IamA (17 year old HS student with Tourette Syndrome and TEDx speaker!) AMA!

Do you feel an urge to type outbursts or is it only verbal?

Surprisingly, and oddly enough I do!

Nobody actually believes me so I never bring it up, but I do!

When I'm on the computer I always have to type "LOL, or lol!"

I really don't know why, but it's really annoying. And i don't have that tic verbally.

Also I have to press the space bar randomly sometimes, and sometimes I even have to write out "lol" on paper when I'm doing school work.

I'm not sure why I don't need to type out my verbal outbursts, just a completely different tic I believe.

Thats pretty interesting. Id wonder what your messages look like unedited

Haha, if I just let it go, it'd be messy, but part of the tic is I need to delete it all as well. Sometimes I even have to press the next paragraph return button lol.

If only there was a way to disable the delete button because then I could see how it looks and I can show you too! Haahah

That sounds really cool actually. I hope some actual scientist sees this or does something to expand upon written tourretes

Yes, another big misconception about tourettes.

I know many people don't believe that I can have typing tics. I know that TS has a lot of co-morbodities like OCD, ADHD, LD's etc.

I'm pretty sure the repetition of words, typing tics and all of those have something to do with the compulsion of the OCD combined with TS. Very complicating I know, sorry if you don't understand it, but there's only so much research that has been done!

Its not that confusing if you know that tourettes isnt just saying random things without intention, it can be doing certain things

True.

All it takes is more awareness about it, because it's very easy to understand all the intricacies if you understand the basics of the disorder, then again, that goes for anything really...

If only there was a way to disable the delete button because then I could see how it looks and I can show you too! Haahah

Since deleting is also part of the tic, a better way to document it would be to use a keylogger/screencapture

good point, would be so cool and interesting to see

I heard that Tim Howard has the same syndrome but I never saw him doing what people with Tourette usually do... Are there levels of this syndrome that can be cured or in some cases it is incurable?

Yes, Tim Howard does have it, and in fact I used part of his book in my talk! Anyways, there are levels to TS. TS can come in many different forms and is different in every single person. There are many common tics like facial expressions eye blinking eye rollling etc. and then there are more extreme ones.

For example, I have a swearing tic, and although it's commonly believed everyone with TS swears, only 10% of people with TS actually have those tics.

Back to Tim Howard, generally tics start to decrease or totally disappear after your puberty years and as you get older. Again, each person with TS is different and there's a chance that it won't get better, but more often than not it will decrease.

Tim Howard probably still has some tics now, but it's just been a lot less mild since he's much older now. Now I don't know if he's always had it a lot less than others, or if he had it bad in highschool and it's calmed down since then...

I hope I answered your question!

What's the most awkward situation your disease (or diseases/syndromes) have put you in?

You can call it a disorder!

So a funny one-

My friends and I were deciding what to do.

Friend: What should we do today? Me: Idk? Swim? Frisbee? Movie? Friend: Idk, we could Me(out of the blue): F***!

Hahaha

Also, another awkward time was when i was in the theaters and in a very intense and quiet scene, I yelled out F*** and everybody just stared at me.... haha

So... Did you? Don't leave us hanging here.

no....... haha

It's good you have a sense of humour about it.

Yeah, my friends and I love to look back and laugh about things! Of course there are certain jokes that cross the line, but I'm definitely down with making jokes about it. Lightens the mood, and after all, it's funny to make fun of yourself sometimes! :)

If you could choose your tics, what tics would you choose?

That's a very interesting question, and first time ive heard this one!

I would totally keep my f*** one, it's so funny and amuses people.

I know a friend with a tic that makes him hug people. That tic sounds awesome! Well, there's a hot girl over there, hopefully I need to tic! :)

I used to work with a girl who's tic was crossing her arms across her chest and rubbing her forearms quickly (like a shiver).

I guess she got pretty tired of people asking if she was cold all the time.

I know one of mine is I have to make this throat clearin thing. It sounds like I'm wheezing, so many people kept asking if I could breath properly, lol.

Got annoying after a while to be honest

I've collected the whole set: TS, anxiety, ADHD, and OCD. I lucked out with my tics though, when I was younger it was a very noticeable - I blinked more than all the people around my combined and had this annoying head twitching that everyone always had questions about. I'm 23 now, and while it hasn't gone away, it's gotten a lot less noticeable. Still blinking a hell of a lot, but the head twitching has been replaced with random muscle contractions. No vocal tics at all.

That's great man in regards to your tics! I hope that's the case for me when I get older as well!

I have the same as you but no ADHD. Is the ADHD the tough one for you?

Well I didn't start taking medication for it until I was 21. It was apparent to everyone that knew me that I had extreme difficulty concentrating from an early age. I would frequently make mistakes due to inattention (glossing over negative signs in math class, etc). The meds helped a lot (methylphenidate, in case you're wondering) but I also learned to harness it. With ADHD, it's extremely difficult to do mundane things, but I've been lucky enough to find a job where I get to solve difficult programming challenges, and that brings out the 'hyperfocus' which actually allows me to be really good at what I do. With any of these disorders, I think that it is important to realize that they might be with you for the rest of your life, and that as you go along, you will find new and creative ways to manage them. On a side note: ADHD, OCD, and TS have been tied to a group of neurons that change pretty dramatically once you reach 'adulthood'. (As far as I know, around the 21-22 range, but I don't know enough to say for sure). This is something I've read about and is not necessarily fact (more research is needed.) However, it does explain that most of these conditions are seen to vanish or lessen with age.

It's absolutely awesome that you were able to find the strengths of having ADHD.

In my opinion, these disorders takes a lot of will power and perseverance to deal with it. Social and academical challenges teach us how to fight through it! I feel that these qualities transcend to everything we do! Great to look at positives too ;)

I do the throat clearing thing all the time. Can i now be self-diagnosed with TS?

Well, to be diagnosed you need multiple vocal and motor tics lasting over a year.

If that's your only "tic" it is most likely just a mannerism

Also, idk if they're necessarily ticks or not, but i always am cracking my fingers, neck, etc. and i spit all the time.

I have a question for you that could help out.

What happens if you don't do these actions? how do you feel?

I feel annoyed. I can hold the spitting in. But i have to crack. I'm sitting here right now rethinking everything that i know to be true.

Seriously though.

How does it feel when you don't do it?

Do you feel tense in that area or something ? describe as best as you can please!

Sorry that this one is kind of irrelevant, but what is your ethnic background, if you don't mind my asking?

Born in America, parents are both full Filipino!

So American Filipino. :)

Ah, OK. Great Ted Talk by the way. That quote about focusing on your abilities as opposed to your weaknesses is a pretty simple idea that could be beneficial to everyone.

Thank you, glad you enjoyed it!

Yes, my counselor told that to me and it really resonated with me. I gave the talk to spread awareness on TS, but more importantly to motivate others to push through everything. I feel that helping others is my way of paying back the community for helping me get through everything

Whats the worst tic you have/someone you know has?

Well for me, I'd say the worst one is my slapping one!

I have to slap certain objects or people, and sometimes it has to be a specific person's back, and even if they move i still need to hit them!

And keep in mind, that these aren't weak slaps;these are slaps with all my force and they do hurt and sometimes even leave bruises.

With the slapping tic, is it only with people you know or have you slapped strangers as well?

It's both, but not usually strangers.

It's happened a few times, just hoping it doesn't happen often.

Most of the time though it's with people I lnow...

Wtf man. You can't fucking slap people and blame it on turrets. You have to be full of bullshit to think you can go around bruising people because you have "turrets".. you ever think you're maybe just impulsive and allow yourself to misbehave because people will think it's turrets

Really? This is what I'm talking about people not understanding. I've been diagnosed by doctors at Stanford.... Pretty sure they know what they're talking about....

So in your head you get this impulse that tells you to go slap something and you have absolutely no ability to restrain yourself? What happens if you don't act out on an impulse? Your ego yells at you? Here is a super serious question.. have you ever done any psychedelics? If you seriously cannot control slapping people then wow I'm accepting of it but I've never heard/witnessed that. Cheers. Sorry if I offended

It's all good man, it's really not easy to understand and some people just have a harder time wrapping their heads around this than others.

Let's forget about the slap tic for a minute and I'll explain a bit more what a tic is.

Any TS tic, whether it's motor or verbal works the same exact way in terms of feeling. I have a few examples that might help you a little bit, hopefully one of them resonates with you.

Itching- I'm sure you know what it feels like to be itchy on your nose, hand etc. You can't control the itch itself can you? But you can't choose when you scratch it, but sometimes it just becomes so unbearable that you need to scratch it to relieve the itch.

For me and others with TS, our bodies tense up and feel very uncomfortable in those areas, and the only way we relieve this is that certain action.

Another example is this. Imagine you need to use the restroom. You can't control the natural urge of using the restroom, but you can control when you do it. However, the longer you wait, the worse it gets. And sometimes, it just gets so bad that you just can't hold it in anymore. Of course certain people can control it better than others, but eventually you're going to have to use the restroom.

Same thing for me, I can delay it of course, but only for so long. Eventually i'm going to have to release, and if i do it sooner rather than later it's better.

Last one i'll bring up is being hungry. Again, feeling the need to eat is not avoidable. However, it's best you eat right away or even before you feel hungry to avoid getting stressed tired dizzy etc.

Same thing again for me, it's better that I let everything out before it gets bad.

The point im trying to make, is that no matter what the tic is, it all feels the same. Whether it's slapping something, or saying the f*** word, or just rolling my eyes. It's all the same feeling wise. Sorry if i didn't explain that well enough, it can just be very confusing for people sometimes, and i totally understand that.

I can "control" it, but at the same time i can't.

Like i said i can delay it, but eventually it's going to have to happen.

I haven't tried psychedelics, i'm going to try some medicine for OCD to hopefully help calm down the tic, so i can maybe get some more control over it.

Cheers

Does anybody in your family have any similar disorders? Also, how often do you tic?

Well TS is genetic, but since symptoms usually fade off with age, I'm not sure who in my family has it, so as far as I know, no.

For me it just depends on the day and tics wax and wane. Certain tics come, and some periods of time it's bad and sometimes its not. Also, it's very environmental as well. If I'm feeling very stressed, excited, happy, sad, etc. tics can usually act up as well!

The eye tics and facial tics, pretty much every few seconds.

Slap tics, not something I can really pin point, just happens, sometimes more frequently than others.

It really just varies on how the day is going!

Sorry that I couldn't give you a clear answer, but it's just so hard to explain since I tic so much haha, it feels like im ticcing constantly lol

That answer was great. Reading about TS is so fascinating.

Oh yeah, in that training I talked about i learned so much about TS, pretty much most of what I know.

Before I did all this speaking stuff, it was more of a living thing and just dealing with it. Now i've actually become fascinated and been really living with it, if you know what i mean!

Many people love to talk to me about it, because they just find it so interesting since it's a very unique and misunderstood disorder.

Seeing it in action is also very amusing as well! Comical situations and awkward timing makes for wonderful jokes in the future!

If you think about a certain one, like slapping, does it make you have a higher urge to do it? Like in the same way that thinking about yawning makes people need to yawn?

Really learning a lot from this thread by the way, thanks for making it!

Yes, in fact with all tics.

For example I was at a conference with 150+ other kids and i was copying some tics and just ticcing more in general! I would definitely agree that there is some "yawn effect" going on here... or something similar to that at least!

How scary was it to talk in front of all those people? Also, does being in front of large crowds help with controlling your tics or is it pretty much the same?

Well for me, since I do a lot of speaking already it wasn't as bad as it could have been. I was still nervous as i have never given a speech, but i was experienced in public speaking. I was more afraid of the fact that thousands would watch me afterwards from all over the world!

For me, the urge of tics goes away when I'm super focused on something I love doing...

Being in populated areas doesn't help me, but the fact I love speaking reduced my tics greatly.

Also, when I golf, I don't tic as much during and right before my swing!

I know tim howard describes that his urge to tic goes away as the ball gets positioned closer to the goal. But when it's on the opposite side of the pitch, all of his urges come back to him!

Wow, that is fascinating. Thank you for responding, and good luck on your future!

Thanks for the question and your curiosity! Feel free to ask any other questions, I love talking about TS!

What a way to go EDIT: His username.

What do you mean?

Death by burritos :P Sorry, post has been updated.

oh, hahahahaa.

now i get it, well that would be very interesting haha to get killed by a swarm of.... burritos.... lol

How do you cope with these issues in order to control your outbursts and things like that?

Why is the verbal tic always a swear word?

First off, not all verbal tics are swear words. Only 10% of people with TS actually have copralalia(swear words or anything taboo)

I have other verbal tics as well, such as weird throat sounds, repeating words and others!

For controlling, I use the same technique for all. I try to let out as many as I can, but in times where I'm not comfortable doing so, I'll excuse myself. I have coordinated with teachers so I can just give them a sign, leave, and do my thing. For verbal tics, I also like to say them when it's passing period because it's very loud already, or sometimes I can whisper to myself in class.

Another very handy thing is, whether it's a swear tic or not, I can work it into conversations. So if i need to say f***, i can just say that in a sentence to relieve some of the sensation without making the situation awkward for everybody

What kind of medication or therapy do you go for to manage your mental disorders, if any?

I had an appointment with my neurologist @ stanford hospital the other day, and she recommended that I go to a psychiatrist to get some meds to tackle the ocd.

My slap tic sometimes includes slapping certain things, and hopefully the ocd can help calm down that tic.

I don't want to take meds for my tics, but if absolutely needed i might have too.

I have a therapist for my anxiety as well that helps me manage it. I also have a lot of support groups like clubs at school, and I talk to my counselor alot to help with bullying or just basic stress issues.

For my learning disabilities, I get extra time and a lot of help so I can still do well in school. I may take much longer do things than others, but I'm still a strong student. :) Only because of all the help and support i've been getting from my school and outside of that as well!

What do you think of Bob Saget?

Bob Saget(Tourettesguy I believe) and the south park episodes can be funny for people, and made me laugh as well. However, people need to understand that these comedies are not an accurate depiction of tourettes at all.

I actually have coprolalia, which is the swearing tics or just saying anything obscene. The only thing I need to say is f***, but I know others with it that have to say a lot more than me.

However, only 10% of people with TS actually have coprolalia, so while these comedy shows might be doing an exaggerated version of coprolalia, it is a poor depiction of TS.

With that being said, I personally find them funny, but I just hate how it influences others to think that TS is all swearing...

Hi! Thanks for the AMA. MY mother and sister both have extreme forms of TS. Both developed in puberty and got worse as the time went by (Mom is 47, Sis is 21). As someone who grew up around two people with extreme forms of TS, I know how difficult social life can be - how have you coped?

Hi! That must have been very interesting to grow up in a household like that because I know that it's not always easy to ignore all of the tics!

Anyway back to your question. For me, since tics really didn't get bad until eighth grade, I already developed social skills so my whole childhood wasnt scarred by bullying like other kids with TS.

However, the tough part was the first year and a half of highschool. At this point, my family was still not the most supportive, always making fun of me and blaming me whenever I tic. I never had a place to release, and I tried to hold it all in at school. I whisper everything, or go to the bathroom when it's really bad, but I tried as best as I could to hide all of my tics. I actually became an expert at it, and it stayed that way until the summer of freshman year. I was on the cross country team and we had morning practices every day. At this time, my tics were a lot worse and while I was running I was ticcing so much. For me, I always avoided talking about it. I would tell them I had TS, and that was that.

However, some people persisted to know more about it and I explained it to them. Everyday was just an extension of that conversation and in fact the first time I really talked to anyone with it.

Sophomore year I was still generally closed off, but I decided to join the TSA youth ambassador program and probably one of the best decisions in my life.

Not sure if you've heard of it, but I traveled to DC for a week and spent time there learning public speaking skills and about TS with other kids training as well. We did presentations to the senators and reps.p, but more importantly i got to meet kids and make friends with the same experiences as me. People actually understood us, it was so funny because we were all ticcing so much, and nobody cared.

Imagine a room of 150+ kids with TS. Crazy, but awesome!

Anyways, this helps my confidence and as I presented to schools spread awareness, I became more confident in myself. I talked to more and more people about it as well! It actually started to become a part of me.

This is my junior year, and probably one of the best years ever. I've been branching out so much, because im starting to really love who I am, instead of hating myself.

When I did the Tedtalk, it got me a lot of respect at school. It was an easy to way to show everyone i had TS, instead of waiting for a bad experience at my school. I got to talk to more people about it and it was so nice to know that kids and staff would respect you, regardless of your differences.

Man, this is long, but my main point would be that learning to accept myself was the key. Once I learned to love myself, it was a matter of time and juet a slow process of talking to others and being open minded.

Thanks for the question, I loved answering this one:)

awesome reply! my mom and sister are actually traveling to Canada or somewhere soon for a TS convention lol (I'm not invited :c) and they're part of some awesome FB groups and have made a lot of friends!

school

Ah, too bad you can't go!

But still, that's amazing!

I know there's also a conference in D.C. coming up soon as well!

If you say something inappropriate, how do you want me to react?

This one really just depends on my relationship with you, and just the general situation.

If im just hanging out with friends, and im close with them, most of the time we make a joke out of it. However, if we are in an argument they usually just ignore it.

If I don't know you very well- you just see me in public etc. Then I would do whatever seems polite to you. It's best to just ignore it, but personally I wouldn't have a problem if you approached me and talked about TS if you recognized it.

It's a tough thing, and there is really no definite answer because it's all situational. There are many reactions that my friends have to my tics thst i wouldn't let anyone else do.

Does that make sense? Im not entirely sure if I gave you a good enough answer or not!

Thanks for the question :)

Is it scary that you have Tourettes, Anxiety, OCD, and a LD? (sorry for sounding too personal you don't have to answer)

Don't be sorry!

Anyways, I wouldn't say that it's scary, but it can be very frustrating and a pain up the a** sometimes.

My LD is along the lines of difficulty with reading and retention/focus. This combined with tics, and anxiety is so bad.

I'll be reading everything 2/3x as long,and since I know it's taking me a long time I get more and more anxious, and it can be very frustrating on hw assignments but also the ACTs that im doingnow.

It's also just very tiring sometimes, and just hard to deal with sometimes!

But overall,it's a part of who I am and all of these disabilities are the reason that I've grown so much, and I believe they made me a better person, in my opinion.

You are a good public speaker and i really enjoyed your Tedx video. You held your tics back really well and i don't think i noticed a single one! Im glad to see your using it in a positive light too! What are your plans for the future?

Thank you!

See, the interesting thing about this is I did have a few tics there(Sniffling,head shaking a few times, eyes and facial twitches) but not much. I believe this is because I was so focused on something and the urge just wasn't present. This happens when I golf too! Whenever im swinging, the urge just isn't there for some reason.

I'm a junior in highschool and I hope to continue to spread awareness on TS by doing more panels at my school and more presentations at other schools. Im hoping to get into a good college and study either something in the sciences or engineering! I'm doing my standardized tests now and the whole college process, stressful!

And thanks again for the kind comments :)

Thats awesome and i wish you the best of luck! Im sure it can't be easy at times but you're going about it with the best attitude and intentions! In my neuroanatomy class we just learned about TS and the video someone used for their presentation was a lady who could not resist the tic to say "biscuit" every few words. She was good humored about it though

Yes! I watched that video so many times in preparation for mine!

Tics can be very funny hahaha!

My favorite part of that video was when she ticced "Aladdin Died!" then she followed up immediately " No he didn't Dont worry!"

haha, that had me laughing for a while lol

What misconceptions do some people have about Tourette's Syndrome?

Great question!

I'll name a few!

Swearing- many think everyone with TS has swear tics, but only 10% of diagnosed TS people actually have it

If you aren't ticcing you're good- So false, many people can be hiding it from you or holding it in! So don't assume that they're fine if they look like it!

That we are incapable compared to others- Not at all, we may be different, but we don't have any less abilities than others. We can still be whatever we want, and we can still be good at it! Not saying we are better, all im saying is that we aren't worse than people without TS, we are still functional and successful human beings!

That's just a few! Let me know if you want to know more!

I'd be interested in learning more.

Also, I remember seeing 'Front of The Class' a few years back, which is where I first heard about Tourette's Syndrome. Have you seen it?

Awesome!

Other misconceptions are that TS is continuous. What I mean by that, is people think that tics are always present. However, there are times that it's been super bad and times where it's not there at all!

Misconceptions also are that people think we mean it or we are lying about it. So many times people don't believe it's a thing, and don't see how it's possible. Some people just can't wrap their head around this....

No I haven't. What exactly is it about?

Front of the Class is a 2008 American drama film based on the book by Brad Cohen, Front of the Class: How Tourette Syndrome Made Me the Teacher I Never Had.

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Brad Cohen's story starts as a young boy whose mother helped doctors to realize that he had Tourette syndrome. With his mother's help and the support of his school principal, Brad eventually becomes an award-winning teacher.

Thanks to his mother never giving up, Brad is a success story and shares his success with everyone around him.

That honestly seems like a great story, and also a very common scenario! For me, if I didn't have friends that didn't support me, I wouldn't be doing any of the TS advocacy efforts that I am!

I was diagnosed with Tourette's when I was extremely young, I'd actually forgotten it and my mother told me, but she claims I've outgrown it. I sometimes get these inexplicable urges to do absolutely random things, like pop my ears, blink, or press a button on my phone. Is this Tourette's? Do I in fact still have it?

How old are you now?

So, TS i know doesn't ever go away. The symptoms can go away, but you'll always have TS. I know for me I had some tics at age 6, but went away until age 14!

Now, it depends, the blinking and popping ears are probably tics for sure. The button on phone is probably either TS or OCD or both combined! I have similar ones but i have to press certain keys on my keyboard.

You probably still have it, it's probably milder than before though.

Hi, OP. I have Tourette's also! How has it effected your schooling? And, I also have GAD! I really want to become a neurologist, got any tips for me?

Hi! Nice to meet another person with TS! :)

I definitely take a lot longer to do hw on bad tic days, like eye rolling tiring your eyes etc.

I do get extended time so that very nice! Also, it's made me closer with my teachers, so it's easier to get their attention when I'm struggling in class!

What grade are you in? I'd definitely recommend some summer programs in that area, and I would also take AP psych/Chen in HS!

I'm in 8th! I'm going to take AP psych if I can.

That's great! I have a friend in psych and he learned about TS and circuits etc. you'll have a great time! Good luck!

Thanks! :D

:)

Have you seen the south park episode where Cartman pretends to have Tourettes? If so would you say it portrays the condition accurately? (in the people not pretending to have it of course)

Yes I have!

No it isn't accurate at all.people do swear(I'm one of them) but only 10% of people with TS have that

It generalizes TS as a "swearing disease" but it's not! Totally other tics and such!

Also, it's pretty rare that tics will happen rapidly, but it does happen sometimes.

I don't know you, but you seem like a great person. What are some of your hobbies? Have you ever been made fun of because of your Tourette Syndrome?

Thank you! :)

I love golf. Playing and watching it!

I love to hang out with my friends. Sometimes I play some games here and there with friends as well.

Obvious one, but I love to do public speaking as well! I do speaking at my own schil and other schools to spread awareness on TS so less people are bullied.

I also am a part of project Eye to Eye(mentoring problem for people that have learning disabilities) I mentor middle school kids by doing art projects with them!' A friend and I will be leading this next year at our school.

That's all really!

Yes, teased a lot. A few mean posts on here and it happens almost daily. Some really mean it some do it on accident. But still, it's tough sometimes... :(

Well, I guess we can never really rely on the internet to be nice. Haters be hatin.

true true. I mean, I can't rely on everyone to be nice to be honest. There will always be somebody that doesn't like you, but that's fine. That's just how everything is to be honest, blunt i'm sorry but it really is true!

Since you have both tourettes and OCD, are tics like compulsions? I watched a documentary about tourettes once and it really seemed very similar to what I experience with OCD

Some are, and some aren't. What i mean by that is I have compulsions in some tics, that seem to be combined.

My slap tic for example, part of the tic is just the physical act of slapping. Now, this doesn't seem to bad because i can just hit the wall or something right? The issue is, something to do with OCD i think is that sometimes i need to hit a certain thing. And part of the feeling of a tic is hitting a certain thing. Not doing that action is the same as not doing a tic if that makes sense.

It's very similar but not the same because other tics are different. My head shaking one is just a physical tension in my neck and head area that doesn't go away until I shake my head.

Hope that clears everything up for you! let me know if it didn't

Hi, 18 year old here with tourettes as well. I only have motor ticks and they were severe when I was younger. Not many do, but I believe I have grown out of mine, and I only experience them when I'm stressed or nervous.!

I don't have any real question, but I just wanted to thank you for raising awareness and doing what you do!

I noticed when ever I was with my dog, it greatly soothed them. Do you have any sort of things that you do, or think of when you're having a tick though?

Hi!

That's great that you've grown out of them, but they are still pretty rough for me!

I enjoy spreading awareness, it's just so fun and I just can't stop doing it haha.

For me, playing golf is definitely a big plus. I tic a lot less because golf requires a lot of focus. Also, playing some music can get me distracted as well!

Also, sometimes talking with friends can work, but not always...

The best thing for me is too just go out to the course and hit some balls, good way to relax and release some energy!

Are you into any sports?

Yes! In highschool I played football, which my ticks had no control over, since I'm running it wouldn't matter if I twitched or yelled, Later I started skating which could be tricky, since a tick could seriously mess me up and cause me to lose balance. Working out and running also really helps since it takes your mind off things.

Edit: Not a traditional sport, but I also play competitive video games. (even though growing up I could hardly play, since video games were lead to believe to spike ticks, which I wouldn't notice) I think when you're doing something where you're completely focused or engaged you tick less (or maybe I just don't notice it happening haha) But either way when gaming, it's a lot less pressured since no one is staring at you or judging you, so a few ticks that come in, won't really matter,

Same for me. It always seems that when i'm focused and engaged in an activity, no matter what it is, my tics come out a lot less

pretty cool stuff!

I have mild tourettes syndrome but thankfully its severity has decreased from age and medication. Growing up was hard but now that I'm graduated most people wouldn't be able to tell aside from some minor motor tics. The worst part for me is when I'm playing a game and I know not to press a button because it would screw me up but sometimes I end up doing it anyways and then I get screwed up.

How have you gotten with age? Has any of your tics decreased in severity, increased, or stayed the same? I came to this thread without a question but now I do have one. I apologize if you've already answered it somewhere else.

I totally feel you on that game thing! Happens to me often lol.

Since im only 17, my tics have gotten a lot worse so far with age. I've developed a lot worse tics with F-bombs slapping jumping severe head shaking etc.

Also, when im driving sometimes I have to let go of the wheel very briefly... It's very challenging, but it's something we just deal with you know?

In general though, I'd say they've increased since I was diagnosed at age 14!

It's all good, I actually enjoy answering all of these questions! Very fun to do :)

This has happened to me soooo many times. Not sure if it's because of my ticks, but I also have a weird thing where I just feel the need to destroy something, it sounds violent, but it's little things. Like seeing a perfectly round egg, I really want to crush it.

This can be bad too because I was cooking and had my 3DS nearby, and I felt a strong need to place it on the hot burner. Sadly I did it haha, and it only slightly melt the plastic until I realized how much of an idiot I am.

Either way growing up, my ticks have subsided greatly. I really wish doctors would stop telling patients that "Very rarely do they get better with age" Because I feel I really grew out of them compared to when I was 7 and 8.

I have very similar ocd tendencies as you!

Also all the doctors I've seen said its get better usually as I grow older.....

Thanks for sharing your story. It's really relevant to me. I have been feeling a weird sensation my whole life and I'm curious to know your take on it. Its currently getting stronger which is why I'm thinking about it. Basically I feel like the air is touching my skin and I have to get it off. It started out when I was a child with using my hands to wipe the backs of each other and now it's like when I'm touching objects I feel like I want to touch it so completely no air gets in. Sometimes I touch things multiple times to get it right, especially if no one is watching. If people are watching I often just run my index finger over my thumb without letting air in. I have to touch objects a certain way and I find myself repeatedly touching things like my mouse wheel to make sure no air got in. If I do it wrong it's not impossible to avoid doing it again, it's just like an itch I'll keep thinking about. If I resist I feel frustration which can be relieved by touching things the way I want to. It has gotten so bad that I pick things up and put them down and pick them up again because I didn't get the feeling right. Do you have an opinion on what could be causing this? I realize you are not a pro but I am so curious about this and thought you might have some insights. You are awesome for sharing your experience! Many hugs to you.

Hey! Thank you for the kind words!

My best guess would be that you have some form of OCD.

Tourettes is vocal/motor tics and you're going to have multiple at a time. And most of the time, the tics are just random and not really linked to anything like your air thing.

Now, I believe it's OCD because ocd is essentially not being able to move on or thinking something bad will happen if you don't do that certain thing. Sometimes for me it's touching certain things, I get a weird feeling and I just have too..

Another is, whenever I see some piece of food on a plate get out of place. Or if things are very messy on someone's face I'll have to ask them to clean it or else I will not be ablw to eat. I also lick and clean my utensils clean after each bite so it's not dirty.

Those in my opinion Match your desire of having to prevent air.

Hope this helps, definitely ask a doctor if you really want to know for sure, but my best guess is that it's OCD!

Hey, thank you for your response. That makes a lot of sense. Thanks for sharing your story and good luck to you!!

No problem, it was my pleasure!

Thank you and good luck to you as well! :)

What are your plans for the future?
Have you ever felt discriminated at school?

I'm currently in the college process and doing tests etc. and I want to pursue a career in maybe science or engineering. I'm hoping to get into a good college and continue to work hard!

However, I plan to continue my speaking now in HS and keep presenting to schools to spread awareness and I really hope there will be some way I can spread awareness at my college as well, we shall see!

Oh totally, pretty much everyday.

I have a lot of friends and all, but sometimes I just feel that I'm the odd one out. Most of the time nobody is discriminating against me, but my anxiety kicks in and I feel that people are annoyed by me.

However, I've actually been discriminated against a few times, more in the form of bullying though. Friends or others will neve believe that I have TS, and some will just make jokes countless times after being told to stop and it makes me feel like they don't carw. Just the normal bullying stuff, but it really is tough to deal with sometimes

Thanks for your answer! Your TedX talk was really great and inspiring.

Greetings from Italy! :D

Thank you! I'm glad you enjoyed it!

Nice Italy :D, I'm USA :D

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Hi thanks for the question!

To be honest with you, the exact same things happens at my household and there isn't much you can really do.

When new tics come up and people react, I get very defensive.

I suggest a few things. If you see something new, ask if it's a new tic. If be totally okay with that, but I'm not sure about your siblings.

Also, it's always good to just have chats once in a while saying that you don't mean to offend them.

It really just depends on how you approach tics. If you ignore it most of the time then it will be a little harder to talk about.

Since you know them best, try to approach it as friendly and as nice as possible. I'm sorry I don't have a perfect solution, but there really isn't a perfect solution for this, it's just a sticky situation!

Thanks again, let me know if there's anything I can do too help!

Has any ever been a complete jerk to you about your Tourettes? What did you do?

Yes! Happens a lot

For the sake of privacy and such, I'll just say that a lot of messed up things were said etc. Anything you can imagine, probably happened!

For me, im a very lenient and understanding perso so i let it go for a while. However, after sometime of endless telling them to stop, I snapped and broke down. I had to talk to counselors at school and such to work it out, but it's all good now!

How do certain feelings affect your tics? E.g. when you're drunk/hungry/tired/stressed/relaxed/aroused/etc.

Can people tell when you're lying because of your tics?

When im feeling different than normal, I definitely seem to tic a lot more. Whether im feeling super excited or very sad, I will usually almost always feel the need to tic a lot more! Now, im not sure about the science behind this, I just know it happens lol.

Regarding the lying thing, I don't think so, but it has never come up before so im not entirely sure!

Do you feel/know when you are about to make a tic?

Yes I do! I like to think of it as scratching an itch, but instead of itches imagine "Tourettes itches" You feel weird and tight in that area, and ticcing removes that feeling. So, it's not exactly just uncontrollable spasms, but it's more of an uncontrollable feeling of it, and it just gets so bad we have to tic to relieve that!

Hope this helps, let me know if you need More clarification.

How old were you when you were diagnosed and does someone in your family have it as well?

Since TS is genetic im sure someone in my family has it, but im not sure who...

In most cases TS gets better as you get older, so anyone in my family that could have had it probably doesn't show symptoms anymore!

I was 14 when I was diagnosed,but I showed some signs of it at around age 6!

I was diagnosed by the time I was 8 and my dad has it. I’ve never really gotten to talk to anyone else about it before. Do you notice that your tics will get worse if your stressed or anxious or if your aware that someone is noticing them?

Hi! How old are you now if you don't mind me asking ?

and YES TOTALLY! All the time, if im studying for finals or im in a very intense point in golf, i tic a lot more! And when I see someone notice my tics and they start staring at me, it just gets worse and worse. So annoying sometimes haha

I’m 26. I’m glad im not the only one! Everyone looks at me weird when I tell them that they can become worse if agitated or what not. Do you ever notice your tics will change? Sometimes i’ll have a tic in my upper face and then after a while it wont be there anymore but i’ll have a tic in my lower jaw neck area.

YES! TOTALLY NORMAL for TS!

It's part of the disorder. Some times i'll have a tic for a long time, and others it'll only be there for as long as a few minutes.

That's just how it is, and sometimes I have tics that go away for a year and then come back!

:))))))

Did they do any sort of tests to determine it was TS and did they ever offer you medication?

Well for me, I went in there knowing i probably had it. So we kind of knew already....

Recently I was offered OCD medication, i just need to see my psychiatrist for it!

how about you?

Hey there! I'm also 17 and also living with tourettes! I also have OCD, it causes me to tick in intervals of even numbers (Usually fours). I hate when my TS comes up in conversation because I always get the classic "Oh col man do you have the swearing TS?" that really grinds my gears. Do you take medicine to help yours? I'm on a medicine now but am thinking about stopping it because it doesn't help at all. I'm looking for breathing techniques to help with it instead. And also, I can attest to the urge to type an outburst. Sometimes when I'm playing a computer game or something I get an extreme urge to press a button (usually middle mouse wheel).

EDIT: Forgot to mention this: I have no swearing tics, mostly noises and body movements. (squeaks, eye rolling, etc.) but they're pretty bad.

Hi! So cool to meet other people that have it! Especially since you're the samge age as me!

Wow, that's very interesting, I've never had to tic in intervals before!

I don't take medicine currently, but my neurologist recommended that I see a psychiatrist to get some medicine for my OCD, and hopefully reduce tics.

Are your meds for the OCD or for the tics?

I've tried breathing to just relax myself, but the best thing for me is to just do things to be honest. Whenever I have bad days it's crucial that I distract myself and it doesn't matter exactly what it is. Whether it's calling up some friends and hanging out, or just sitting at home watching T.V.!

My medicine is technically a heart medicine that's been proven to work for TS, although it isn't doing anything for me.

Oh I see!

How bad are the side effects?

I get really tired during school but that's all I can notice, I never really thought about the side effects till now

Oh ok, that's good. I know some medicines can be really bad on the side effects.

So the breathing techniques didn't work for you? Also, I'm going to add you, nice to find someone on here my age who also has TS.

ok great! I don't exactly know how adding works and all, i'm quite new to reddit lol.

Anyways, sometimes breathing works, sometimes it doesn't.

It can help temporarily, but it works better for calming my anxiety down, but generally doesn't help the tics much. However, every person with TS is different, something that works with you may not work for me, and vice-versa!

But yeah, it's cool to meet people that have a lot in common with you! :)

Do you happen to play any sports? I read an article stating that those with TS are considered to be better at sports because they have better motor skills, when I get home I'll have to find that article and link you to it.

I used to play a lot of sports,

Now i'm just a golfer.

I quit a lot of the sports I was really good at like soccer because I was just way too small...

Now, i'm much bigger, but a bit late for that.

Golf is tough for me, because it's a very mental game and I have a ton of mental disorders, but I really love it. It teaches me to manage my emotions, and it can be very helpful for people like us who struggle with this stuff.

Also, playing golf requires a lot of focus, so most of the time I don't have to tic as often when i'm on the golf course!

Do you play any sports?

Have you tried marijuana or THC to calm you down before? not necessarily that you have to smoke it but just for calming down your ticks perhaps. I don't really know much about the effects of marijuana on tourette patients but a suggestion for coping. But if you have then what was the aftermath on you in particular?

I've never tried this before although ive always wondered what It would do.

I know my friends have suggested it, but that was more to just get me to smoke haha.....

I know my neurologist has suggested and many others that have TS suggest Ned's targeting hyperactivity, anxiety etc. to calm us down, and hopefully reduce tics as well.

For me, my ocd is connected with my TS, so I'll be getting some medicine for OCD to hopefully calm down some of my worse tics.

well you should at least consider trying it. Not on the note of being recreational but just maybe ask your doctor to prescribe you some medical marijuana just to make it legitimate for your sake (if that's what you're worried about). I mean its no more harmful than having a beer if you're worried about the side effects after smoking it. The key with anything and everything is just moderation and if you're still not sure just observe your friends first if you haven't done so.

Yeah, it's something that's definitely worth thinking about. Best thing would be too ask my doctor see what they think and listen to them.

Doctor knows best! Haha

Awesome dude! I hope you update me with the results or something later too.

Will do!

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If this isn't a joke, then maybe, but you would have other tics as well.

Now if this is, im going to be clear that TS is more than just swearing. My swearing tics are only a small a part of my tics, so please do not assume that all TS is is swearing. It can be very offensive.