r/Dystonia

Hi all,

I don't have a diagnosis of cervical dystonia at this point though definitely have symptoms that fit it. I'm not looking for a diagnosis, I already have an appointment booked with a GP to organise any needed referrals/follow-up, though the earliest I can see someone is 9 days. I am not actually sure if I even have cervical dystonia or if it is purely severe social anxiety. I have reached a point where I can no longer type at work with two hands because one hand needs to be doing something to keep my head in a neutral position. It seems social anxiety was a big trigger though I now have the same neck symptoms when no one is around, they are just less severe than when others are around. The question I have in my head is whether it is just a severe case of fight or flight where I am turning my head away from the percieved threat, though at the same time my head seems to have a preference on which way it turns even if that direction faces people. I also work in a people facing role and having your hand under your chin the whole time can come across as cold and rude, so I'm not sure how I am supposed to manage at work before the appointment - does it sound justified to ask them to let me know if the GP has an earlier cancellation? Anything I can do in the meantime to manage?

Sorry for the weird wording, idk how I should had put it, but anyway,

I was just curious about something. For those who has gotten covid, did it trigger you to gain Dystonia? I am pretty sure it did with me because before I had it, I was perfectly fine, but one night I woke up and had a "Dystonic storm", so basically it felt like everything was curling up/tightening in my body and I had a hard time breathing too. It was scary and I haven't had another episode like that thankfully, but still.

Hello everyone, i have been getting treated by my neurologist for cervical dystonia for over a year now via botox shots every 12 weeks. I am a little in doubt of my diagnosis. I went to a neuro after a year of neck pain, having seen doctors ranging from orthopedic to ENT.

My neuro diagnosed me with cervical dystonia within less than a minute of meeting me. I came in complaining of constant left side neck+jaw, bone popping at the base of my skull and often a feeling of congestion in the left side of my neck paired with a stuffy nose on only the left side. I also complain of this “crackling” or “static tv” feeling whenever i move my neck

What I DONT experience is uncontrollable movement, muscle jerking or twitches. I do sometimes feel my muscles spasming at the base of my skull but never have any “jerking moments”. I guess i am a little in doubt of my diagnosis and I often feel like im just being sold botox shots (that dont really provide relief). Im curious to know everyones thoughts on this. Thanks in advance for any feedback!

I’m 22 years old and I’ve had Paroxysmal Kinesigenic Dyskinesia (PKD) since I was around 13–14 years old.
When I was younger, the attacks were quite severe and difficult to manage. Over the years, they’ve improved a lot. Now I can often go months without an attack as long as I avoid my triggers (standing up too quickly, sudden movements, etc.). If I pause before making a sudden movement, I can sometimes prevent an attack altogether.
The movement symptoms themselves aren’t my biggest concern anymore. What worries me is something that happens immediately after an attack.
Right after the movement episode ends, I get a very intense feeling of dissociation/derealization that lasts about 4–5 seconds. During those few seconds, I feel mentally detached or “unreal,” and I sometimes notice my eyes struggling to focus properly. After that passes, I’m left with a mild headache, heavy eyes, and a drained feeling for a few minutes before returning to normal.
I also have generalized anxiety, and I can sometimes experience mild dissociation during periods of anxiety or excessive health-related worrying. However, this post-PKD feeling is different. It’s much stronger, always occurs immediately after an attack, and lasts only a few seconds.
This has been happening for about 5–6 years, while my actual PKD attacks have become much less severe.
I’m wondering:
Has anyone else with PKD experienced something similar after an attack?
Is a brief feeling of dissociation or difficulty focusing your eyes something you’ve noticed?
Could this simply be a post-attack effect, or is it something I should discuss further with my neurologist?
I’m not looking for a diagnosis—I’m mainly interested in hearing whether anyone with PKD has had a similar experience.
Thanks in advance.

I have foot and hand dystonia, along with spasmodic dysphonia and jaw pains (I don't know how or if I can add another tag to the post)

The problems begin at age 17, I suddenly couldn't speak normally and I started getting slight hand tremors when I'd eat.

Then about two or three years later I noticed my toes folding on each other and not long after I just couldn't stand still on my left leg (I could still walk fine)

About two years after that out of nowhere I just couldn't walk right anymore.. it felt like my brain just forgot how to walk, it has gotten much worse since and my foot is now clubbed and it's painful to walk and the hand tremor has gotten much worse, it's hard to fall asleep and do anything with my left arm, I've tried Botox many times, no success on the foot not even a slight change, the hand is now super weak I can barely hold a glass of water, it did minimize some of the tremors but that's about it, better than nothing I guess..

I'm waiting on my DNA results, It'll be right after my 22 birthday

I'm tired of having no one I can relate to and I'm tired of all the pain, emotional and physical

I'm tired of feeling so useless and like I'm a burden to the people I love even tho they probably wouldn't agree with me.. I miss going on walks with my boyfriend every evening and having fun with friends

I'm considering DBS surgery

I wanna know if there's people here that tried it and how it went/going because I'm scared of brain surgery even if it's a minor one like my doctor says

It never stops. I wake up and have a few minutes of sanity before it kicks in, the constant wrenching of my jaw from side to side. My head hurts all the time; wearing a bite shield is the only thing that eases off the constant tension across my nose and wrenching of my tongue. My jaw is still constantly getting wrenched from side to side.

Three rounds of botox have been ineffective. How do you cope with something like this? It's absolutely infantilised me into a lachrymose wreck and destroyed my enjoyment of pretty much anything.

This is more venting than anything else but if anybody has had similar experiences (especially non-response to botox) I'd really appreciate hearing from you.

Benadryl is an anticholinergic so it can help but I don't know if it is advisable or the dosage my doctor said it could help but he didn't say a dosage.

Just wondering if anyone else has this issue where the dystonia isn't causing insomnia, but interrupted sleep.

My partner has what we think is a cervical dystonia presenting as a diaphgramatic dystonia. His goes in cycles, and because of the botox for blepherospasm we know it only is very bad when he sort of can suddenly feel the hitched breaths more strongly than usual, but more importantly his sleep goes terrible. Awake at 2 or 3 AM no matter what time he goes to bed or what meds/supplements he takes.

Previously, it's like the cycle hits a crescendo (we do wonder if he has a seizure type episode) and then he's back to normal sleep and his breathing feels much better.

Asking out of curiosity and as we're in the middle of one now, and it's been like 4 weeks longer than normal.

For dystonia patients, have you seen your botox longevity affected by physical exertion?

What activity were you doing and what type of dystonia do you have?

GOOD EVENING; its nin, yes the one with Parkinson's for 5 years with the added dystonia of the feet. I have a story so rare I'm considering getting a lotto ticket.

CONTEXT: I have had Parkinson's/dystonia since April of 2021 and have collected all 151 indigo pokemon; in other words, I have seen every specialist to get to this point of undergoing DBS. deep brain stimulation surgery was today at 3:30 this evening.

THE TEA: cut right to the point, during surgery a glitch happened. The guidance system produced several different coordinates to the surgeon. Surgeon decided to terminate the rest of the procedure. He refused to take the risk (G.O.A.T) as in his long career never experienced the equipment bugging out. My surgeon, is a saint, he was angry with me and is making shit happen. Tomorrow I get the call for reschedule. Now, I'm at home with family resting and tomorrow...hmm. yes, I am going to BODYATTACK to plyometric this frustration out of me.

Cheers ya all

Nin

P.s. I look damn fine right now. Reddit, how do you post pic here? Yes I'm old: grew up with Jackson 5 and VHS. LOL

I’ve always had to answer a standard set of questions but this seems more than that. Has the FDA changed something or has Medicare changed its guidelines?

This all started after going off Abilify and/or Hydroxyzine. I also have akathisia and dyskinesia. I’m waiting on apt with an MDS. Does this sound like dystonia??
Muscle tightening/cramps that hops from one place to the other. I have the following:
Leg/calve cramps
Neck cramps
Back cramps
Tongue stiffening (not visible to others just very uncomfortable for hours)
Throat tightening (this one is THE WORST out of them all I think I’m being called home every time)
Sometimes jaw tightening

Since I’ve been off the causative med, should it stay this way or will it get worse?? I’ve noticed if I take certain things it hurts badly. I can’t take anything. I am only taking half my dose of propranol everyday now. Off psych meds completely for the first time in ten years. Is there any hope of this and dyskinesia going away eventually??

I didn’t have any signs on the meds. This all started when I went off. I took Abilify for two months and Hydroxyzine (HIGH doses) for one month.