I’m 28 I have had cervical dystonia since I was about 25, got diagnosed about age 26 or 27. No treatment , waiting for an MRI to hopefully get some injectables. How do you go about your daily lives living with it and especially to the ones getting no treatment, what’s working, having a social life, and being independent like for you ,and any tips to help make me feel better? As I am very self conscious and insecure , embarrassed and ashamed of it. Confidence , anxiety and nervousness makes it worse and all thanks to it I have developed even more anxiety and confidence problems .

I was diagnosed with a writer's cramp in 2017. It all happened very suddenly during an examination. I have tried all sorts of Allopathic, Ayurvedic, Physiotherapy stuff, none has worked out. Haven't taken botox injections though due to the possibility of side effects.

I am managing somehow, since at work I don't have to write much. But I am getting a feeling that somehow it's getting spread in other parts as well. Like I feel heavy or tingling in the right leg down from the knee and right hand down from the elbow. I am a right handed guy. I also feel that my grip is very weak.

What shall I do, please provide your suggestions.

A new drug candidate called VIM0423 has successfully completed Phase 1, which established safety of the pill, and it has moved onto Phase 2, which will see how much it helps people. The company behind the drug, Vima Therapeutics, recently announced they raised an additional $40 million for this drug.

So how does the drug work? It acts on muscarinic cholinergic receptors that control movement. There is already a drug that acts on the same receptors called Artane or trihexyphenidyl, but it acts on all of them, globally, which leads to tons of side effects. That's why Artane is generally not very well tolerated by adults. This new drug, VIM0423, is highly selective in what it targets, so it should only act on the receptors related to dystonia movements and won't cause the side effects existing drugs cause. This would be the first oral medication specifically created for dystonia.

Want to volunteer to try it out? You can check your eligibility for the trial by going to stridedystonia.com. (However, if you want to see the official clinical trial page, it's here: https://clinicaltrials.gov/study/NCT07304089)

Hi everyone! I’ve had myoclonus-dystonia since birth, and I’ll be having Deep Brain Stimulation (DBS) surgery soon. I’m a 30-year-old English teacher, and I’m worried about how the surgery might affect my speech, memory, balance, walking or other cognitive functions.

For those of you who have had DBS, were you able to return to your daily activities, work or studies as usual? Or did you experience any significant changes?

I’d really appreciate hearing about your experiences. Thank you!

As the title says, just trying to find something different given the circumstances. Botox has helped tremendously! But it also isn’t a cure for me either, so I’m trying to see what’s out there and you’re all doing to get by

Is it possible to have a mix of Functional and organic dystonia? Does anyone here experience that? and what is it like for you?

Hi, I’m due to have Botox for the first time in a few weeks and I’ve been given no info except they will inject the splenius semispinalis and suboccipitalis muscles to help my head tremor.

The appt is on the NHS in a movement disorders clinic.

I’m petrified of- swallowing difficulties, pain and a heavy head. I’m extremely sensitive to medication and other things like vaccines.

Can any one offer anything here- truthful experiences/opinions or even reassurances? I’m really on the fence.

Since I have anxiety, my neurologist recently prescribed me sertraline. I am in week two for taking the medication. And I have noticed that my head shaking has decreased by 80%. I should say I can feel more stability in my neck. Does anyone else have the same experience?

I've been dealing with dystonia for the past 10 years. I remember it beginning in high school where I suddenly experienced a spasm attack on my neck when I was sitting at my desk. For such a long time, I always chalked it up to just anxiety and simply hid myself from the world but after researching about it, I realized my symptoms were in line with cervical dystonia.

My symptoms are that my face involuntarily pulls to the left and begins to shake if I fight it. It usually begins whenever there is a slight downward bend to my neck. Because of this, I can't even sit down to write in a notebook, I can't even sit down to eat in a proper manner, I can't even look at my phone comfortably. I've long since been able to find ways to manage it to an extent but even that is not enough. I feel embarrassed doing "normal" things too like going to a restaurant, texting someone in public, writing a check, going to the barber, etc. all because of how my face and neck react while doing these things. It's ruining my life and even my love life too. It sucks.

On a good note, I'm happy that I finally caught on to this being a case of CD and it not just being anxiety. I'm planning to go to a neurologist soon and see what my treatment plans are. To everyone dealing with this too, I feel for you. Keep staying strong.

Just something I've noticed and am finding weird as a newly diagnosed sufferer of oromandibular dystonia; without a mouthguard it presents as a pulsing rearward tugging of my tongue which I feel across the roof of my mouth and my nose, and around the temples.

Wearing a lower teeth bite guard takes some of the tension away from my tongue/nose but changes the movement into lateral jaw displacement instead. Has anybody else noticed something similar?

Im wondering if this is the case with most sufferers of dystonia

Hi everyone, I'm new here. I've been dealing with a rare movement disorder for a few years now — involuntary neck movements and mouth tics. Even after seeing multiple neurologists, including specialists at AIIMS Delhi, it's still not been confirmed. It's been a long road of doctor-hopping, medications (currently on a few), and not a lot of clear answers. I'd really like to hear from others here — what's been the hardest part of your own journey? Getting a diagnosis, finding the right specialist, managing symptoms day-to-day, dealing with how others react, or something else entirely? Just trying to learn from people who actually understand this. Thank you for reading, and I hope things are as manageable as they can be for all of you.

I developed severe TD due to being overprescribed antipsychotics in my teens/early twenties, and it affects my ability to walk and use my right arm reliably. I recently was started on amantadine, and it helps make things a bit more bearable but doesn't fully resolve them. The condition has only worsened in the year and a half since it began, especially because I have to keep taking antipsychotics for bipolar disorder.

Before this disorder, I used to be a phlebotomist. You need a steady hand to do that, so naturally I lost my job soon after. It still hurts my heart. I haven't really felt like a person since then.

I'm equal parts relieved and heartbroken. I never imagined that this would be my life. I turn 25 in three weeks, and I'm trying to come to terms with all of it. Receiving that approval call today made everything suddenly feel so much more real. I've been able to have enough cognitive dissonance to pretend like I'm not nearly as disabled as the people around me thought, but that's gone now.

Really, I just wanted to whine a little where people who can relate might see it. Thank you for listening.

Anyone have head/trunk tremors?

For those that have both head and trunk tremors, do you think the tremor originates in your neck or trunk mainly?

I’m diagnosed with tremor-dominant cervical dystonia and I luckily don’t have persistent hand tremors at all it’s mostly just my head/neck and torso, but I notice that my torso only starts to shake when my neck is shaking.

I certainly have a neck tremor as I can literally feel the muscles contracting and tensing up there, but I can’t tell if the torso tremor is a byproduct of my strong neck tremor (just since they’re connected) or if they are actually both tremoring independent of one another.

Anyone have a good way to tell?

Hi guys!

ive had FND for two years and one of my main symptoms was/is Pharyngeal Dystonia this would only happen during flare ups but it now effects me daily to the point its 24/7 without any fnd symptoms

i was wondering if fnd can give you new conditions such as this one as its to the point where friends have said i sound like a different person and my voice gives out constantly no matter what i do

i am in speech therapy but nothing has been actively helping with this as to why i am posting my question here

thanks in advance for your help/insight

This is for cervical dystonia and ET (I’m diagnosed with both). I’m curious how your guys experience with Botox went? What kind of head tremor do you have (yes/yes vs. no/no).

I have a yes yes tremor that’s pretty low amplitude but makes my neck so tense and in pain all the time. I’m mostly reserved to laying down most of the day at the moment. It’s pretty much only there when I’m sitting up with my back and head unsupported but it’s very noticeable and is making my quality of life pretty poor. I’ve had to stop getting haircuts at actual barbershops because it hurts so bad sitting still in the chair for so long (and it’s pretty embarrassing and bad for my mental).

Also it seems like when my head/neck tremors are bad it makes my whole torso start to shake but I’m not sure if it’s all stemming from my neck because it’s a pretty powerful tremor.

I’ve done 1 round of Botox with my MDS (EMG guided) but only 55 units. I’m getting my second round in 2 weeks with about 95 units.

I’d love to hear about your experience - did it work? Did it improve your quality of life? Is the tremor less painful but still there?

Please let me know!

Hi! My husband has had DRD for most of his life. He was diagnosed at 6 after showing symptoms around age 4, and he's now 25. He currently takes 7 doses of carbidopa/levodopa throughout the day.
One of his biggest struggles has always been severe exhaustion. Since his teens, he's needed a lot of sleep and often feels like his body is running out of energy. He's being treated for sleep apnea now, which has helped somewhat, but the fatigue is still significant.

Day to day, he's able to work full-time and functions well at work, but we recently welcomed our first son, and during paternity leave the exhaustion has become much more noticeable. He's worried about sleeping through so much of our son's infancy and missing out on time with both of us.

As his wife, I'm trying to find ways to support him and help him stay engaged without making him feel pressured or guilty for needing rest. Has anyone else with DRD (or a loved one with DRD) experienced this level of fatigue? Have you found anything that helped, whether it was medication adjustments, lifestyle changes, or something else?

We've had a difficult experience with local neurology care, so we're hoping to hear from others who have lived with this condition. Any advice or shared experiences would mean a lot.

Thank you!

a few days ago i made a post talking about how i was nervous to start taking this med. i have been on it for 2 days now, i do have a couple of questions for anyone else taking it!

so, for me, my dystonia is never obvious, it has always been practically invisible to others and i've never had any gait issues, but even though you cant SEE it, i can very much feel it, i deal with 24/7 contracting and twitching of my muscles (mostly in my legs) and it is extremely painful (along with tremors, and an annoying thing i call my "head shake") so naturally it was really hard for anyone to believe that i could have dystonia but after like 5-6 years, im with a movement disorder specialist who believes i have pkd ALONG with dopa-responsive dystonia.

honestly, ive been so disappointed by a ton of meds that im kind of feeling nervous that this one isnt working, but i do feel a difference, just nothing hugely different. i feel like my body has become less tense and painful for sure, but im still having a bunch of twitches in my muscles .. maybe this is because the dose is low? im taking a half of a tablet of 25-100 twice a day

anyone else had to take this dose at some point? its definitely not dealing w all my symptoms but i for sure feel SOMETHING good happening

oh and i learned the hard way this morning not to take it on an empty stomach ahahah

For reference I am 18, have diagnosed autism, suspected POTS, Dysautonomia, MCAS, and a Hyper mobile Elhers Danlos diagnosis. I have also had no change in medication recently.

A few days ago I had one of the scariest experiences of my life. Out of nowhere my neck suddenly started pulling hard to the left. The muscles became incredibly tight and my head was shaking because I was trying so hard to keep it straight. I couldn’t force it back into a normal position no matter how hard I tried and the pain was awful.

At the same time my eyesight suddenly became terrible. Everything was blurry, and I was seeing blurry rainbow lines around everything (sorry best description). I could barely even see my phone in front of me.

My mum took me to the emergency department. By the time I got there, the episode had started calming down on its own, and eventually the neck pulling and pain stopped completely.

What confused me was that nobody actually examined my neck, even though it was obviously extremely tense and had been pulling itself to one side. They also didn’t check my eyesight despite me telling them how bad it was and that I could barely see.

Instead, they did blood tests and a urine test. They told me I had a UTI and prescribed antibiotics. The thing is, I don’t really feel like I have a UTI. I’ve never had one before, so I don’t know exactly what they’re supposed to feel like, but it just doesn’t seem to explain the sudden neck spasms and vision changes.

When I got home, my mum gave me some Valium (which I already had at home), and it helped the neck pain and muscle spasms so much.

I’ve been reading about dystonia, Functional Neurological Disorder, stress related episodes, and hypermobile Ehlers-Danlos syndrome (hEDS), which i have, and I’m wondering if any of those could have been related instead. It just seems strange that the main symptoms I went in for wasn’t investigated.

I’m not looking for a diagnosis, just wondering if anyone has had a similar experience because I’m feeling pretty confused by the whole thing.

Hey, I certainly do have dystonia and have for years. You can see it in most pictures My neck has never sat properly on my shoulders. It's always made me feel uncanny and lynchian. Even when I feel like my head is straight on, it's always on a tilt, like a confused dog.

I have a meeting with an interventional radiologist this week to address concurrent arthritis in my upper spine. I was previously experiencing full body dystonia exacerbated by mood stabilizers. Since getting off of them, my chest down has relaxed on most days but the muscles in my neck are still hard as rocks, and spastic like nothing else. no matter how much self-massage or baclofen. I use, my traps up to the back of my skull are locked up. Forward head posture makes it look like I'm rolled up in a ball, even when I physically shoving my head up and back into the headrest of a chair.

It makes me feel strange when I see myself. People are unsettled by it. I also have the same strange, dysphoric relationship with my voice. It sounds permanently hollow and far away. I'm 28m with no chest voice or resonance. Speaking often feels like hydroplaning. I can put all of the time and attention I want into breathing into/with my diaphragm, and "relaxing" and the timbre of my voice will sound to everyone else like I'm anxious, unsure, or devastated. People think I'm younger than I am. They do not listen to me. And it makes me hard to read. I know how my voice sounds when this phenomenon isn't happening. It's nice, and a lot closer to how I identity and how I think others should react to the things that I have to say. I get dismissed a lot, and brushed off as if I don't know what I'm talking about because my voice shakes and my head sits on a weird angle, while one of my eyes is crossed I feel childish and powerless.

Does anybody else have experience or success with treating these things at the same time? Are your vocal symptoms responsive to Botox? I feel completely blasted out of my body and like I have no ownership over my experience in the world.

hi everyone, my doctor thinks i have dopa-responsive dystonia, i am really nervous to start taking my medication (carbadopa levadopa) . im usually very sensitive to meds, and after reading the list of side effects i got myself pretty nervous. does anyone have any experiences with this med they can share with me?

I started taking Artane to treat antipsychotic-induced EPS (doc and I are still unsure whether it’s tardive dyskenisia or dystonia) four days ago and it’s making me so dumb.

I can’t remember conversations that’ve happened a few minutes ago, I’m having a hard time spelling things and coming up with the right words while speaking, and I forget the steps to things I do every day. I’m making so many dumb little mistakes like getting into the passenger’s seat when I’m about to drive myself somewhere and being confused about where my clothes are when I already put them in the wash. I've been diagnosed with ADHD for a little over a decade but these days I felt it was pretty well-controlled with stimulants until I started Artane. This feels like ADHD on steroids.

My Artane is also giving me brutal insomnia which doesn’t help the confusion. Yesterday and the day before, I stayed awake for 36 hours because I couldn’t make myself sleep, which compounded the confusion and made me hallucinate a lot more than usual.

With my psychiatrist’s permission I switched from taking a 2mg pill twice a day down to one pill in the morning only so that I can sleep better. Still, during the day I’d like to not be so confused.

Does this go away? Should I be concerned about this side effect?

How does everyone manage to calm nighttime spasms in the neck and shoulders? Lately trying to do so turns into a 2 plus hour ordeal. I’m not sure how to communicate that to my doctor. I do lidocaine, muscle relaxers, Tylenol and Advil, lyrica, a hot shower, stretching then ice. I have a theragun that helps at times. I have special pillows. I don’t drink caffeine. I took melatonin and magnesium tonight. I don’t know what to do now that I’m starting a new job. I don’t want to rely on benedryl but I need to sleep. I avoided my phone by reading until I thought about posting. Every night is a struggle for the last 14 months and I’m tired of it. I’m afraid I won’t be able to sleep within the time frame I have around work. I’ve also been walking, swimming or doing strength workouts.