r/Tourettes

I’m working on an idea for a small app that could help people with Tourette’s (especially vocal tics / coprolalia) in everyday situations. I don’t want to build something useless, so I’d really like to understand real experiences first.

If you’re comfortable sharing, I’d really appreciate your thoughts:

1. What are the hardest situations for you when it comes to vocal tics? (school, work, public places, etc.)

2. Do you feel any warning before a tic? If yes, how much time do you usually have?

3. What currently helps even a little?

4. What have you tried that didn’t work at all?

5. Would an app even be useful for you? If yes, what should it actually do to be worth using?

Obviously I’m not trying to “fix” Tourette’s. just exploring if there’s a way to support people better in daily life. So if you actually find the app demanded, please let me know!

I (16F) was diagnosed with an undefined tic disorder almost a year ago. I’ve had tics (both motor and vocal) since I was 13. The neurologist said it was obvious i had tics, but wanted me to come back in a year to see if i had TS or a different tic disorder. My tics got much more manageable once i was put on medication, narrowing them down to throat clearing and neck twitching, and occasionally eye widening. They were very unnoticeable,

especially since at school i don’t really talk to anyone. however, here recently, my tics have gotten worse. I do full head jerks and clapping, and sometimes say “shut up bitch,” “you talking to me? who, me?” and “chicken”. people at school have started mocking me and ask if i have tourettes, but since i haven’t been properly diagnosed, i feel like it would be disrespectful to say yes. when i say i have tics, they assume it’s the same thing as tourettes, and since i can’t clarify, i’m not sure how to move forward.

Hello everyone. I am in my 30s and was diagnosed with Tourettes as a kid and I have both physical and vocal tics.

I cannot tic and breathe at the same time; every time a physical tic is happening to me, my breathing pauses for the duration of the tic. I've been recently wondering if this is normal, so I thought I'd ask here if other people with TS can't tic and breathe together.

Most of the time this issue isn't a big deal as my tics usually only last like a second or two, but I get very panicky when having a violent tic attack where I'm having tics with pretty much no gap between them so I cannot get enough air. Does anybody else here experience anything like this?

What’s one situation where your tics cause the most difficulty (even if you already know your triggers)?

I'm in my late 20s. My peers are in their 20s and 30s. When I explain I have Tourette's, most of them know about it, or even know someone with it. Or they've seen Bayl3n Dupree, Sweet Anita, etc. online. It's pretty chill. I'm curious to hear the experiences of people with TS who are 55+. Are your peers understanding? Is there stigma? What is it like to be "senior" with TS?

(16 m) I've always supressed alot around ppl, especially adults due to trauma, but its starting to get really exhausting- its never been this bad as now. I most often can do it, but only if i really lock in and if im hyperaware of my whole body. But its so painful, and even worse when im stressing about it. I also get horrible headaches, cold flashes, and tic attacks later on. In general also just feel an inner irritation. I just wish i could stop thinking about my tics so much, so they arent that annoying, and that i can feel more comfortable around people.

If i do feel comfortable around people and not judged, i dont think about my tics at all. I still tic alot, but not as an endless feeling of exploding any second like when i supress. I feel so much better and confident when i can just tic whenever i need to, and not think or stress about it. Many people at the places i hang on know i have tourettes and understand it, so there really isnt any reason to supress this much.

But i still feel so horrible and ashamed, and fear if im faking or overthinking things to the point it becomes a reality. Im scared if people will think im weird if i suddenly start ticcing alot. I get lots of unsupressable motor tics when i focus on not blurting out stuff- and thats very often. So i look weird anyways 😭

Really wish i could just be myself and be free, and not let my tics control the entire me. (Did that rhyme?) anyways i really need tips, its really distressing me nowadays

I don't have tourettes but I do have tics, and I also am currently having to have loads of different medical tests (for a different reason). But I'm scared if I need an mri as I can't suppress my tics, and they get even worse when I'm lying down, but with an mri you have to be completely still so I'm not quite sure what to do if they say I need one

Just that. Is there anyone even working on a cure for this? Trying to figure out what causes it? Every half a year or so I go looking up on Google anything about it. Yet there is basically no info about anyone working on something. Am I just gonna have to deal with this forever? Already had to for the past 14 years.

almost a year ago my sister and her daughter stayed at my place for like a week or two, which they do every year, and back then my tics started showing for the first time. i wasnt diagnosed yet but i just knew it was tourettes (and it actually is). but anyway, we were having dinner and i was ticking a lot and my niece (she was 7 years old at the time) started laughing at me. not cause she hated me or something, but because she didn’t realize i had a disability. mind you her mom is a pediatrician. i didnt think about this before, but now im asking you guys, should a kid this age be aware of people like me? was my sister (who is my favorite person in the world and im not mad at her or my niece for anything) wrong for not teaching her 7 year old how to act with people who are disabled, and im not talking about people with obvious conditions like wheelchair users, but like people whose disability can be unknown/not that obvious not only to children, but even adults?

i have been dealing with people at school regarding my tourettes. they mock my tics a lot, specifically neck jerking, the middle finger and clapping. it’s really embarrassing for me, and i don’t think they have bad intentions exactly, i think they just find it funny, but it’s very hurtful, especially since they tend to get worse when brought attention to.

what do i do? teachers have “gotten onto” them (literally just saying “that’s rude, stop that” and moving on) and these people are not stopping. i have a literal DISABILITY?? it’s not funny??? idk what to do anymore. i’ve always been very sensitive and it’s not helping.

I had my first noticeable verbal tic during an interaction with my waitress yesterday. I was trying to compliment them which is something I’m uncomfortable with. I immediately followed it with a verbal tic and it made the rest of the interaction super awkward and uncomfortable.

Do you guys just let it be awkward or disclose that you have Tourette’s in situations like this?

has anyone noticed that when they are looking into their tourette's almost all the information is about how children are affected by it? it irritates me because i wasn't even diagnosed until the start of highschool, so that information didn't apply to me anymore. when i want facts about tourette's i can share with people to educate them, the main collectives of information i find are about "how tourette's affects your students' learning" or advice for development/raising kids with it. like they just care less once we've practiced holding in our tics enough or some grow out of it?

One week ago i started getting these little tics at first it was nothing but through the week they’ve gotten more intense, they happen a lot sometimes it’s like 10 seconds between tics and 30 minutes is kinda the maximum time i go without having a tic. when im in public the tics are mostly just head jerks, making a pop or click noise, doing the middle finger and punching one side of my chest. in public i try to suppress it the best i can because im a very shy person but when i’m alone it’s a lot more frequent and intense. in public i only punch myself in the chest one time with my tic if i can’t control it but when im alone it’s multiple hits. i also have vocal tics a few times a day, like saying swear words, and i don’t normally swear when i normally talk, i never have really. it was really sudden for me to get these because it happened overnight. i’m 19 and ive never really had tics before, ive had that building feeling that you get before you tic for a while but it felt like i didn’t know what to do with that feeling yet and id just have to sit with that uncomfortable, sick feeling of not having anywhere to get rid of it so id just shake my hands but the feeling would still stay, and i just told myself it was stimming even though i know what it feels like to stim and i know its not like that.

i have convinced myself many times that im faking it and ive tried sitting there and not have any tics but

i cant keep it in, despite all this i still manage to convince myself im faking it even though i can’t help it. i get this rising feeling that feels like im about to cough and it feels uncomfortable before it comes out. i feel anxious and sick if i hold it in, it feels like trying to hold in tears after someone hurts you.

ive searched up a bunch of stuff to see why this is happening but i cant find any answers. ive been on all my medications for over 6 months and i haven’t tried anything new, i haven’t been sick for a while, my sleeps been fine, i haven’t hit my head recently and i haven’t been particularly stressed or anxious either. i assume this will all eventually go away because it just doesn’t seem like a thing i could just permanently develop at my age. ive booked in a doctors appointment but id still like to get the opinion of people who have more experience with it like the people on this subreddit.

thank you if you respond and thanks for taking time to read this :)

Hello, i do not have any tics/tourretes diagnosis but i want to ask about some stuff. I hope i wont sound disrespectful in any way.

I have diagnosed ADHD and BPD so i had some random tics especially when overwhelmed/other sensory triggers. About two months ago i was prescribed medication (bupropion 150mg, lamotrigin 50mg, derin 25mg) - all of these have tics as side effects but its such a low dosage that it shouldnt be that serious.

But about a month ago i started randomly stuttering when talking - repeating first syllables or whole short words. And now i started having motor and vocal tics.

I dont know if it could be triggered by the medication or something else but i also feel like im making it up? I sometimes have hours without any tics but then either i remember something about them or i hear any mention of tics or someone has a tic and suddenly it triggers me. I also get triggered by random intrusive thoughts.

Could it be some kind of disorder or am i just making it up in my head?

Thanks for any answers and experiences:)

During my first year at college, I said in the middle of a hallway, god I could just fucking kill my classmates and couldn't remember it. Turns out I, Tourettes. However at the age of 18 of which I was, I did not know that. Nor did the chief of police when he arrested me for potentially planning a school shooting. However during my interrogation of which I had no socks, no attorney present, and on a day in which I had slept for 2 hours; I was asked to explain myself.

I said in my full mental majesty to the chief of police himself, while under arrest. "Look, I'm just fucking a total fucking idiot". He looked around at his fellow officers, and let me go. Never heard about it again.

29 YO male.

Hi guys not sure if the right thread, my whole life I’ve had tics, nothing severe just eyes twitching and sniffing , back jerking and recently enough kind of a throat clearing sound. Grunting if you will. But I’ve always been terrified of developing complex Tourette’s like shouting etc. I’ve also suffered with ocd and anxiety my whole life. Usually spend months at a time fixated on one thing so this is most likely one of those. So right now I’m completely fixated on this and it’s giving me urges. Morning noon and night it’s in my head it’s draining. It’s been 10 weeks and I haven’t actually shouted no matter how intense it feels. Has anyone else had this and any ideas? Again sorry if wrong thread!

Since around sixth or seventh grade (I had some before that but that's when it started to become daily) I feel this tingling in my back and I have to shiver/shake my body to make it go away, it feels the same way you feel before you sneeze, sometimes I let out a small noise somewhere between a groan and a shout. I can hold it in but it feels so uncomfortable. it won't go away till I shiver. (TBF I haven't REALLY tested that because after maybe 15 seconds and it hasn't gone away I shake my body* It mainly happens when I stand up. But I also feel like it's placebo because it happens even more when I think about it. If someone with a real diagnosis can tell me what it feels like that would be great!

Why am I embarassed? Why do we as humans lack common sense? If someone is moving a certain way, why is that something to point out? I have had different forms of motor tics all my life, some less noticeable than others. People have called me out or stared at me. I saw a neurologist and he said Tourette’s and chronic motor tics are the same thing, prescribed intunitiv but I’m scared to take it. I want to try natural approaches first. Saw a post about L-theanine/magnesium… has anyone seen positive and lasting results? 28F, scared to leave my home sometimes because of embarrassment. If you’re struggling, giving you a big hug, it’s not easy!!! Why oh why do things like this exist.

When I was a toddler I had fever induced seizure… no doctor has ever said that was the link, but could it have been?

Hello! I was just curious if anyone else's tics go away (maybe not fully, but definitely get less active) when they listen to music with headphones on.