r/Dystonia

Is it normal to take clonazepam or diazepam for long periods of time? How long have you been on them?

I was seeing a prior neurologist for years. We tried several medications. What was helping me was botox and baclofen. Literally was only at 30 mg a day so baclofen was not even at therapeutic levels.

Fast forward to now with a new neurologist due to the length of drive to the prior one. New neurologist refused my current prescription of 10mg baclofen 3 times a day and gave me just 10 mg once a day. His note he left was "we can discuss why at your next appointment" which is over a month out.

Anyway, feeling very defeated, unseen, irritable. I guess I'm back to drinking to mitigate some of the pain. I cannot believe this is even something that could happen.

Hello fellow Dystonians,

I have my first massage appointment after 2 years scheduled this evening! I’m so excited to hopefully get some relief from pain and stiffness, but I thought I’d check in to see if you all have any tips or insight on what has worked or hasn’t worked for you.

I’m going with a very gentle Swedish massage. Should I tell the masseuse to avoid my contracted SCM or massage extra gently? Has anyone found relief and/or other benefits when your contracted SCM has been massaged?

I will need to take valium 1mg (3xday) for a very long time.. How bad will this be if I ever need to taper?

I start taking it 2 years ago . I tappered to 1 mg a day but muscle spasms returned. I cant work without taking it

How many in this group were prescribed similar drugs indefinitely

I have Cricopharyngus Muscle dystonia. This causes problems with breathing , lamp in throat and difficulty swallowing .

Such as tmjd, scoliosis, fibro, cci, etc? I got all of them. I'm almost certain it's cervical dystonia in my case because my left shoulder literally can't go down, and my head often scrunches into my shoulder due to how tight my muscles are. Im thinking from covid and underlying eds, mold, chronic carbon monoxide poisoning from a new trailer. I have severe anhedonia and brain fog as well with my pain so I'm bedbound. I used to be a creative type but not anymore. I have a syrinx in my spinal cord that could potentially be making my problems worse. My eyes no longer align as well. I have vocal cord dysfunction and choke and often can't breathe and it's evolved into uars/sleep apnea so I only sleep 3 hrs a night. Sorry for life story, I just think it's all connected. I'm having trouble finding a neurosurgeon and proper neurologist, dystonia hasn't been mentioned to me at all. It feels so fucking negligent, because my PT never proper evaluated me and just told me that I had one of the tightest necks she's ever felt and that's it. :( help.

Hi FND friends! I have two separate questions so if anyone has advice for either that could help, that would be wonderful! Just in case **trigger warning** talk of seizure and dystonia symptoms
I apologize if this question gets asked a lot or has been answered: what helps your functional dystonia, specifically in your legs and feet? Mine is triggered typically the worst at night when I’m relaxing in bed and sometimes I’ve noticed when my legs are chilly. I had restless legs before my diagnosis and only ever found one thing that helped that but I struggle a lot with this later on in the day. It’s such a random problem for me that I really don’t have much advice picked up so anything is appreciated!
My second question topic is for my functional seizure friends. Do y’all have them bad when you sleep? I’m getting quite frustrated/annoyed because I’ve **known** I have nightmares and sleep issues but they aren’t happening much in the day anymore and now are like these things that I half remember but like **know** happened, if you feel me? I have to be slightly conscious when they begin but they “end” by me falling asleep. I used to have them very bad during the day. But how do you get a more restful sleep? I can’t really control them. Little side note: I’m not sure if I was having them in my sleep when I had my EEG, I can’t remember that entire hospital stay :/ but I assume they are functional? Idk lol. It would prob say in the EEG notes if any happened in my sleep, yeah?

Hi everyone,

I’ve been suffering from scalp dysesthesia for about 4 years now. My main symptoms are burning, tingling, a sensation of heat, and significant hair loss.

The symptoms seem to get noticeably worse with stress and heat. It has had a major impact on my daily life, and after four years I’m still actively trying to find something that could help.

I’ve already tried several treatments, first through dermatologists and then neurologists, including topiramate (Epitomax), propranolol, gabapentin, and more recently Botox injections. Unfortunately, nothing has really worked so far.

I’m reaching out to anyone who has experienced something similar: Did you ever figure out what was causing it? And more importantly, did you find anything that actually helped?

I’ve also come across several studies suggesting that scalp dysesthesia may sometimes be associated with cervical spine issues or muscle tension in the neck.

Has anyone explored this possibility? For example, physical therapy, neck exercises, treatment for a cervical spine problem, or anything targeting the neck/cervical area? If so, did it improve the burning, tingling, or scalp sensitivity?

I’d really appreciate hearing about your experiences, especially from anyone who had similar symptoms and eventually found some relief.

Thank you !

Has anyone tried the curable program and had any success with it? I’ve done something similar years ago and it helped. I signed up for curable yesterday and started working on it. I’m so fed up with this chronic pain that returned after I strained my neck last year. Before that, DBS made it so I had none.

Trying to adjust to golf with CD ( 8 rounds of Botox). Can’t walk the course as that’s a trigger for neck pull so I ride. For the most part I have adjusted as long as playing partners are aware. After most recent injections toward pull was much worse and I had to cut rounds short.
Anyway, any general tips for staying an adequate golfer with CD?
Thanks

Hi all,

I am going on a holiday for the first time in a very long time because of my stupid neck but I’ll be going on a plane with no checked baggage and staying in hotels.

I have CD and find a heat pack helps me after spasms to loosen up a bit again. At home I normally use a wheat pack but that won’t work as I won’t always have access to microwaves to heat it up. I’m planning on taking some instant heat patches and was thinking of a hot water bottle, but does anyone have any other ideas? I do have an electric hot pod but it’s just too heavy to carry around so I’m looking for any options I might have missed for travel friendly heat relief.

Thank you!

I’m being told by my doctor that it’s fine to continue dysport injections for cervical dystonia during pregnancy. It doesn’t look like there’s actually much research on this though, and I’m leaning towards postponing treatment until the baby is delivered.

I am curious about others’ experiences, though. Have others continued treatment during pregnancy? What was your experience/outcome?

Thank you!

I’m so sorry for texting this. I am almost at the point of needing my Nexplanon arm implanted birth control removed I do have generalized dystonia so I don’t know how I’m going to do it without shaking, but I am planning on getting the birth control again and I would like to do a copper IUD. If anyone’s had a copper IUD inserted, and how it compares to a dystonia flareup I would like to know or just any procedures in general I would love to know

I've been playing guitar for a few decades, mostly as a hobby, but at a pretty high technical level. I played in bands when I was younger and have spent most of my adult life playing for a few hours a day.

About two years ago, I developed focal dystonia in my fretting hand. It obviously took me a few months to even understand what it was. I believe it started shortly after I began practicing an intense exercise every day that I found online somewhere, maybe even on Reddit. I honestly don't even remember why I decided to try it, but it was physically demanding, and my fingers were hurting. I suspect it may have triggered the dystonia, although obviously I can't know for sure, especially after two years.

My middle finger would involuntarily curl down when I played, making it very difficult to keep it aligned with the other fingers. Eventually, I basically stopped playing seriously.

For the last several months, I've occasionally been doing very slow scales, trying to find movements that wouldn't trigger it. I wasn't really practicing properly, though.

Then, a few weeks ago, something bizarre happened. I had a very intense exchange with someone I'd just met, and afterwards I was replaying the conversation in my head, thinking about what I should have said. I was sitting with my guitar and slowly playing scales at the same time.

I was so deeply absorbed in my thoughts that the playing was almost on autopilot. I wasn't really paying attention to what my fingers were doing. My attention was almost entirely inside my head, going over the conversation, while my hands were just playing the scales in the background.

And then I suddenly noticed that my middle finger wasn't curling.

The dystonia wasn't completely gone, but the excessive force that normally pulls my finger out of position was almost completely gone. It felt as if my brain had somehow switched back to the old, non-dystonic movement pattern.

I'm still very rusty after nearly two years of barely playing, and the finger does curl a little, especially with certain movements. So I'm definitely not claiming that I'm cured. But the improvement was so dramatic and unexpected that I wanted to share it.

I have no idea what caused it, and I'm not suggesting that this is some kind of treatment. But after two years of struggling with this, it was pretty amazing to suddenly feel my hand working almost normally again.

This post is, admittedly, a vent more than anything. Sorry.

My focal hand dystonia started when I was 14, completely out of the blue. It mainly affects my writing & typing, but my arm and shoulders hurt constantly from the tensing and general fatigue that we all know and love. I have general tremor too, and every extra bad day makes me feel like maybe it’s spreading to the other side, maybe I’ll eventually be unable to do normal things, etc. I’m in a constant state of panic and general pain.

I had sushi with a friend the other day and was self conscious that she’d notice the shaking while I was using chopsticks. I tense up and panic when asked to sign receipts in front of others. I had to fill out a form today that was hand-written only, and I had to ask my (wonderful) partner if he could do a lot of it for me to try to mitigate the frustration and pain that comes from forcing it.

Every day is a stressor, which feeds into the severity of the dystonia. I’m 29 and feel like I’m destined to be in pain every single day for the rest of my life, and that just sucks. Frankly, it just sucks, and I’m irritated today and needed to write it out to people who I know (unfortunately) get it.

I’ve tried Botox and various medications and nothing has made it easier. It just isn’t responsive to the current treatments and I feel like a normal life slipped away at 14. I’m mourning a life of less pain & more ability/less dependency on others that I never even really had.

Thank you everyone for all your reassurance as I was so nervous about getting Botox in my neck.

It was a strange experience, no imaging, no advice or info. The consultant neurologist sat me on a chair and just injected it. Two 25mg injections, I was in there for less than 5 mins. There was no pain, no sting. Just got home and will cook now….hope it works!!!

Just had an alternate diagnosis of FND rather than primary oromandibular dystonia. Either way my whole head feels like it's clenching all day every day. I either wear a mouthguard and my jaw never stops displacing laterally, or I go without and the tension across my nose, temples and tongue is unbearable. Botox has done nothing, procyclidine has done nothing. I'm desperate for just a tiny bit of relief but I don't think I'll ever get it. If anybody's been in my position and found a way to make life a little more tolerable I could really do with hearing it.

Edited to say that my daughter has tested negative for the gene.

I have adult onset dopa responsive dystonia. My two younger children, both young adults, have received the same diagnosis. We are all slowly getting better on carbidopa/levodopa. My oldest son has the mildest symptoms, but then so did I once upon a time.

He has trunk tightness, equinovarus feet, and weak swallowing/cranial nerves on the left side. A regular neurologist wrote him a dopamine challenge and he has been responding beautifully. It also helps with long standing anxiety.

So he waits 8 months to see a movement specialist and she tells him he doesnt have DRD because his gait isnt involved (again mine wasnt either at his age i had his exact presentation). She said she wont write him for c/l and wants him to stop taking it for 6months to a year to see if his gait is affected and then she may reconsider. She said she didnt care if he had 3 direct relatives who have been diagnosed and that any improvement he felt was a placebo effect…

So she wants him to get worse before he can get a diagnosis and I so don’t want him to go through what I have and then try to get those movements back.

Does anyone have any advice? I’m so dumbfounded. We are getting a second opinion but am worried he will be blown off again.

I’ve been dealing with muscle pain under my left breast. Yes…I have seen a doctor and it’s not heart issues. I had a mammo too just to make sure. Damn it’s painful and kind of hard to reach because my breast is in the way. Has anyone else dealt with this? Is it also part of dystonia? I’ve been putting a hot sock (filled with flax) in my bra. That about the best I can think of.