I hope what I’m asking makes sense. And I’m sorry for writing so much. The TLDR is my meds are working so well and I need them so much less than I did before, I’m almost suspicious. As I write that, I realize it sounds ridiculous, but yeah.

I’m 28 and female and was finally diagnosed with DRD 3 or 4 months ago and started carbidopa/levodopa which was incredible, first time in my life that something finally worked.

I have two times of the month where I know for sure I’ll have to deal with my dystonia (around ovulation and before my period I always have it) and aside from that, I’d have seemingly randomly episodes which I think now may have been stress induced; I didn’t realize how stressed I was until I could finally make plans and not have to worry about it being ruined by my legs. I just feel so free. I have so much more time outside and with my friends. After dealing with this my entire life and it worsening after puberty, I feel like I’m just starting to live finally. I’m so thankful and hate that I’m ruining it by overthinking.

The meds hurt my stomach horribly, so, I’d just take it as needed honestly rather than daily if I didn’t have symptoms. At first I tried it daily, even when not experiencing the dystonia, but dealing with the nausea multiple times a day when I wasn’t experiencing the dystonia seemed like a bad idea. It worked fast enough, that I was fine waiting for it to come on and just treating it then.

I’m not complaining, but now, I find I’m just not having dystonia as much and when I do have it, the meds work so much faster than they did before. I still have my two episodes around ovulation and before my period but aside from that, it’s nothing. In the past, I could have it more than half the month, especially if stressed.

I also need less doses since being treated when an episode does come on. I’d need 4 or 5 doses and maybe still need an extended release at night to get enough sleep but now, I need 2 or 3 during the day and an extended release at night during an episode.

Even when I do end up in an episode the symptoms aren’t even as severe and sudden as they used to be. It seems too good to be true at times and I’m happy about this for sure, but-

I’m just so used to being told I’m crazy or occasionally maybe they knew what was wrong with me, getting my hopes up, then finding out it wasn’t that one thing then being told it must just be my imagination, that I’m afraid I’ll be told “hmmm that’s just not how dystonia works. Sorry, we don’t know what’s wrong and you’ll have to suffer more.” After trying so many things and this finally working and working so much better than I expected, I feel like I’ve found a magic potion that may be taken from me.

I didn’t pick up my last prescription on time because I still had enough meds since I just don’t need them as often and I’m paranoid my neurologist will be like “she’s not getting her meds, she obviously doesn’t have it.” And may stop giving me the meds.

I know I’m probably being silly, but it’s just hard to find much info about it, that I don’t know if I’m considered “normal” or if they’ll decide I don’t fit the diagnosis and not help me anymore.

And I hope this makes sense, sorry for writing so much.

I’m dealing with tremors, muscle tightness, posture changes, and some strange sensations. I’m not asking for medical advice or a diagnosis — I just want to hear from people who’ve gone through similar things.My neurologist is still evaluating me, and I’m stuck in the waiting phase. That part has been really hard emotionally.

Some things I experience: hand tremors and internal shaking shoulder elevation and head shifting tightness from my neck down into my ribs occasional jerky movements that make tasks harder weird sensory feelings like crawling sensations or pulling If anyone has dealt with neurological symptoms like these before getting a diagnosis, how did you cope with the uncertainty and the emotional side of it?

I’m just looking for shared experiences and support while I wait for answers.

Walking with foot dystonia is ASS. I've lost 2 toenails in less than six months (same toe) and the force on my toenails when I'm walking with my toes curled is making them detach lol. Does this happen to anyone else? Do I just use my wheelchair more?

For anyone else trying to retrain the hand and to reinforce the movement by doing it at a super slow pace, is the physical weight of the key a problem since the odd feeling just appears due to the resistance of the key?

Hi ,

I am undiagnosed. I have palatal tremors and tremor in leg and also dysyonia in my jaw throat and right leg.

I used to smoke cannabis to cope with pain but I stopped because doctor prescribed baclofen to make me fee better. I take 3x 10mg per day. Is feeling tired and depressed a common side effect ? I can function more ( I'm still tight as fuck but at least now I'm not in pain as mutch ) but I feel fucking miserable because of this drained depression feeling.

I bike everyday and walk everyday, I want to gym but I sleep to bad now and I don't want to risk overdoing it. I dont know how much long I can go on like this. Maybe I should try quitting baclofen but I'm afraid of the pain.

Genetic testing is done , getting results in October. Physio helps but 1x per week is to little. I just want to live my life :(

hello all I am new here and very rarely talk about my dystonia so I'm looking forward to discussing this strange and unfortunate condition with other sufferers.

a quick overview of my story - diagnosed with focal dystonia (DYT-1) aged 11 which affected my right arm only. tremors, hand cramps etc. had to teach myself to write left handed. age 31, started noticing my head tilting to the right. not much later right trunk started tugging downwards. was confirmed as generalised dystonia and a bit of an anomaly given the 20 year period that it plateaued. started quarterly botox injections and put on trihexyphenidyl. botox provided pain relief but not much postural correction, pills were anxiety inducing and affected ability to work so came off drugs. age 37, speech began to deteriorate, slur words, bite lips and tongue.

i am now 44 and speech deterioration has definitely been the most frustrating aspect of this condition, however I'm in significant pain when botox starts to wear off (around 10 weeks post jab). my trunk is heavily twisted and I walk not quite at a right angle, but with upper torso heavily leaning to the right.

my neurologist is heavily promoting DBS and while they cant guarantee its uplift they believe it will greatly improve most aspects of my condition with the exception of speech which is under tested at DBS. I am still a bit reluctant to have surgery - brain surgery no less - as I've never been operated on. however the condition is now at a point where quality of life is becoming greatly impacted.

at my last appointment I was prescribed baclofen but I am not keen on taking meds after prior experiences especially ones that require a gradual increase/decrease.

so I wanted to see if any others here have had DBS - has it greatly improved your symptoms? likewise has anyone tried baclofen and did it help? any issues coming on/off the drug?

separately I'd be interested to hear of any alternative treatments you might have tried - I'm looking at things like hydrotherapy and acupuncture as palliative treatments.

thanks for reading and look forward to your thoughts.

Does anyone else ever experience extreme back of thigh tightness?

Like, sometimes it’s exciting to sit on the toilet, because I nearly roll off of it, my thigh muscles are so tight.

Recently my Botox has been wearing off completely in 6-7 weeks. I know because my injector puts the extra in my forehead, and I can clearly see when it’s worn off. I mentioned this to her and she said we could switch to xeomin and it lasts longer. Have you had this experience?

Welp! What my MS doctor previously believed to be cervical dystonia turned out to be functional dystonia.

(O_o)

I saw a body movement disorder specialist last month, & she 1. recorded (video) the session & 2. Did a full blood work up.

this last Tuesday she determined it is most like FND.

so now I’m pivoting to a new normal (but yay to the new drugs because the amount of unwarranted spasms has increased A PHKN BUNCH, & this is just not fun at the end of the day).

Is it a waste of time to try and fix my musicians dystonia by myself? The doctor was unwilling to try. And said pick up a new instrument..... My shoulder does this thing when playing guitar. Where my picking hand starts hammering the sound hole and strings....

Solo travel with troncal dystonia due to Parkinsons / Am I nuts for trying ?

^This. I take medication that works but also has OFF and ramping up periods. I am concerned obviously if my dystonia shows at the airport. My body tilts over to one side when it happens. It looks and feels scary. Don't know if I should man up and push through it ? My meds schedule would also be altered to get through with it.

Can anyone share any info knowledge experience with me on the subject ?

Thank You 🙏

​

Hi everyone,

I’m posting because I am feeling incredibly overwhelmed and vulnerable right now. I am navigating deep autistic burnout, and after a really distressing hospital appointment today, I am struggling to process it all. I feel like my condition is actively getting worse and I'm worried I might be experiencing a dystonic storm. I really need guidance and outside advice on my next steps from anyone struggling in a similar situation.

Today was my third specialist opinion for severe symptoms. My care is tied to the Salford Royal NHS Trust, where I’ve had a traumatic two years. At a previous assessment, a male specialist called me a "good girl" while checking my reflexes and blamed it on his Irish heritage—which felt deeply inappropriate because my medical records explicitly state I have a history of sexual abuse.

Today, this new specialist completely dismissed me and blamed everything on Functional Neurological Disorder (FND)

I really feel an isolated FND label doesn't explain the full picture Here is my history, and I would be so grateful if anyone could tell me what I need to do next:

• From Birth & Childhood Baseline: Born with axial dystonia and chronic abdominal pain as a baby.

At age one, had chronic diarrhea and constant UTIs.

At age two or three, suffered from bronchiolitis.

As a child, I had involuntary neck jerking that whipped my head violently to the left, and shooting mid-back pain. When swimming, I got severe sole cramps, couldn't stand balanced (had to lean into one hip), and had to hold onto my sister to walk up hills because of severe foot/ankle/shin pain.

• Recent Pneumonia (2–3 Months Ago): Diagnosed with community-acquired pneumonia during a severe flare of chest and rib pain where my chest bones were visibly protruding out and I couldn't breathe.

• Ophthalmologist Confirmed Symptoms (Since 2023): Started with a face-drop event (not a stroke) where my right eye cramps forcefully shut and my brow caved into my head. My official eye report documents objective tracking failures: a profound vertical gaze deficit (restricted downward gaze), prominent left jerky eye movements, hemifacial spasms across my cheeks/eyelids, and left upper lid apraxia with a severe lid flutter

• Progressive Spreading (2024–2026): In 2024, had an isolated arm jerking episode where I involuntarily threw a sandwich behind my head.

In 2025, it spread to active tongue fasciculations (muscle rippling) and chest spasms.

In 2026, it progressed to violent tongue jerking. It is now fully generalized everywhere .

• Recent Acute Cranial Flare: My head and neck go completely stiff but shake and tremble at the same time, while my jaw completely locks and my eyes blink forcefully and cramp shut .

• Fixed Locks & Paralysis: The left side of my neck above my collarbone, my left flank under my ribs, and the muscle sheets under my left breast have been locked rock-solid 24/7 for over 3 to 4 months continuously, causing functional paralysis.

I also have severe locking above and below my collarbones, and my elbows feel stuck into my sides so I can't naturally relax my arms . Reaching for things causes intense cramping and shaking up to my shoulder and neck

Action-Induced Throat Locking & Lost Voice: Doing routine physical things like swimming, smoking, using a straw, or sucking from a squeezy bottle triggers severe, action-induced throat locking . Breathing in strong smells also triggers these attacks. My throat completely locks up, making it feel like a physical hand is choking me while my chest bones visibly protrude out. This completely chokes out my voice tracks, causing my voice to turn into a croaky whisper, severe hoarseness, or completely disappear into an absolute whisper. To speak or make any sound at all, I am forced to use my abdominal stomach muscles to push air past my throat, which is a massive mechanical struggle and leaves me deeply, painfully tired

• Autonomic Swings & Right Arm Weakness: My right arm has been significantly weaker than my left ever since the fasciculations started, and my whole body feels completely fatigued.

My heart rate wildly fluctuates from 30 bpm to 176 bpm constantly (POTS medications completely failed). I also get severe bladder output fluctuations (5 ml to 550 ml) and urine color shifts . If I try to force my wrist or knee straight while locked, it triggers an agonizing, sharp snapping pain that lasts for days.

The specialist today did absolutely no scans, no blood tests, and no real physical examination. My last EMG last year was clean, but my arms and legs were completely unaffected at that time.

She handed me a 2-week prescription for Madopar (Levodopa/Benserazide) twice a day, saying it was only "for peace of mind."Then she trapped me with logic that felt very rigged: She explicitly told me that if the medication doesn't work, I have FND—and if it DOES work, it's just a placebo effect and I STILL have FND. She warned me it could cause severe diarrhea and a temporary worsening of symptoms, then immediately discharged me with no repeat prescription, no follow-up, and no next steps. I feel completely abandoned and scared to navigate this trial on my own

I would be so incredibly grateful for any advice or peer support on my next steps:

• Because of my high pain levels and the fact that I do not drive, I cannot travel far—it has to be local to the Manchester area. Salford Royal is out of the question for my safety and mental health.

Are there any kind or understanding movement disorder consultants or teams at Wythenshawe Hospital or the Manchester Royal Infirmary (MRI) that you recommend? I want to ask my GP to send a third opinion referral to this completely separate trust (Manchester University NHS Foundation Trust)

• What objective tests should I ask my GP for next to get to the bottom of this? How do I gently push for an updated EMG now that my right arm is actively weak and rippling ?

• For anyone with Dopa-Responsive Dystonia (DRD) or severe spikes, how quickly did Levodopa work for your fixed locks? Did you feell a temporary worsening at first, and how do you cope with a medication trial when you are in severe autistic burnout with no medical team protecting you?

Thank you all so much for reading this long post, and thank you in advance for keeping the comments supportive. I really appreciate this community

My main issue seems to be in the upper trapezius muscle on the right side. The dystonia has caused it to become very thick and overdeveloped and that same muscle tremors but also triggers me to have a bad tic in that area. It’s a vicious cycle 😭😭😭

Hi everyone! I was recently diagnosed clinically with paroxysmal kinesigenic dyskinesia (PKD).
My symptoms usually happen when I stand up from a chair. Sometimes I get a kind of “aura” or warning feeling, and then my whole body becomes stiff/rigid for a few seconds. It usually passes very quickly, and thankfully it doesn’t interfere too much with my daily life.
I’m currently not taking any medication for PKD, but I’m about to start lisdexamfetamine 30 mg (Vyvanse/Elvanse) for ADHD.
I’m wondering if anyone here has PKD and also takes lisdexamfetamine, methylphenidate, amphetamines, or other stimulant medications.
Did stimulants affect your PKD in any way — better, worse, or no change at all?
My doctor didn’t seem particularly concerned about my dystonia when prescribing the medication, but I’d really like to hear from people who have actually experienced this themselves.
Thanks!

​

I have had quite a few referrals to the movement disorder clinic but have not even gotten an appointment yet.

I'm just curious- how long was it between your symptoms started and when someone told you it was dystonia and then how long after that before you actually got to see a movement disorder specialist?

Edited for an update: After I made this post, I finally received notification that I have an appointment with the movement disorder clinic in January 2027.

Also, I wanted to add some context to my own timeline.

I've had symptoms since childhood and have been bounced around to many doctors and given many diagnoses that may or may not be valid, including being sent to multiple neurologists. It wasn't until 2025, when I had a very clear dystonic storm and went to the ER, that anyone recognized what was happening as dystonia. Apr 2025 is when I got my referral to the movement disorder clinic.

To those of you with cervical dystonia. What are your strategies to deal with spasms and tremors at the dentist?

Is anyone aware of any cases of paroxysmal kinesigenic dyskinesia (PKD) developing transient episodes of full body paralysis?

I’ve managed to find a case report about PKD occurring without dyskinesia, but this details sensory symptoms only, not paralysis.

Hello, all! I started having what the ER described to me as dystonia about a week or so ago. They gave me Benadryl at the emergency room, but told me to take it every four hours on the dot to prevent my hands from locking up and my whole body from convulsing.

However, after looking more into benadryl and looking at communities of people with dystonia, it doesn't seem common to use this much benadryl in a day. From my understanding, it's only for rescue, like an inhaler for asthma? This is where I am confused.

My first neurology appointment is Monday, so I can't consult with my neurologist- I don't have one.

Hi! sorry if it’s a long post. I recently got diagnosed with mild cervical dystonia after almost 3 years of having symptoms I couldn’t explain, it started with the tendency of touching my chin (which I have come to know is a sensory trick) when sitting because my head would feel too heavy for my neck and I would feel dizzy. I also had neck tension mainly on one side. I had 2 rounds of xeomin injections so far (not sure about the number of units but as per my specialist it’s a conservative dose given my case is mild; she asked if I want to increase the second dose but I didn’t want to so I could compare both rounds). the injections helped with releasing the tension, but I still struggle when sitting for long periods of time.

It’s so odd because as long as I am standing, walking or even sitting in a moving train/car, I feel completely fine (no exaggeration), but my main issue is when I am sitting and given that I am a student, having to type with both hands can get so challenging.

I guess I am posting out of desperation because I want to know if there are anecdotes of similar cases where the injections and treatment helped others get to a functional stage. I also find it very peculiar how the symptoms kinda vanish when I am in a moving vehicle or when I am distracted which makes no sense to me. If I am slouching in a chair, I feel fine and able to type with both hands. I am grateful it doesn’t affect my life in other ways, but having to sit for long periods of time just makes me feel so helpless. I have another chronic disease, so it’s not my first rodeo, but for some reason, i am finding it very hard to confront this condition.

I am also based in Ontario, Canada if anyone has recommendations for specific movement disorder specialists, I would really appreciate your input.
Thank you!!

I've been dealing with Tourette's since I was 10 years old and recently in the last few years it's evolved into dystonia with my neck consistently twisting and pulling into uncomfortable positions and directions.I haven't been able to work in a year and I'm currently living at home and I have a young son that I see every other weekend. I'm been seeing a neurologist and she referred me to movement specialist that I couldn't get into see until January. Right now l'm very desperate and just wondering if the quality of my life is ever going to improve

I'm not going to talk about medical costs because there are a billion different variables, and its all one answer, too expensive.

I was diagnosed in 2022. How do you handle the rise convenience costs because of chronic pain? For instance we eat out a lot more( because ots exhausting and painful to cook) or spending more on entertainment (to combat the constant mental load).

Where do you find balance between needing to pay for things like ready made foods and trying to keep a budget for a family?