I have a little brother who mildly tics a lot. I would run out of space here if I went through all the different ones he’s had. It’s treated as normal because a lot of people on my dad’s side do it to varying degrees.

I sent my mom a youtube short on billie eilish and her tourette’s to my mother to test the waters, because I’m a bit concerned, and she immediately said my little brother had it. Now, she’s no doctor and she doesn’t have the authority to diagnose, but in our conversation afterwards it became clear she’s long accepted this as a “quirk” my little brother (and other people in the family) has and she knows that it is something that not all people understand, even when she didn’t have a name for it yet.

My question is: if we already treat him well enough about his tics, since we just accept it, and he doesn’t have any harmful tics, is it worth going to a doctor about it? I don’t know much about tourette’s, so I don’t know if it has implications that we should consider.

Thank you to whomever replies!

Hi! I'm noticing my eyes often feel quite tired during the day, even when I'm well rested.

I think it's because of tics where I blink a lot or squeeze my eyes. I wear glasses but don't have dry eyes or other eye problems.

I'm wondering if some of you have any ideas on how I could make my eyes feel less tired? Eyedrops aren't a long term solution I suppose and I don't know what else would be possibilities... Thanks!

I'm very curious about this!

I personally prefer people to casually recognize the tic attack in a way where they make sure I'm okay and then carry on as if it's not happening. Even if I can't respond to what they're saying completely or at all, it's nice if people continue to speak to me/around me as if I'm not losing it lol

My tic disorder has come back after years of treatment, and I don't know what to do

I've been struggling with a tic disorder for almost ten years. It started when I was around six or seven years old, and things got much better after I received treatment（traditional chinese medicine）.

But about a week ago, my tics suddenly came back. I don't know why? I've been blinking really hard and frequently, sometimes as often as twice a second when I don't try to suppress it. And some loud, odd sound come out from my throat.Also include muscle tic.

It's getting to the point where it's interfering with my daily life and making it difficult to concentrate on work.

I honestly don't know what to do. I thought I was getting better, and having the tics come back so suddenly is really frustrating. I feel like I'm losing control of something I thought I'd gotten under control.

Has anyone else experienced something similar? If your tics came back after a long period of improvement, how did you deal with it? Did you go back to treatment, or did you find other ways to manage them?

I'd really appreciate hearing about your experiences or any advice you might have.

Over the last few months, I’ve started experiencing vocal tics. I don’t have a diagnosis yet, but I have an appointment at the hospital’s neurology department. I’m very often influenced by things I see on TV or sounds I hear. I might also pick up words from what other people say and either repeat the word or incorporate it into a sentence. Swear words are also an issue. But the strange thing is that I’ve barely had a single vocal tic for the past two weeks. I don’t understand what’s going on. Can anyone tell me if this is normal?

I have a squeaking tic. And unfortunately for me, my sneezes also sound squeaky and my friends say I sneeze like a kitten.

So, one time my friend said “bless you” after I squeaked as a tic, and I looked her in the eyes and said “why are you blessing me bruh it was a tic”

She fully thought I sneezed. And now whenever I tic, even if it’s physical like hitting something, jerking my head, or just making odd sounds like “GAH” or “AUHP”

She blesses me 😆😆

Like:

slaps myself in the head against my will

“bless you pookie”

“thanks mamas”

literally I love her so much.

For those that drive with tourettes, how??? I havent been to driving lessons since my tics got worse and i'm really scared to start again

One of my friends has Tourettes. He's a grown man, and has managed to make peace with it and thrive, but his worst fear has come to pass: his tween son has it too, and in spades. He's really struggling. He's a great kid - smart and sweet and funny - but his tics are violent, and he's frustrated and embarrassed. It's heartbreaking that he's having to deal with this

So, the ask: how do I help them? They're seeking professional help, of course, but are there any resources I can point them to or advice I can pass along? Words of wisdom for the parents or the son? Or me?

Any help would be appreciated

I (18f) have had involuntary twitches, and vocal sounds for a few years now, (neck/head twitches, and high pitched sounds, screams, occasionally even an eye roll I can't quite control). I have never been diagnosed with anything, as I have never spoken to a doctor, because it does not take control over my life. I have often had people tell me, jokingly, that it could be Tourette's syndrome, but as it's not as bad as I have seen, I do not want to incorrectly label it and possibly hurt someone who does have that syndrome. I'm just wondering if all of the tics people have are always constant, and extreme/violent, and if I should bring it up to my doctor at some point.

Thank you in advance if you take the time to read, and reply.

I have a tic where I say things like “I want to kill myself” or similar suicidal phrases.

It happens constantly. A lot of the time I don’t even realise I’m doing it until somebody points it out to me. It isn’t me deliberately saying how I feel in that moment. It comes out automatically as a tic.

What’s really getting to me is how normal everyone around me seems to think this is. They’ve heard it so often that they barely react anymore, while from my perspective it feels pretty fucked up to be repeatedly saying that I want to die all day.

I also feel like my doctor doesn’t appreciate how severe or disruptive it is. I’m finding it difficult to explain that even if the words themselves are involuntary, constantly having suicide and self-harm language coming out of my mouth is genuinely distressing.

Has anyone else had vocal tics involving suicide or self-harm? How seriously did your doctors take it, and was there anything that actually helped?

I posted a couple days ago about how I got diagnosed with Tourette’s when I don’t actually have it but have tic behaviors. u/glitchNreset dm’d me saying that they “study” Tourette’s and asked me to talk more about my tics. Right off the bat I didn’t believe that they “studied” Tourette’s, at least in a serious sense, so I put the username into a website that reveals accounts that hide their posts and comments and it was full of tic sexualizing and fetishizing. Beware of posting tic videos or sending them to people who ask for them in unassuming ways.

Its awful having problems sleeping,specially because in my country the enter to school is very early, i have to wake up at 4:30 to 5:00 i dont have meds what should i do?

Hi 👋🏻 I'm a mum to a 14yo boy who was diagnosed with autism at 2.5yo and then later diagnosed with ADHD and Tourette's at the age of 8. I love my kid, he's the best, and I wouldn't change him. However, his tics can be painful and he gets frustrated by them at times.

I know that living with tics can be difficult, especially during the teenage years, so I would love to hear your experiences. What did your parents do, or didn't do, that impacted you and your tics? What do you feel makes your tics worse? What helps you calm them down? What have you realised, as an adult, that would have helped you the most as a child?

I'm just trying to do the best I can for my son, and I'd really appreciate any advice or experiences you're willing to share. Thank you ❤️

i've always kinda had them, especially after i hit puberty and my bipolar also got worse then too. but i noticed my tics are in heavy alignment with my mood, and they tend to come in waves. especially when im in or about to be in an episode. but it doesn't always align with my mood, sometimes it really just shows up whenever.

a year ago or so, it was really bad and i was getting really big tics constantly with really bad flare-ups. and then it disappeared for a good number of months and now it's back again. not as bad (yet), but it started slow. like i would just to small motor tics. but now, again, it's back and im worried it's gonna keep getting worse againnn.

nobody really knows i have it either, maybe like 1 of my friends. so i really, REALLY don't want it to start showing in public even though it already has. has anyone else had this?? does anyone know if theres any way to stop it lmao

So I have tics (not diagnosed with anything yet but suspected tourettes still waiting on a neurologist appointment.) and I've been getting really bad tic attacks for a year on and off usually during stressful times.

Theses tic attacks look like seizures.

- Collapsing to the floor

- Whole body shaking

- Difficulties breathing

- Doesn't last too long, the longset being 2-3 minutes no breaks.

They leave me overly tired, usually I'll a couple of them together rather then just a one and done. At times they get so tiring I can hardly move if at all and leave me tired for multiple days. They are kinda scary and sometimes i feel weird before it happens. (Idk how to explain it, its just weird)

I am fully conscious and aware of it happening, I am not confused during or after it though I do get bad brain fog pared with being overly groggy which can make it hard to speak or start/finish tasks.

I just recently had a really bad episode, the worst I've had, that lasted about an hour or two with short breaks in-between each tic attack/seizure thingy. It left me so tired that I spent half an hour laying on the cold floor trying to work up the energy to get up into bed.

I was wondering if anyone else has this happened to them and if you guys think its just a really bad tic attack or if its possible that it could be seizures.

Thank you for your time, I will be seing a docter about this i just wanted to see your guys opinions first.

Have a wonderful night

From the age of 4 till around 12ish (I say ish because it never really stopped, they just gradually slowed down and became more controllable) I had really bad tics. They were painful, loud, and oftentimes embarrassing for me and whoever I was with. My worst one was when I would throw my head forwards really hard and fast and give myself whiplash, this one lasted for a few years. I had vocal tics (I think) where I would constantly make clicking noises in my throat, I had one where it made me put a weird pirate noise through when I spoke, this ones hard to explain... I had one where it gave me a lisp??? Lord knows what this one was about. I had motor tics, opening my eyes super wide, constantly moving my eyebrows and then they felt uneven so I had to keep doing it till they felt even, which they never did. And a whole lot more.

It interrupted school, it interrupted my sleep, family members didn't want to invite me to things because I was embarrassing. It made me cry, I was so angry at myself because I just couldn't stop, and I wanted to be normal.

I went to therapy for it, a few different times. The main one was CAHMS (UK). They tried to get to the root cause of my tics when I was between the ages of 4-7 and they always came back to one specific thing, my mother's ex partner. He sexually abused me and physically abused my mother when I was aged 2-4, where my ticks shortly began once he left the picture. I don't remember much, memories come back every now and then, so for a long time I never ever considered that these repressed memories could have anything to do with my tics, but those therapists at CAHMS seemed to believe it did. Who knows, I'm not the professional here.

In my teenage years I still had tics, they just weren't as noticeable as they used to be. My most noticeable ones went away and sort of replaced by mild ones such an wriggling my ears which I hid behind my hair, or throat noises which I was usually able to laugh off and pretend it wasn't there, eyebrow movements, I was still ashamed and didn't want to tell my friends but they still definitely noticed and I eventually told them.

I'm now 22, and my tics are probably 90% 'gone'. My main one right now is a throat noise I make by breathing in but closing off my throat so it clicks, in and out. It's very frustrating because I'm doing it all day every day and it makes me out of breath after a long 'tic session' and I don't even notice half of the time. When I do notice, I can temporarily stop it but the urge is too strong. It's especially annoying in quiet lecture halls because I get so scared that I'm being loud and everyone is annoyed but so far no one has said anything.

I've always been told that tourettes don't just go away, and my particular tics never really met the requirements to be diagnosed with anything when they were at their worst. I didn't get help, I was told that there's nothing anyone can do. So here I am, 22 years old and I still have no idea what WAS and what IS wrong with me and my brain. Recently they have gotten alot more noticeable, especially my throat clicking, which became more prominent once the new academic year started and I went back to uni. My tics can often be linked with my anxiety and how I feel.

In a weird way, I just want to be validated. I've been told so many different things my whole life, that I have tourettes, that I don't have tourettes, that because I can somewhat control them then I must be faking it, I'm following a trend even though I'm 22 years of age and have had this since I was 4, that I have a tic disorder, that I don't have a tic disorder because they mostly stopped during my teenage years.

It's so frustrating to know that there is something wrong with me yet the world seems to shut me down when I try and speak about it. The only person who has ever been supportive of me through all of this is my mother and my sister, I wouldn't have gotten through this without them.

A couple of quick updates!

1. Tic Attacks has been updated based on user feedback. Several things from this:
   1. There is a new Continuous Tic function: If you are experiencing a continuous (such as constantly repeating without a break) tic, you can press and hold the Motor or Vocal button and it will record a continuous tic (and then ask you for more information after you are done logging).
   2. If you are unable to press the button because of a continuous tic, you can log it afterward as well - it will ask if you experienced any continuous tics.
   3. This shows up in both the Tic Attack and Monitoring sections
   4. The app does not do anything with Continuous Tic information yet - have to find a way to normalize that data to integrate it in a way that is reliable and useful! (If you have ideas, please let me know!)
2. Started HealthKit Integration - currently Gilles is not using any information from HealthKit, but it is planned to in the relatively near future. So I've begun building the parts for that. There's no need to enable it right now, but you can find it in Settings and it will ask for explicit consent for each piece of data it will access.

If you're already signed up for the beta and have installed it, you should be able to get the update through the TestFlight app. If you haven't signed up yet, please do so here: https://www.tsresearchportal.org/beta-signup

As always, Gilles is FREE to use!

Charles

For me, personally, the premonitory urge and the tic itself are very similar to a feeling of anxiety and stress in general. Since I have It almost all day it's seems like having chronic stress and I wonder if It has the same consequences as chronic stress.

​

I am 28F, diagnosed with Tourette's syndrome and OCD, and now my life is going pretty well, I'm a teacher, have good friends, and recently got into a relationship. The only thing I can say I struggle now at the moment, after a lot of therapy, is driving, because of my physical tics. I got my license 10 years ago, but did very little driving after getting it, due to lack of necessity and phobia of doing it, linked both to the Ocd intrusive thoughts, and my tics, which I was afraid they would distract me. However, 2 months ago I started driving again after years of not driving, and although I originally learned how to drive manual, I decided to make the switch to automatic cars, since I believe that as somebody with a neurological disorder I'm not really made for manual cars, and although I still have a bit of anxiety, that changed everything for me, and I'm positive that in some time I will be a confident driver, at least for short distances. Part of my problem was also that I was traumatized by the person who taught me how to drive years ago, who yelled at me and was not professional, also talking on his phone while he was teaching me, and so now I reject manual cars, but I think that automatic ones solve most of my issues. Some people say that automatic cars are for lazy people or people who don't know how to drive, however, it is easy to speak when you are neurotypical or do not have a neurological disorder, because I believe that if a person wants to learn how to drive manual, they should be given the opportunity, however I do not believe manual cars are for everybody, and I believe that had I learned how to drive automatic years ago, I wouldn't have spent so many years without driving and I would be an excellent driver by now. What do you think? If you drive, do you mostly do manual or automatic?

I don't have Tourettes (I think), but I do have tics due to stress, or rather, I have very mild tics like eye blinking tics most of the time, but I have had strong tic attacks due to stress, especially neck tics/head jerks (I am on leave and on a insurance pension at the moment because of the stress. ) However, I also have migraines, and when I have migraines, I have no tics! Do any of you experience the same, that tics largely stop during migraines?

Do your guys's tics become more severe around people(be it group of friends/class/public/in front of family) or when you're alone?
Or maybe even only(or 99% of times) appear when you're alone?

One of my coworkers has Tourette's, and sometimes her tics are racial slurs, specifically only when people of color are around. She's really cool and it doesn't bother me at all, but whenever me or other black coworkers are around, we typically hear the n word from her. Never did it to any other coworker who wasn't black. Obviously she can't help it, but it got me curious if maybe her intrusive thoughts are being revealed through Tourette's.

Want to be clear that I don't think this person is racist in the slightest. We're actually going out for drinks later, super cool girl. Also worth noting that I don't follow her everywhere of course, so maybe this tic isn't exclusive to black people. I just never seen her tic in that way with any other group of people.

Using a TENS unit does really help my teen daughter when she uses it. That being said, we generally don't carry it with us everywhere, because it's bulky and inconvenient. We don't use it a ton at the house because, even if it reduces tics, UNLESS the tics are bothering her. We are most likely to use it right before a concert or music lesson to help her "switch gears"... or at grandma's house if she gets overstimulated during family get-togethers.

For those who have tried TENS... does it work for you, and do you actually take it to work or school?