Hello everyone 🙂 I’m new here to the forum. My name is Tennille. I wanted to quickly chime into this thread really quick because for many years I have had this paralyzed issue and have asked so many people, docs, others with my diseases, what it is, if any others experience this and what is causing it, but to no avail. I have not had anyone who could relate, even on dinet. Imagine my excitement when i read this!!!! Someone has experienced this too perhaps?? I was too excited not to jump in even though the thread is a few months old and im new here 🙂
I first thought perhaps it could have been an autonomic attack or seizure (but the paralysis could be long term, going into days, weeks). Here in the past year or so, I was thinking it could be anaphylactic shock. But I still have no clue.
I don’t seem to have real issues though when lying on my back, UNLESS i am in a flare up. When I am in a flare up, I have to lay on one side or the other, sleeping is the same. If things are in control, i can fall asleep on my back but eventually i sleep most all the time on one side or the other. But again, in a flare up, yes, i find it every challenging to lay on my back and I also feel like things seem so skyrocket in the symptoms, which gets a tad scary, hence, why I stay on one side.
Back on the paralysis, mine would be so bad that yes, i could not speak. I couldn’t even move my lips or lift my head or lift a finger or barely keep my eyes open. I wasn’t sleepy and I was coherent and could hear all that was said, but there was no possible way I could respond. Now that, is scary. I spent 3 days straight in the hospital due to one of these attacks that kept repeating itself, but that time i was ‘stuck’ in it for days. No one could find anything wrong. Gradually, i would come out of it, but several times I have felt like death was near, cuz during these paralysis spells, i cannot breathe….. as if my diaphragm isn’t working or the muscles are paralyzed themselves and i have to solely concentrate with all my might on the breathing. I usually pant like a dog too during this.
I haven’t read through this entire thread, as I think I am in a flare up, but feeling a tad better each day, still requiring loads of rest though.
Thank you everyone….. i’ll go back and read through the thread in few when i rest up for a few. 🙂
~tennille