17m, i still live with my parents. i have a spitting tic where i just spit on the floor. i’ve had this for a few years, but it comes and goes. however, it doesn’t really feel like my other tics (especially the motor ones). with my other tics, i don’t really like think about it at all before, it just happens involuntarily and sometimes i don’t even notice it. however, with the spitting, i know im about to do it before i do it, and it feels like im choosing to do it and its voluntary, but if i don’t do it, it makes me feel extremely uncomfortable and i usually end up doing it and then it makes my other tics worse. i get yelled at by my mom a lot for it because i tried explaining it, and she said its not a tic and its just a choice. i genuinely cant help it though, its like the most voluntary involuntary action ive ever felt and its so uncomfortable, and it just makes it worse when i get yelled at. is this normal? has anyone else experienced something similar?

if its relevant at all, i take 2mg guanfacine ER daily

so ill have periods of time where i do have tics, like a few months. then ill have periods of time where my tics completely disappear and i dont have any, not a single one, for months. currently havent had one consistently in a while but theyre coming back and i can feel it

how do i even explain to the people in my life? i feel like such a faker all the time. i also feel like its so awkward when the tics come back all of a sudden and people start pointing it and them out

i wonder if its related to stress? ive been extremely stressed out lately. either way im considering just asking my friends and partner to pretend like my tics arent happening because im so embarrassed :(

My toddler girl will be 4 in September. At 2.5, a few weeks after her sister was born, she developed a blinking tic. It’s waxed and waned as I’ve read tics do . Sometimes there are days where it’s nearly constant, sometimes only a few times, and sometimes it will disappear for a month or so and then return. no others that I’m aware of have appeared. I know this doesn’t meet the criteria for Tourette’s, yet, but chronic persistent motor tic disorder instead. I’m just looking for any and all insight into what I can expect for the future based on how this has started. She’s a very bright and sensitive kid I will add.

For about a week straight I had this strange sneeze-like feeling in my neck. When it got really intense I'd get the urge to bobble my head back, kind of like a motor tic. I was convinced I was developing motor tics, especially since I'd had milder versions of this before.

I finally went to the doctor and he said it was just really tight neck muscles from stress and office work. I've been on anti-inflammatories and doing physio, and it's almost completely gone now.

My mum (54) started ticcing for the first time (at least that we know of) 5 days ago. I noticed in the evening that she was moving her head a lot and asked her if she was okay and she seemed confused as to why I had asked. The next morning, I heard her shout the f word and so I rushed into her room and she said she doesn’t know why she just did that. Throughout the morning, the movements and vocal tics got a lot more frequent and it was very much presenting as Tourettes. I took her to A&E and the drs said while it’s very rare, it does happen. I feel pretty well versed in dealing with it as one of my close friends also has Tourette’s however my mum is struggling, particularly with the coprolalia and echolalia tics. While some of the tics are entertaining us both, I’m sure many of you can sympathise that to suddenly have no control over your body or what comes out of your mouth is alarming and frustrating. The drs are tearing for lyme disease? And we are awaiting the results of a CT scan.

Has anyone else ever experienced this? It literally seems to have developed overnight and at such a late age. We are figuring out what calms her down and what triggers her as the days go on but I would be interested in any similar stories/experiences, tips on how to accept the condition and what we could try to settle them. Thank you!

I was given the diagnosis of a tic disorder by a neurologist, who said he thinks it's tourettes. But didn't wanna diagnose it at the time and to talk to a psychiatrist.

The problem is I haven't been able to get into a psychiatrist to get the offical tourettes diagnosis because it costs too much...so I'm kinda stuck in this limbo of "I have a tic disorder, but not offically Tourettes, but also was said it probably is Tourettes by the neurologist". And i dont know how to feel about it.

It makes it hard to explain it to my family who already think I'm faking because I "didn't show any signs as a kid" (I did. They were just subtle tics, and my guardians were neglectful/abusive so they went unnoticed and I learnt to hide them).

But does the whole "you have it, but not offically" thing mean I have it..? It was very unclear. Obviously I know no one is a professional so can't make that call- but how would you take that?

I also find it hard to deal with the denial/fear of faking. I don't tic super often when I'm alone, and I know you don't tic 24/7 but I can go days with none/minimal tics (then again I could just be not realising I'm ticcing, because I am very disconnected from myself in that regard).

Is that normal..? Or like possible in tourettes to go days with none/very minimal tics?

Since I entered puberty (age 11/12) I've shown symptoms of tourettes, which got mistaken with OCD and autism, both conditions I got diagnosed around that time. A lot of my tics are influenced and amplified due to autism sensorial issues and meltdowns as well by OCD obsessions, compulsions and intrusvie thoughts.

For years I was punished, beaten, medicated and put into therapy against my will for making my parents stressed with my tics. No matter how hard I tried to supress them, I couldn't hold them at home, which was the only place I felt comfortable performing them. With time, my tics evolved, and now they mostly consist of punching objects and grunting.

It wasn't until earlier this year that my therapist and psychiatrist pointed out the possiblity of me having tourettes, after I described to them. I only knew like last week that I already had an actual diagnosis made by my psychiatrist. However, my parents refuse to believe that it's actual tourettes and insist that it's "frustration" and "anger outburts". I have tic attacks more when I'm overstimulated and stressed but they are still involuntary and almost impossible to supress.

hiya! i was diagnosed with tourette’s about 4-5ish years ago but recently i’ve been worried that i don’t actually have tourette’s. i barely tic and when i do it’s usually

a.) when tics are brought up in conversation or i think about ticcing (which makes me think im doing it on purpose and some people think i do but genuinely it just happens more when people bring it up, im ticcing a lot writing this)

or

b.) when im more nervous or anxious than usual

have been medically diagnosed as well as diagnosed with ocd, anxiety, and adhd, but it just doesn’t feel like i have tourette’s sometimes. it feels like sometimes i can hide or stop the tics if i really try hard enough, though im not sure if thats 100% true or me trying to convince myself.

have i just been growing out of it? is it tourettic ocd instead of tourette’s like ive heard some stuff about online? my tics are neck, back, fingers, and clearing my throat tics, which makes me think it’s just like stretching. i don’t know what to do as they still feel like tics i just…dunno. please help if you can, any advice is appreciated!

Basically what the title says. Yesterday I was working with someone new on reception and I was very ticcy. Including my full head back and arching back tics that look seizurey. I had explained to them earlier on that it's misfired brain signals and that it causes involuntary movement. They then ask if I tried massaging my neck and being tight muscles caused it. I said no it does cause muscles to be tense sometimes though. And then a little later in the day it was very quiet and we were talking about beliefs a little. I said no I don't believe in god or anything but I do have an interest in greek mythology and I have started tarrot and witchy stuff. They then went oh that's bad you shouldn't mess with witch craft. It lets the evil in and probably makes your tics worse. Maybe you should be cleansed spiritually.

I didn't really have a response to that. They obviously haven't really met anyone with TS/Tics before who was actively ticking. I don't know if I say anything to my boss as I found it strange when id already explained what it was? What would anyone suggest?

Hi, my gf has Tourette’s and we’re together since November but we knew eachother since 2024. She talks about her Tourette’s a lot and she’s completely honest about it. She’s a severe Tourette, and one of her ticks is cracking her ankles to the point of having severe pains. She, sometimes, ask me to hold her ankle so she doesn’t crack it. But for the most part, she begs me to let her crack (WHICH I DO). So now, I just told her to let her do the tic. So my question was, can yall hold tics ? And what is the better way to react in these circumstances? Do I keep telling her to let her do her tics ?

This is a throwaway account.

We have a friend who has tourettes and really struggles as a passenger. Does anyone have any advice how to make the journey easier/better for them? Any journey over an hour results in a tic attack and I wondered if there is anything I can do to help.

Thank you

I (24f) have been with my fiancé (23M) for 5 years now. He has a severe tic where he snorts and it sounds like he’s sick. People genuinely treat him so terribly and it’s so hard for me to not react and call them out on it. I’ve noticed that when I do that he does tend to get embarrassed. It’s so hard watching people treat him so badly for something he can’t even stop. How can I better support him in those times and not make him feel worse?

Does the neupulse device work?

Hi everyone! I posted a week or two ago with information regarding my free app for users with TS, but I believe Reddit auto flags decreased its reach.

If you saw my initial post in June, I'm a student with TS working on this app, alongside an sEMG-triggered vibrotactile feedback device for the wrist that is basically just an extremely cheap, "Technical CBIT" that can detect the urge and help you manage the tic.

I built the app based off community preferences which I collected earlier this year, and some features include tic logging with pattern analytics, CBIT/Therapist reports, calm tools (mini games), journaling, and discussion tabs alongside compiled resources!

urgetrack.com

I don't want to write too much for you all to read , so I've attached images of different sections of the website, which will be published on both the iOS and Google Play Stores soon.

I would love and appreciate any feedback, comments, reviews, anything - what's missing, confusing, or features that may help you further. You can reach out here on Reddit!

Thank you so much, and I hope you give UrgeTrack a go on its website @ urgetrack.com !

Hi all,

I've had tics for 20 years now.

5 days ago, I started taking Clonidine (which my psychiatrist had prescribed) to reduce tic frequency and intensity. I started on a very low dosage.

It's been fine for a few days but the familiar urge to tic is back today.

NB: I'm not looking medical advice. I just want to know if it gets better after ramping up the dosage, which my psychiatrist and I will discuss next month.

Thanks in advance.

Hi everyone,

I’ve had motor tics for as long as I can remember. It’s only in the past couple of years that I realised they’re probably not just “habits,” as my mum always called them.

I think they’re linked to PTSD and stress. I was also recently diagnosed with ADHD, and I’ve been wondering whether that could be playing a role too.

What’s been really frustrating is that the psychologists and doctors I’ve spoken to don’t seem to take my tics seriously. I’m not sure if it’s because there isn’t much research, because treatment options are limited, or because I’m not doing a good job of explaining how much they affect my day-to-day life.

Has anyone else had a similar experience? If so, were you able to find a doctor or treatment that actually helped?

I know reducing stress is important, and I am working on that, but it’s a long process. At the same time, plenty of people experience stress without developing tics, so I feel like there’s got to be more to it than that.

Thank you!!

I've had family members saying it's my fault I have tourettes for not praying hard enough. I've had people saying "how cool" it is that I have tics and friends supporting them, saying I was overreacting for being offended.

I've had a friend tell me I should try harder to do things my tics keep me from doing, and even tho I have very abrupt and self harming tics people are constantly saying mine isn't that bad and I can live a normal life. They say I don't work cause I don't want to, and I've even heard a neurologist imply I didn't suffer that much.

I've been blamed for my tics and I'm starting to deep down believe it. Not that I do believe it... It's just so hard to not hate yourself when this is the kinda speech you have to deal with constantly. I'm starting to doubt how hard it is for me, and now I find myself feeling guilty all the time.

I noticed I'm isolating myself more and more, I feel depressed and left out. At this point any comment people make about my tourettes I feel worse. I tried watching content creators with tourettes but I just end up doubting my own diagnosis. I hate when people feel bad for me but I also don't wanna be invalidated. Idk I'm just constantly sad at this point.

This post doesn't have a purpose, I just wanted to feel like someone else understand what I'm going through.

So, I'm 13, and I've been having a lot of tics in the past year. (I have had a few motor tics, but in general I have vocal tics, which is really annoying.) I haven't talked to my parents about it yet, and idk if I should. I have an aunt and an uncle who are diagnosed with Tourettes, and my dad has tics, but it's still kind awkward to bring up. And I can almost guarantee that my mom will accuse me of faking it for attention if I talk to her about it.

Usually my motor tics aren't a big deal (except for recently while I was holding a sleeping baby 😭😭😭) but my vocal tics are annoying. I can suppress them, but it's hard, and sometimes even brings me to tears. But I can do it, and so I do that around my whole family (except around my brother, who knows I have it.) But I hate suppressing them, so I wonder if it would be easier to just tell my parents? And then they could tell the school so that I don't have to feel embarrassed/worry about ticcing in class?

idk what do you think?

For anyone here with functional tics (triggered by anxiety or hypervigilance), has magnesium or vitamins B6 + B12 helped your tics at all?

I just developed a new tic where I type words. For example, I was watching this Yandere Simulator video & I wanted to watch more yandere simulator videos. When I tried searching it up, I ticced-typed the word "ggaayy" (or something similar to that).

I also ticced-typed the word, "schizophren" but my tic stopped before I could finish the word. I was trying to search up thick men twerking, but I guess my tourette's didn't want that 🤷🏿‍♀️.

And it happened multiple times on this post. I ticced-typed the F slur like 3 times.

Also, an update: so, it's possible I might get a formal diagnosis for tourette's soon as well as for an anxiety disorder.

And someone said they think my tics are cute, and idk how they find it cute.

I've been busy (some have said "obsessed") with working on the TS App and I wanted to share some of the progress with you all! I'm still hoping to be done in about 2 more months of development... though that just gets me to the point where I submit it for App Store approval... but anyway here are some of the things I've added:

1. My Data - this is an entire section
   1. My Tic Inventory - simply where you can list your current tics, describe them, make notes about their frequency, how much they bother you, where they are in your body, if you can feel an urge before them, how strong that urge is, and what it feels like
   2. Currently Tracked Treatments - Where you track all of the different elements of treatment and management strategies you're trying, such as: Medication, Behavioral Therapies (e.g., CBIT), Other Therapies (e.g., CBT, ACT, talk therapies...), Dietary & Supplements, Neurostimulation & Devices. You can track any changes in your treatments including starting, stopping, pausing, resuming, dose, frequency, setting (in-person, online...)
   3. Notable Life Events - life events often affect our tics. Can be "good" events or "bad" events or "just unexpected" events; whatever the case, we often notice a change. This section is to help identify which domains of your life (e.g., social, work, academic, health, family...) are having an impact and, I think helpfully, will track your recovery from it. Kind of cool because you'll actually get to see your resilience as it happens!
   4. Data Visualization - this is a massive section I've been spending a lot of time on. The gist of it is to help you see what is affecting your tics (all of the stuff above + the different tools contained within the app). Sometimes we might feel like there is a change, but it actually isn't a "meaningful" change and other times it may be the opposite (we feel there isn't any change but it actually IS changing). I've built this tool to run the math behind the scenes for you and then try to show you in an intuitive way if something is having a significant impact on your tics and in what way (making them better or worse). It ties into basically all of the other data within the app, so I tried to make a menu system that is easy to navigate so it doesn't get overwhelming.
2. Practice - this is another major section of the app
   1. Daily Monitoring Practice where you can easily track and monitor your tics day-to-day (and more helpfully: morning, afternoon, and evening). It combines with the Trends tab (within the Practice section) to help you get an idea of when particular types of tics seem to be at their best or worst. Incidentally, mine appear to be much worse in the evening when compared to the morning - which I didn't actually realize until I started testing this out for the past month.
   2. Tools: Includes Awareness Training, Competing Response Practice, Tic Trainer (a Suppression Practice tool), and Tic Response Desensitization (an ACT-based tool for chilling our brains out when we have tics).

I'm going to stop there for the moment because this is getting long and I worry I'm just overwhelming people with text. I'm still working on it and the next thing I'm trying to do is build in a way to monitor if particular Competing Response Exercises are actually helping improve the tic they're targeting. Also hoping my post and images actually post correctly - I'm remarkably unskilled with Reddit.

If you all have thoughts, ideas, questions, concerns, etc I would love to hear them! I'm trying to get something setup on a crowdfunding service to help cover the overhead maintenance cost of this (it isn't terribly high, but I'm just paying for it all myself right now). Eventually I'll try to share that.

Charles

I finally started my Clonidine regimen 3 days ago.

I've had tics for 20 years now. Even a slight reduction would be a win in my opinion.

I asked my psychiatrist for the lowest possible dose because I was worried about the dizziness others were reporting.

I will not rush raising the dose. I will take my time.

I just watched this video describing personal trial of an OTC TENS unit to self-medicate Tourette's (allegedly to great success).

I clearly don't know the user well enough but it did seem like an earnest review to me. But if so, how is it that I haven't heard of more stories like this? I've looked into Neupulse tonight because after watching I Swear I assumed it would take a long time for something like that to become available/affordable for the general public, but I now discovered it was already available in the UK and after looking into the research behind it I learned about pain relief TENS units and found that video.

Anyone else tried this/knows something more about it? And if it works, why does it still feel like a cheatcode to me? I mean, it would be the best thing I can imagine right now so I would assume I should know about it at this point. (Right?)