IAmA/comments/2iuz2b/iama_20_year_old_guy_with_tourette_syndrome_ama/cl5phcj
3. http://www.reddit.com/r/IAmA/comments/2iuz2b/iama_20_year_old_guy_with_tourette_syndrome_ama/cl5pkfu

What type of uncontrollable outbursts or habits do you suffer from?

http://www.reddit.com/r/IAmA/comments/2iuz2b/iama_20_year_old_guy_with_tourette_syndrome_ama/cl5phcj

Compulsive hyperlinking. Interesting.

Millions of families suffer every year.

Whats the hardest part of living with tourettes syndrome?

Trying to explain the condition on the rare occasion somebody notices it.

How does one notice it? Most people automatically assume that tourettes makes you uncontrollably swear but thats not always the case is it?

Well I very rarely swear. Most of the time when people notice, its because of my arm jerking and its not always obvious what would cause that to happen.

Twenty three year old with tourettes here, when I was a kid I let people's assumption of tourettes being only screaming and cursing get me out of alot of trouble in school, did you ever do anything similar?

Edit: the feels, they put me on clonidine as well, but I never got a snazzy tourettes card

Nope.

My good mate has tourettes and doesn't take medication. How necessary is your medication to suppress your tics? Could you manage without meds?

I actually haven't taken medication since high school. I had to stop because it was making me too drowsy and I was failing classes.

I've managed without medication for most of my life.

Does it bother you when people ask what's wrong with you or are you so used to it, the question seems normal?

It doesn't bother me much. What I don't like is when people then expect me to 'diagnose' them because they have some weird behavior they are actually in complete control of.

I've heard stories of people using various methods to overcome their tics. What's yours?

Plenty of sleep and exercise.

Is there anywhere you go to in public where you feel more "normal" than places you go during your daily routine? For example, in Deuce Bigalow (I know, terrible movie) the woman with tourettes was loved at a baseball stadium because he kept swearing... and people thought he was jeering the umpires. Wondering if there any scenarios like this for you?

edit: It was Amy Poehler, a female, not a man

Nope

Is your life like any other Rob Schneider movies?

http://i.imgur.com/X5kHDgJ.jpg

Have you read Oliver Sacks' story in An Anthropologist on Mars about a rural surgeon with Tourette's? His symptoms were severe, but he just kept plugging away at his career and quickly everyone around him became accustomed to it and gave him whatever time and space he needed to perform his tics, which were quite elaborate.

Sounds interesting. Got a link to the story?

Do you find that stress or illness makes your tics worse? What is the strangest or most misinformed thing someone has said to you or asked you about your condition?

Stress definitely makes it worse.

The stupidest motherfucker I have ever met thought tics and ticks were the same thing. No, dumbass, I don't have insects crawling around in my body.

How much do you identify yourself with Jerry Espenson (appat from the Asperger's, of course)?

I don't know who that is.

Do you work, or are you still in school?

Both

Did you ever get left out because of this syndrom?

Nope

On a regular basis, how often do the cursing symptom occurs ?

Maybe a few times a month. It used to be a daily occurrence.

Do the tics disappear under certain activities like singing?

They usually disappear if I'm doing something that requires a lot of concentration.

What are your thoughts on the episode South Park did on Tourette's?

I love it. South Park is one of my favorite shows and they portrayed tourettes more accurately than anyone else.

Can you consciously try to control when you have tics? Do you feel like it's you doing that?

If I feel a tic coming, I can suppress it, but that can backfire and make it worse later.

How so?

Constantly suppressing tics can make a buildup of stress and stress makes tics much worse.

Is it like trying to suppress a sneeze, and then an hour later you launch a snot rocket that could probably have broken out of Earth's gravitational field?

Exactly like that.

When did you realize you were "different" from other kids at school? Also, you said you were diagnosed at 13, did you show or have symptoms of tourettes when you were a young child?

I don't recall any symptoms from when I was a young child.

I have read somewhere that smoking weed allows people with Tourette to control it better. Have you tried this and found it effective?

I haven't tried it.

What are your thoughts on PANDAS? Do you think that may have been a contributing factor in the manifestation of your Tourette's?

I don't know enough about it to say either way.

How do you feel about the "Tourette's Guy" videos on YouTube?

I found them funny when I was a kid, but now after being diagnosed and living with tourettes, I think Tourettes Guy was an act.

You mentioned that you like to exercise. Do you ever lift weights? I'm wondering because it can take a lot of concentration and control, and I would be worried about a physical tic in the middle of a set if I had tourettes.

I don't lift.

Is there a Tourettes society that you are apart of? If so, what do you guys / girls do ?

We gather in the woods and sacrifice normal people to the gods.

Wow, I take clonidine as well except I take .6 mg at night for insomnia. Its neat how one med can do so many different things. Do you mind me asking what you take it for? If that's not okay, I understand. I had a lot of fun reading through your answers. One of the most fun AMAs I've read through.

I haven't taken it for my tourettes in years. I still have a bunch left over and occasionally take half a pill if I know I'm going to have trouble sleeping one night.

Hey! So I have had Tourette's since I was 5 29 now, no verbal tics mostly facial tics and tics with my breathing, I gave up on "treatment" for over 10 years now, because all they ever did was give me Clonidine like they do with you. Are there any new forms of treatment like? Cause the meds never helped me at all just made me drowsy and fall asleep.

I stopped taking the meds in high school. Just get plenty of sleep and get some exercise and see how that works for you.

What made you finally go for a diagnosis? Or what led to you being diagnosed?

http://www.reddit.com/r/IAmA/comments/2iuz2b/iama_20_year_old_guy_with_tourette_syndrome_ama/cl5pzlq

Have you ever seen the South Park episode that features tourettes? If so, how did you feel about their representation?

http://www.reddit.com/r/IAmA/comments/2iuz2b/iama_20_year_old_guy_with_tourette_syndrome_ama/cl5rkfo

Tourettes is pretty metal. Do you collect swords?

No