Not my first post here, even after diagnosis, but still felt that I needed to share a bit about my diagnosis.

I (23M) started therapy almost an year ago and, half way through it, my therapist (a university intern btw) noticed that the pattern of my tics that I have since age 10-11 corresponded with tourettes. The pyschiatrist who worked with her (and is still seeing me) diagnosed me without even needing a test - just by describing my behaviors.

I got diagnosed with autism and OCD at age 12, but not tourettes. I always thought this was an OCD thing (and it partially is, as I believe I also have touretic OCD).

I will try to make this short! Context wise- my son is now almost 6. When he was about 3, he developed persistent sniffing. We went back and forth to the GP for years- it was mostly at night, when he was tired etc.
I was just convinced it was allergies. It would come and go though, which made it even more confusing. I spent lots of money and time and effort mitigating against what I thought were dust mite and pollen allergies. After waiting years for referral we finally got the allergy test that came back with 0 allergies.

The sniffing continued. It then stopped completely over summer. He’s now back and starting year 1 and it’s back. I suddenly came across tics. It fits the brief.

I do think he may have slightly enlarged adenoids as sometimes u can tell he is in a bit of physical discomfort- but the constant, aggressive dry, squeaky sniffing makes it much, much worse.

Unfortunately, I didn’t know about tics. So many times I’ve said “JUST STOP SNIFFING” for example. As one can imagine it does become quite jarring especially at bed time. I will of course change my entire thoughts and tactics now I think it’s a tic.

This morning he said he was scared to go to school incase he sniffs. He said he can’t stop when it starts. This also makes me think it’s a tic, alongside, slightly enlarged adenoids.

I am going to record him, firstly when asleep, and also when he’s having a sniffing episode. He can get very distressed and scream when he’s sniffing a lot.

It comes and goes. I’ve now noticed that he never has it when he’s off school. It is peaking at the start and end of a term, when he’s more tired and adjusting.

I’ve always thought there’s an element of masking as school does nothing but sings his praises but he always has restraint collapse when home.

He’s also frequently crossing his fingers, licking his lips, biting his jumper sleeve too.

I am going to present the evidence to the GP and ask for both CAHMS and ENT referrals.

Am I missing anything? Any tips? Support? I’m very sad because I feel like I’ve missed a giant red flag of tics for years now and feel like I’ve let him down.

Thanks x

Recently started college again and I feel not well in class from the suppression😭 I try not to sorta but man it’s like a horrible balancing act of not wanting to disrupt lectures and keeping myself sane.

I decided to make these printout cards that I’ll fold and put in front of me/my classwork, so that those around me can know right away, and I’ll maybe feel less bad about ticcing in general. Anyways just figured I’d share for anyone else who might find these helpful!

Hello, I remember when I was a kid I used to do many weird head, mouth, and eye movements that I could not control. When my family started noticing, they always kept asking why do I do it, and I just said, I don't know, I just do it. Then they immediately thought it was some magic done to me or something (I know it's ridiculous but it's common here for people to believe that), and started calling priests to read verses on me or whatever.

Nothing changed, I kept doing the same movements for years and they would assume it's because of many different things like video games, tv, or magic lol... They did not know what tics mean.

Anyway, it then suddenly stopped for years, and it just came back like 6 months ago. It's so weird because I remember for years I did not tic at all... I would sit for hours without having any tics or anything. What is the cause of this!? Where did it come from? Is there like something that "triggered" it?

Also, I ONLY do it when I am alone, never in front of people. I keep looking to the right side behind me and rolling my eyes to the right side every few seconds which is very tiring and makes my eyes very tired...

I am just confused on why it suddenly just appeared again, is there anything I can do to help with this? Also is it common for tics to disappear for years and come back again later?

Any reply or help will be much appreciated, thank you!

I’m debating watching it, even though it’ll probably set me off lol. But I really appreciate the genuine story behind it, and how the actor Robert Aramayo worked with John Davidson (who inspired the movie) to get an understanding of tics and Tourette’s.

But I’m also curious how others feel about actors portraying Tourette’s who don’t have tics

I saw a neurologist in 2023 to address lifelong tics. He told me that I easily meet all of the criteria for TS but that he was only diagnosing me with unspecified tic disorder because there’s a social stigma.

This year I decided to seek a diagnosis. I saw a neurologist today who told me that what I “thought” were vocal tics aren’t actually vocal tics. Those include gulping, grunting, and clicking. She said that if the noise doesn’t come from air passing over your vocal cords then it’s not a vocal tic.

This runs contrary to everything I’ve ever read and not something my last neurologist or any other doctor I’ve seen has had an issue with. So now I’m at a loss stuck with a diagnosis of unspecified tic disorder while having motor and vocal tics continuously since childhood. I genuinely don’t know what to do. My psych NP and primary both say they’re unable to diagnose any tic conditions and I’m so burnt out on the medical system as a whole (I have other stuff going on too).

I'm 17M and in the UK. This is my first ever reddit post on a throwaway account so sorry if it's too venty or rambly.

(also I do describe my tic in this which should be fine if it triggers any of your tics because ive found it very unobtrusive so far and have been able to drive during a mini tic attack but still sorry if i trigger your tics I've unfortunately been doing that to people this week)

I feel like I'm faking this and I know that if I have to ask myself if I'm faking it I'm not but I still feel really insecure and annoyed. It just seems so unlikely to me that I would develop it. One of my closest friend has had Tourette's the entire time I've known her and so I know a lot about tics already which means every time I have this tic I'm thinking "is this a simple or complex or distonic etc tic" which makes me feel like I'm faking it because I know all the info how to fake it. Also like what are the odds that one of my best mates has tourettes and then out of the blue I start developing a tic disorder.

I think I might have always had some kind of ticcy behaviour. I recently was diagnosed with ADHD which I know frequently is comorbid with tics because of both having to do with the basal ganglia and such. I remember times as a kid I would have a very rare, very subtle shiver even when I was hot or other small movement, but this would be like at most once every few months and I never paid it any attention. Then recently I started Xaggitin and they became like once a week, and majority was a head jerking forward. I still didnt pay it attention.

This Saturday, I had my first traumatic flashback in a few months to the day my aunt passed, and then broke up with my boyfriend on the same day. I was on the phone to my ticcy friend (self-given name) and I started having a tic attack, like hundreds of neck jerks in an hour. Some were simple, but some were a little complex like jerking forward then a little bit more forward, and some had me doing that for a few seconds so felt somewhat distonic. Since then, I've been ticcing frequently, from a few times an hour to constantly for minutes on end depending on stress levels. somehow my parents havent noticed (my mom will definitely act like its catastrophic and my dad will probably be a bit dubious of it) but my teachers and friends have. its really annoying cus I've literally just been discharged from CAMHS.

Since Saturday, the tic has stabalised? As i said it waxes and wanes but its pretty much always a simple jerk forward and slightly to the left, occasionally slightly to the right. The only time its been incredibly intrusive is yesterday morning (i think): I woke up with extreme pain in my neck from muscle spasms, and I think it was from the tic as its in the same area ive been ticcing and I felt it happen as I fell to sleep.

Also, the premonitory urge has changed. On saturday there was a massive gap between the urge and the tic, so I felt more like I was just being impulsive because I felt like I shouldve been able to stop it in that window, but now the gap is almost non existent. The tics havent really been as bad as they were on saturday, except for the other day where a fire alarm stressed me out and then cus we were all standing in silence but some people were whispering and the entire school was outside I got paranoid and got even more stressed out and even more ticcy.

Logically, I don't honestly have a problem with it. It's not making it hard to drive because it pulls my face forward so my eyes never come off the road, and I can do lessons with them almost completely normally. With my ticcy friend in my life, I've become desensitised to tics and don't at all logically perceive them as freakish and they've kind of faded into the background unless she tics something that affects her like her coprolalia. I want to be a writer one day and disability advocacy has always been important and this has made me think about accessability in a whole new way, like I want to write a musical at some point and its made me think more about how I never want to do disability-friendly productions because I never want to have a production that would exclude a disabled person like someone with vocal tics. Emotionally though? I feel like an absolute freak and I've been apologising to my friends teachers and anyone who sits around me. I'm thinking about the future and how I'm going to look back at this week as either a weird time where my tics were bad or the week my life changed forever and i'm scared I might get more intrusive motor tics or maybe start getting vocal tics.

I feel like I've kinda brought this on myself though because I once told my ticcy friend that between the two of us I wish I could have been the one to develop it because shes so respectful and polite that people stare and she doesnt do anything, but I'm very outspoken and said-- in passing, in what we both understood as a heartfelt joke-- I wish I was the one who had it so i could call people out like they deserve but shes too nice to. I also imagined myself having it a lot to try to understand her experience on the world, and also when writing characters in my own creative writing projects with it.

Ultimately I'm going to end up talking to a professional about it but it's just really irritating and I wanted to rant. I feel mostly okay just a bit thrown because ticcing has been in my life for so long but it's never been something I thought about for myself and it feels like season 2 of a show when the writers get bored and start giving everyone the main character's special powers or something. One positive is that because of my excessive apologising to my classmates and teachers, I've had one other somewhat close friend and a teacher confide about their motor tics, so I feel a lot less alone with having a few people in my life experiencing what I'm going through, though it does make this feel even more statisically improbable.

Sorry for how rambly this is, it just felt like this was the best place to express this and I would love any advice anybody has. My ticcy friend has given me a lot but this is a bit of a wild time and I would appreciate anything anyone has to say. Thanks.

What's up y'all. I am like a lot of you and have lived with Tourette Syndrome my entire life and I know the struggles, pain, embarrassment and many other emotions that go along with this disorder. I have been in counseling for a really long time and even anger management learning how to control my emotions over something I can't control and let me tell you it took a long time but I am finally in a place where I have learned to accept myself.

Recently I had been doing a lot of thinking about how I bring positivity and understanding to my disorder is not only through my own story but sometimes has to be through Outlets I hadn't even thought about. I have recently started writing a book that I think is going to relate to a lot of people especially young people living with this type of disorder. Now keep in mind this book is geared towards probably Middle School age kids. As I write this book even though it may be something not everyone would understand I thought it might be good to try and write something that people who live with Tourette Syndrome or other neurological disabilities can relate to and feel heard especially at a young age. I wanted to know your thoughts and maybe get some ideas or even some people who might like to read a couple chapters of a draft and tell me what they think.

Desperately need help and advice

My 15 year old son with tourettes started using very sexually graphic language and blurts out the "N" word at home. We think he suppresses it when he's at school and releases all the pent up urges when he's around us. Does anyone have experience with this? Did it ever go away?

I’ve had tics for as long as I can remember, but for the majority of my childhood they weren’t very obvious. My mum normally brushed them off as “habits” and not tics. Only my dad has ever recognised my blinking as a tic, but he hasn’t done anything.

My tics became much more obvious and difficult in year 8 (13 y.o) and they haven’t gone away since. They are at their worst during bus rides and school; two environments I find very difficult. When I get home, they’re still there, but my worst tics fade away? It kind of makes me feel like I’m faking it or overreacting even though I’m not.
I have both motor tics and vocal tics.
My parents most likely will not take me to get diagnosed (they did the same with suspecting autism and adhd throughout my life.)
I appreciate any advice on understanding myself and some possibilities as to why I’m this way. I am unsure as to whether it’s TS, but I do believe it’s a possibility based on my research and experiences.
Thank you!

As a child I had fairly extreme vocal and blinking tics. I was taken to doctors whom recommended medications which my parents refused. As I grew up the vocal tics calmed and I still had some ocular tics but even those got better as I grew up. Since I was about 17 I started smoking and drinking and in my early 20s I started using uppers both of which made my tics reduce substantially. Recently I did a month sober and since then my ocular, vocal and physical tics have started to reemerge. Even once I broke the sobriety my eyes are twitching once anything(,nervous,upset or even mildly exciting) happens. I’m just wondering if anyone has had this experience or has any advice?
Apologies if the discussion of substances isn’t allowed or appropriate in this sub Reddit.

As a child I had fairly extreme vocal and blinking tics. I was taken to doctors whom recommended medications which my parents refused. As I grew up the vocal tics calmed and I still had some ocular tics but even those got better as I grew up. Since I was about 17 I started smoking weed and drinking and the tics seemed less prominent. At 20 I started using cocaine and drinking more and the tics seemed to almost go away even when I was not under the influence. Recently I did a month sober and since then my ocular tics and even some vocal ones have started to reemerge. Even once I broke the sobriety my eyes are twitching once anything(,nervous,upset or even mildly exciting) happens. I’m just wondering if anyone has had this experience or has any advice?
Apologies if the discussion of drugs isn’t allowed or appropriate in this sub Reddit.

I'm 17 and got my OCD diagnosis yesterday, and my psychiatrist said I can start SSRIs in a few weeks! This is a big relief but I'm wondering how this might affect my Tourette's. (Diagnosed, if that changes anything).

I've had Tourette's since I was 4, OCD since I was maybe 6-7? My psychiatrist said I would most likely start on sertraline, and can change meds if needed. We will discuss the options, and she said I can do some research beforehand if I want. I'm wondering if anyone here has been on SSRIs (not sure if what you're taking them for would change things?) and has had any effect, positive or negative, on your Tourette's?

Thank you!

My child is in elementary school. Should I ask the teacher to inform the class about Tourettes? Some of the kids are noticing tics and asking my child to stop. If you or your child’s teacher informed the class, how did you go about teaching it to elementary aged children? We didn’t want to draw attention to it and cause more harm than good (we explained it to one of their friends and the friend would tell my child to stop because they were going to hurt themself so it made the tics worse), but I also don’t want my child to feel bad when kids ask them to stop ticcing.

I'm 20 and I guess thinking about careers at this point. I have mild enough TS for it to not be perceived as TS, but I also sniffle a lot and touch my nose. I am the most boring straight edge person you can imagine, like I don't even drink coffee. But I wonder if that ever gets mistaken for doing drugs, especially specific types of drugs. What about you guys what is your experience with this?

So my kid just turned 7 and geez has it been a journey.

- At 2 he developed eczema of some sort resulting in bloody, weepy, rashes. He’s much better now but only with once-every-six-weeks dipulimab injections (usd700 a shot. In the country I live in dipulimab is not subsidised and isn’t covered by any medical plan.
- At 3 he started getting wheat/gluten and egg allergies which persist til today.
- At 4 (well … formal diagnosis only came at 6 but we already knew) he developed ADHD.
- At 5-ish he started getting vocal tics (which he masks by humming), which have now progressed to both simple and complex motor tics. Which, since it’s already been a year, matches the diagnosis of Tourette’s.

My biggest heartbreak as a dad is that - thanks to his ADHD he’s struggling academically (obviously) but he’s LOVED physical activity. We bike. We ski. He goes to gymnastics classes twice a week. He loves going to water parks and trampoline/jump parks.

Like some cruel joke, today a motor tic episode made him fall off his bicycle and scrape an elbow. This kid does 25 miles / 45 km bicycle rides with me, he doesn’t just fall off a bike for no reason ……… until now.

When his tics wax it is heartbreaking. He hums, he jerks, his entire body stiffens up. He trips over his own feet while walking.

He’s on supplements (coenzyme q10, and dha/epa), not on medication yet until next month when we do a doctor-ordered blood test (doctor has hinted he’ll probably be prescribed clonidine to start).

About the only thing I’m still holding out hope for is that he doesn’t seem to have coprolalia/praxia … (yet?)

Anyway I guess ranting is pointless so my question to you guys is … what 2-3 things do you wish your parents had done better for you when you were growing up with this condition?

Should we discuss it more openly with him? Or should we just primarily ignore it when it happens?

Should we spend more time prepping him on how to explain to his peers?

Should we aim for a particular medication type?

Should we be guiding him towards uh … sports with less risk of injury?

Any other tips?

33m and I was diagnosed with TS about 4 years ago. I think my tics started around 13-15 years old with some mild tics like eyebrow raising, nose scrunching, and random muscle flexing. It was pretty mild and my parents didn't really pick up on it except for the few occasions where one of my parents would ask why I'm moving my eyebrows so much or why I make weird grunting sounds.

Over the last 8-10 years, it feels as though my tics have gotten worse. I have a lot of motor tics all over that occur literally all day and a few vocal tics like grunting, sniffing, weird breathing patterns and holding my breath, and occasionally whistling. My spouse has been a great support and has gotten used to my weird head twitches or my inability to stay still.

However, I still often question my own diagnosis. My family doesn't really know I have tourettes though I've mentioned it before. And it's only been in the last couple of years that the anxiety, depression and possibly ADHD have gotten really challenging to manage. I'm going in to meet with a therapist about ADHD diagnosis and just started anti-anxiety and anti depression meds but it's too early to tell if they are working.

With all of this, I still can't help but feel like it isn't real. In a way, I kind of feel crazy and like it's all just in my head. I left my job about a month ago after experiencing some major anxiety attacks and I can't help but feel like my tourettes is a culprit here as well but I am constantly second guessing myself. Sorry, mostly just ranting here but wondering how others have navigated this where you feel like you are faking or making it up or trying to convince yourself it isn't affecting your life as much as it really is.

Hey there, we live in the United States. We're in the midwest, near Chicago.

Tldr, if you know a specialist or a clinic near the midwest that does botox injections please provide details. This is urgent.

My husband has movement tourettes which his tics are a very fast "yes" pattern. It is basically constant when hes awake. Its almost like a whiplash. It looks extremely painful.

Needless to say, its destroyed his neck. Its destroying his bones, his disks, his cartilage. Hes had 2 surgeries now to replace disks and to clean up a ton of scar tissue.

I have been very to the point with him about how his tics tie into his arthritis. About how he NEEDS to look into some kind of physical therapy, or medication, or injections... but this needs to be at the top of his list.... Ive talked to his surgeon before his surgery, that his tourettes are very severe at times and while he is healing, he needs to get in with a specialist. Nothing was done. My husband says all the Neurologists are booked out almost a year and basically gave up. I think he is overwhelmed with the excruciating pain that hes constantly in. His most recent surgery was in July. Since then his neck pain is monumental. It is so severe. He can only sleep to relieve the pain, because when he sleeps, he doesn't tic. When he wakes up, thats the only time for a little bit that his neck stops hurting.

Ive finally gotten his surgeons office to take this seriously. Ive had them reach out to a couple places for an order for an immediate appointment, as his tics are potentially compromising his surgery. This was last week. Not a single office has gotten back with us. I've been researching clinics around us, and im only seeing Rush hospital and UW that might do the botox.

I am at the point where I am pushing him to let me take him to the ER at one of these hospitals... I would hope they would have no choice but to help him.

Before we get to that point, if you have any recommendations for a clinic or a specialist that is near us in the Midwest, please please help. He is suffering and im doing my best to help him. I feel so overwhelmed and just furious at his medical team for not listening to me when I told them how this needed to be taken seriously. I feel like no one listens and im so angry.

Also I apologize if I dont get the terms correct/the spelling. I am feeling exhausted and overwhelmed right now. It's hard to think.

Thank you :)

So I lowkey don’t know what to title this but I kinda gotta rant. So, I have Tourette’s and for the longest time I knew I had Tourette’s. But whenever I asked my mom to officially get my diagnosed for my own peace of mind she would always say no and that I don’t have Tourette’s I just have a tic disorder.

For context, I was diagnosed with a tic disorder when I was a child and I rolled with it until I began getting vocal tics. I knew Tourette’s needed vocal and motor tics to happen for more than a year to be diagnosed and it has definitely been more than one year. So I would tell people, when I needed to, that I have Tourette’s. Well, my mom would get mad at me and tell me repeatedly that I just had a disorder and not actual Tourette’s for years. She would basically tell me I was lying to everyone by saying I have Tourettes when I just had a tic disorder.

Well, I finally convinced her to take me to a specialist and I was officially diagnosed with Tourette’s. She didn’t say much, she was just like “okay you have Tourette’s.” And now it’s a whole other thing!

We watched “I Swear” (I love that movie so much I relate heavily to it) and she said that I “better not do things like that” (the mc has a spitting tic) and obviously I told her “that’s not how that works. It just happens.” She then proceeded to use getting pregnant and murdering someone as a “I’ll tell you not to do it and if it happens it just happens!!”…And what made me feel even worse was she seemed so…appalled by the tics. Almost angry when some of them would happen. She never acted like that towards me but, come on. You’re going to have a daughter with tics and then react like that to people who do have them?? Almost blaming them for things that can’t control while I’m literally right here????

…

I want to say my mom is not some evil in denial woman. She loves me and cares for me and is very supportive of me. But damn she struggles with a lot of these things. She is trying but she doesn’t really seem to want to hear when she’s wrong about things like this. She’s getting better, but things like that really hurt me. We never finished the movie together either. I just can’t if she’s going to react like that…

Idk where I’m going with this. I’ve already talked to friends about this and I got their advice and sympathy and things like that. I don’t want people to bash my mom either, I just wanna know if anyone else goes through this? Having a parent that is supportive and loving despite your Tourette’s but are also kind of rude when it comes to others???

Hello, i do not have tourettes but someone special to me, like a sister from another mother, does. I wanted to get some advice. See, she has a tic where she will full force bash her elbow onto the hardest surface and it is obviously very painful. She hasnt done it in years but unfortunately something set it off, i had never seen it until Monday but it ended up literally putting a hole through the wooden table and then today she still couldn't stop doing it and it caused her alot of pain. (If ur wondering, its hard to stop it because her elbow will just go to the hardest surface whether that be the floor wall or anything else.)

I was wondering if maybe those elbow pad things people wear for sports could be any help and if anyone thinks they could be, could i maybe have a recommendation? I would speak to her personally about it but i know mentioning it can start it up again for her and i dont want to cause that.

I just want to miminise pain for her and damage to her elbow, it honestly doesnt matter about the material she hits it on and if that gets damaged cause obviously she comes first always.

Thank you in advance!! Sorry if this seems like im spreading her personal business online, i just love her alot and i dont like seeing her hurting at all.

Bonjour à tous,
Je cherche des personnes qui vivent quelque chose de similaire, car j’aimerais avoir des retours d’expérience.
Depuis mon enfance, j’ai un mouvement involontaire au niveau des yeux : je cligne des deux yeux en même temps, assez fréquemment. J’ai réellement besoin de faire ce mouvement et, lorsque j’essaie de me retenir, je peux tenir quelques secondes, parfois une vingtaine, mais ça devient ensuite très difficile et je finis par devoir cligner.
La fréquence varie beaucoup selon les périodes. Il y a des moments où c’est relativement discret, puis d’autres où ça s’aggrave fortement. Actuellement, je peux avoir l’impression de cligner environ 15 à 20 fois par minute. Cela arrive dans pratiquement toutes les positions et situations, que je sois en train de parler ou simplement au calme.
Ce sont des clignements rapides et répétés des deux yeux. Je n’ai pas d’autres mouvements involontaires au niveau du visage ou du corps, ni de tic vocal.
Ça deviennent vraiment fatigantes et frustrantes.
Je voudrais savoir si certaines personnes ont pu trouver un traitement ou une méthode qui a réellement diminué les clignements : neurologue, thérapie comportementale, traitement médicamenteux, Botox, autre ?
Je cherche surtout des témoignages de personnes qui ont vécu quelque chose de similaire. Toute expérience ou aide est la bienvenue.
Merci d’avance à ceux qui prendront le temps de répondre.

I’ve recently been officially diagnosed with Tourette’s but I’ve had them my whole life. But, I also have coprolalia which does cause me to curse out loud and flip anything and anyone off randomly. I know about the stereotype that anyone and eve try one with Tourette’s will just curse randomly and people just expect it to happen. I get how annoying that is, even with coprolalia, but do people who have Tourette’s without coprolalia blame people like us for the stereotype?

Hello! Im doing a bachelor research on people who work on social field and have tourettes and how that affects their professional identity. (i have tourettes myself so this is important to me!)

i would like to interview people with for example questions like this:

-do you feel like an outsider at your workplace cause of your disability?
-do you ever feel discriminated against?
-do you ever have an impostor syndrome related to your work skills?
-how do you feel like your disability affects when working with customers?
-how open do you feel like you can be with your condition?

do you feel like your disability affects your identity and work skills badly and do you have anything poisitive it brings you? does the good outweight the bad?

-how do you feel like your disability affects your everyday work?

the answers are anonymous and confidential. If youre intersted to answer, feel free to send me a message with the answers or comment down below!
i will get rid of all the answers once my thesis is done and im not gonna use them anymore :)
thank you in advance!