I just wanted to let you know that you are not alone. I have weird seizure-like events at night. I usually fall asleep, then suddenly awaken shortly after. I have this terrible feeling of doom that I cant explain. I can usually feel my heart beating all over the place. My eyes remain closed. My muscles in my legs and arms stiffen and sometimes even my back and I am unable to breathe. Suddenly I take in an extremely deep breath to the point that it hurts, but cant exhale (breath out). Then my legs and hands start moving in a very rhythmic pattern, my legs move as if I'm riding a bike. My eyelids twitch and I start breathing rapidly. I am aware of whats happening, but I can't really form a thought process and I can't make these episodes stop. I feel completely out of control. Its so hard to explain. After a little while, my legs and hands stop moving, my breathing eventually slows, and my muscles remain stiff for a little while, and then finally relax. I usually still can't move for a while.Then go into another episode. I usually have 2- 6 of these episodes in a row and sometimes more, before finally coming all the way out of it. When the episodes are over, eventually I can open my eyes. I tend to feel really confused as to where I am. And eventually, slowly I begin to be able to sit up in my bed and move willingly, and form thoughts again. I usually feel like I have to pee when I come out of these episodes and also feel extremely exhausted. The following day I am more exhausted and worn out than usual, even though I always feel fatigued. And my muscles tend to be sore.
Lately I have been having these episodes quite often. They started off as just being during the week of my period, now they have progressed to at least one night a week. I began having these episodes in August. No one has seen me have these episodes, so they are even harder to explain. These episodes sometimes occur on really bad dysautonomia days, but not always. In January I finally started seeing a neurologist. He said they sounded like seizures. The MRI was normal and the EEG was completely normal. They finally sent me for a complete sleep study test including a night time and day time with the full EEG. There was no evidence of seizures and no evidence of any sleep disorders, but I didn't have any episodes that night. The neurologist, said they were seizures probably and started me on Gabapentin, which helped but I couldn't take the side effects, so I am no longer on the Gabapentin. My neurologist has been really uncaring, and I refuse to go back to him. He didn't seem to really know what dysautonomia was either. My cardiologist already dismissed me last year after taking me off all of my meds that weren't helping and said that there was nothing else he could do for me. Last week I had these episodes 4 nights in a row, which is more often than its every been. I've felt so alone in all of this. I wasn't sure if anyone else had experienced this sort of thing.
