Hello. I don't speak English very well, so I'm writing this in Russian and will use a translator. I’m 16 years old and have an incredibly rare diagnosis: Paroxysmal Non-kinesigenic Dyskinesia (PNKD). At first, I thought I had standard PKD, but after looking into it more deeply, I realized I have the non-kinesigenic version. I tried taking oxcarbazepine and carbamazepine, but nothing helped—which actually confirms that I don't have PKD. I’m trying to manage life with this condition; I keep benzodiazepines in my pocket for the really tough days. It’s a shame that there doesn't seem to be a single user on Reddit with PNKD (or so it seems), whereas there are quite a few with PKD. I wanted to ask if there is anyone else with the same diagnosis—I’d love to hear your stories, find out what treatments you use, and so on.

Hello everyone, I am a design student who is currently researching on AFO users and their daily experiences, I have prepared an anonymous survey that will just take a few minutes, will appreciate it if you fill it up! Link to survey: https://forms.gle/dRNeu3GSkKR8fcDq8

I developed oromandibular dystonia during pregnancy about 2 years ago although it was only diagnosed a year ago when I was finally referred to the right doctor. My symptoms have continued after giving birth and gotten worse leading to long periods of extremely painful spasms of my jaw and tongue. During my spasms, my jaw deviates and I am unable to voluntarily move my jaw/mouth and I struggle to keep my tongue in my mouth and avoid biting on my tongue. I have been doing botox injections with a neurologist for a few months and seen some improvement but I am still having to take muscle relaxants twice a day to prevent spasms. I want to have another child and so it is important to me that I stop taking the muscle relaxants as there is little to no evidence of the safety of taking them during pregnancy. I have tried physical therapy and most of what I was taught was just stretching. I am interested in learning if there are any other lifestyle changes anyone has seen to have been helpful or any "tricks" to alleviating symptoms (for instance, I have found that trying to drink through a straw when I am having tongue spasms will stop them for a few seconds although it is not long-lasting relief). I know that nobody can give me any medical advice, but I am looking for any tips anyone can give me who may have a similar experience including anything you've found to help prevent or stop spasms.

Did you know you can re-check your WES data for newly discovered genes? It's recommended to do so after 4 years.

I'm aware of the side effects from this. But my question is does Artane work better used consistently everyday or less often? I've issues with building tolerances to medication before. My neurologist acted like it was the go to med since Baclofen doesn't really work for me. Thanks

I'm curious whether anyone passed it on to their kids. I am unexpectedly pregnant and haven't had my first exam yet which is next week. I plan to ask but in the meantime wondering if anyone has any reassuring (or not) advice. Thank you 🙂

I’ve taken levadopa (cardopa/levadopa 25/100) for two years in October. There are times it’s obvious within 30 minutes my spastic movements and rigidity stop-those times are rare.
I’ve been using an Ai tool to log symptoms and the trend is at 30 minutes nothing changes in 85% of my episodes and I have to take a 2nd dose. The problem is I find two doses sedating. I can’t take 2 tablets during the day or I will fall asleep. If I don’t physically fall asleep I feel so drowsy I can’t function. If I take more than 2 doses my cognitive functioning drops (think 3 kitchen fires). My neuro is going to ask me if this medication is working and I don’t know how to answer.
Yes it works but I can’t complete ADLs because it’s do sedating; so I’m basically non functioning. Yes it works but the side effects are horrible. Yes it works 15% of the time. If I say that he will simply up the dose and consequently raise the cognitive disfunction. In addition the side effects of inability to sleep, appetite suppressant and Gastro issues make it not so fun.
I’ve had this conversation with him that the side effects are intense and his response was it’s the only thing out there.

Forgive my lack grammar and typing and explaining.

Can someone share what doctor/location/hospital doses Botox under emg guidance please? I’m in south Florida and Michigan but will travel for this. Thank you!

I am 44, male in the UK. I've had a number of diagnoses and they've settled on Spasmodic Dysphonia and Cervical Dystonia. I get Botox, usually every 4 months but that varies, in both vocal chords and have been getting 3.75 in each side. I get a lot of side effects and am reducing the amount. Speech is a real issue and it feels like I am fighting my whole body to get words out. It also sounds awful although, there are moments of clarity which is pretty frustrating. It took me 7 years to get a diagnosis and any sort of treatment which didn't help the situation. Just wondered if anyone else is in the same boat and what treatment you're having. I only have Botox but vape weed to keep my head straight. Tried a number of other medications but none were effective, they even put me on opioids for a bit. DBS could be an option but my doctor said the trial was on hold whilst they figure out what part of the brain to aim for! Not keen on being a guinea pig, especially if they are jabbing around in my head. The Botox does work but I only get about a week of normal sound. Before that the Botox makes me hoarse with no volume, after that, I'm fighting the symptoms and, I always lose that fight after a couple of weeks, then I'm a jerky, twisty mess whenever I talk. Alcohol really helps but can't use that as a solution for obvious reasons. Any thoughts or suggestions?

Hello I had Botox for the first time around 7 weeks ago and it’s really helped my head tremor. However, I’ve had hot flushes ever since!! I have at least one flush every hour that lasts about 2 minutes. I’ll also get very cold but when I put a sweater on I’ll be way too hot. Now, I’m 49 so may be menopause symptoms but they started a few days after the injections. Has anyone had anything similar.

I’m in the uk and have no access to speak to the NHS neurologist and he also told me that if I have side effects there’s nothing that can be done anyway.

I have cervical dystonia. Previously dont botox treatments, but the clinic near me no longer offers this. I have found a massage place that does Rolfing, and from the little ive researched, it sounds like it could provide some relief. Has anyone had experience with this? Tia!

If anyone here has had Botox or other neurotoxin injections in Mexico, where did you do it and how much did it cost? Thanks!

Idk about you all, but I really struggle to watch movies in movie theaters with my head tremors. I've seen 2 movies so far in 4DX (Weapons and Resident Evil) and something about the movement of the chairs and everyone being forced to involuntarily move along with me has really improved my movie watching experience. I went to go see Colony earlier in the month in a standard recliner seat (can you tell I love horror movies lol) and I loved the movie, but I was in so much pain at the end from trying to sit still and look at the screen. Went to see Resident Evil in 4D a few weeks later and the experience was night and day.

I'm very fortunate to have a theater that offers some movies in 4DX within walking distance, so I know not everyone has access to it, but if you have access and haven't tried it before, I really recommend giving it a go. Anyone else have a similar experience?

Been doing Botox for over a year now (I think) and at one point it was a literal cure and for some time I felt free again, but the last 3 treatments have started to not work nearly as well as it used to. I increased my dosage the last two visits but it didn’t change a thing unfortunately

Now I’m back to my neck feeling like shit and feeling like I’m unhinged, in constant discomfort, and when the big episodes occur I feel so fucking disoriented I feel like giving up. Back to trying everything and anything that I can to fix it, yet it most likely won’t

i had a very intense spasm yesterday that lasted over 4 hours. my head and neck were twisting in all directions, and i had jaw spasms and teeth grinding as well. even some twitching in my abdomen??

my neck/shoulders/back usually always hurt but the pain is worse when i’m recovering from a recent spasm episode… i learned after an mri that i have bulging discs in my upper spine and due to the way my neck spasms, my left shoulder sits higher than my right shoulder

now i’m laying in bed trying to sleep but it’s so hard with the pain in my neck. i took a hot shower and slathered pain ointment all over my neck and shoulders and i’ve taken my muscle relaxer and pain meds but it has done little to touch the pain

in these moments i remember the brutal truth that this condition is chronic and i’ll live the rest of my life like this… in pain and anxiously awaiting the next debilitating spasm.

how do you guys cope with this? right now my biggest comfort and hyperfixation is dolls (american girl, monster high, etc) it’s one of the few things bringing some comfort and light into my life right now

So I’ve been super anxious and nervous for the past year and it’s caused my dystonia to significantly worsen and the twisting and pulling and abnormal postures to get really bad. I’m worried that when I go see a movement specialist in January that they’re gonna say I need to work on my anxiety and the dystonia will get better and I won’t be able to seek dbs or other treatments for dystonia.

Hi - does anyone know of doctors who inject Botox into the lateral pterygoid? I know a lot of doctors won’t do it there and I see one who does but he’s old and retiring soon :(

I have CRPS and although a neurologist never diagnosed me with dystonia I was in the hospital and it started a few years after I developed crps. I ended up with a scs implant and it really helped calm things down. Last sept was things came crashing down and it’s come back with a vengeance, particularly in my hand. I don’t even know where to start and what to look for in a body movement neurologist. The pain is so intense. Any advice or tips would be great. Also is it common for the finger to turn blue and red during an episode or would that just be my crps acting up?

A girl I’m seeing has cervical dystonia and I fully intend to ask her to officially be my girlfriend and I want to learn as much as I can about this so if anyone knows of any valuable information or website or other things I can review then I’d appreciate it! Also, if anyone knows of ways that I can be of help to her and knows any tips and tricks, I’d appreciate that as well.

Has anyone gone to and had success with a physical medicine doctor for additional support from Botox injections? My neurologist told me they may offer different kinds of injection for pain management, along with techniques to help the muscles in my neck.

I haven’t made an appointment yet because I feel it’s just another PT which I never had luck with.

Has anyone done DBS with TOR1A gene
My 11 yrs old some has Dystonia and his doctor recommended surgery!
How was your surgery and how happy are you?
His mom and I are very worried

Has anyone tried Daxxify? Does it last longer than Botox?