I can’t stand my blepharospasm anymore. I barely passed my student teaching internship because of my twitching eyes. It’s a struggle to get anything done.

I can’t work as a teacher with this. I’m so sad. Just doing simple tasks is hard. I can’t take care of 20+ kids with this condition. I had 20 shots of Botox and it still doesn’t help.

I’m considering surgery. Is there anyone who has a success story and words of hope? I’m really feeling so upset.

I'm a newbie with cervical dystonia but I also have internal tremors everywhere now, started on one side, keep getting writers cramp, have a long history of cranial neuropathies (including trigeminal neuralgia , oromandibular and olfactory issues) am now getting head dyskinesia and am waiting to be evaluated by a neurodegenerative specialist.

I also have systemic lupus, sjogren's and ddd.

Is this normal for dystonia and/or Parkinson's?

I felt like it did when I first added it to my regimen but maybe it was a placebo effect. But curious if others have found magnesium to help a bit and if so, what form are you taking since there’s a couple? And how much do you take per day? Not expecting it to work miracles here, just maybe something helpful in combo with everything else I do.

Thanks!

A week ago I got Botox for cervical dystonia, about 3 days I started getting pretty bad muscle weakness in my neck. Last night I started getting headaches and it is starting to hurt to swallow and my esophagus just feels swollen/painful. I saw my neurologist today and he said unfortunately it will take 10-12 weeks for this to resolve since too much Botox was injected. Has anyone gone through this? If so was there anything you did to make it better?

This may be more related to my ADHD and other psych issues, but I'm really struggling with managing all these videos I've taken of myself and getting the clips to the doctors.

Does anyone have any tips for the technology part? Any easy to use tools? Do you edit them, or add bookmarks somehow? Do you put them on the cloud and send the docs a link?

It feels impossible when I start looking for representative clips. And I'm not even sure what is "representative." But I know they won't look through 5-10 minute clips, much less the longer ones I have.

The other factors are 1) I'm once again horrified to see what I'm doing, and 2) I'm worried that, once again, the docs are going to tell me it's functional.

Just thought that maybe if I had some suggestions or advice I can get over these blocks and get something sent to the specialist team to review.

I guess the other thing, if I wanted to fork out come $, is that I could pay someone on Fivver to do it. Anyone done that with something like this?

Thanks in advance.

Has anyone whose child has dystonia in the US found a physician they liked working with? We are on the west coast and currently unhappy with the care we’re receiving at CHLA. We’ll travel anywhere!

Dystonia

Panic during assembly

Neck contorting and twisting in a cruel ballet

Whispers of cruelty echoing through my ears

Evil sneers followed me around, looming over me

Self esteem depleting rapidly

Blunt unpredictably takes over

Walking without ease

Unesscary diagnosis, miscommunication

Watching eyes in class, no way to mask it

Waiting it out in a cubicle

Panic during former favourite activities

Losing out on prominent fragments of childhood

About 2 years ago a neurologist diagnosed me as having cervical dystonia. Since then I have had Botox (one with the diagnosing neuro, 2 or 3 at Mayo and 2 at Rush - where they have a great neurologist (Dr Patel)). And they are NONE of that did anything. I think I’m going to let Dr Patel do one more with a ton of Botox and then that’s it. I don’t know what else to do. I don’t think I want to do DBS.

I’ve been to see Dr Skinner at Mayo They said that the wrong muscles were involved to get relief from that. They said it had a 30-40% chance of working because they would have a very hard time getting to the muscles/nerves which seem to be on my right side.

I’ve considered the possibility that I don’t have CD. Like what if I just got used to holding my head this way torticollis with a twist) and now it’s just a bad habit to break. Is that possible?

I had to sell my beautiful horse because of this. I am still recovering from having to do this. I had to give up dressage because I couldn’t balance and it was so dangerous for me to ride.

Since then, I’ve done no physical activity at all. None. I was lifting weights three times a week and riding at least 3 days a week. Now the greatest amount of activity is going to the kitchen from my office and back - I work from home.

Oh! I now have no pain/zero - really. My theory is that is because I literally do nothing. That is the only thing that has changed. But this means that I wonder if this is real CD versus bad habit (like biting your nails). I can’t explain it. One more thing that makes the CD likely a bad habit.

I used to post a lot but I felt like a fake.

I can’t really drive at night because of the tilt. I think things to my right are uphill at night.

I go see Dr Patel on Wednesday. And m not at all optimistic. This will be the end of the road for anything to help me other than PT.

Yes, I know I’m lucky. Yes, I know I should be grateful for no pain.

I am just really down about this.

Ann

Am curious about how many others here are also a part of the lgbtq community, and find difficulty relating to other community members? Especially if you have been a part of a support group?

In the 20+ years I have only met 1 other person from the community that has dystonia too.

Hi there! Anyone who has dystonia and does scuba diving? How’s the experience?

Hi. I was recently diagnosed with CD, specifically Torticollis. Been dealing with this for almost 2 years with no relief. Muscle relaxers and PT did nothing. It tightened me up even more. I got my first Botox shot 10 days ago, and just started replacing my baclofen with Clonazepam. Today I finally feel the most relief I have felt in a long, long time. Went out and got a hair cut, was able to drive. Long ways to go but wanted to share my story so far, sad as i was very recently in a very dark place dealing with this disorder

Hi, so I have some questions I guess abt dystonia. I'm not currently diagnosed but I'm going to talk to a doctor soon. My first question is, Can Dystonia get worse over time? Second is, Can dystonia look like a tics disorder like tourettes? It feels like I'm constantly twitching or like my limbs will jolt and so does my head, it jolts back alot or to the side. So yeah idk if this is part of dystonia or anything [I'm pretty sure I don't have a tic discord so for this question answer just based on me possibly having dystonia and nothing else contributing] Another question is, can dystonia cause like really bad cramps in the stomach or ig abdomen? I have cramps there daily and it always lasts for like, forever and it's super annoying, so could this be a dystonia thing? It typically happens after I move a lot or do stuff where my stomach is involved, like workouts and such. Fourth question [ik a lot of questions, I'm so sorry I'm new to like even knowing dystonia exists and have a ton of questions], anywho, fourth question is, What mobility aids do people/yall use [if anyone uses one] to help with their dystonia? I've been looking into mobility aids and I'm just wondering what has helped people in the community the most, also service dogs count] if you have a service dog,what do you train them to look for or like trigger you for? I know the previous question is mainly preference so I'm not looking for a clean cut answer on that one, or any of these really.

Answers would be greatly appreciated and I want more education on dystonia aswell so I'm for sure open to any information yall have with dystonia! :D

My wife has Cervical Dystonia.

A year ago she suddenly was unable to lay down without her neck spasming. She had to start falling asleep sitting up. Was no fun.

Within a month she starting spasming at all times. She had to stop driving and working. Our lives changed dramatically. It was rough.

She started getting meds and Botox from a Neurologist. They didn’t do much. She was still spasming constantly.

I signed her up for Dr. Farias’ videos, but she had trouble doing them and they didn’t seem to help.

After several rounds of Botox, we were feeling like nothing was gonna work.

I signed her up for an online seminar with Dr. Farias. Tbh the seminar itself didn’t help much, but it did encourage her to start doing his video exercises everyday - even if she could only do a bit at a time. That was 2 months ago. She has done them religiously since then and she is a lot better now.

Her neck hardly ever spasms, and she can lay her head down and it doesn’t move. We can finally go out and do stuff.

I just wanted to let you guys know that there are people out that are getting better. They just don’t always post about it. If my wife can get better, you guys can too. Don’t ever give up hope. You can rewire your brain 👍🏻

Hi, So i sort of have an unofficial diagnosis by a neurologist of paroxysmal dystonia. Said it sounded likely from how i described my symptoms - episodes brought on by psychological stresses and sleep deprecation and illness - but as no video evidence couldn’t officially diagnose. Anyway, as they were so infrequent, wasn’t worth treatment, brain MRI was normal and I was discharged.

As time goes on, still having infrequent episodes yearly and just sort of went with it. Until last year, I ended up having 4x the amount of episodes - had a lot of stress in life, mental health was worsening and now had flare ups of chronic pain which seemed to exacerbate the amount of dystonic episodes. Went back to GP and got another brain MRI - still normal - and referred to neurology by my physiotherapist. That was in June 2023..still no appointment as of yet. Have chased it up numerous times and been told they have no idea when i will be offered an appointment.

So, my symptoms include jerking and twisting movements just in my torso, arms and hands. I am conscious with these episodes and can talk but it is hard to get words outs as my body is sort of twisting, contracting and having spasms - so sort of make grunting and gasping sounds sometimes . They last about 10-15 mins, and i have aching pain after and feel extremely exhausted and have to nap. Comes on when i’m resting position and is mostly unpredictable until a few moments before it starts where i can feel my muscles tensed and body feels weak. I do have body twitching a lot and this is pretty much daily and very frequent but not hugely noticeable to anyone but myself.

Can anyone tell me if this does sound like a type of dystonia and if they have similar experience with it and what their treatments are like? Would be very appreciative of any responses 🙂

Hello, could some of you share your symptoms with vegetative dystonia. I'd like to know if any match up with mine

I have focal dystonia that isn’t responsive to medication or Botox. I was diagnosed at 14, and am 27 now and desperate.

I’m about 3 hours away from the Cleveland Clinic and saw that they offer selective denervation in cases where it’s warranted. Mayo already said DBS would be a likely option for me since nothing has helped, but I’d really like to avoid brain surgery if at all possible. I have family in Texas and went to UT Southwestern, where they also stated that DBS was worth considering.

I was curious to know if anyone had any experience with or knew of anyone with denervation experience. Just curious. I feel like DBS is on the horizon for me, but am grasping at all the straws to try to avoid it!

(kinda vulgar, im not like this, im just mad asf) Ok so, I am about to go into my senior year of high-school and i literally just figured out I had dystonia in my sophomore year second semester. In freshman year though I had a weird numb out of control feeling in my fingers and I thought it wasn’t much until I generally had the worst dystonia episode in my LIFEEEE. I literally twisted my whole body and each limb. I knew something was wrong.

I am just now seeking help from neurologists because my fuck ass grandma (love her but what the fuck) thought i was doing drugs when she seen me have an episode for the first time (i got involved with some drug scandal at school but i would never.) so she didn’t fucking believe I had to see a neurologist…

when i first looked up my symptoms, I literally looked up “body movements out of my control” and couldn’t find shit until I searched deep and hard to find something that I was experiencing

I hid it from my family so long because it embarrassing and they are just high-key weird about stuff like that so I only told like one friend.

I hate to say I have an ego but I low-key do and not only does this embarrassing ass disorder make me wanna fucking jump off a bridge (i wont, i love my friends and family) i know this shit is going to be a struggle getting some actual help so i decided to join this reddit because lol why not, i need to get into a community and safe space with people I can relate to because at the moment no one fucking gets it.

I think my main question is, how tf am i going to get over the embarrassment ?

I have genetic one-sided dystonia. I've had symptoms for 3.5 years and journal and track what meds/foods/etc. that I have been taking in case anything unusual pops up so I can update my doctor. I had noted 8 months ago that I had a reaction to a processed protein shake. Something in the shakes caused a flare up that was more severe than is typical for me - affecting my abdomen, neck, speech, severe fatigue, inability to walk, and numbing in my right arm & leg. To confirm it wasn't something else unrelated I drank another shake 2 weeks later and had the same symptoms. At the time I just noted this as odd, stopped drinking the shakes, and noted down the ingredients. Last Wednesday, I had the same symptoms again. The onset timing was the same as with the shakes, about 30 minutes after ingesting them, but this time it was a protein infused yogurt cup. The only ingredients that match up between these two products are "milk protein concentrate" and "whey protein concentrate", which seem to essentially be the same thing. I can't find anything online that relates to this. Pre-symptoms I used to drink these same protein shakes and don't have any reason to believe I am allergic. Any thoughts?

Hi! So I haven't been diagnosed with dystonia but I am skeptical that I might have it due to things I experience and some people in my family having it. I have a question. Is my hands and feet/leg going numb and tingly or having pins and needles a possible symptom? And I don't mean like when you loose circulation for a second and your like feet or hands "fall asleep", It will happen while walking or whole just resting, it makes it so walking and just moving my foot or hand is really difficult, so like they don't necessarily lock but moving them is super difficult.

I just wanted to start by saying I see a neurologist this month but I’m scared and doing my own research in a small attempt to ease my mind. I have post concussion syndrome and adroit a week or two after I began having one small involuntary movement in my jaw. It was only at night time I didn’t think much of it. I’m about 5 months that turned to full body twitch, dropping and throwing items ect. And now my fingers are getting ‘stuck’ it feels like a cramp but it’s uncomfortable to move my fingers be it goes away quickly. And I find in my thighs they are often tensed up I have to really think to undo it. I’ve also see to lost fine motor skills in my arms. If I’m using my hands my arms suddenly jolt forward uncontrollably.

Is this similar to any dystopian progression? Like I said I’m just a bit scared I’m supposed to be applying to nursing school and getting married. Now I’m dealing with not being able to control my body and have had zero answers for 5 months. Any help or opinions would be appropriated

I’ve seen mentions of the Tampa movement disorder clinic and I finally looked it up. I found the USF Health clinical program for Movement Disorders and Parkinson’s Disease as well as Tampa General Hospital’s Movement Disorder Neuromondulation Center. Does anyone have first hand experience with either of these places? The USF Health has horrible reviews but most make comment on their rude receptionist which honestly I could deal with if I was actually getting beneficial treatment.

What the fuck does anyone do in such a situation? This thing fucked me out of my job. I can’t work any normal job cause my symptoms vary each hour or so I can’t even commit to an actual schedule. I can’t drive cause I had several close calls thanks to my neck fighting me in the middle of driving. I can’t get disability cause I have moments where I can do just about anything like lift weights (but only on a good day or when there is no symptoms, but that’s totally random and I have no control over it)

I was supposed to be referred to university of Oregon next as no one in Hawaii seems to know what to do but holy shit, it’s been months now and this is going no where. I’ve gotten close to nothing since I’ve been diagnosed.

If I was 100% completely alone on this I would straight up kill myself at this point. I’m fucking done.

Hi everyone, I was diagnosed with cervical dystonia last year by my neurologist. Do others have other chronic issues that accompany it? I have ehlers danlos, pots, median arcuate ligament syndrome, small fiber neuropathy, restless leg syndrome, interstitial cystisis, sciatica, mcas and now they think endometriosis.

I’m just curious if others have any of the same issues. I recently attended a panel where endometriosis was causing a lot of referred pain and tightness in the neck as well as being adhered to the autonomic nerves and causing dysautonomia. I have a lot of theories of how my comorbidities are interconnected but I don’t hear about CD vs EDS/POTS/MCAS which are often grouped together.

Back in 2020, when I think of my neck twisting to one side, my mind would command it.

It never does it involuntarily, only when I think about it. I have looking for the correct term for this for years and I finally came across the term today and I'm not sure if I have it.

For context, if I think of my neck twisting on one side, my brain would command it and it would stay there for a few seconds and I could reverse it. Is this an early sign? I'm scared guys.

I am in the worst pain I have ever been in for the past ten years of having this disorder bc of the rain - I just can’t take this anymore sometimes