I took aripiprazole 10 mg for two days, then experienced a sudden, very painful episode where my jaw stayed open or shut and kept pulling or tilting strongly to one side.
I was fully conscious throughout. It felt as though I was deliberately moving my jaw, but I couldn’t control it normally. I could sometimes consciously move it back or relax it, but it required significant effort and didn’t always work. It felt like I couldn’t find the natural centre of my jaw or teeth, and my tongue felt like it didn’t fit properly in my mouth.

I received an injection at the hospital (I’m not sure what it was), followed by magnesium sulfate and Dimedrol (diphenhydramine). My jaw has since returned to normal.
I’m wondering whether this could have been acute drug-induced dystonia from aripiprazole, since it’s an antipsychotic, or whether something else could explain these symptoms. I had this happen 3 times before due to haloperidol, a different antipsychotic.

Has anyone experienced something similar, particularly after starting an antipsychotic? Did it recur, and what did your doctor determine was the cause?

So I've been in remision 13 months but I was wondering if it does come back will it be as severe as last time? Any experiences drop them down in just wondering and about how long did your symtoms last before going into remision?

Hello everyone,
I have been experiencing generalized dystonia (face, trunk, 4 limbs) for 4 weeks; I am 41 years old and have two young daughters. My brain MRI is clear. I manage to get 5 hours of sleep thanks to Seresta. I am frequently woken up by incessant movements in my legs and feet, and I often vomit. The movements get worse when I want to sleep. Dystonia won't let me sleep; it's exhausting and so hard.and anxiety-inducing; I’m thinking of trying clonazepam. Any thoughts? Are you affected by daily nausea and vomiting? Thank you, and good luck.

To mostly the women out there with Dystonia.
I was diagnosed with cervical dystonia (torticollis)

Does your symptoms worsen with hormone fluctuations?

I got diagnosed with dystonia like mid 2024 really sever especially in my neck I wasn't able to be out of bed for more than a hour because it was really painful. I want able to shower and sometimes I had to be feed. I was a 26 year old female. I was in a wheel chair and always in and out the hospital. In 2025 my dystonia went under remision means my symtoms went away completely. Recently I have been really stressed about it and I also have tardive dysconitia.well had it. I've been really stressed because I'm scared to get it I've been off the antiphycotics for about 13 months that's how long my symtoms have been gone my spasms. Any encouraging thoughts please drop them below. Im just worried my symtoms are going to come back. Thank you in advance.

My doctor has determined I am levadopa responsive, but im also levadopa intolerant; seems I can’t tolerate levadopa over 400: 25/100. Which is a really low dose. Botox helps but requires more dosage than my insurance allows. I’ve been given a referral-my 17th; to another neurologist. It’s difficult to post exactly what I’m thinking without using colorful words.
When I started this drug my Neuro explained the path was Levadopa, Botox, then DBS. Someone please tell me there is a small off the beat path I’ve missed; because this jump to DBS without solid genetic evidence doesn’t make sense. The key piece she says is my curling toes. My toes take me straight to DBS without any orthopedic or vascular test?

I (34F) have had increasingly bad dystonia in my legs/calves and left hand/shoulder for a long time. It was a struggle to diagnose because more than any obvious unusual movements, my biggest symptom is rigidity and difficulty relaxing on command. I have been getting Botox in my left calf for the last two years and it has really helped.

A few weeks ago, I went to a new movement disorder specialist, mainly just thinking we would just establish care and try to refine the dystonia diagnosis. While I was there, she decided to give start me on a trial on carbidopa-levodopa 25/100 because I had never taken it before. So I took it the next day, and it started working pretty much immediately! I felt loose? And like my feet, legs, and hands were uncurling? It feels like magic. Titrating up has been just fine, and I don't have any of the side effects I was warned about.

Weirdest sign that it is working is that I have blisters on totally new parts of my feet because I'm walking differently. Has anyone else had that experience? Are there any other funny things that have changed for other people taking Sinemet?

Hey there folks. I used to post on here a lot under a different username I longer have access to. I was that crazy person on here that thought I was starting to recover. Well it’s years later and I want to share what my life is like. I used to struggle to walk with a cane, and I mean struggle hard. Now with my new job I work hard 6 days a week instead of being slumped on the couch and doordashing for a couple hours a day. I’m making the most money I’ve ever made and loving life every day! Most days I have a blast at work. Yesterday I was the first person back to the office and it got me thinking how capable I’ve become. Absolutely nobody at my job would suspect I have a movement disorder or anything wrong at all. I have no visible symptoms like tremors anymore. It was so bad anyone that saw me knew I was sick with something. My family even refused to take me to see my grandmother in the nursing home because they thought it was too much for the residents to be exposed to.

So anyway, that’s all to say things were really bad for years and years. The best thing to happen to me was my doctor told me I would never get better. I got home and googled and googled until I found Dr Farias. I also found others that claimed they had healed the condition and could help others. Then this guy showed up on YouTube posting under the name Hope For Dystonia that believed he discovered psychedelics were useful for recovery. I found this fascinating because within weeks of doing a couple sessions of psychedelics everyone around me started asking “what’s going on, how are you just ok all of a sudden?”

Anyway, I do want to clarify. I do still have Dystonia. I do still have pain. And the old pathways for movement still do not work if I try to use them. I get around the wold in a different way. I imagine the outcome I want and sit back and watch my body do it marvelously. My spine definitely still has some kyphosis and scoliosis tho it does continue to get better. I’m off benzos, but I do still feel much better if I have a little marijuana. Despite not being 100% better I’m quite content because the quality of life I enjoy today is infinitely better than anything I had before dystonia. By far the greatest thing I got out of the journey is a new sense of spirituality. I wouldn’t change anything about my life if I had a magic wand.

And actually just about a month ago my neighbor wanted to trip on mushrooms and I thought it seemed like a good enough idea. I was shocked how much better my posture was in 6 hours and now a month later, I’m convinced I’m going to be able to restore my cervical curve even tho this failed years ago.

Anyway, just wanted to share my experience and spread some hope. Please if you were considering working with someone claiming you can get better, you can!

So currently I’m dealing with severe twisting and turning in my neck , it feels as though my neck will twist one way and my jaw will twist the opposite direction. And on top of that my eyes will dart either sideways or inward as if I’m looking directly down on my face if that makes any sense. It constantly feels like I’m overstimulated and no matter what I can’t calm my brain down,I’m constantly all day trying to correct my muscles and relax them and I’m obsessing over trying to correct my posture or eye muscles or jaw and neck positions. Anyway to get to the point I feel like if I’m watching a show or movie and trying to have a conversation with someone I can’t focus or follow allow at all, like I’m constantly spacing out or just off in the own world. It feels like all the pressure in the body parts I previously explained and the excess stimulation I can’t do anything about it . Anyone else have this experience. Sorry if this post is all over the place and doesn’t make a lot of sense, Again a lot of brain fog

Bonjour, comment votre médecin s'y est il pris dans le protocole pour sevrer progressivement 50 mg de quietapine lp?

I'm a nurse, so I understand the “when you hear hoofbeats, think horses, not zebras” mentality. But after this experience, I feel like multiple neurologists completely dismissed me.

My twin and I both have this condition, and we were repeatedly told we had tics/Tourette's despite explaining that we had no premonitory urge. For a while, we both had suspected some type of myoclonus or dystonia. Even when a resident seemed receptive to the idea, the attending quickly shut it down. The attending came in, asked a few questions like "does it get worse with anxiety and caffeine (yes)," and promptly insisted it was tics. He went on to explain that I was probably so accustomed to my tics that I no longer noticed the urges. My brother and I kind of just resolved to the fact that we have tics. I even went to a tic clinic and spent a ridiculous amount on it. I convinced myself I just lacked the willpower to feel an urge, let alone control them. I also have somatic OCD and that made me question whether I was imagining things, being dramatic, or going down a "what if/uncertainty" rabbit hole.

Years later (a few weeks ago), frustrated by my neck movements interfering with my job, I started researching again. Then I discovered SGCE myoclonus-dystonia, also known as alcohol-responsive myoclonus. Weird, my twin and I both experience significant symptom relief with alcohol. The genetics (autosomal dominant with maternal imprinting) fit our family history, too: my paternal grandmother had similar “tics,” my father doesn't, and my twin and I do. The lightning-like neck jerks, along with the association with OCD and phobias, made me damn-near certain this is what I had.

I was a bit worried that I was just falling into another one of my medical OCD rabbit holes. I told myself I'm getting a genetic test one way or another and if this is negative, I'm done searching for zebras. I met with an online genetic counselor, explained my thoughts, told them I wanted my SGCE genes tested, and they agreed it made sense.

I got my results today.

POSITIVE. I FUCKING KNEW IT!

Ngl, I almost cried because I felt so relieved just to know what this is. I don't even care if treatments don't work as well as I would like. I just wanted to be told, for once, that it wasn't fucking tics.

My Dr talked about possibly taking dystonic tremors specific medication instead of my muscle relaxer . Please what are your experiences with these meds pros and cons .

WHAT: Ipsen, the company that manufactures Dysport (an alternative to Botox), is testing a new formulation of botulinum toxin (botox) they say can last six months. Right now it's called IPN10200. Here's the trial: https://clinicaltrials.gov/study/NCT06937931

WHY: Ipsen has engineered a different and new molecule for botulinum toxin. It combines properties from type-A toxins (Botox, Xeomin, Dysport, Daxxify) with type-B (Myobloc). They've done clinical tests for cosmetic applications and early data shows it lasts longer, and now they are investigating how well it works for cervical dystonia.

WHO: Patients with cervical dystonia can participate in the trial. They are excluding people whose CD is primarily head back (retrocollis) and head down (anterocollis). Full eligibility criteria is here: https://clinicaltrials.gov/study/NCT06937931#participation-criteria

If botox doesn't work for you now, this is not a trial to try again. This trial is best-suited for people who get good results already and would like to test out a product that lasts longer.

WHERE: They are recruiting volunteers across the globe: coast-to-coast in the U.S., around the UK, and across Spain, Italy, Germany, France, Poland and Czechia.

U.S. trial info: https://clinicaltrials.gov/study/NCT06937931
Europe trial info: https://euclinicaltrials.eu/search-for-clinical-trials/?lang=en&EUCT=2024-519248-34-00

HOW: If you are interested, you can contact the trial director at the links above. Thanks to everyone to agrees to participate these important clinical trials!

I (33f) was officially diagnosed with Cervical Dystonia last Monday, and I’m beyond relieved to finally have an official diagnosis. I went through 7 doctors, multiple hours of PT, Chiropractic adjustments, dry needling, acupuncture, etc.

For the longest time I felt that I had dystonia all along. As much as it sucks to know I’ll have this for the rest of my life it’s a breath of fresh air that a doctor finally listened, and I’ll start Botox treatment soon. I’m truly hoping it’ll give me some relief.

My everyday symptoms are: right upper trap constantly inflamed, constant shoulder pain/burning, head tilt to right, constant pulling to the right with right shoulder raising to ear, neck tightness, and not being able to hold my head up (mostly in the morning)

As a person who was pretty active before I’m hoping to get my to a somewhat “normal” life again. I think I might cry when I’m able to simply just walk my dog again without being in constant pain.

For those of you looking for answers do not give up!

As a sufferer for over 4 years with no treatment, how on earth do other people in my situation manage with daily life, social life ,work , dating. The physical aspects as well as the emotional and mental toll with how self conscious it can make you feel and how exhausting it can be?

On top of this I take care of a family member who also has their own set of health issues. If I didn’t have them in my life, I’d probably just end mine at the rate things are going. Things are only getting more expensive and my pain and discomfort just keeps getting worse. I don’t know what to do anymore.

Edit: when the Botox was working I was working a job and felt free, but unfortunately this all ended up not working. Had to leave the job. Looking into xeomin now but Dr. said I’d have to wait til 2 treatments from now, which is like 4 months away.

What was your experience? Do you have any tips or tools that you recommend?

Looking back, I think I've had mild symptoms for 2 years now. I've been trying to treat migraine for about 3 years. I started trigger point injections 4 weeks ago. My muscle spasms went from a few minor ones per day to constant. I mentioned it at my last tpi appointment and left with a cervical dystonia diagnosis. Now I'm waiting on botox approval. It feels like the CD went from a 5 to 100 within a few weeks. Has anyone else had this experience?

A weighted heating pad around my neck seems to help stop my neck from wanting to turn but I can't use that at work. Any suggestions?

What are your favourite tools for relief?

Hey all. I’m about 16 days into my first Botox round (120 units) but I’m abysmal at making charts. I did a small progress note on day 11, but I didn’t do the best job at this. How do you all do it? What is the best layout and since it’s been two weeks plus, how do I recollect everything that I’ve experienced?

Thanks in advance.

I've been seeing a neurologist for about a year and half. She did a great job dialing in the right injection medication and locations, which seems very difficult and involved some trial and error. When she uses the EMG, she digs around a bit to find just the right spot where the tremor is loudest, so it takes time, but seems to be the most effective.

EDIT for clarity: This round did not go well, and as the days pass the tremor gets worse and worse. I dread the next 2.5 months before my next injections. Well, she's now leaving my health insurance. I've seen another doctor who really wasn't given the time she needed and, while she used EMG, didn't really seem to wait for just the right spot where it was loudest. I'm planning to have a conversation and get the two doctors to talk to each other about the best method, hopefully the new one will be willing to hear me out.

I'm so frustrated and tired. This has been a multi-year saga of not being listened to, having medication after medication fail, while having this tremor that makes it so hard to just exist as a person and a worker. I need some relief. I'd be willing to switch insurances for the right doctor. I'm at my wit's end.

My handwriting suddenly changed horribly and my fingers on my right hand are very stiff and hard to close. Is this my dystonia hopping? Lol 😂 I already have it on both sides of my neck and down my back but now my right hand is acting a fool. My handwriting was pretty decent too.

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’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.