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I'm new here!

Hi, my name is Eviebean. I'm here because I have EDS and the associated dystonia is becoming worse. Hoping to find some suggestions for coping.

#MightyTogether #EhlersDanlosSyndrome

6 reactions 3 comments

I'm new here!

Hi, my name is Snidley1. I've lived with Migraine for 52 years. Recently I was diagnosed with cervical dystonia which has been a Migraine trigger. My Neurologist has started treating my dystonia with Botox injections, but he says it may take up to four rounds before they are effective. I wonder if others have experience with C.D. also.
#MightyTogether #Migraine

2 reactions 1 comment

Health Update!

The last six months have been constant battles with my old primary, but finally got two liver ultrasound and confirmed liver disease. About a month and half ago, I was having severe liver pain, throwing up, sudden confusion, lightheaded, and could barely hold myself up. I couldn’t eat anything but soup for days and it took days for the confusion and to finally feel normal again. I ended up going to urgent care and they said the next time it happens to go straight to the emergency room and that I need to see a liver specialist. Finally have an appointment with a new primary to get another ultrasound and blood work done. Going to see pain management and discuss new symptoms with my Fibromyalgia and more likely will be getting a brain mri and CT scan to see if anything has change or damage has been done to the brain and to check for Dystonia. Going to be going soon to finally fix my ears and going ti be getting the money up to get my laparoscopy to confirm whether or not I have Endometriosis and to burn anything out that’s needs to be burned out. And will be getting the test done to check for lupus. #ChronicIllness #Fibromyalgia #ChronicPain #Dystonia #Lupus #Spoonie #Endometriosis #LiverDisease #ChronicFatigue #HearingLoss

4 reactions

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

2 reactions 2 comments


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.

3 reactions

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

30 reactions 7 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