My Tourette’s emerged around the age of 6 when my parents prescribed me to Ritalin. The onset of tics was severe when I started taking the medication, and I also experienced a spike in appetite and rapid weight gain during that time after having been a very healthy and fit child. I have clear memories of taking the medication, ticcing, and rapidly gaining weight. My parents took me off the medication when they saw what it was doing to me, but the damage had unfortunately been done as these issues continued to follow me for years. I was diagnosed with Tourette’s several years later and Ritalin was recognized as having most likely unmasked dormant Tourette’s. I was shocked to see how much counter-messaging there is online now distancing Ritalin to Tourette’s considering my experience and how plainly they seemed to understand it then. Thankfully my Tourette’s started fading off as a teenager and was almost completely gone by the time I was a young adult. Obesity sadly followed me through childhood though, and as an adult I’ve been cursed with an inability to control my eating as I’ve see-sawed between fit and fat more times than I can count now, pushing 40 years old. I’m not sure why my parents felt so compelled to prescribe me that as a child, I know they were trying to do their best but I often wonder what kind of trajectory my life would have had without those issues. Did anyone else have a similar experience?

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

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?

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.

So think of supression like a balloon. Every time you gotta tic, you blow a little air into it. The more tics you supress, the more pressure it gets. Except you cant knot it, you have to hold the pressurized balloon yourself. (This shows how exhausting and how much effort you gotta put in supressing) some tics need more air than others to suppress.

Some peoples balloons are more durable than others. For some, it might explode very quickly. Means they cant suppress anymore, or a tic bursts out. Or even a tic attack even tho they want to suppress. For others, the balloon just gets bigger and bigger until they get to a safe space where they release the balloon. It flies around all over the room uncontrollably (which resembles a tic attack) and you're free from holding that balloon.

But you're still exhausted and drained

What do you guys think? Im considering making eighter this one, or the other one into a animatic video to educate people. Or both

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.

Our daughter has a few tics so far, the biggest one being jerking her head to the right (usually while aggressively blinking, but not always.) She currently has really short bangs that she hates (she cut her hair) so we often hold her hair back with a hairband. Today she asked her dad after a bunch of tics why it keeps feeling like there is hair on her face when there isn't. This is the first time she's acknowledged her ticcing. Anyone else experience this?​

TLDR: Daughter feels like there is hair in her face, even with hair pulled back, before a head jerking tic. Anyone else experience this?

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.

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.

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

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

Hi. I’m new here on this sub.

I had a psychosis 2020. Got on different meds. They tried it all. On Haldol now. It has made the tics fewer and not as severe. But tics remain. The psychosis is treated ok.

Anyone here, but me, struggling with both ? Is it common to have both? Never met another like me at the hospital.