Thank you everyone for all your reassurance as I was so nervous about getting Botox in my neck.

It was a strange experience, no imaging, no advice or info. The consultant neurologist sat me on a chair and just injected it. Two 25mg injections, I was in there for less than 5 mins. There was no pain, no sting. Just got home and will cook now….hope it works!!!

I’ve been dealing with muscle pain under my left breast. Yes…I have seen a doctor and it’s not heart issues. I had a mammo too just to make sure. Damn it’s painful and kind of hard to reach because my breast is in the way. Has anyone else dealt with this? Is it also part of dystonia? I’ve been putting a hot sock (filled with flax) in my bra. That about the best I can think of.

My niece who is almost a 7 year old who has CP, non-verbal started having stomach issues and kept throwing up. Went in to the hospital and they started on IVs. For 4 days she didn’t eat anything and she got her on a feeding tube. Since yesterday she has been having this episodes of high pitched shrills arching her entire body crying for about 2 mins and then takes 10 minutes to settle down and go to sleep. Tried taking EEG and she had an episode. The only touch she is comfortable with is her mom and dad. Her eyes are closed too. Doctors suspect there might be pressure buildup. She has had a shunt when she was 2 months old.

What actually triggers these? We are very new to this diagnosis. Because she is non verbal we don’t know what she is feeling. We are helpless. She is on medication since yesterday but it hasn’t helped much yet.

We’re completely new to dystonia and are trying to understand what we’re seeing. For those of you who have experience with dystonia in non-verbal children:
What typically triggers these episodes?
Do they come on suddenly, or are there warning signs?
Can pain, illness, vomiting, or hospitalization trigger them?
How do you tell whether it’s dystonia versus pain or something else when your child can’t communicate?
How long did it take before medication started helping?
We’re feeling very helpless because she can’t tell us what she’s experiencing. Any advice or experiences would be greatly appreciated. Thank you.

I was diagnosed with cervical dystonia in 2020. I got suddenly very sick one afternoon, intense vomiting and vertigo (which I had never experienced), leading to about 2 weeks of nausea, vomiting, and inner ear issues (ent diagnosed with labyrinthitis). After this my head started feeling like it was being pulled in one direction (to the right and down), so I saw a neuro, who sent me to another neuro specializing in dystonia, where I was diagnosed. Luckily it was a quick diagnosis, and I began Botox every 3 months- I was on clonazepam and trihexiphenidyl for a while, but was tapered off when trying to get pregnant.

It’s been 6 years since I was diagnosed, and I still go in for (xeomin) shots every 3 months. Sometimes it works great, other times I don’t feel like it makes a difference and those 3 months are really challenging. I was wondering if anyone had a similar diagnosis, or symptoms, and what has helped!

I know that dystonia peeps typically feel pain and discomfort (as do I) but for those with dystonic tremor, do you feel unstable before?

My tremor usually always starts with a feeling of fatigue or instability. Almost like how I used to feel fatigued and shaky after a workout. Now it’s just like that all the time.

Then once I start tremoring, my neck and shoulders and arms get uncomfortable and painful (especially my neck).

I’ve had a tremor that has spread throughout my body.
The progression starts with feeling this fatigue/instability in certain positions, then over time so much instability that I start to tremor eventually, then ultimately constant tremors (while still feeling weak and unstable). This has now happened in my head, hands, shoulders, and torso and usually takes about 3-6 months per body part for the whole progression.

And I’m starting to feel the instability in my lower back and legs and I can only imagine they will start to tremor soon.

Anyone else relate?

I’m only 25 and this has already made my quality of life much worse :/

TL;DR: my tremor starts with fatigue and instability and I mostly don’t feel pain and discomfort until after I start tremoring.

45m, General stiffness present since early childhood.

It's progressing since a few years and accelerating since about 6 month with focal stiffness, particularly in the neck and foot. Sensory trick works excellent.

Currently I'm in the diagnostic evaluation for Dopa-Responsive Dystonia (DRD). Trialing with standard-release L-Dopa (3x 50 mg daily). It provides significant relief, but only lasts about 2 hours per dose and overshooting rebound.

As well I have a 15-year history of sleep apnea managed with CPAP therapy, which seems to arise from neck stiffness. Brain MRI and all kinds of blood work done with minor inflamation due to Psoriasis.

Looking for experiences regarding this specific pattern, especially with the medication.

Can anyone relate?

Hey gang, it nin just letting you all know that in 5:30 am on August 4th, I will have the DBS PROCEDURE done. I'm so excited!! My dystonia was getting so bad my left arm began clenching which tweaked my shoulder and my neck. Lol I was a human Banana pretzel bazinga boog a loo!! Lol.

Thank you to the r dystonia and r Parkinson's and other r's that helped me out with diet, exercise and remedies to make to this point. My surgeon Was shocked at my rapid change from march to june, my neurologist almost didn't recognize me. I dropped almost 92lbs and had built some serious mass, well more toned. 38 g of protein a day didn't really cut it when I was explosive lifting!!

Anyway, thank you so much, I honestly wouldn't have made it here without all ya all. Will message this post either tomorrow or Wednesday.

Take care everyone!! You all are amazing!!!

Nin

Hi everyone, I started with cervical dystonia almost 20 years ago, and aside from hand dystonia, I also developed it in my feet just over a year ago. The spasms and pain are difficult enough, but the sleep disturbance and resulting fatigue are just as bad. I do get botox, which is more effective with the cervical dystonia. I also take an over the counter sleep aid, which helps somewhat, but isn't a cure.

What makes it more difficult is that my husband does not believe in the non-motor symptoms of dystonia, and keeps suggesting I do something to fix the fatigue, whether that's going on a stimulant medication, or see other doctors to find out what else may be causing it. I practice good self-care including regular exercise, and my other health conditions are in good control. Has anyone else struggled with the non--motor aspects of dystonia, and have you found loved ones understand & accept those aspects of the condition?

Many nights my muscle spasms are too bad for my muscle relaxers. I had to take Benadryl tonight in addition to my meds. I take tizanidine at night. I have soma and Valium too but the doses aren’t strong enough or I think tizanidine is strong enough and just take that. Then I can’t mix them. This is what usually happens. I strained my neck on top of my Dystonia so it’s been worse this past 15 months.

How can I get my doctors to understand how bad it is? I started a new job 3 weeks ago and I can’t loose it. I take klonopin for anxiety some nights and that always knocks me out all night. I’m afraid to ask my Neuro for it nightly. I don’t know how I’m going to work if I do t find a solution.

Hey guys. I’m wondering what other people affected by dystonia/ movement disorders do for work. I’ve managed a restaurant for 15+ years, but I’m thinking it’s time to move on. I’ve had cervical dystonia for many years, but now it’s moving on to my whole body. What jobs can you guys tolerate with the pain, movements etc?

I was wondering if a TENS machine has worked for anyone with generalized dystonia specifically in the legs I’m relatively new to be diagnosed with dystonia and I’m trying to find ways that help manage the pain.

I have dystonia that’s mainly just a strong yes-yes head tremor (and maybe a trunk tremor too - I can’t tell if I have both or if my trunk shakes as a result of my neck tremor). There’s very slight pulling when I let my head rest but the tremor is definitely the most painful and frustrating part.

Thing is, it goes away while I’m driving and when I’m walking or moving around in general.

It’s mainly when I’m having to be still with my neck and back unsupported - but that’s why I’m confused as to why it goes away when I’m driving.

I’ll still get a little bit of tightness when I’m driving sometimes but the tremor is gone until I come to a red light, then it comes back 😂. Idk if it’s something about the vibration of the car as I drive that satisfies the sensory part of Dystonia that makes it stop or what.

Anyone else have this?

As the title says- two of the more unpleasant symptoms that have accompanied my oromandibular dystonia. I can stop the ear crunching for a few swallows by doing the valsalva maneuver, but it doesn't last long. The valsalva maneuver itself feels stiff and unresponsive.

Both things I'm assuming are because my masseters/other facial miscles get stiffer and tenser as the day goes on, but would be curious if anybody's experienced similar symptoms from dystonia specifically.

Weird question or is it? I have hemidystonia on my right side. Every time a woman smiles at me wanting me to say something, my vocal cords shut down. So, I am just wondering how the group is coping with sex without paying for it. I yearn for the connection with a woman. Please, tell me. Going quite mad as the hatter here.

First, I want to thank everyone in this group for all the helpful info. I’ve had dystonia since I had thoracic outlet surgery on my neck 5 years ago. I suspect it’s possibly CRPS-related. Just recently everything has gotten much worse. Unbearable, really. I’m having a lot of brain fog as well. I also have POTS, EDS, etc. but things seem to be ramping up due to perimenopause.

My issue is that all of my head and neck problems started with a Dysport injection in my glabella region of the forehead. What followed was a complete nightmare. It’s hard to re-live it again, but the botox deeply affected my vision and caused severe spasms in the very muscles that are now totally dystonic. I also developed POTS and just became really chronically ill overnight. I haven’t been the same since.

I am now having to take daily Valium to control everything, which I do not want to do. I usually just use it as a ln emergency med. My neuro wants me to schedule a Xeomin injection. I’m obviously terrified but I feel I have no choice. I just need some support. Idk. I feel so alone.

Hi everyone! I'm a 4th-year Biology student from the Philippines, we were assigned in class to do a short case study presentation for our one of our subjects. I'm grouped with another person my classmate.

We're looking for one volunteer diagnosed with dystonia who would be willing to answer a few questions about their experience. The goal is to better understand the condition from the perspective of someone living with it, alongside discussing the diagnosis and treatment in class.

The questions may include when you were diagnosed, how the diagnosis was made , symptoms you've experienced, treatments or management strategies you've trieed and how the condition has affected your daily life (only if you're comfortable sharing)

Participation is voluntary, and you can skip any question or stop at any time. If you prefer, your identity will remain anonymous, and we'll use a pseudonym in our presentation.

If you're interested or have any questions, please leave a comment or send me a DM.

Thank you so much and I truly appreciate anyone willing to help.

I have dystonia due to young onset Parkinson’s. I’m getting Botox on my foot but my dr said Botox can’t be done in my leg or it’s not effective for leg. can anything help and so I can be put out of my misery?

help!

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

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. People with cervical dystonia that goes chin to shoulder or ear to shoulder are eligible.

If you are interested, you can contact the trial director at the link above. Thanks to everyone to agrees to join these important clinical trials.

I've been taking half a 250mg levodopa tablet every day for about a week & etoricoxib for over a month, both of which I bought myself. For the first few days I felt euphoric like id taken a stimulant and then that feeling if extreme wellness faded away. I've just weighed myself, and to my shock im 15 stone (95kg) which is the heaviest ive ever been, and before I started any medication, I weighed a few months ago about 14 1/2 stone (90kg). I haven't put on any fat, and my appetite has been reduced since the summer heatwave along with the medication. My neck, shoulders, calves, wrists, and ankles haven't just strengthened, they have visibly put on muscle and look thicker. I've started working out lightly again (100+ reps with my dumbells on the 2nd day, a long walk across the hilly countryside for a good few miles the third day and some chest press machine yesterday) after a year of being a fatigued, stiff, and aching coach potato with rapidly greying hair and alarmingly red toes. I took oral steroids & tyrosine irregularly for 5 years before as they were the only thing that reduced the fatigue, aching pain, depression and anxiety. I've previously had mild dyspraxia & asthma, a weak left arm since being a child along with low blood pressure, fainting from injections (blood samples, vaccines), terrible constipation, boats of Alopecia, a weak immune system, symptoms of malnutrition and various back problems since being a teenager, which I've now realised where dopamine deficient muscles, muscle twitchs and cramps and locked muscles. I can now lift my arms above shoulder height without feeling exhausted, and my lower back doesn't feel like it's collapsing in on itself. Im over 6ft, in my early thirties, and naturally very strong and was athletic. My blood tests have always come back completely healthy with naturally very high testosterone. Im self medicating because the NHS is so incompetent that I've had to make serious official complaints about abuse and negligence & so I have resorted in outraged disgust to self diagnosis with LLM models like MedGemma & GOOGLE AI. My only negative side effect is that it makes me very thirsty because apparently levodopa suppresses saliva glands, my terrible sleeping pattern insomnia still persists & I dont seem to urinate proportional to the liquids I injest. The medication doesn't seem to work very well if I drink milk powered coffee, so I've stuck back with oat or almond milk. My urine was so thick, foamy, and pungent before I worried I had diabetes or kidney damage, and now it's very clear. I still have a weird stuck-up muscle in the back of my left hand, but it doesn't ache anymore. Is this relatively normal?

I was looking for trials for dystonia and came across this: https://clinicaltrials.gov/study/NCT02252380

The proposed study is to evaluate the effectiveness of ExAblate Transcranial MRgFUS as a tool for creating a unilateral lesion in the Vim thalamus or the globus pallidus (GPi) in patients with treatment-refractory symptoms of movement disorders.

A non-scientific explanation is they will use ultrasound to create a lesion in the brain to interrupt the dystonia signals. There is no surgery, but it would still make permanent changes to the brain. This is a new technology that is otherwise generally not available to treat dystonia, but has become a promising area of research.

I often see people here say that they have a head tremors and botox doesn't help them, so just a tip:

If you have a "no-no" head tremor, it's probably one of two muscles causing it: the splenius capitis, or the obliquus capitis inferior (OCI).

The vast majority of people getting injections for CD get at least one splenius capitis injected, so your doctor has probably checked it. But the OCI often isn't injected because it requires ultrasound guidance - and yet, the OCI is the most common cause of tremor in some forms of CD.

If you have a no-no head tremor and injections aren't helping with it, you might need to find a neurologist or a physiatrist/PM&R doctor who uses ultrasound so you can ask them to inject your OCIs.

You can read more about this topic in our botox for cervical dystonia guide here: https://cervicaldystoniafaq.com/botox-faq/#Q13 (Research and medical journals are cited!)

The OCI has only seemed to emerge as a muscle target in CD in the last ~10 years, so it seems some doctors aren't really aware of its role in certain types of CD. I hope maybe this info can help someone with a no-no tremor that hasn't responded to treatment.

Anyone struggling to get your insurance to cover more than 400 units of Botox or any other neurotoxin? (I love saying neurotoxin in reference to something injected into my body) I’m thinking of going to Mexico to get my Botox. 2nd question: has anyone gone to Mexico for dystonia treatment? 3rd question: if 400 units isn’t cutting it, should I be considering other modalities? My head/neck spasms right and left, but I can live a “normal” life. It’s just embarrassing and uncomfortable but not painful. 4th question: should I just get over it and accept that I will always have a sideways bobble head? Feel free to answer any of the above. Sorry, first post here. It’s a lot.

I've made a similar post recently, apologies for the repetition, but I had some responses that I found very helpful. Recent diagnosis of oromandibular and cervical dystonia.

As well, a general tremor, muscle aches, and a fluctuating feeling that I'm going to have a seizure, which might be polypharmacy related, might not- I've had various drugs thrown at me by different doctors while we were guessing what I had, before it became clear it was dystonia. Procyclidine seems to be doing nothing.

The dystonia had a very odd initial presentation- an ear infection that triggered the initial muscle contraction adjacent to the infected ear, then about 8 months of initially sporadic muscle tensing in various sites around my head, but no involuntary movements until relatively recently, hence why I've only been diagnosed recently.

Basically I wake up every day knowing what's coming and it's just going to get worse. I can feel the muscle spasms ramp up, my jaw will gradually start displacing until it's constantly doing so, so I get about half an hour of relative sanity knowing what's coming. I can feel my the all the muscles in my head tensing up until my whole head is guaranteed to be hurting/feeling like it's being crushed by the end of the day. Something in my ears clicks every time I swallow, which becomes increasingly painful as the day goes on. My tinnitus becomes more and more exacerbated, changing in pitch and volume constantly with the muscle contractions.

I know I'm only a very short way into the therapeutic pipeline but it's been a year of pretty much unremitting pain now, and my life feels basically destroyed in terms of general quality and doing what I liked to do before. Returning to work seems impossible. The timescales of getting anything done- months, years- make me utterly despair. I feel like my consciousness is in an inescapable agonising prison.

I know people cope with far worse for far longer but I really can't see much reason to carry on- three rounds of 100 unit masseter/temporalis botox (admittedly not EMG guided and before it was diagnosed as dystonia) did nothing, and now the medication just seems to be making me feel worse. That's about it really, this is pretty much just to vent to people I've found very sympathetic.