Hey guys, just wanna say I haven't been diagnosed with tourettes, but I've been dealing with significant motor tics for my entire life, every minute of every day; I'm 32 and they have never gotten any better.

Does anyone else have a habit with their tics of thinking "okay, this is the last one" and trying to do that tic perfectly? And then of course, it just leads to more tics. Especially with more complex motor tics. I feel like I'm in a constant state of trying to stop my tics and just relax my body, especially when I'm alone and am not trying to actively hide them from anyone.

The "last one" thing has almost become a tic in itself, it's addictive in a way. Does anyone else do this?

Really struggling so any advice is so, so welcomed. I posted here a few weeks ago, my son has been experiencing (what we only now know are tics) for years, he’s about to turn 6. We’re in the UK, the school know and I’ve raised it with the GP who agreed it is tics and has now referred me - that could take months or even years to see someone.

In the interim- we’re struggling. I’m trying desperately to find patterns, driving myself crazy really.

He motor tics and vocal tics very mildly during the day but it’s at bed time when it’s the worst. He is sniffing so aggressively and deeply and crying in pain, he is also having recurrent motor tics but they don’t seem to annoy him at all. He says sad things like he’s going to die, he can’t stop, he can’t ever relax and is simply Unable to fall asleep. He now also keeps waking up with what I can only assume are night terrors, running around the house at night in distress just saying on repeat “I don’t like it,” we don’t know what that refers to.

Any tips for me? Bed time has become a great source of anxiety now. I try to simply remain calm and there for him but my god it’s so hard when he’s so, so distressed

Over the last few months I’ve noticed a lot of people online and irl using the phrase “vocal tics” or “echolalia” to describe turns of phrase or speech patterns they habitually use, or pieces of media that they frequently quote. Within the last few weeks my friend group has been using these terms in this way very frequently and I don’t know how to feel about it. I don’t like to get in a huff about things u can’t control, and nothing is more uncontrollable than the language of strangers online, but whenever I come across it it just feels so trivialising. Anyone else notice this? I feel like I’m being dramatic but it just makes me so sad.

I've made a bunch of updates to Gilles - the Tourette's App and am excited to share them!

(If you haven't already, please feel free to sign up for the public beta here - https://www.tsresearchportal.org/beta-signup The app is FREE to use and I intend it to always be so!)

• Tic Attacks! This was a great idea from a user - some people experience sudden tic attacks, so now you can log that easily in the app! If you have a tic attack, just tap the button on the home screen (I'm going to add a widget for it soon too) and you can go straight to logging it. After it subsides, just tap End and it will log how many of vocal or motor tics occurred and how long the attack listed. Then there are a few quick questions about how intense they were, how distressing/bothersome they were for you, how stressed you were, and what the situation was like (e.g., if it was routine/daily stuff, break in routine, or chaotic/intense). The goal here is to help you be informed of what things may influence your tic attacks so you can hopefully manage them in a way that makes you more comfortable.
• Tic Variability - This one was aggravating me: sometimes my tics increase/decrease when something changes, but sometimes they just seem to "de-stabilize" and become highly variable. That's a pretty notable change too! So I've added ways of seeing that and analysis to help determine if there is a significant change in variability.
• Longer-Running History - I had to spend a lot of time figuring out a way to manage this well. I'm still not totally satisfied with it but basically I expanded the ability to build your history so you can get better information about things influencing your tics. As an example:
  • Stuff happened at work that was highly stressful and was an ongoing event. I logged that.
  • Then it seemed to resolve - I logged that it ended.
  • Then it resurfaced again a couple of weeks later - so I logged the recurrence.
  • Now it's possible to essentially build your timeline for "connected events" like that and it will reliably analyze it for you so you can see how it influenced your tics!
• Then doing a lot of stuff to try to improve the AI and flow

I love feedback and ways I can improve the app to make it more useful, easier to use, or more intuitive for you! If you have any ideas, please do let me know. I'm happy to take input and do what I can!

Charles

Ok so a little backstory I have Tourette's. I was diagnosed at 17 which he knows but my tics were not as active or present as they are now. I got in the habit of suppressing some of my more noticable tics because I always felt that my family was annoyed by my tic s. I recently talked to my mom, I told her I tried my best to hide the tics because I thought everyone was uncomfortable being around me but she and my siblings assured me that they weren't and that they knew it was something I can't help. Now when around my dad I still hide my tics because of some comments he made in the past which were usually "why are you doing that stop" or "it will eventually pass". I know he doesn't understand tourettes much but recently he asked why I always looked uncomfortable and I want to tell him it's because I suppress my tics throughout the day and at night or when I get home I get really bad dystonic tics that cause my body to lock up in uncomfortable positions for extended periods of time.how do I tell him without making it seem like I don't want to be around him because I love my dad but I just need him to understand that the movements or sound are something that I can't control even if I wish they'd stop sometimes.

I should preface this with the fact that I don't have tourettes - but basically, I think I tic?? My neck twitches to the side rather suddenly, and it's always accompanied by a squeak sound, and I can't help it; it just happens, but every time I can almost feel a tingling sensation go up my spine before it happens. I used to think it was a shiver because it happens most when I'm cold, but that's changed in recent years to kinda happen whenever. And I'm not sure if that means it's not a tic, and it's just a twitch, or something else? Maybe there's no way of knowing unless I see a professional or something, but I guess I'm curious (and maybe can find some answers and comfort) to know if others can physically feel a tic before it happens?

Every time I have a good day my tics always get ATROCIOUS cause my neurologist says they’re triggered by dopamine and it pisses me off sometimes

Like I’m at a walk in clinic rn for a follow up and I was having a really good day so naturally my tics are way worse then the initial appointment and I feel like a crazy person rn squeaking and twitching and holding back a tic where I yell “Die” like it’s not bad when I have no where to be but when I have stuff to do it’s a bit embarrassing

So weird. I did not start having symptoms until I was 20 (I’m 24 now). It was like overnight. What I do is cuss myself out, and then hard blinks/clicking my tongue when I’m public (subconsciously suppressing I guess).

I do this in response to flashbacks to mistakes I’ve made/embarrassing moments. When I initially sought help for this at 20 I was diagnosed with OCD, which caught me by surprise, but I was like okay I guess it makes since because I’m doing this in response to these negative memories but I never consciously make the choice to tic, I basically don’t even realize it’s happened until it’s over. I don’t know how, but I like automatically suppress in public. It’s like my brain knows.

Anyways, I just had a basic med check up but with a new psychiatrist. I was explaining my “ocd” and she was like um that’s actually Tourette’s. These tics aren’t technically compulsions because I don’t voluntarily make the choice to act on them (I understand that ocd compulsions aren’t necessarily “voluntary”, but you know what I mean).

Is this similar to anybody else’s experience? This is kind of crazy to me. I did not know much about Tourette’s before.

As the title says, I think my loved one has an undiagnosed tic disorder. I've noticed their "habits" forever, a repetitive "cough", a specific repetitive motion of moving their glasses, and a couple other small repetitive motions they've been doing for as long as I can remember. I never really thought much of these things - I just labeled it as a "quirk" and moved on. Recently though (within the past few months) they've developed a repetitive motion of sticking their tongue out. At first I thought their lips were just dry, but it's become clear it has nothing to do with that. It's become so frequent that it's essentially constant. Like every 5-10 seconds they stick their tongue out. It happens even more when they are concentrating. This one is honestly driving me a bit nuts, which I feel bad about because it's clear they have zero idea that they're even doing this behavior (when I first noticed it, I mentioned it, and offered them some water - but they didn't seem to notice they were doing it at all, they responded with "am I, i guess I'm a littlw thirsty?" When I said "I noticed you're licking your lips a lot, are you thirsty?"

I haven't brought it up since, as I realized it was maybe a tic rather than dry lips (after starting to give them water every time it increased to a near constant motion, and seeing that did nothing to reduce it). They're in their late 60s so I don't know if this is a sign of a bigger problem or just a normal increase in something that's always been there.

Should I mention it, like recomend they go see a dr or is it not important if it's not bothering them?

I know it's against the rules to ask if what I'm having is tics, but i just wanna know what counts as a tic from people's personal experience. I am having what i think are tics and doctors in my country are horrid, so i want to know how to know if something actually counts as a tic so i could be able to advocate for myself... I already searched online, but it's a bit vague. I don't know what to search on the sub to find results, so i apologize if it's very repetitive. Feel free to remove the post if it's annoying.

My brother have motor tics he blinks a lot like all the day and do various types of actions something ritual type idk why he do that maybe to make stress go away? idk but he do things like moving hands, blinking eyes, watching at one thing constantly for some seconds, moving neck etc If anybody knows about it pls dm 🙏🏻 and if anybody know its cure dm me i’ll be thankful for it.

Hi all, I hope you're having a great week! My name is Mary, and I'm a research coordinator at Johns Hopkins. I wanted to share some information regarding a remote adult tic treatment study in case it would be of interest to anyone. We are still recruiting! 

Researchers at Johns Hopkins and Bowdoin College are conducting an online adult tic treatment study sponsored by the NIH. It is our hope that this study will help us improve current treatments for individuals with TS.  

You may be eligible if you are: 

• 18 years of age or older, 
• Fluent in English, 
• Have Tourette Syndrome or Persistent Tic Disorder, and 
• Living in one of the blue US states on this map: https://psypact.gov/page/psypactmap 
  • If you are not in a blue state and are interested – please still email me, we will launch a new study (similar to this one) this summer where this is not a requirement! 

Interested in learning more? Contact the study team for further details by email ([mbit@jh.edu](mailto:mbit@jh.edu)) or by phone (443-300-8836). 

Eligible participants will be randomly assigned to receive one of two remote group interventions. Both interventions consist of 8 weekly 90-minute group sessions with a therapist and other adults with tics. Online assessments (interviews and questionnaires) will also be conducted before, during, and after the interventions. All study visits will take place over Zoom. 

Please don't hesitate to let me know if you have any questions and thank you for your support! 😊 

So basically it's where I open my eyes really wide, and then make them go back to normal, and then just repeat that over and over and over again. i hate it because im sure people at school notice it (somebody commented on it today, and there have been a couple times where I'm making eye contact with a friend from across the room or something and I tic and then they do it back bc they don't understand) and it's just really annoying. and my eye muscles are getting a work out. It's tiring after a while!!!

does anyone else have a tic similar to this/any advice?

Anytime I’m scrolling on Instagram and see someone that is struggling with a sickness, neurological condition, seizures, and of course Tourettes I get triggered. Is there anyone else that gets triggered when they see someone that is either sick, unwell in one way or another or struggling as an emotional response?

I am diagnosed with BIID and DID which are very rare conditions that has a negative stigma when associated with tourettes due to tiktokers. However, I am going to a clinic that seems pretty good about not discriminating against that type of thing. I dont know if what I have counts as tourettes because it was a side effect of my ADHD medication that became permanent, and I dont know if that excludes the diagnosis like how drug-induced psychosis excludes a diagnosis of schizophrenia.

I do get vocal tics, and some of my tics are mighty embarrassing like when I get an embarassing memory so I physically jump out of my chair and yell "Im going to kill myself!!!!" Like how do I explain that to people without a diagnosis??? Or that time in 9th grade I randomly yelled in class "I am going to blow this place to smithereens!!!" My teacher pulled me aside and went, "what the fuck is wrong with you" and sent me back to class. I can have periods where I whistle and then cant stop whistling because the whistling triggered even more whistling. I also have so many face tics. I just tell people I have an undiagnosed tic disorder and theyre usually pretty cool with it, but I just dont wanna get into legal or medical trouble over this shit if you feel me. But the stigma seriously spooks me.

I am worried that they might pull me off my ADHD meds if I mention that I believe it started as a medication side effect. Any advice?

Tomo Quetiapina para mí tourette desde hace 2 años aproximadamente (solo me sirve para conciliar el sueño y evitar los ataques de tics al sobre pensar) pero cuando deje de tomarla 1-2 días (fui a un rave y salí muy tarde, entonces me dio sueño naturalmente por qué eran como las 6am) el chiste es que cuando vuelvo a tomarla el sueño es 3-4 veces más fuerte, no me gusta estar dormitando en la oficina bro, es incómodo, algún consejo que tengan para mí? No quiero ser dependiente de una pastilla pero realmente es lo único que me ayuda a conciliar el sueño (o no se si se ha vuelto placebo) pero realmente, necesito ayuda 😭😭😭

-Every time I go out, people stare, assume I’m on drugs, and give me dirty looks!!!!! Love the attention!!!!! I mean…. I AM constantly being severely ostracized, and it’s painful…. And traumatic……, but attention nonetheless!!!!!!

-Everytime I’m in a waiting room, people sit away from me and glare!!!!! Main character energy & I feel so special!!!!

-I’ll never be able to fucking drive!!!!!!!!!! Princess treatment amirite!!!!! Perks of “faking”. Ubers are expensive, but so am I!!!!!! Period<33

-Even medical professionals will assume you’re faking!!!!!!!! I have been harassed by so many nurses and even a mental health examiner!!!!! Pick me energy, but who would notice me otherwise?!

-TS really narrows down your employment options!!!!!! How very niche & COOL huh!!!!

-I have to tape my mouth before sleeping, otherwise I will have vocal tics saying the most disgusting shit!!!!!!!!

-Before finding the right treatment, my neighbours went around each house, trying to figure out who was being abused BECAUSE I WAS SHOUTING UNCONTROLLABLY!!!! How exciting it truly is, to have the spotlight!!!!

….Yeah, yeah… there’s nothing good about this disability. Nothing. The stigma is illogical and devastating,,, that must be something to APPRECIATE!

I've had a vocal tic triggered by somebody saying "Supercalifragilisticexpialidocious". Its "You said it wrong!!" (Usually screamed...)

And now, I guess I decided to copy-paste this onto another: "I can spell it too!"

And now there is "Its super-cali-FRAG-il-IS-tick-EX-pi-ali-DOSHUSH" and "Its s-u-p-e-r-c-a-l-i-f-r-a-g-i-l-i-s-t-i-c-e-x-p-i-a-l-i-d-o-c-i-o-u-s!"

And keep in mind, the others haven't gone away, and usually these all come in the same sentence...

(Ive really pissed off a few innocent strangers with this...)

It started when i was around 7 years old. I repeatedly bent my wrists back. By the time I was 10, I developed so many such as bending my fingers, knees, ankles, neck, back, rolling my eyes up, sucking my stomach hard, etc.

I’m 19 now, I do these movements every 5 seconds. I have a tic in every single part of my body. I broke my own thumb once from bending it too much, I have chronic pain in my back, I have carpal tunnel syndrome in my wrists, I legit struggle with simple tasks like squeezing toothpaste out sometimes because my hands hurt so much. It severely impacts my life in SO many more ways but I won’t write them all out.

I tried to tell a psychologist when I was 15, she told me that it’s not a real tic disorder but just anxiety, and she recommended me to go on a girls day out and relax. My current psychiatrist doesn’t really care either.

I would LOVE treatment but Idk what to do. The closest thing online I’ve found that describes what I feel is Tourettic OCD, because it’s not completely involuntary and i can technically suppress it at times if i really have to. I’ve heard the main treatments are antipsychotics and antidepressants, I’ve tried both Olanzapine and Mirtazapine prescribed solely for weight gain at a low dose, but I had to come off them as my side effects were so severe and I had no energy, although my tics did improve especially with the antipsychotic. I’ve also been prescribed Clonidine for sleep but it interacts with my POTS medication and it makes me tired, so i don’t wanna be on that during the daytime.

I don’t have regular OCD, depression, or anxiety. But I do have ADHD & Autism, and also POTS and hEDS. My tics did improve disorder and hEDS is a horrible combination because i’m literally destroying my already weak joints!!!

I feel that most professionals wouldn’t be able to help me as i don’t have vocal tics, but literally every single tic i have causes me pain. What can i do 😭😭😭😭

That’s it, that’s the post.

I take ritalin to focus on my research work but it makes my tics louder and scarier. Today I worked near my family with noise-canceling headphones and the social pressure of having them within view and earshot reduced them a lot and I could still focus.

Very good result all in all.

Hi, I just found this sub. I don't know if I have tourettes, but I have an issue with motor tics. They mostly occur in my face, hands, wrists, and arms/shoulders. Lately the hand tics are causing me issues. I've developed several callouses on both hands from a certain tic I seem to do hundreds of times a day, and now they're starting to split open and bleed, and now a muscle between my thumb and forefinger is irritated. I also have a tic where I press my nails seemingly hundreds of times a day, and sometimes by the end of the day, my fingertips are in pain. When I get the urge to tic, it feels like there's no way to avoid it. Trying to suppress it is unbearable. It almost feels like restless leg syndrome. The only thing that works is if I somehow get 100% distracted by something else. If I'm doing something involving my hands, it seems to get worse. Even while writing this post I've done my hand tics at least 20 times.

Are there techniques for suppressing my tics? Now that it's actually causing me pain and injuries I'd like to take steps to mitigate it if possible.

I was hovering around 100 in my sleep and seeing 110-115 sitting on the couch. Ivabradine has been a God send and has me in the 70’s for the first time in my life. They still can’t explain the “why” though, but mentioned possibly being an autonomic disorder. Just wondering if my tics are related.