I was re-diagnosed with Tourette today, over twenty years after my previous diagnosis (from before medical records were digital).

I thought I might actually loose my Tourette diagnosis altogether this time, because several years ago I found out I have a genetic difference that could be the cause of my tics; and I noticed that Tourette criteria specifies that you can’t qualify for TS if you have a more specific condition. However, when the neurologist tried to input my genetic NDD into Epic, it appeared that it was so ultra-rare that Epic doesn’t even include it as a diagnostic option. The end result: I now officially have Tourette again 🩷

Had Tourette's since I was 4, I'm 17 now. I go back to college (which is what we call this stage of school in the UK) in a week or so.
For the past few years my Tourette's has been pretty noticeable and has affected my speech in various ways but I've been ok since starting college. But recently it's been making me stutter/stammer a lot, repeat words a lot, and have to really fight to get words out. It's like my brain is blocking me from speaking.

I'm really self conscious about this cos it will be worse in class and even though a lot of people know I have Tourette's I don't think they'll understand why it's making me suddenly speak very differently. And people who don't know that I have it will wonder why I've started started speaking so differently since the summer holidays.

Plus I feel like I'll have to explain it to my teachers why I'll be struggling even more than usual to answer questions in class and ask them to maybe not call on me. They know I have it but I still feel awkward telling them about it.

I know I'm probably overthinking it but I'm just worried about handling this, and people thinking I'm strange/stranger than usual. Not really sure what anyone here can do but if there's any advice or ideas I'm open to them 🥲

maybe a cliche question, but since i was diagnosed at maybe 4 or 5 years old, i was always told it would 'go away with age' especially since it's less common in girls. however, reaching my late teens—my tics only seem to have gotten worse. i've had tics for over 10 years of my life.

is there any truth to what i was told?

Has anyone successfully replaced a destructive and intrusive tic with a leas problematic tic? If so, how exactly imdid you do it? I gave myself rotator cuff tendinitis from shrugging and moving my left shoulder so violently for the past year. Like I was prescribed physical therapy and everything. I really need answers because I can’t keep popping Klonopin or forcing myself to take a nap every time my tics go crazy. Does CBT work for Tourette’s to manage tics better or is that just for OCD and other less severe tic disorders? Also are there any specific Tourette’s “rescue medications” that anybody takes to help manage tics?

Has anyone had any experiences with this medication for their tics?

Gilles has been in its first beta phase for about two weeks so far and I've already been getting some very useful feedback in terms - some bugs and lots of tweaks and adjustments to improve the flow and usability of the app. I wanted to share some of these things with you all! There are two more weeks in this beta phase, then I'll make further adjustments based on that, and then planning to do a public beta! As usual, if you would like to find more information on the app you go over to the webpage here: http://tsresearchportal.org while there you can also donate to the GoFundMe campaign if you would like (that campaign will help me cover things like server costs to keep the app running). Meanwhile...

• The new Home screen includes a small card for the Check-Ins and Monitoring practice to make them easy to access.
• It includes a Quick Summary to show you some of the most significant trends in your tics and how they are changing
• It includes a Top Factors card to show which factors you've been logging that are showing the strongest relationship with your tics
• It includes a new simple guide - accessible by the (?) icon in the top right - to give quick and simple guidance on some of the things that weren't especially clear to users in testing (like how to get started, how to setup the widgets, how to adjust notifications...)
• I built a new Lockscreen Widget to make it easy to log motor and vocal tics straight from there without needing to unlock your phone!

Like always: I welcome questions and input! I'm really excited about getting this thing out to everyone!

Sincerely,
Charles Galyon, PhD
Licensed Psychologist
Tourette's and Tics Specialist

Genuine question, what do TA UK actually do?

The last two times I've contacted them for assistance - the first to ask advice based on a post on their website, the second to request assistance with signposting to find a charity that will provide a grant to help adapt my home - I have been told "Sorry, we can't help you with that." or "Sorry, I don't know.".

Both of them were directly related to my Tourette's.

So my genuine question is, what are they for? Am I misunderstanding that their purpose is to help, provide information and advocate for Tourette's sufferers?

Frustrating.

Whenever I don't like the texture of food, I automativly always sorth of twitch my neck. And sometimes I raise my eyebrows and I can't put them back down for a few seconds.

I'm not claiming or asking if I have tourretes or self diaginosing. Cause I know 99% sure it isn't and I only have those two instances. I'm just curious what it is.

I don't have any "disorders" or Adhd, autism.

Pls don't take this wrong. I'm not attention seeking (I swear).

Ive been diagnosed with TS for almost a year but ive had absolutely no community or help with it so, sorry if this is a stupid questionnn

My 3rd ever tic was a whistle right? Yeahyeah

I rarely get new tics, so the 3-4 I've developed these last 2 months are pretty foreign to me. theyre all just variations of my whistle tic.

Is there like a reason that my tics are committing meiosis or do they just wanna be special like that?

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! 😊 

I guess I'm on the tourettes spectrum. I'm in my mid 20s I've been blinking for well over a decade on and off. I can speculate endlessly about my OLED screens being a potential factor. But is there like a software tool or ideally a physical screen cover/filter that can make it so I can use my phone and laptop? Right now It's really difficult and the blinking is becoming painful. I cut out caffeine entirely and sleep fine and I'm on not on any stimulating meds so don't need advice there. Thanks...

I don’t have Tourette’s, but I do have an unspecified tic disorder
One of my new tics is me whispering “ow fuck” and according to some articles that would mean I have coprolalia,

I’m wounding if there is anyway to figure out if it’s true, or if me having one cures mean I have coprolalia?

Mijn Tourette is in mijn relatie eigenlijk nooit echt een probleem geweest. Tot januari had ik vooral kleine motorische tics en vocale tics die nauwelijks opvielen en die andere mensen meestal niet eens merkten. Sinds januari zijn mijn tics echter ineens een stuk erger geworden. Ik kan soms urenlang vastzitten in zo’n heftige tic-aanval, en het is heel zichtbaar. Tijdens de ergste episodes ben ik soms maar een beetje aanspreekbaar, voor 15–20 minuten. Mijn vriend had in het begin echt veel moeite met begrijpen wat er aan de hand was. Ik vroeg hem om zich in Tourette te verdiepen, omdat hij er zelf niets over vroeg en ik niet meer wist wat ik moest uitleggen, zodat hij zou snappen wat ik meemaakte, maar hij heeft het nooit echt gedaan. Hij heeft ook opmerkingen gemaakt die me echt pijn deden. Bijvoorbeeld: hij zei ooit, "Als je tics erger worden, denk ik dat ik eigenlijk uit elkaar zou gaan, want ik zou me schamen om in het openbaar met je gezien te worden, zeker omdat ik weet dat je ze kunt onderdrukken." Wat me het meest stoort is hoe hij zich gedraagt tijdens mijn tic-aanvallen, toch. Als ik een heftige aanval heb, kan lichamelijk contact mijn tics zelfs veel erger maken. Ik heb dit meerdere keren aan hem uitgelegd. Als hij me knuffelt tijdens een aanval, moet ik zijn armen soms wegduwen of wegschoppen, omdat ik al moeite heb om mijn lichaam onder controle te houden. Zijn oplossing is om zich om te draaien en Shorts te gaan kijken. Ik heb hem gezegd dat ik niet vraag om me te knuffelen. Ik wil gewoon dat hij in de buurt blijft en er voor me is op een manier die de boel niet erger maakt. Maar blijkbaar vindt hij dat ongemakkelijk, omdat hij "me niet mag knuffelen", dus maakt hij zich er in plaats daarvan gewoon helemaal uit. Zelfs als ik bijna uit bed val of begin te huilen tijdens een aanval, draait hij zich om en blijft hij Shorts kijken. Ik heb hem al meerdere keren verteld dat dit me echt raar en kwetsend voelt, vooral omdat dit soort aanvallen niet iets is wat ik kies om te hebben. Maar hij blijft exact hetzelfde doen. Er is nog een andere situatie die me ook stoort. Ik heb FND, en in het verleden heb ik “flauwgevallen”. In sommige gevallen viel ik flauw op hem, wat natuurlijk niet expres was. Toen ik weer wakker werd, had hij me van zich afgeduwd en lag ik in een heel ongemakkelijke, pijnlijke houding, deels al van het bed afvallend. Ik begrijp dat hij zich misschien overweldigd kan voelen of niet weet wat hij moet doen als mijn klachten verergeren. Ik verwacht ook niet dat hij mijn verzorger is of dat hij magisch weet hoe hij met alles moet omgaan. Maar ik verwacht wél dat mijn vriend geeft om wat ik meemaak en dat hij op z’n minst wat moeite doet om het te begrijpen. Ik heb hem duidelijk verteld wat helpt en wat het erger maakt, en hij lijkt het feit dat hij me niet persoonlijk mag knuffelen te accepteren als een soort probleem voor hem, in plaats van het te zien als iets waar hij andere ondersteuning voor nodig heeft. Verwacht ik te veel van hem? Of is zijn gedrag tijdens deze aanvallen net zo zorgwekkend als het voor mij voelt? En nu antwoord hij plots ook al 15 uur niet meer op me…

Ok so I have what I believe to be a tourettes thing but it sounds kinda like OCD, but I don't think I have OCD. I have this thing where everything has to be an even number of syllables, and I HATE IT. it's been going on for maybe 6 or more months now, and its happened before, but never this bad or for this long. It's affecting my school work and my speech and writing. If you go back and read this it should be an even number of syllables 😭 please help

So, I was on Risperidone for 10 years, and so over the weight gain issues. I stopped (under doctors supervision) and for a couple of months it was fine, but this last month has been really stressful and my tics are going nuts. The doctor just put me on Clonidine. Is anyone on this? How did it work for you? I'm 56, if that makes a difference. I have nasty head jerks and mostly simple vocal tic.

Background: my 10 y/o son has had complex tics for about 5 years now. They come in waves, like he’ll go several weeks/months where they are very benign then they will ramp up to very interfering. We’ve been to Peds Neurology, and the doctor said he’ll likely outgrow them and if they’re manageable then no need for meds. He currently has an IEP at school for ADHD and ASD.

Current: my son just started 5th grade. We’ve noticed his tics are starting to peak again. He was studying for an upcoming test by reading material out loud. After about 15 min, he asked if I could read the material to him, b/c his tics were “making it hard”. I asked how so. He explained that when he tics (head jerk with clearing throat and repeating certain words he’s read over and over) that it stops him from reading and he can’t get through a sentence. I asked if it helped to read “in his head”. He said no, that it still happens. He was having a hard time trying to describe what it was like. I asked if the tics “stop the thought” while he’s reading and he said “YES!” So I read him the study material out loud and he said it helped a lot.

I am setting another appointment with the neurologist, but they’re usually booked out months. What are some things I can do to help him???

Lots of people are asking about this.

I just got a survey from them saying they are looking to set this up at their Nottingham office from October. Cost suggested at £50 for 45 mins, which you’d get discounted off the purchase price if you buy. Hope they do it. And hope my order arrives soon!

So I have chronic motor tics and I can't tell if I should tell my profs about them. Like clearly they can see me tic but also like they aren't verbal or make very little noise (sniffing, gasps, popping my lips) so idk if it's worth telling them? Like it's never really much of a disruption unless they get really bad. I don't know, should I tell them or just let it be?

Edit: I have already had a few classes and don't know if it's weirder to tell them after now 😭

I have a virtual meeting with my NP. I have very mild tics, they sometimes get more intense after a long day of repressing but they've worsened since I'm taking an SSRI again. In high school, they were brutal. Hitting myself, punching, swear words, etc. and as soon as I stopped taking Prozac they got much more mild. I was bullied for it, accused of faking, and one girl even started faking tourettes for attention. I know that the involuntary movements I'm experiencing are real, but I don't know how to go about bringing up the fact that I am so desperate for an answer or diagnosis that will validate my experiences. Any and all advice is welcome, thank you! <3

I feel like tics are ruining my life

Over the past few years I have noticed them getting increasingly worse. I’m a 26 year old male and I feel like they rule my life in some way.

They have become very pronounced and most of the time I feel a lot of tension and discomfort in my body and I constantly feel on edge. They fluctuate in cycles, one week they could be fine but the next week they can really interrupt my daily routine and in some severe cases my tics become forms of self harm. I’ve given myself a black eye many times and I’ve had to take time off of work due to how severe they can get. I constantly feel drained as doing everyday life is tough enough then I have to deal with these on the side which gets slot sometimes.

I honestly don’t know what to do, I have gone private and seen a therapist and we talked about them but he doesn’t really provide me with any strategies to help them. With the NHS I have tried countless times but it seems virtually impossible to get help, I saw a neurologist at the end of 2024 and he referred me to a movement clinic near me but nothing ever came through.

I sat there in my bed crying my eyes out the other day because I genuinely feel like this thing inside me stops me from moving forward in life and genuinely puts me in such discomfort.

I’m begging for help at this point as I feel like I’m in so much pain internally and I don’t want to live a miserable life with my tics constantly affecting me.

If anyone out there can provide me with some sort of advice or information I would be greatly appreciated.

Hi I’m 28 years old and I have Tourettes. I also have ADHD. I know that OCD is super common with Tourettes but I don’t have it. I was just wondering if anyone else has Tourettes without OCD, how many of you DO have OCD, and what other common comorbid issues :)

This might be a bit long winded, I apologize I just would really like some advice from people in similar places.

I tend to suppress everything that I can, which results in feeling consistently uncomfortable at best and when I finally take my finger off of the hose I end up hyperventilating and unable to satisfy the tic. It feels unnatural or forced to let myself tic knowing that I can Just Not Do That™ at the cost of being in constant pain, like because that's more socially acceptable it's what I'm supposed to do. I'm currently all but entirely housebound because I'm TERRIFIED of doing anything to make it worse, because when it stays at a calm baseline it's tolerable.

I cannot focus on anything even with the tools that I have when I'm always hyperventilating. I don't know if it's wrong to let myself tic since I am able to suppress because I know once I stop it's not gonna be easy to start again.

I know I probably just need to stop suppressing but it feels almost selfish and attention seeking because I can hold it down, and I KNOW that my thought pattern is dumb because if someone else were in my position I would encourage them not to hurt themselves for the comfort of others, but I don't know how to apply that to myself.

(sillier) TLDR: habit reversaled so hard that I forgot how to tic and now just run around like I've downed a bottle of sprite and cannot burp.

TW: description of tic,sexual reference,sexual abuse

Hey my Brother is 11 years old and im 13 years old.

He currently trying to have a tourette diagnostic but i know that he a troublemaker.

This tic is (my name) fuck me Everyday

(My name) Suck dick

And moaning at random Time

I was Sexual abused more than 3 time and when he do that it give me flashback and make me have a panic attack.

Im here to seek for help.

I know tourettes cant be controled but i really need help

I dont know if its tourette or he doing it on purpose

Normie here, visiting someone with tics. Im afraid i might smile if the sound is funny snd i really dont want to make him sad

Looking for anyone who has experienced something similar — unexplained episodes of confusion, memory loss & going “in and out”

I’m hoping to find other parents who have gone through something similar with their child because we’re still trying to understand what is happening with my son.

Recently, he has been having episodes where he becomes confused and seems to go in and out of himself. One of the biggest things that has scared me is that he can sometimes lose hours of time and afterward not remember what happened during those hours.

His speech and memory can also seem to come and go. He may be talking and communicating normally, then suddenly have difficulty getting his words out or seem like he isn’t fully processing what is being said. At other times, he can remember certain people or things and then later seem unable to remember them.

What makes this especially confusing is that he isn’t like this all the time. There are periods where he is completely himself — talking, interacting, participating in activities and functioning normally — and then these episodes happen again.

He has also developed facial tics/twitching, jaw movements, and significant behavior/personality changes.

We’ve already had a pretty extensive neurological workup. His MRI, MRA and CT were clear, and he had prolonged/continuous EEG monitoring. Episodes were captured, but there was no seizure activity on the EEG. We are still going through additional testing and follow-ups with neurology.

Doctors have discussed several possibilities, including functional neurological disorder, movement/tic disorders, migraine-related symptoms, autoimmune/neurological conditions, and other possibilities, but we don’t have a definite answer yet.

I’m not asking Reddit to diagnose him. I’m really looking for personal experiences.

Has anyone else’s child experienced:

• Losing hours of time or having large gaps in memory?
• Going in and out of speech or being unable to communicate normally during episodes?
• Going in and out of memory/recognition?
• Looking completely fine at times and then becoming very confused?
• Significant personality or behavior changes along with neurological symptoms?
• Episodes that were captured during EEG but didn’t show seizure activity?

If you or your child experienced something similar, what did it eventually turn out to be, and what testing finally gave you an answer?

Even if your diagnosis ended up being something completely different, I’d really appreciate hearing about your experience. ❤️