I have been searching for a diagnosis for years and years with no luck. For about 9 years I have had crazy episodes of sleep paralysis. They usually happen when I first wake up and I cant move anything. Sometimes I manage to get my left eye open but my right feels stuck, everything feels stuck. Nothing will move. It usually happens when I am in a deep sleep and get woke up. ok so here is where it gets different, I dont hallucinate but these episodes can last for an hour or more. Slowly my body will start moving again. It feels like it is still asleep but will power will not move it. It feels awful...a weird sort of painful discomfort when my husband moves my limbs for me as they "go to sleep" and it causes a lot of pain. I have been having 2-3 episodes a week right now.
Here is the other weird part. I can get these during the day when I am awake. I feel them coming. I often get a feeling of overwhelm and there is a lot of mental confusion. I never have the daytime ones without these naurological symptoms. I cry and get over emotional (not because of the paralysis...I generally dont even know it is coming and think something is terribly wrong then suddenly I am aware and think, "Oh here comes a doozy!" then I have to lie down and my body wants to curl up in a ball and suddenly i cant move anymore. If I can still talk my husband will come in and straighten me out so I am not laying on one of my arms or something else that is uncomfortable and I just lay there for hours and cant move. I am awake and alert although I often fall asleep and am in and out of sleep during the episodes. Evenif I am in terrible pain because my arm or leg is "asleep" I cant move to fix it and have to lay there till someone comes int he room to help me. It takes a while for me to get use of my limbs back (everything is paralyzed except I can move my eyeballs under the lids and my tongue moves.) It can take up to 4 hours for the episode to resolve itself and I feel exhausted after it....No weird dreams or visions.
I have been tested for MD (HKPP, Myasthenia Gravis) and MS, and epilepsy and Narcolepsy with Cataplexy. All negative.
These went away for a few years after my daughter was born and I was on an anti seizure drug for depression called lamictal. I am weening off the med now and the episodes are coming back.
Does ANYONE out there have anything like this? I want a diagnosis. I am nervous my daughter will have to deal with this too. Any advice will be greatly appreciated....(I am currently being treated for Lyme disease...maybe) Thanks for your help...Olivia