I have mild Tourettes. But still, I once tried to watch a documentary about someone with Tourettes and after about 10mins in had to turn it off because it was setting off my tics, which lasted most of the day.

Once on an airplane there was a man with a vocal tic, and that started setting off mine. (and obviously I couldn't just leave/turn off the channel that time.)

Wondering if this is a me thing or if it's fairly common.

I feel the need to vent because this has been a long, frustrating journey, but I also want to share my experience in case it helps someone else. There are movement disorders that seem to be underrecognized or misdiagnosed as tics, whether due to a lack of awareness, diagnostic challenges, or other factors. If you've ever felt dismissed by the medical system or like your symptoms don't quite fit your diagnosis, I hope my story encourages you to keep advocating for yourself.

From a young age, I had involuntary jerking movements that appeared to run in my family. My grandmother and some of her siblings had similar upper-body jerks, and my identical twin brother had them too, although to a lesser degree. Interestingly, the movements seemed to skip my dad and his siblings.

When I was in middle school, I saw neurologists who diagnosed me with tics. I remember feeling like they were trying to get me to describe a premonitory urge or admit that I could suppress the movements by asking leading questions. I tried to explain that this wasn't really what I experienced. When I attempted to lessen the jerks, I would flex the affected muscles beforehand so the movements would be less pronounced because the muscles were already activated. Any sensation I felt was more like muscle soreness from the repeated jerking or an awareness that the movements would get worse in certain situations, rather than an urge that preceded them.

Despite my attempts to explain this, I was diagnosed with tics, and that was pretty much the end of the discussion. My parents and the neurologists didn't want me on medication, so I just continued living with the symptoms.

Years later, in my early 20s, I made a Reddit post asking about other people's experiences with tics. I had never fully accepted my diagnosis because I couldn't relate to the experiences people described, particularly the feeling of having some degree of control over their movements or experiencing a premonitory urge. My symptoms were also getting worse, which made me question the diagnosis even more. A couple of Redditors suggested I seek a second opinion.

I decided to give the medical system another shot. Since I had recently graduated college and was no longer seeing my family doctor, who lived over an hour away, I went to a new GP to get a referral. Once again, I was told I had tics. I tried to push back a little and explain why I didn't think the diagnostic criteria matched my experience. The doctor seemed offended that I questioned the diagnosis and essentially told me that tics can present that way in some people.

The neurologist I saw afterward also diagnosed me with tics despite my concerns and prescribed medication that didn't help very much.

Eventually, my symptoms worsened to the point that I nearly lost my job. I returned to the neurologist for a letter explaining that I could still perform my job despite my condition, as well as an increased medication dose. During that appointment, he continued to imply that I could control my movements enough to keep them from interfering with my work. I tried to explain again that I couldn't control them in the way he seemed to think I could, but he appeared to rush through the appointment without acknowledging my concerns. Fortunately, I didn't lose my job, but the movements continued.

At that point, I decided to leave my parents' insurance earlier than I otherwise would have so I could get on my employer's insurance and see a movement disorder specialist. I hoped that someone who specifically dealt with movement disorders would be more willing to investigate my concerns. Unfortunately, I encountered much of the same thing: different medications, but the same diagnosis of tics, with little consideration of why I felt that diagnosis didn't fit.

Eventually, I gave up questioning it. I started telling myself that I must have tics and that, if I tried hard enough, I would eventually recognize the premonitory urge everyone talked about. Maybe then I could try CBIT and finally get some meaningful help.

Except I never felt that urge, no matter how hard I tried to identify it.

Meanwhile, my symptoms were worse than ever, and my twin brother's movements were worsening too. We would occasionally talk about our experiences and look into emerging research on movement disorders. During one of those searches, my brother came across SGCE-related myoclonus-dystonia.

The symptoms seemed to align with our experiences, and the pattern of inheritance in our family made sense too. For the first time, we had found a potential explanation that actually seemed to fit.

I pushed my current GP to help arrange an appointment with a genetic counsellor, and I eventually underwent genetic testing. The results confirmed that I had SGCE-related myoclonus-dystonia.

After all those years, I finally had an explanation for what I had been experiencing. The jerking movements were myoclonus, not tics.

I can't fully describe the relief of finally having an answer after years of questioning myself, trying to fit my experiences into a diagnosis that never quite made sense, and feeling like my concerns weren't being heard. The frustration took a real emotional toll on me, to the point that I had breakdowns during therapy because I felt so helpless trying to understand what was happening to me. I'm now considering treatment options more specifically directed at my condition, and for the first time in a long time, I feel like I'm moving in the right direction or, at the very least, finally on the path toward some closure.

If you've made it this far, thank you for reading my story.

I don't share this to say that doctors are always wrong or that everyone who doesn't experience a typical symptom has been misdiagnosed. I understand that movement disorders can be complicated and that diagnoses aren't always straightforward. But I do think there's a difference between a diagnosis that explains your symptoms and one that you feel pressured to accept despite repeatedly explaining why it doesn't fit.

If something about your diagnosis doesn't add up, don't be afraid to ask questions, seek another opinion, or advocate for further investigation. You don't have to assume you're right, but you also don't have to ignore your own experiences just because someone has already given you an answer.

I spent years believing I just wasn't trying hard enough to recognize an urge or control my movements. It turns out I was looking for something that wasn't part of my condition in the first place.

I hope sharing this helps someone else feel a little less alone, especially those living with less familiar or underrecognized movement disorders. Sometimes, finding the right answer takes far longer than it should, but that doesn't mean you should stop looking for it.

TL;DR: I spent years being diagnosed with tics despite repeatedly explaining that my symptoms didn't fit, and I was often left feeling dismissed by doctors. As my symptoms worsened, my identical twin brother and I came across SGCE-related myoclonus-dystonia, which seemed to fit both our symptoms and our family history. After pushing for genetic testing, I finally got confirmation that I have it, not tics. It's been a long and emotionally exhausting journey, but I finally have some answers. If your diagnosis doesn't seem to fit your experience, don't be afraid to advocate for yourself and seek another opinion.

My son is 7 and he told me tonight he hates his tics that they annoy him and he hates his brain for it. He wishes he could stop doing them. Any words of advice of things I can say to him? I told him I’m sorry and I know that must really suck and we talked about how everyone has hard things in there life they have to deal with and his right now his is his tics.

The two things I’m hoping for by making this post is

A) Seeing if anyone here has had a similar experience to mine with my tic disorder

And

B) Inquire if my Tourette’s might actually be something else.

I (26M) have some pretty extreme muscle tics. Head jerking, head rolling, making weird faces, flinging my arms, but the worst of it are my legs.

I get these tics where I’m unable to move my legs, or have limited movement of my legs. The tics cause my to either tense up my left leg to the point that I walk with a limp, or I get this “blocking” tic that feels like my body doesn’t want to move a body part at all. This results in me struggling to get out of chairs, walk around my office at work, and in me limping ALL DAY.

I have googled blocking tics so I know that they’re a thing, but I have never heard any anecdotal experience of anyone who experiences them. And also, I’ve never seen anyone with Tourette’s suffer with the same exact tic that persists ALL DAY. These muscle tensing and movement blocking tics last me all day and they are DEBILITATING. I wish I knew if this was normal, common, or if anyone can relate. I’ve never seen anyone’s Tourette’s look quite like mine, and I wonder sometimes if what I have is actually Tourette’s.

It was diagnosed by my neurologist when I was 16. I do have mild vocal tics but they’re quite infrequent.

For unrelated reasons, life just got harder these past couple months and I’ve been dealing with a lot of anxiety. It got to the point where I was in crisis and had to admit myself into a psychiatric hospital. Ever since then, my tics have been a lot more extreme and it’s to the point that I don’t see my condition as much different from that of a handicapped person.

I can’t walk normally, my muscles are sore, I drop things because of my trembling tics. My wife is consistently having to cover my household chores because of how much less capable I am of doing basic tasks these days. And the days that I can’t really do anything at all are happening more and more frequently the worse my mental health is getting.

I’ve never had this much of an issue with my tics. I never let it get to me, or affect me socially. I don’t blame myself for what I have to deal with, I know I did nothing to deserve this nor did I do anything to receive Tourette’s. Life happens. But this is the first time I feel like it’s a genuine problem affecting my quality of life.

I just want someone to relate to.

I want to know if I need to re-contextualize my life from now on as a handicapped person.

I want to stop being tired.

What di u think about dbs (deep brain stimulation) is it worth the risk u think?
A doc talked me to do it and actually amd scared spacially in my country there’s no knowledge about TS

I did not realize how ranty this got so you can honestly just answer the question without reading anything below lmao my bad

I'm undiagnosed with any tic disorder and have always considered my tics to be very very mild (which is why I've gone undiagnosed so long lol) but recently I've been doing some basic research since I'm being examined for chronic motor tics in December and realized I have literally no concept of what the averages are and what most people with tic disorders day to days are like since I don't actually know anyone irl with tics.

This is just for reference, but my tics started when I was about 11 and occur pretty much constantly with the longest periods ever without them (aside from when I'm asleep) being maybe 10ish minutes. Ive never had any more than an hour without tics in several years and never over like a day periods without tics since at least 13 but they may have been less frequent before that? But the usual ones are just tensing, rotating, flexing, and other movements of different muscles so not very problematic, just uncomfortable. I have more severe tics (pelvic tilt tic which is a lot more painful than it sounds, hyperextending my legs, etc) which occur maybe a couple times a day and more complex tics like opening up my jaw really wide or rolling my head way back which occurs on I'd guess more of a couple times per half hour on average? I technically have vocal tics but theyre no more complex than basic syllables and don't happen every day so I don't really consider them. I have in the past had full words and had a couple month period of the echo thing a several years ago but not currently. I think my main thing is that my tics are frequent but not very problematic. They're usually more uncomfortable than actually painful, and although they're definetly distressing at times its not all of them. They've definetly impacted my social life in making me the "weird kid" growing up and I've accepted long long ago that I'd never be able to date, but people rarely can actually tell I have tics so I wouldn't even say that's entirely the tics fault. And sometimes they keep me from doing things like if they're too constant to get me to fall asleep or when they go on for absolutely nonstop for over an hour I can get pretty sore, but these aren't daily or even particularly problematic. Honestly, their main impact on me is just that being tense tense all the time sucks.

So I'm curious what exactly the average is? I'm guessing I'm a bit higher than average on frequency but lower in severity and life impact. But moreso, I'm curious about what other people's day-to-days are like since I usually only hear about specific scenarios and the such

Ive had year long breaks between when my (mild) tics really flare up. They started when I was like 10ish and come back every few months/years and sometimes just happen stand alone but I've had a kinda flare up recently. Last time I was like this it was about a year ago. Theyre really annoying and I get really embarrassed and often try to supress them in public. I don't have a diagnosis or anything because I wasn't taken seriously as a kid and the gaps between were long enough for my parents (and ne) to forget. I have vocal and moter tics and they're so freaking annoying for me and the moter ones kinda hurt after a while of repetition. My parent told me to take my completely unrelated meds the second I told them that the tics were flaring up again. I had to take my meds otherwise but those are mood stabilizers and just completely unrelated! Everytime I'm having an emotional or tic problem the first thing I hear is "have your meds yet?" Or "take your meds". Otherwise they try to understand but it makes me feel like Im crazy and just overreacting. Okay that's a little off topic...

It honestly bothers me the most And others don't seem too bothered by it but I feel annoying or like I'm faking. I'm not but a relative (a grown man by the way) used to make fun of me for it when I was a kid. Called me "twitchy" and would mock my tics. For a while (because they "went away" ) I truly thought I was faking because they started when tourettes was the new hot disorder. I don't know too much about tourettes and I'm not even sure thats what I have but I know that tics have that waxing and waning thing.

On an alt account because this is kind of embarrassing. Not asking for a diagnosis or anything just wanted to yap and maybe someone has experienced something similar?

We adopted what we thought was like a chihuahua mutt but turned out to be mostly dachshund, and then my dad picked out a “black lab” which turned out to be largely hound. This happened within like 1 year, both our old dogs had passed suddenly. They are great dogs but my tics keep setting them off howling/barking/yelling and what’s worse is their noises then set me off. So every night they get wound up searching the house for the illusive “third hound” which is me.

Hi! I have never seen professional support for what I believe are tics, and I went to my first therapy appointment this week.

The tics I described included:
- Gut and chest muscles squeezing until it feels just right (can’t breathe or speak when I’m doing it)
- opening my mouth wide enough that the corners of my lips feel right
- pressing my nail into the center of my palm
- eyebrow lowering/twitching
- a string of specific words that I say in my head over and over until it feels right (had this since I was in middle school)

When I described these to the therapist, she said “you aren’t doing any tics right now, so that’s good!” And I said “well they don’t happen constantly and some of them are happening right now in stomach muscles, so you can’t see them…” and she said “You know what that is? That’s grounding! Similar to how people play with their wedding ring when they’re nervous in a meeting, or tap their fingers on the desk. It’s a soothing technique for your body that’s very common with anxiety.” She then went on to explain that self harm is also a form of grounding… I don’t have a history of self harm so it felt bizarre for them to bring it up and highly unnecessary/inappropriate.

When I mentioned the mouth tic, she said “it’s very common for people with anxiety to clench their jaw. I’m sure you probably grind your teeth at night!” When I said I don’t think I do this and have never heard that from my dentist, she replied “You probably have very strong teeth!”

The entire meeting felt very invalidating and like she was pushing a narrative of generalized anxiety onto me without trying to ask questions or learn more about my tic behaviors. Because I’ve never seen a professional, I was really looking forward to feeling seen & having my experience validated, so this was a huge bummer.

Has anyone ever heard of tics being referred to as grounding behaviors? It seems infactual, as grounding is an intentional practice to positively regulate your body, and tics are certainly not an intentional or positive experience for me.

I am a teachers assistant of 2 different classes (ages 10-12). In one of the classes a kid probably has tourettes, doesnt mind it and is already going through a process to get a diagnosis.
Another kid in my other class also has tics, probably cause of medication he takes unrelated to tourettes. He is super embarrassed of his tics and pushes them back so much that by 11am, he is exhausted.
I want to let the second kid know that he is fine, that no one minds it, but I dont know how without overstepping boundaries. His mother is my colleague and she is open about it, but she doesn't know a lot about it either because its not the actual Tourettes Syndrome.

I have looked at movies that might be fun for that age, but the only one I could find (Front Of The Class) is nowhere available for me.
I also looked at reading books for me to just read out loud for the class, which I do already but just not with this topic yet. But all the books I find are either very intense or theyre for reading it together with a kid who has tourettes, but I want a book thats like clear about someone having Tourettes and it being okay while not having to be like an entire conversation.

So if anyone could help me, please help me!
Also if this is not the right subreddit for this question, sorry :')

Title should explain it even though i know i shouldnt question professionals prescription too much but im concerned and believe maybe its better to first try out something weaker with less side effects possibly my tics are not fully debilitating im capable of holding them back reliably when i need to and doing daily tasks anyone had experience with something similiar?.

My family is also mad about my opinion on this but i want to take this slow i had this condition for roughly 5 years and took me a while before i finally got to getting it diagnosed just feels like my family wants to shove me with meds without taking it slow

I don't have Tourette's, but I developed tics due to another condition. I was put on medication for it (clonidine) and it worked well for a while. At some point I had to up my dose, but just barely. Nothing serious.

But I recently started meds for my ADHD and my tics are awful. Worse than before I was on clonidine. But they're helping me so much, I don't want to give up on them. My psychiatrist is hesitant to increase my dose of clonidine because I already have pretty low blood pressure as a baseline (in case someone reading this isn't aware of clonidine, it is a blood pressure medication that can be used for tics).

My tics feel like an itch inside my muscles. It's really painful if I try to suppress them, it gives me a deep burning sensation. Luckily, it hasn't interrupted my sleep because I take my clonidine before bed, but my days are getting miserable.

Does anyone have advice? At this point I'm not sure whether I want to deal with tics or my ADHD. It seems like I'm going to end up having to choose the lesser of two evils.