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    Thunderclap Headache

    I had my second thunderclap headache this last week. I had my first about two years ago. I thouGHt something had exploded inside my head. This time something did - I had a small aneurism — if you can ever describe bleeding in your brain as small. I am doing well now, but am curious to learn more about this type of headache. Apparently they are rare. (of course!! I already have CRPS and dystonia - two other rare conditions). I have chronic migraine, and had 5 days of intense migraine last week before the thunderclap incident, so I’m wondering if there is a connection. Unfortunately the docs here in my small city don’t have answers for me. I am considering going to a headache clinic in Chicago my primary care suggested. Anyone else familiar with thunderclap headaches? any suggestions?

    3 reactions 3 comments
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    Takes me by surprise

    I just spoke with my neurologist letting him know that hemiplegic migraine and dystonia were tolerable this month till it wasn’t! A few hours after discussing supplements, etc, I sit in my sofa ready to unwind and watch a little TV. Out of the blue, I felt off, my left side got heavy and was unable to move. My face drooped and was unable to talk.

    After a few days of good health, I got struck with hemiplegic migraine again which led to another dystonia attack! Boy, these things always take me by surprise, but my dog, Rondo is always ready to be by my side.💜

    #ChronicMigraineSyndrome #IntractableMigraine #CervicalDystonia #DopaResponsiveDystonia #HemiplegicMigraine

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    Good Morning Beautiful People ☀️

    I am about to start doing Tai Chi as a way of getting some exercise. After getting the key dokey from my neurologist.
    This will be a great way of getting exercise, reducing pain levels caused by EDS, Dystonia, Bipolar Disorder, and other mental, physical, and emotional issues. Happy Doodle Day. 😆
    I finally learning to love myself and be as healthy as I possibly can. Little Granny Go Go wants to be able to play with my grand babies. I’m waiting to go kayaking and if all goes well, get back on my motorcycle.
    I am curious as to what the rest of you do?

    Cheers 👋

    #BipolarDepression #Bipolar2Disorder # EhlersDanlosSyndrome #EDS #Selfcare #Anxiety #Migraine #MentalHealth #Trauma #JointHypermobilitySyndrome #Selflove #Dystonia #Depression

    30 reactions 15 comments

    How photography helps take my mind off my pain from dystonia

    I have lived with dystonia and chronic pain for over 20 years. The very active life prior to dystonia is night and day compared to the forced sedentary current version of myself. Due to the pain and involuntary muscle contractions I live with, I have had to make changes to my activities. One of my favorites is photography.

    I love my tap into my creative side and photography does that for me. By no means am I a great photographer. I am a novice at best, but I have been able to capture some really good shots here and there. Thankfully I have YouTube videos to guide me along and some forgiving technology to make things look better than the guy shooting the pictures.

    The photos I enjoy taking most are sunsets, wildlife, and the beach. Nature is the perfect canvas for capturing beautiful images. It also provides me with the grounding I need to keep my symptoms in better check because being out in nature is where I find peace and serenity. Nature is my refuge and helps take my mind off my pain, and being able to capture those moments with my camera makes life more enjoyable.

    Over the past five years, I have replaced almost every store-bought piece of artwork on my wall and replaced it with my own prints, bringing the outdoors inside so I can enjoy them all the time.

    In a word, photography helps me practice mindfulness. When I am out in nature, I am acutely aware of my surroundings. I get lost in a very comforting space, seeking out my next creative shot. To me, a very simple definition of mindfulness is “paying attention on purpose, in the present moment.” Photography is an excellent tool for me to practice this very helpful discipline.

    It makes me feel good to see what my mind creates. I can barely draw a stick figure with my hands. I can see what I want to draw in my mind but there’s a disconnect down to my hand. This is different with photography. I see what I want to take a picture of, and it usually comes out the way I planned. This is a very gratifying feeling. I don’t get too many gratifying feelings living with chronic pain and dystonia.

    As I said, I am just a novice and don’t plan to become an expert. It’s not about that for me. It’s about getting lost in the subject that I am capturing with the camera. It’s about feeling more grounded and at peace and at one with myself and my surroundings. It’s about taming that fight/flight/freeze stress response that is created by chronic pain that I live with every day. The more I can tap into my creative side, the more I can produce the feel-good hormones so the rest of my day is more enjoyable. Photography has become much more than a hobby. It has become a form of self-care.

    1 reaction

    Heart Smile Of The Day

    Today I woke up without a blistering migraine . The first time in almost two months. I happily feel like a part of humanity today. I think I’ll go for a walk under the pine trees and enjoy what Nature brings me.
    That works for me. ☀️😁

    #ChronicPain #BipolarDepression #MentalHealth #Dystonia #EmotionalHealth #EhlersDanlosSyndrome #Selfcare #DaylightDazzler #Hope #Selflove #innerpeace #ChronicIllness #Nature

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    On Any Given Day

    Or tell you that a friend of a friend of theirs tried this and it worked…. #ChronicPain #EhlersDanlosSyndrome #BipolarDisorder #BipolarDepression #Dystonia #Depression #MentalHealth

    37 reactions 6 comments

    So tired

    So tired of not being heard, of the effects of my illness not being understood, of being in the tiny percentage of the rarest form of a rare illness, of accumulating comorbidities.
    I've just turned 55 and feel so much older. Am struggling to express my distress to even my wife and how totally exhausted I am just trying to cope with the day to day - especially with the added pain of a torn rotator cuff that I'm waiting on surgery for. I am often called strong and resilient because I have been through a lot but it would be so nice not to have to be strong for a while
    #Dystonia #IrritableBowelSyndromeIBS #Fibromyalgia

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    My recent new experience following a row of functional seizures. How's everyone else doing!?

    Tuesday I fell and had three seizures in a row. Luckily I didn’t do any damage that I’ve noticed, apart from a slight tender spot on my head.
    With the help of my sister I crawled into my room and got into bed. Later that day I had another seizure. Came out of it as usual, talking and coherent.

    Maybe an hour later, I was watching TV and then realised I couldn’t move. My legs and arms felt disconnected from me.
    I’ve experienced leg paralysis before but not being able to move my arms was new. The more I looked at them and tried to get them to move, the heavier they felt.

    My sister came up to see if I needed anything and then I realised I couldn’t speak either and all I could move was my eyes. Carrie got Mum and they came up with a way I could communicate with them. They’d ask yes and no questions and put one thumb up and the other down, then I’d look at the one stating my answer.

    We decided not to ring 111 as I wasn’t in a high level of pain, I gathered this was a repercussion of the seizures and it would likely be a waste of everyone’s time as we doubted there was much they could do, unless it persisted.

    It’s hard not to feel like a burden at times and this was one of those times when that feeling hit hard. My sister, Carrie, gave me my dinner and a drink. Mum and Dad were lifting me to get me into a comfortable position, lifting me on and off the commode next to my bed, Mum helped me change and Dad put tablets in my mouth followed by a straw for water.

    It was a horrible feeling. It was painful and embarrassing.

    Wednesday was a bit of a blur. Mum fed me my breakfast. She handled an important telephone appointment from London for me and again, somehow on her own, helped me on and off the commode. That afternoon I got the use of my hands back. They were cramped up most the time but I could pick up my own food and bottle of drink by the evening.

    Today (Thursday) I’ve got much more movement in my arms, though it’s taken me a ridiculous amount of time and brain power to write this. My legs are taking my weight for a few seconds and I’m getting a couple of words together. You really do appreciate things when you haven’t had them for awhile. I’m so lucky the main symptoms only lasted 12 hours. Not being able to use my hands was very worrying and I’m so grateful that didn’t last long.

    I’m not sure why it happened. What was different about the seizures or that day, or even the days leading up to it. I find with FND searching for answers often isn’t worth the thought, because I’ll come up with loads of possible reasons but never one obvious reason.

    I’m still frustrated by the pain in my spine and the effort of talking but I feel lucky to be recovering from whatever just happened to me and re-charging my batteries.

    I am grateful that today I managed to do some crafts and I’m grateful for being able to write this.

    #FunctionalNeurologicalDisorder #Seizures #functionalseizure #Dystonia #ChronicPain

    2 reactions 3 comments

    I’m new here!

    Hi, my name is lucie. I'm here because I live with RSD, Dystonia and gastric issues (tbc diagnosis). looking to connect with other people who are living with long term health problems

    #MightyTogether #Dystonia


    I’m new here!

    Hi, my name is keelan89. I'm here because my son has Quadreplegic Cerebral Palsy & Dystonia & I just want to connect with parents in a similar situation