I'm a 20yo female with Tourette Syndrome. AMA

Scrolling down, i noticed you answered almost every question. Nice dedication!

Insomnia might as well be useful, right?

Haha, i just waste it on video games.

Also, i was wondering.. What happens when people question your tick?

I just explain it real quick. It's really NBD to me nowadays, and I'm always glad to answer any questions people have, especially kids.

Thats good :)

You should be a guest speaker at a elementary school!

Oh goodness. That could either go very well or very badly.

Have you seen the Tourette's episode of South Park? How did that make you feel? Offended?

Yes I have, and no it did not. I do totally understand that it can look hilarious, and that whenever people with coprolalia (saying the bad words) say taboo things that its natural to laugh it off.

This may sound extremely ignorant, but is it really like that guy on Youtube?...do you hate the social stigma that comes with the condition?

Not ignorant at all, it's just what the media puts out there. The part of TS that includes yelling/saying taboo words is called coprolalia. Very few people with TS have coprolalia. It's something like 5%, however, I don't remember where I read that. We all have some type of vocal "Tick", a noise we make, a word we say, and we can't control it very well, but usually it's not offensive.

In conclusion, it CAN be like the youtube guy, but only is VERY severe cases. I don't mind it when people know I have TS, because it make them feel better, usually, to know that even though I'm making odd facial expressions or noises, it has nothing to do with reality, and there is a reason behind it.

Why is coprolalia always offensive stuff. For example, are there variations where people make compliments instead of curses?

I don't have any experience with coprolalia, because I've never met anybody with it. I think the reason it's usually offensive stuff is because you're saying the things your brain is telling you you're not supposed to say. It's kinda like when I lose my filter with echolalia. I could see a guy walking a grey hound and say "Big dog". Not as a conversation starter, not on purpose, it just comes out. I think that's how it works with coprolalia. You're in the airport and you're thinking about all the TSA security and stuff, so the word "Bomb" just comes out of your mouth. That's probably not how the doctors describe it, it's just my opinion, but there could be some truth to it.

Have you ever accidentally started a really good conversation with a stranger this way?

This AMA!

24 year old male here with TS. I've had some experience with coprolalia and in my own personal experience you've summed it up really well. What you say is basically always connected to the situation. A lot of the time when it happened to me it was because I was in a stressful situation, Like the example you have given I've been in a few situations where I've yelled out bomb (in an airport, train station, on the london eye). Like you, I don't know medically how it works, but just to confirm that in my experience it is always linked to what you don't want to say at that particular time.

Well, I'm glad that we seem to have some kind of consensus on it!

There was a BBC (I believe) documentary on a couple of people. A 30~ year old guy and a 15~ year old boy. In one lesson for the boy, the teacher was using red, yellow and green cards to demeonstrate good/meh/bad (of something). The kid just shouts out "READY STEADY COOK". It seems like he just shouts whatever comes into his head.

The other guy, in one scene, is walking his dog and comes to cross a road. He explains that he's scared that the tick will make the dog cross the road when there's a car coming, and it shows when this happens. He's standing at the side of the road with his dog next to him, and there's a car coming and he says "GO ON BOY" and motions his hand as if for the dog to start walking. He quickly pulls it back and says "nonono", but still, that's pretty scary. In this situation, it makes him say stuff he doesn't want to, and he has coprolalia.

Would you say that you just say stuff that comes into your head about a new situation? Would you say that people suffering from coprolalia are fearful of what they will say, and that makes them say it?

I think so, but I'm not a professional. I think the more you think about not saying something, the harder it is to not say it.

I wonder...

I've always felt an urge while in formal business meetings to pick up my glass of water and throw it on someone. But there's something that stops me.

Is TS something like not having that thing that stops you?

Thanks :-)

Mmmm. Not quite. Usually my ticks are to make a feeling go away, not to provoke one.

I've always found it odd and a bit misleading that vocal tics are seen as a requirement for being diagnosed with tourettes. I definitely have it, and have been diagnosed, but I've never really had any vocal tics. The closest I may have come is clearing my throat loudly, or clicking my tongue.

Meanwhile, I have: rubbing my chin on my chest or shoulder, rolling my shoulder in it's socket (to the point where it pops out nowadays), cracking my knuckles, winking, blinking, rubbing my toes together and stretching my jaw and neck.

Edit: I'm 29 and was diagnosed at around 5. Second edit: My brother also has it.

By definition, you must present at least one vocal tick along with motor ticks for it to be considered TS. Vocal tick does not have to be a word or a phrase, it just has to be a sound you make with air, like your throat clearing or clicking.

It can be like that, but only in very extreme cases. I'm not ashamed or anything, and I'm good at laughing it off. I totally get that it can look/sound hilarious.

I had a client once that had this. Conversations with him took a lot of patience for both of us. Are there times when it is better or worse? Anything you can do to minimize?

It is highly linked to stress. and even my menstrual cycle. Being relaxed is a great way to make ticks less frequent/severe. Usually if I'm having bad ticks I prefer to just address the elephant in the room, that way people aren't spending their time wondering whats wrong with me instead of actually communicating with me.

I'm not necessarily advocating you go get drugged up or anything, but would any sort of medication help with that? If relaxation helps eliminate ticks what about a low dose of a sedative or anti-anxiety drug? I read some of the medications they give for tourettes but most seems like it is for treating complications of having ticks(ie prozac for social anxiety from having bad ticks) and not actually trying to prevent ticks.

What about alcohol? Do you drink and does it make things worse or relax you enough that it helps?

Thanks for answering a bunch of questions even if you don't get to mine.

I have a rather lengthy and BAD history with mental health, and antidepressant and antianxiety medications. They just don't seem to work well for me, and the side effects are really bad. But thats my personal experience. I'm sure there are many, many people who medicine works well for. Unfortunately, not for me.

Alcohol usually makes my ticks worse, unless I've drank WAY TOO MUCH, then I'm not really moving much at all.

What about cannabis?

I do not live in a medicinal use state, however, I can tell you that my ticks are, for all intents and purposes, non-existent on cannabis.

Thanks for the fast reply. If you got prescribed those things for your tourettes I'm sorry they didn't work out. Seems like you have a pretty decent handle on it though from other comments.

For what its worth a lot of people complain of nasty side effects with SSRIs and stuff. I just know some people get relief too so I wanted to ask.

I've also taken xanax and valium for brief test periods and found they did little to nothing for me but a friend who takes them can't seem to get by without them.

Everybody's body and brain work differently, so I won't ever totally discredit something because simply becuase it just doesn't work for ME.

Whats your tick ( I think thats what its called) ?

You are correct, they are called ticks, and I have quite a few, none of them too severe right now.

I stretch/flex the muscles in my face, primarily my brows and eyes.

My right arm tends to fly up toward my head, it almost looks like a salute.

My head tends to snap to the left (think ear to shoulder)

I stretch/flex the muscles in my lower legs

I wheeze out all the air in my lungs and hold it that way until it feels "right"

I make a small "hm" sound, much like one does while pondering to oneself.

I nod my head repeatedly, making my brain jiggle a bit against my skull, I do this until it feels "right".

To be diagnosed with TS you must present at least 1 motor ticks and one vocal tick.

How often do they happen?

The frequency can change a lot depending on what I eat, how stressed I am, how much I've slept...

Any where from 2-100 ticks an hour. They go away completely when play with the other ents over at /r/trees, but they get more severe when I drink alcohol.

So Mary takes all your ticks away?

That does seem to be the case. I'm not a medicinal user, it's not legal in my state. I toke, socially, infrequently, and so far I do not tick while toked.

Would you consider moving to where it is in order to use it to treat tics?

Not currently. While it's a part of my life everyday, it is not in control of my life right now. My SO and I own our home here, and he has a great job. I like my job, and I'm quickly being promoted up and on to better things, so I want to stay put. The SO goes back to school for either a double masters or a Ph.D next fall. Once all that is over, if he wants to move to find another job, I think I'd like to move to a state where I have it as an option, even if it's not necessarily my plan.

Is there any medication or therapy that helps with your tics? Because I do a lot of similar things and I hate it.

I currently do not take any medication. I have filled a scrip, but I don't want to mess with the side effects right now. To be completely honest, on a bad tick day I just do the things that make me feel relaxed. I take a bubble bath, drink some decaf tea, and read a book. On Bad Tick days that I need to be productive I do some jumping jacks here and there, it seems to lessen how many ticks I need to do to make the urge feeling go away.

What are some of the ways you have learned to function with this condition? How have you learned to control some of the outbursts?

Many of my ticks have to do with the muscles in my face, lower legs, and arms.

Whenever I have ticks in my face, I usually rub my eye/temples as if I'm tired or I have a headache. I think this is less distracting for other people to see than watching me systematically furrow my brow or widen my eyes.

When ever I have ticks in my arms I try to make it seem as if I was adjusting clothing or scratching an itch, or fanning my face. My right arm tends to fly up (almost like a salute), so I then disguise it by brushing my hair out of my face, or re-arranging my pony-tail.

When I have ticks in mjy legs, it is very hard to disguise, usually because I rarely feel those ones coming in time. The frequently make me loose my balance, which causes attention to be drawn to me, and I don't like that.

Ticks are usually accompanied by a premonition urge that lets me know that I am going to tick. It feels a lot like the "Point of no return" right before you sneeze. Once I feel the urge I can usually suppress th tick for a few minutes, but the long you hold off, the more intense the feeling gets, and when you can finally allow yourself to tick, they are more severe/frequent.

I'm doing rather well right now, both in frequency and severity. I haven't gotten hurt by a tick in nearly a year. I've fallen down stairs, dunked my hand into boiling water while cooking, hit myself in the face by accident and so on... It sucks at the time, but I do understand that it can look like a slap-stick comedy routine, and I'm never offended if somebody cracks a smile or lets out a giggle.

Currently I feel safe driving, but on days where it's not in my best interests to try to drive myself it can be crippling. I ended up failing out of school because I missed to much class because it was not safe for me to commute.

Most of my co-workers say that if I didn't tell them about my TS they would not have guessed. I'm not sure they're being totally honest, but I think it may be a combination of me doing my best to disguise my ticks, and them trying to be polite. I rarely ever have a customer (I'm a retail cashier) make a comment or look confused, and when they do they are always embarrassed, even though it's totally OK.

My right arm tends to fly up (almost like a salute),

Mein Fuhrer, I can valk!

Oh, my, gosh. Thing boy scout salute, not Nazi salute.

In case you didn't know, it's a reference to Dr. Strangelove (also what I thought of right away when you said that)

Ah.

Oh my God, I've done that my whole life. I'll furrow my brow for no reason like I'm thinking about something, or I'll wiggle my ears, or clear my throat repeatedly, or twitch the muscles in my neck or forearms or the back of my legs without thinking about it. And when I consciously try to stop, the urge just builds and builds until it's unbearable and I end up doing it a bunch of times just to get it out of my system. I always assumed I just had some sort of OCD.

Well look at you! We're tick buddies!

Worst superhero team ever.

Dude, hand me some nunchucks, and neither of us would know what hit you.

She was born for reddit.

Dawwww :-)

Hilarious!

Glad somebody got it!

With regards to people saying they would not have guessed had you not told them, I get this all the time, and I think it's simply because we become so adept at hiding it, because until you really understand it it's incredibly awkward and embarrassing.

When I was young my Mum used to tell me to "just stop it", which further compounded the problem. My (ex) wife used to tell me my ticks "annoyed her".

FYI My Mum now understands (I'm 37 now :-P), and my wife (not my ex, she's still a bitch) couldn't be more understanding. So it's all good.

When I was very young, maybe 8 or so? I was told to "just stop it" and I just ignored it, because I KNEW I couldn't, so I didn't bother trying. Around 13 I realized that I should make an effort to suppress it, because other people were starting to notice.

It's easy to see (now) how someone who no experience with TS could fathomably not even know something like this can exist (especially in the early 80's), so I don't blame my Mum at all.

But it did definitely compound the problem for me. My Mum telling me to "just stop it" and the fact that I couldn't, just made me feel like I was just really messed up, and really, really alone. I tried to suppress it so I could get along with "normal people", which took so much energy and focus and meant I spent so much time alone that I never really learned the social skills I needed. When I was forced to interact I found myself mimicking what I'd seen other people do in an attempt to appear normal, which worked for the most part.

It wasn't until I met my wife (not my ex!) ~7 years ago that I've actually stopped feeling alone. And I don't really feel broken any more. And my parents have apologised for the way they treated me. I've never felt better, actually, which is probably why I can sit here typing this :-)

Its amazing what the right environment can do for a person!

Wow, I feel bad! If you lived near me I'd offer to give you a carpool so you can get to class.

Nah, I always hated school. I'm kind of glad that I'm not in it anymore. I'll be going to bartending school this winter, and I get to pick and choose when I go, so that will be helpful for me :-)

No question, I just wanted to comment that is this the most informative AMA I have ever read. You're great, OP.

Well, thank you verymuch, Bird!

I saw this TED talk last year. In it he mentions a cheap, easy, noninvasive treatment for Tourette's syndrome (watch from 4:25 for the lazy). I really hope it's something you might find helpful. Good luck!

I had not seen or heard of this! Thank you so much! I'm definately going to research this more.

Thanks for doing this AMA! I went to jr high with a guy that I'm fairly certain had TS, but he never mentioned it specifically. He'd have some motor skill ticks, mostly shrugging, some slapping his forehead or pounding his fist (it looked like he was upset at something or himself, but he clearly wasn't), and the occasional "yip" sound. I never bothered to ask him about it because he was clearly having a hard enough time dealing with kids being kids and making fun of him, so I just ignored the ticks entirely.

A few questions, if you don't mind.

• What are some of the funniest things that have happened due to having one of your ticks?

• If someone sees you having a tick, would you rather they say nothing, give you a knowing look, or say something like "it's okay"?

• How quickly do you divulge your TS to a stranger you're going to be around for an hour or two? Do you bring it up ahead of it happening, or just hope to conceal it or explain it when it happens?

• Do you have ticks during sex or masturbation? Any of them humorous in nature?

OMG! I was hoping somebody would ask for a funny tick story! Once inthe 9th grade we were outside in the cold for marching band, and I had my arms wrapped around myself for warmth. I was hugging my flute just like this:

Imgur

I TRIPLE head-twitched into my flute. I swear I looked like a woodpecker just banging my head into it 3 times in quick succession. My friends and I literally fell on the ground laughing. The best part is we all had our nick names printed on the back of the hoodies we were wearing at the time, and my name is appropriately "Twitch"

There was also a time in high school that my friends convinced a substitute teacher that I had done cocaine right before the class, that was hilarious too!

Usually I do an okay job disguising my ticks a pretty normal action/nervous habbit. People rarely ask me. I'm fine with people saying nothing. If they ask I never have a problem explaining, and I would probably be confused if somebody told me "it's okay". Only because I'm totally comfortable with it. It's as natural to me as a sneeze or a hiccup or a cough. I know I'm okay, you don't need to tell me. I think that most other people with TS would feel that way too, but I can't speak for everybody.

I usually don't bring it up unless I'm asked if I'm okay. Or if i do a stupid huge tick that I can't cover up and they look confused. I don't like making people feel uncomfortable, so once I sense that they're feeling weird about me, I take a second to explain, and they usually seems to feel more relaxed after that.

It can happen during sex and dampen to mood, but my SO is so used to it by now we get over it pretty quickly. As for the masturbation part... lets just say that once I'm close that's the only thing my brain is thinking out. Consciously or subconsciously.

Is dating difficult? Or making friends? I'm sure most people (like me) wouldn't ever confront you about your tics or language, but has someone? Worst confrontation?

People with TS who say bad words have what is called Coprolalia. Coprolalia is not common, only about 5% of people with TS have coprolalia. I don't say/yell taboo words, so I don't have coprolalia.

I have never had an issue in the dating scene, I like to think that my personality outshines any weird motions or noises I make. I'm able to laugh at myself when my ticks make me do dumb things, like silly facial expressions or flailing my arms.

I've had very few people make any comments, but in school, before I was diagnosed, there were yearly letter and phone calls to my parents from my teachers because they were concerned.

My worst confrontation was not even bad. I'm a cashier, and I did a rather large tick: head jerk and arm flail combo. My customer said "OH! Looks like you've had a chill down your spine!" I replied "No, I have Tourettes." and her face turned white. She added "Well... I guess that's... sort of.. like a chill." She was embarrassed, and unfortunately she walked about before I could tell her that it was okay, and I'm not at all offended.

I really am able to laugh at myself because I know sometimes I look like i'm doing a personal Hokey-Pokey.

I'm not sure if this is negative from me in any way (sorry if it is) but I'm incredibly shocked that that is the worst story.. As I was reading the list of your ticks I was immediately feeling sorry for the amount of abuse I ASSUMED you would've gotten.

Sorry if that's negative in any way.

You're awesome btw, thanks for the AMA. :)

I'm just lucky to have friends that like me, twitchy, ticky, noisy, me.

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Of course! I think bring people to understandings could solve a lot of social issues, I'm just thrilled that this AMA has been so well received.

Its a seriously misunderstood disorder with a ton of misinformation brought on by movies and comedies.

I have read that several people with this disorder have found that if a certain situation they have no tics. Have you found one of your own?

Well the only times I know I do not tick is when I play with the ents over at /r/trees. My SO tells me that I even tick in my sleep.

I do a pretty good job suppressing ticks if I need to be still or quite. I was a ballerina for 16 years, marching band, softball, motorcycle. If I need to contain them, I can for short periods of time (15ish minutes, MAX) but after I'm done holding them in the get really frequent/severe. It feels similar to when you realllllyyy need to go pee, but have to wait until you can find a toilet. Toward the end your whole body is just screaming on the inside.

how can you tell if you have tourettes?

Well, you have to go to a neurologist/movement disorder specialist to get a diagnosis, but if you do some of these things, you may want to check with your doc if you get a premonition-like urge (Think about the "point of no return" when you sneeze) that lets you know that you need to flex/stretch a muscle in a certain way, or make a noise, or say a word.

You can have "ticks" without have TS. To be diagnosed with TS you must have both motor and vocal ticks.

I'm not trying to be insulting or what not, just genuinely curious, does it ever cause issues during sex or anything like that?

Not insulted one bit. No worries. It has occasionally cause hiccups here and there. Things like a kick or an arm flail at a bad time. The biggest problem is actually my response. I've learned just to laugh at myself when I tick, so when things are hot and heavy, and then I tick, and then I laugh automatically, it kinda kills the mood. I think I've head-butter my SO once or twice also. Thankfully my guy is really chill and understanding, so he kinda just follows my lead and eventually it gets back to the awesome sex part.

I too have Tourette's!

I was diagnosed with a "mild" case (no swearing, just fidgeting and grunting) when I was 9. I used to violently shake my head (as if I was telling someone "NO, ABSOLUTELY NOT") and gulp very loudly (as if I just saw something very daunting or troublesome), among many other things.

the tics have lessened in severity over the years, or even changed into entirely new tics. I'm 27 now and I work the night shift, so I'm tired a lot which is when the tics seem to really flare up (mostly just constant very deliberate blinking and muscle flexing combined with vocal "clicking"). fatigue and stress seem always to have been the main causes of flare-ups

I don't really have a question for you, I guess it's just nice to hear from someone else who truly knows what it's like

I always like hearing the ways other people describe their ticks. I like how you said "deliberate blinking". I think that's a very good descriptions, and I might adopt that phrase for myself.

What are the three biggest misconceptions of Tourette's Syndrome that the majority of people have?

That EVERYBODY has coprolalia.

That I'm ashamed of my ticks

That they need to console me after every tick with things like "It's okay!" or "are you alright?"

What's your favorite color?

Hot Pink, and Black. What's your favorite color?

Turquoise! ^_^

oooooh that might be my 3rd favorite color, along with lime green.

Wow you are very patient. I have seen you answer the same 3 questions posed 20 different ways and still be cool about. Keep on keeping on!

Copy pasta is my friend!

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I thought my sneeze thing was pretty spot on too! But I never knew if it felt that way to other people.

It's had a quasi-negative impact on my life so far, because it was very debilitating when I was trying to go to college, but since I've let that go, and have found a job and a permanent partner, and a stable home, I've been much better, and now it's barely affects my life at all. I've become so comfortable with it and myself that I don't need to stress on it. Everything has gotten better for me since my diagnosis.

Thanks for answering questions about Tourette syndrome it is very interesting and I'm sorry some people are being twats

Nah, haters gonna hate, potatoes gonna potate. I opened myself up to it, and I know I can handle it.

Hi I was wondering a few things and if I could have a moment of your time to answer my questions.

1) How fast or early did your condition develop for you?

2) Do you think seeking treatment earlier would help adress the condition better?

3) Is it expensive to seek help for this kind of condition?

1. The first recorded incident, I was 6 months old and ticking. My mother thought I was having some type of seizure so she took me to the ER. I ticked all through my childhood, and it god steadily worse through puberty. I was officially diagnosed in 2011, I sought a diagnosis then because the ticks were becoming debilitating. They have since become much more manageable.

2. In my specific case, I do not think so. Nearly all the medications that help reduce ticks have negative mental side effects. I was already a psychological mess during puberty, and I think it could have gotten a lot worse if I had tried to medicate. However, this is not the case for every one, so it could be helpful for other people to try medication early one.

3. It can be expensive. In my specific case, I had to have my GP refer me to a neurologist, to refer me to a movement disorder specialist. That's 3 appointments I had to pay for, just for a diagnosis. The medication can be very expensive, as much of it is not yet approved by the FDA for treatment of TS. my Zyprexa was available to me though a drug company who dealt with my insurance company for me, and works on donations. If they were not around, it would not have been covered by my insurance, and I would not be able to get it at all.

Number 3 sucks! I am so used to living in a country with free healthcare that these sorts of stories just shock me.

I really wish that the US could figure out some balanced way to get everybody the health care they need. I understand that it's a lofty goal, but it would be nice.

Is there an emotional build-up of any sort, accompanying the premonition/tick ... with the sneeze impulse?

Hmm... I've never considered this before. When I feel that sneeze-like impulse, I do mentally WANT to tick, but I don't know if that is part of the syndrome, or if it's just because I know I will feel relief of the sensation once the tick is over.

Oddly, and I never realized this until now, but I relate to a lot of your ticks. Especially the lung thing, I just figured I was a little OCD/had anxiety. Are your ticks more triggered if you're nervous or upset?

Anything that causes me stress makes my ticks worse. I've been diagnosed with anxiety, but I'm doing great right now.

Besides the obvious involuntary actions, are there any other symptoms included in having TS?

Not necessarily symptoms, but people with TS frequently also have ADD, ADHD, OCD, Depression and seem to have a predisposition for schizophrenia.

Can Tourettes go away or do you have to live with it forever?

Yes and no. Most children with TS grow out of during the last phases of puberty. Anybody who still ticks into their late 20's will probably tick forever. The ticks wax and wain, so there's a possibility of ticks disappearing for months at a time. My Movement Disorder Specialist does not think I will grow out of my ticks, because they became worse during the last stages of puberty, not better.

Have you ever faked moments where you used TS? Or have triggered it on purpose?

I don't think I've "faked" it but I'm usually and doing varying degrees of "holding it in". When I need to get out of a situation to "let it out", and people around me are not taking me seriously (like the disability office at my old college) I would not hold it in any more at all to sort of push people toward taking me seriously (Think Hulk in Avengers 2, "I'm always angry") So... not faking, not triggering... but using it to my advantage?

Also, once I had to go to the ER because (as I later found out) my kidneys were failing, I was in such hysterics because of the pain that I was not controlling my ticks at all, and the ER people put me higher on the wait list because they thought there was something else wrong with me. I guess it worked out in my favor then too.

Do either of your parents/ immediate family have Tourettes? How and when did it first manifest itself? thanks <3

The first time anybody remembers me ticking was at 6 months old. My mom that I was having a seizure, so she took me to the ER. Nobody else in my family was diagnosed with TS, however their is heavy suspicion that my maternal great-grandmother had it, and was just never diagnosed.

I've always wondered in situations where you can't do your ticks (physical restraints or getting an MRI and having to stay in place for certain periods of time) how does it feel? Anxiousness? Painful? Does it lead to more severe ticks once you are able to move?

It feels very much like when you need to go pee realllllly badly, and you have to wait. You're whole body is focused on how bad you need to go. Once I can move again they get very frequent, and very severe.

What is your "tick?"

I stretch/flex the muscles in my face, primarily my brows and eyes.

My right arm tends to fly up toward my head, it almost looks like a salute.

My head tends to snap to the left (think ear to shoulder)

I stretch/flex the muscles in my lower legs

I wheeze out all the air in my lungs and hold it that way until it feels "right"

I make a small "hm" sound, much like one does while pondering to oneself.

I nod my head repeatedly, making my brain jiggle a bit against my skull, I do this until it feels "right".

I have echolalia, that means that I repeat words or phrases other people say to me sometimes, and other times I just way what ever thought is running through my mind.

are you allowed/can you drive?

I do drive, both a car and a motorcycle. Winter 2011/2012 was bad for me tick-wise, and it was not safe for me to drive. Right now I'm doing great, and I drive plenty, but I just kinda hold myself personally responsible for sort of "feeling out" whether or not it's a safe thing for me to be doing.

I've got a younger sister who is turning 10 in a few days. She has had tics for a pretty long time, but recently they seem to be going away slightly (although it is summer, so a lot less stress). We were told that it would most likely go away with time, but upon further research, my Mom was convinced she has mild touretts.

So, now to my question. When did you discover that you had touretts? Have there been times when it seems like it's going away, to come back?

The first documented ticks, I was 6 months old, and my mother thought I could be having a seizure, so she took me to the ER. I continued to tick all through childhood, and puberty. They got the worst when I was 18, and left for college. We went to a doctor after I broke my foot falling down some stairs becuase my leg ticked out from under me. I was diagnosed then. My ticks are highly related to stress, so finals week, in a snow storm, with a broken foot, after having surgery to remove my appendix was HELL.

They wax and wain, but in generally they are pretty consistent.

Why no medicines now and what do you do to cope? I find that mine disappear when i focus but flare when I'm not at a task

I'm very similar. When I zone in on something they get less frequent/intense.

I'm not using my Zyprexa right now because I'm doing alright managing them with pure will-power right now. If I start to become a safety hazard to myself again, I will consider using them. I don't want to take them right now because:

A. I have history of depression, Zyprexa can make it worse B. If the Zyprexa makes it worse, my ticks get worse. C. If I were to chose to begin taking the Zyprexa, I would have to go to weekly appointments with a psychiatrist so they could monitor how bad the side effects are, that way they don't get out of control. I currently don't want the weekly commitment if I can manage on my own.

How does your TS manifest itself? Is it bad language or a tic?

I stretch/flex the muscles in my face, primarily my brows and eyes.

My right arm tends to fly up toward my head, it almost looks like a salute.

My head tends to snap to the left (think ear to shoulder)

I stretch/flex the muscles in my lower legs

I wheeze out all the air in my lungs and hold it that way until it feels "right"

I make a small "hm" sound, much like one does while pondering to oneself.

I nod my head repeatedly, making my brain jiggle a bit against my skull, I do this until it feels "right".

To be diagnosed with TS you must present at least 1 motor ticks and one vocal tick.

People with TS who say bad words have what is called coprolalia. It is not common, with less than 5% of people with TS presenting.

I have what is called echolalia, sometimes when I hear a word I repeat it. Sometimes when I have to say the same thing over and over again, I can't stop. (example, I'm a cashier, I have to ask every customer if they have our loyalty card, at the end of the night after I've asked the question 300 times, I can't stop saying the question on my drive home)

It sort of feels, to me at least, (I don't know if this is medically founded) that sometimes I lose my filter, that whatever thought crosses my mind is vocalized. my echolalia is not bad, maybe only five or six echo's a day.

Reminds me of the time my family and I were at the grocery store. An older guy who worked there helped put our groceries in the car and kept repeating ''yes sir'' every second. Not completely sure if he had tourettes but it definitely sounded like it.

That's sounds interesting. I've never paid too much attention to echolalia, because mine is not very sever at all, but I wonder now about people who have echolalia only, and not TS?

My younger sister has tourettes and it's so hard to see her tick, one of her ticks is knocking her knees together and she's constantly in pain from it. She once told me she could hold in her ticks, but its like trying to hold in a sneeze and it's very uncomfortable.

Thank you for doing this AMA, I've sent it to her to read it hoping it will give her some inspiration in understanding and accepting her tourettes :]

No problem! And she's totally right about that sneeze thing! I feel that way too!

Has being to a neurologist helped at all?

I've been to the doctor's for my tics a few years ago, and they all recommended me to a neurologist to get it verified, but I was stupid and somewhat ashamed of the stigma of being labeled as disabled.

I ask because there are bouts of severity: I'll have a month or two where they don't cause much issue, but then they'll come back more noticeable than before.

Also, just out of curiosity, what are your tics? I've talked to a guy with tourette's before and we shared similar tics. I've always wondered whether there's a "trend".

I stretch/flex the muscles in my face, primarily my brows and eyes.

My right arm tends to fly up toward my head, it almost looks like a salute.

My head tends to snap to the left (think ear to shoulder)

I stretch/flex the muscles in my lower legs

I wheeze out all the air in my lungs and hold it that way until it feels "right"

I make a small "hm" sound, much like one does while pondering to oneself.

I nod my head repeatedly, making my brain jiggle a bit against my skull, I do this until it feels "right".

I have echolalia, that means that I repeat words or phrases other people say to me sometimes, and other times I just way what ever thought is running through my mind.

Going to the neurologist let me be referred to my Movement Disorder Specialist, which opened me to up a wealth of information and many avenues for treatment or management. Education is half the battle for me. I want to know whats going on and why, and how to help myself. It make it easier on my psychologically, and stress free is best for me.

Do you have any problems driving? I saw a video once were the guy looses control every few seconds and still drove his car.. Thank you

I used to. On days that my ticks are bad, I don't drive, but I haven't had a day that bad in almost a year. winter 2011/2012 I ended up failing out of college because it was too dangerous for me to commute to school :-/ Now I'm fine.

Wow ... and how do these "bad-tick-days" get indicated? How do you know? Also, what do these ticks include? I heard swearing is often...

NONONO! Only about 5% of people with TS have coprolalia (the swearing)

Bad ticks days can be the result of nearly anything. Too much stress, hungry, too much noise, not enough sleep, being on my period... I know when it's a bad day because if I tick 200 times before breakfast, it gonna be a rough day.

How much does it impede on everyday activities? Do you have to do certain things or have a certain routine to minimise your ticks?

I get really ticky if I don't sleep enough, which is kinda nasty, because I don't sleep too much. Caffeine can make it go nuts, but I love Monster... So I guess I have to use it sparingly. I'm usually careful in public places because I don't want to accidentally hit somebody, and have them hit me back :-/ but I still love being out in public, and I love moshpits because I'm allowed to bump into other people.

As for a routine... it's always changing. I just cater to how things are feeling, one day at a time. Whenever it's bad, I just do my best to do things that relax me. If it's a good day, then so be it, I go with it.

Thanks for your time, and just being so upbeat about it aswell! Don't let it get you down! :-)

NEVER!

I read most of your answers and found them very heartwarming and positive. It appeared to me that you were a very positive and happy person and that made me smile. I then looked at the proof and read that you had anxiety and depression, and that made me realize it wasn't as beautiful with rainbows and happiness as I first imagined. I just wish that you got through your depression since then, because you're such a wonderful person that you manage to make a complete stranger 750 km away happy to read your answers.

Question: why aren't you single? ^{I'm just kidding}

Because I'm an average sized gal, with average features, with average interests, and above average boobs. The SO just couldn't let me get away I guess :-)

Do you ever have ticks while having sex? What happens?

I do sometimes. My SO and I are used to it, so we usually just kinda ignore it, but if it's a major one, we kinda take a tiny timeout before we get back to the good stuff.

My brother has Tourette's syndrome and his ticks started as minor motor, to severe motor, then to severe motor and auditory, now at 24 he has just mild motor. Has your ticks changed much at all or have they been somewhat constant?

There grew increasingly worse through childhood and puberty. They have subsided over the last year or so quite a bit, but I think that is mainly do to the low-stress life I'm living now in comparison to how hectic it used to be. I'm sure if things in my relationship with my SO or job got stressful, my ticks would come back in full force.

What kind of tourettes do you have? Also, has it prevented you from doing anything thus far?

I'm not familiar with all of the different types and severities, but I have a few friends with tourettes. Theirs are just muscular, so they just involuntarily twitching that just comes and goes in spurts. Also, both are pretty successful career-wise.

I have motor and vocal ticks along with some acute echolalia. I unfortunately failed out of college during winter 2011/2012 because it became unsafe for me to drive to school, and the teachers were not the least bit understanding. However, I do admit that I have never been much of a scholar, and I probably could have found a way to make it work if I really wanted it, but I didn't want to get wrapped up in special education plans and tutors and video-conferencing.

Have you seen the movie Niagara, Niagara and, if so, what are your thoughts on it?

I have not seen it, but now I'm curious. What is it?

My brother is 12 years old and from a very young age (Maybe kindergarten-ish) he has had ticks. Maybe 2 years ago he was diagnosed with OCD and Tourette Syndrome. How did you parents help you through it? Have they always been understanding? Do they ever get irritated even though they understand it's beyond your control?

I was only diagnosed in 2011. I was a psychological basket case during much of puberty, so concern for my ticks was low on the priority list, because my parents were focused on trying to get me the psychological help that thought I needed. They rarely get aggravated with ticks, because I'm rather quiet about it, and not very grandiose. Along with TS, I've been diagnosed with OCD and ADHD, but I think I'm doing a rather good job controlling those parts too.

They've really given me the most help through having their medical insurance. I'm thankful that I'm able to go to doctors and specialists and get medication if I need it. It takes the worry out of it for me, and that's great because stress=ticks.

Have you found your tics to start to fade over time? I'm the same age as you and started getting tics around 13, but over time they became less severe and less frequent, and now they're pretty much non existent.

I first presented ticks at 6 months old. My mother thought I was having some type of seizure and took me to the ER. We didn't pay much attention to them while I was a kid or during puberty because hey, kids are weird, they do weird things. Around 16 they started to become worse, and personally the get worse when I am stressed or depressed. When I left for college it became debilitating. I broke my foot because I ticked while trying to walk down some stairs. I could not commute to campus in my car because it was not safe for me to drive myself places.

I am currently on no medication, but I have a prescription for Zyprexa waiting for me if I ever chose to try to medicate. It's a nasty catch-22 for me, because the Zyprexa will make me depressed, and antidepressants make my ticks much worse. it could be years before we get proper, balanced dosages right, and in the mean time, I need to be functioning.

My ticks are still very present, and my Movement Disorder Specialist does not think I will grow out of my ticks.

I'm almost 31 and was diagnosed with tourettes when I was nine. I lead a perfectly normal life. I'm a firefighter. I applaud you for posting this. I'd thought about doing one myself. I'm currently on no medicine either(used orap, tenex, few others for a while. Orap was great for a bit), and outgrew a lot of my ticks. If you ever want to talk about it, feel free to shoot me a message!

I am also taking no medication. I filled a scrip for Zyprexa, but it will make me depressed, and antidepressants make my ticks worse...

So it's pure will-power for now.

Have you any experience with Zyprexa?