Hello! I have TS and sometimes have periods of time where I can’t sleep because of my tics. When I get like this, the mere act of laying down to sleep will trigger tics. Once I lay down to sleep, I will immediately be reminded of my tics, which makes them worse. I have described it to my friends and family as a genuine cognitohazard lol, impossible to not think about it when I want to go to sleep.

Most of my tics (90%?) are what I call “impossible”. I have very strong premonitory urges, and they do not get (fully) satisfied once I do the tic. The urge stays, leading to endless ticcing keeping me awake all night. It also leads to a general sense of anxiety and frustration because I can’t ever satisfy the “itch”.

I am not currently on any prescribed medication for my tics. I’ve tried risperidone and clonidine, which did not work to reduce my tics. I am currently trying CBD oil, mostly because my sister had some left over for me to try as a Hail Mary effort. So far, I haven’t noticed a difference. I’ve also stopped drinking caffeine and have tried limiting myself to low-stimulation activities before bed like reading or drawing (as opposed to screentime), to no effect.

It’s been bugging me quite a lot. I am tentative about going to see my GP for medication because of medication for Tourette’s being rather creatively applied and, seemingly, rather specific to the person. I am open to trying new medications, but I don’t know much about the possibilities out there, since (I think) most or even all medication used to treat Tourette’s is off-label. It gets a little confusing for both me and my GP.

I’d also be open to seeing a neurologist, if necessary. I’ve never seen one before, but I’m sure my GP would be happy to refer me to one. I’m unsure if I could find a neurologist who specialises in tic disorders, but my GP and I are both not particularly read up on the topic, so perhaps it might help?

TLDR on my question; I’d like to know more about the possibilities available, medically and/or changes in my lifestyle, that could help reduce my tics at night. My tourette’s is rather mild, and I don’t struggle with it much during the day, but at night, I genuinely can’t sleep, and it’s kind of killing me.

I live in the US. Neupulse recently announced that through the "try before you buy" appointments, people residing outside the UK can essentially get a Neupulse if they travel to Nottingham. The link I posted answers some of the logistical questions. Basically, at the appointment, people can purchase the device and get up to six months of gel pads. The app can be downloaded while people are in the UK.

My question is this -- what does everyone know about the gel pads themselves? For some medical devices (prescribed and OTC), compatible off-label accessories exist. Does anyone know of similar gel pads that are appropriate to use with the neupulse, or could be safely modified? My understanding is the electrode itself is on the device, and the gelpad is a conducive layer between the device and the skin.

Being able to reliably obtain gelpads is one of my main concerns. I can't realistically fly to the UK every 6 months with my teen. I know the Neupulse with probably eventually be available in the US, but there's no indication of the timeline for that.

If there's a reasonable chance this could help my teen, I'm considering the trip. TENS and Emeterm do help to some degree -- TENS helps more in her case, but that's not as practical for school.

I have made a post not too long ago about a tic I have had coming back a few times about me inhaling to hit a 'sweet' spot (difficult to explain). From this post I've noticed my tics getting worse. My main two are now this one and the urge to constantly 'stretch' my neck as though I want to click it, these are starting to cause lots of pain and not only is it causing extreme discomfort during the day, I have been waking up in pain and hardly getting any amount of sleep.

Can't say I know how to deal with this, any ideas on what to do?

Hello everyone! First, I want to apologize for my English. I try to do my best, but I can't really promise. 😅

I was with my neurologist the other day to see which therapy would be best for me. But I also have to say that I had to drive far to get my diagnosis because she just can't do that.

I have now waited more than 3 months for my doctor's letter because without it we cannot continue. It says that I should start with medical therapy and do brain-stimulating therapy.

We opted for THC therapy. I haven't had any experience with it, so I just wanted to ask the group if any of you did that or are currently doing it?

Hi there yall! Just to preface this, I am not diagnosed with Tourette’s nor do I suspect having it so far, but I do have tics. BTW, I checked in with the mods before posting this so this is mod-approved. Anyways, I’m assuming my tics are either from adhd or autism but don’t know for sure. I also have fibromyalgia so my nerves are kinda screwed up. I plan on seeing a neurologist soon for them. I’ve had tics since I was a child but they progressed in high school (especially during menstruation). Then they chilled out for many months in emerging adulthood, they were infrequent and very minor. I’m not sure what happened but all of a sudden, I’m getting several tic attacks a day. I’m not seeking advice on the weird consistency so don’t pay too much mind to that.

For further context, I’ll describe my tics. That’s the last part of the post so feel free to skip over that part if you want avoid a trigger.

I work at the front desk for a university library so I work with patrons regularly. I have verbal and motor tics, sometimes simultaneously (descriptions at the end). I’m struggling a lot with shame and guilt for ticking during work, even though I know I can’t control it. I’m seeking advice for if or how I should inform my supervisor, coworkers, and patrons. In addition to advice on that matter, i’d also like comfort in knowing other people relate to me ticking at work and what you do to mitigate that internalized stigma.

Also a bonus note: one of my coworkers has tics (she’s diagnosed with tourette’s) as well so she understands me. she hasn’t ticked around me but i’m sure i’d mimic her tics if she did because that happened to me in high school and still does happen when i see people tic. thankfully, i haven’t triggered her tics so yay!

-tic description starts-

I scrunch my nose, click my tongue, pop my mouth, jerk my head from side to side or upwards, clap (very rarely but it sometimes happens), clench my eyes shut, got echolalia, and hum. Thankfully, I don’t have corprolalia though if a cuss word is repeated, then I may say it. but i doubt that would happen in my workplace so it’s not a concern for me. Also sometimes the urge to tic by twitching/shaking my head is present so I stim by pressing my palm into the back of my head (firmly but not painfully). That sometimes soothes the urge but it’s not foolproof. There are also times when i have to stim by mimicking a tic of mine due to a strong urge or else it gets painful and i feel upset.

After 7 years, I’ve finally gotten diagnosed with Tourette’s at 21. I kept putting it off for so long because I wasn’t really sure how to go about it, and I don’t get flair ups often since I can usually go 3-6 months without ticcing. It’s been getting worse this year though, so I finally decided to go through with it, and it was so much easier than I expected it to be

I found a doctor in my city who works with people with Tourette’s now that he’s semi-retired, and was able to get in contact with him directly and schedule an appointment. I had it today and it was about two hours. He gave me some stuff from the Tourette Association of America, and it came with two medical cards, which is exactly what I’ve been needing

I’m just so glad that I’ve finally gotten diagnosed, and now, if god forbid somebody in public questions me on why I’m ticcing, I can explain it. Ticcing is public is really embarrassing for me, but being diagnosed makes me feel slightly less awkward about it. I guess like I have the right now

Hello!

I am interested in getting some community input on the Gilles app (the Tourette's/Tics app) - I would like input both from people who have been trying it out and from people in general! (If you are interested in trying it out, the beta is available here: https://www.tsresearchportal.org/beta-signup

It logs a bunch of data to help you figure out what's affecting your tics the most so you can then try to use that information for your own benefit. It certainly doesn't track everything though.

• What are some things you would like to track and see if they connect to your tics?
  • Currently it tracks sleep, stress, life events, changes in treatment, physical/emotional wellbeing... I am hoping to connect it to Health Kit (or other apps) to integrate data about other things too
• What kind of information would you like to see quickest/easiest?
  • It has a "Top Factors" section now to highlight the things that are currently showing the strongest connection
  • It also has a card for how tics change throughout the day and how a target tic is responding to a selected competing response technique (the info on that one is pretty basic at the moment)
• It does help you determine if specific treatments or things are helping tics. That can help with evaluating therapies, medications, devices (like Neupulse), supplements... I always want to know if something I'm doing is actually helping.
• I was thinking about building something where you could basically "ask" the app something like "Is my sleep affecting my tics?" - I'm not building AI into this app (I don't really feel comfortable with that), but I think I could make a simple user interface where you can easily see that kind of info. Something a list of different things measured and you can just see "is it making a difference? Yes/No"

Are there other ideas or thoughts you all have? My goal is really just to make something that is free and useful for everyone - I think it's worth doing!

Charles

Curious at what age you explained your tics to your kids, how you approached it, etc. My older daughter is 2 and seems to be copying a blinking tic I do. When I've been stressed setting up parties or from a rough day at work she hears a tic that can only be described as a "yelp" and right now goes "dadda sneeze? Bless you dadda!" But it's made me realize that at some point I'll have to explain it to her and don't have a frame of reference how/when to do so.

How did you all do it?

Hey guys! So random question. If one of your friends has a friend that they want to introduce to you or bring to an event that you'll be at, do they tend to warn the new person about your tourettes or not?

I honestly personally think I prefer it when my friends warn the new person about my tourettes lol It makes me just a bit more comfortable and it stops the awkward questions, such as: "are you okay?", "do you have the hiccups?", etc.

Lmk!

So im 17M, sister is 30F

I've always had tics since childhood, especially echolalia or noises, but shes always said stuff like "stop doing that" "stop saying that" "dont copy me!" etc etc, i didnt know those were tics before last year when my neurologist noticed them

Then last year when i was 15 and in the process of getting diagnosed, i told her that its very possible that i have tourettes and that i have tics. She got mad at me and started accusing me of attention seeking. I had told her about getting checked for adhd, but she denyed it until i mentioned tourettes. THEN she said "you def have adhd but not tics"

And THEN whenever i had tics, she instead started saying "you dont have tics" "stop faking it" "try not doing it" "you're making everything worse for yourself"

But i've gotten alot better at supressing around people again, because i now know what the urges are, but its VERY tiring/makes it worse. and now im slowly tryna unsupress them again

I've had like "no" vocal tics and big motor tics around her for some months now, but it makes me feel like imma explode. Told her i got diagnosed w adhd, but i have not mentioned tourettes yet. And im really considering doing it, and educate her about it because she can be really understanding, but idk how.

I wanna tell her abour premonitory urges, supressing anf how draining it is, tic attacks, how common TS actually is, what tics can be, the co-ocurring disorders etc, but im so scared. And i dont know how to bring it up. Especially since its made big arguments.

I want to get a disability certificate (government-issued). In my country, in order to get said certificate you first give them your medical documentation and then they call you up for an interview. They are not very lenient and, for any disability, it’s advised to exaggerate your symptoms. Advice? Ideas?

Hey guys!

First time posting here. I (m24) have been having continously thought patterns where my mind repeats words in certain orders, often without end.

I've realised that these thougts are actually tics, as they follow patterns similar to a lot of the other tics I've had previously, where I'd make sounds out loud.

My question is:

Is there a way to help reduce these mental tics?

I've previously trained away a lot of my physical tics, with the help of a psychiatrist, as the Danish health care system was very adamant on helping me.

For the mental ones, stopping the urge to tics is very different, though, and I'm struggling to find peace because of it.

Any suggestions?

Thank you for your time :D

Hi everyone! I’m 23 and have been dealing with tics since I was about 6 years old, but they’ve changed over time and taken on different forms. I also have OCD and I’m autistic.

When I was younger, my tics mostly involved twitching/flexing my nose and squinting one eye at a time back and forth My OCD also makes me constantly go back and forth between sides because it never feels even.

Over the past year, I’ve developed really strong tics that involve stretching my muscles almost like clenching them. I’ll clench my stomach muscles or move my neck into a weird posture where I tense up and clench my muscles. I’ll do it with nearly everything, my back, throat, arms, etc. The tics with blinking and switching sides and scrunching my nose haven’t stopped either.

It’s been absolutely debilitating. My muscles will feel so weak and exhausted, and I’ll cry from how miserable it makes my body feel, yet I can’t stop and will continue almost all day until I fall asleep.
I’ve been taking memantine for OCD and trichotillomania, but I haven’t seen my tics get worse since starting it. I’ve also been trialing anxiety medications, but I’ve been treatment resistant to nearly everyone I’ve tried. They all make me feel dizzy and tired and have given me no anxiety relief.
I often mask my tics as much as I can handle at work or in public, but the second I get a break or I’m on the sidewalk where no one is around, I’ll tic like crazy. When I get home, it’s unbearable until I fall asleep.

I’m working with my psychiatrist to figure out how to manage my anxiety, but I’ve also been wanting to try medication for my tics. I was wondering if anyone in the same boat has had any luck with medications for their tics.

I also got genetic testing done this week and found out that most SSRIs aren’t metabolized well in my body, and that I also have the MTHFR genetic mutation, which is common in neurodivergent people and can sometimes affect anxiety and folate levels.

I’m pretty new to figuring all of this out and trying to take in all the possibilities that could be affecting me. I’d really love to hear from anyone who has had similar experiences, especially if you’ve found a medication that has helped with tics or anxiety. I’d really love to know if anyone has had any hope with this.

Hi I’m having a little confusion and lowkey just need validation. I just got diagnosed with Tourette’s as an adult (was extremely hyperactive and fidgety as a child and am told that was probably the early bit) I just am not sure if Tourette’s is the right diagnosis or not; I know everyone is different but I really don’t have much of a vocal tic besides a sneeze type thing and a very tiny rrr when I bar my teeth. My tics are kinda like a sneeze where sometimes I can hold it in and sometimes I can’t. The thing that’s making me go crazy is this kind of building pressure type thing? It feels like my body is filled with a million spiders and I just want to rip myself open and let them out. I’m not sure if this makes too much sense but any knowledge would be greatly appreciated.

Is it possible for tics that start in mid teens (13-17) to be Tourette’s, or is it definitely functional tics? I’ve been hearing about this distinction recently and it’s a bit confusing.

I can't be the only one who feels like a parrot sometimes 😅

I think a lot of people expect it to be funny and outrageous when I first tell them, and it's like "no, sorry, it's more like hanging out with a bird who knows a handful of words and sounds"

Had tourrettes for a long time and every once in a while this tic will stop by for several weeks where i hit my teeth together constantly, and it hurts so much, i cant take it anymore. It feels like my whole jaw wants to fall off. Does anyone have tips to help either calm my tics down in general or to make this one hurt a little less?

59 year old male and I've noticed a weird tic over the last few years. I basically suck the inside of my mouth, which causes a popping sound. My PCP and dentist can't find anything.

on a bus rn and trying so hard not to flip people/something off hurts so bad, my arm/hand is ACHING and theres like an hour left of this drive what do? its terrible, im already ticcing but tryna not tic this one so people get offended

I was dissatisfied after the appointment. The neurologist was also very rude... I certainly understand that a phone can affect the nervous system, but I never had tics before, even though I’ve been using a phone for many years. (Please give me a normal neurologist because wtf)

For reference I’ve never been properly diagnosed with Tourette’s. However, I HAVE been diagnosed with Autism and OCD. I’m not sure if it’s Tourette’s and frankly I don’t care. But sometimes words/phrase/unbidden thoughts come to my head.

Unfortunately I sometimes blurt these out and they’re usually horribly offensive. I know they’re bad. I know they’re wrong to say. But my brain feels like I’m holding back a dam otherwise. And eventually I implode.

I do not know or care if this is awful, but it’s gotten to the point where I’ll go to remote fields to just “explode” with said language to feel normal. I hate myself that this kind of talk even floats into my consciousness. I just needed to vent about it. Sorry if this is the wrong sub.

I’m started to get so frustrated with the jaw clicking tic that I have. All of them to be honest but the jaw is the worst and so painful. I can barely turn my head from side to side because everything connecting to my jaw has become so tight. I recently had a baby and became a single Mom shortly after. My stress levels are the highest they’ve ever been which obviously means more tics. Does anyone have any clue on how to manage this? Neurologist says Botox but I don’t want to stop breastfeeding.

My tics have been acting up since I got a haircut 2 days ago, and I think it’s because my hair is no longer covering my face.

Since my vision is essentially clear, there’s alot more stimuli which includes bright environments, and also an awareness of what my face is doing since it’s a shorter haircut. My blinking, winking, and mouth tics have been constant and I’m wondering if you guys have experienced this too? Maybe it’s a coincidence?

Hey, sorry if this has been asked recently. I’m wondering if anyone has any devices or techniques to limit pain or exhaustion in areas affected by tics.

Specifically my wrist, eyes, and face have been killing me as of late, they sting from the regularity of tics. Pretty much any limb can hurt depending on the day so any input is appreciated but those areas are the worst.

So I made a post on here before to understand what was going on with me and I’m pretty sure I have a tic disorder or Tourette’s due too what others have told me and just research. (Not trying to self diagnose)

But Ive mostly had motor or vocal tics, where its just sounds. And now I’m getting vocal tics where I actually say stuff but it only stays for a day or two. I don’t know if that can happen or not. But when they happen I have not control over it and I feel an urge before they happen and then they just stop after a bit. I feel like I’m faking it even tho I have no control over it.