Im so glad i found this forum!
Looking forward to learn more and share as i also gain more experiance!
I will start by telling a little bit of my story, to see if anyone has the same experiance
Im 34 yo, living with my two sons and husband in Norway.
I got diagnosed with Ehlers Danlos syndrome in 2017 after struggling for years with my general health. At that point i was well enough to work out 2-3 times a week, go to the mall with my friends and be a mom as needed, but i was not able to work.
In 2018 i got a neck injury on a rehab stay, where i was supposed to work out to get stronger and more healthy.
Shortly after i was diagnosed with CCI and AAI. (Instability of my neck)
Around the fall 2019 i started to have episodes of stroke-like symptoms.
The epiodes would come after neck movement, and be worse the more i moved my neck. When i feelt the episodes coming i could sometimes prevent by laying down in a nautral possition. This lead to me being bedbound on avrage 22 hour a day the past 2 years.
I normally have mild symptoms of these episodes every day, and bigger episodes from 1-2 times a week to month between.
The symptoms i have during my episodes might vary in strength from mild to bad, and some i only get on the worst episodes. But i will list them here in the order they arrive:
- numbness in tongue
- Headace and extreme pressure feeling in head
- Confusion, trouble finding words, slurred speach, memory issues
- Dry eyes and mouth
- Shaking/ feeling of being weak
- Random jerks in hands and feet (like my foot may suddenly jump)
- Feeling irritated
- Right sided facial weakness/dropping
- Extreamly tired
- Difficult swallowing
- Hearing my heartbeat in my ear
- feeling of shortness of breath
- Feeling that i cant keep my urine, its feels like im about to pee in my pants but i dont actually. (Once i lost controll of the bladder)
- Throw up
- After one big episode i had Tongue fasciculations and tongue athropy for a long time after.
These episodes can last for hours, and the bigger episodes cause me to be extreamly tired. Almost like im in a coma state. I usually also struggle with my cognitive function for some days after the big episodes.
I can also have a little dropped face on one side a few days after the biggest episodes.
I have been dismissed by the doctors here. The first time i came in with an episode i got reported to the child protective service because they said i presented like i was drugged. Witch of course was not the case.
I will not go into detales about how much shit ive taken from them, but its been alot.
3 weeks ago i had a really bad episode, it lasted and lasted, and in the end i decided to go to the ER. I was admitted to the stroke unit where they could see my right side weakness in hand and foot, and also my face being dropped, so i got a CT and an MRI, luckily they could not see any strokes but since i this time have not recovered like i usually do, they will do more check ups, and amoung other things they will do a CT with contrast to look for Eagles. I still have a little dropped face on the right side, and some cognitive issues. Dont know if ive had a TIA or if its something else.
The doctors here does not seem very interested or knowledgable so will see what happens…
My CT and MRI came back as totally normal, all though they mentioned fluid in the right sinus maxillaris and sphenoid sinus and that the right latheral ventricle is a bit bigger then the left.
(There is alot going on in my right side here😝)
I also have a ton of symptoms on a daily basis, but its the episodes that limits me the most.
Im sure ill forget half of it but to mention some of the symptoms: fatigue, neck pain, runny nose, gastro issues, generalized pain, problems regulating temperature and pulse, different kind of headaches and POTS with its issues.
Have anyone else experiance symptoms like this coming like a episode? Does this sound like it can be ES?
I am of course worried the episodes are due to resuced bloodflow of some sort, and that the bigger episodes are TIA.