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Nocturnal seizures?

Fri, 11/18/2016 - 16:14
I have been having episodes in my sleep for the last 12 years. They always occur when I am sleeping, almost always occur while I am dreaming, and seem to be tonic-clonic. I will be jarred awake from a dream, and be consciously aware (although sometimes confused and not 100% oriented) while I slip into a tonic clinic seizure like episode. My eyes roll back, my head is pulled back from tight neck muscles, my hands curl inwards, I breathe heavily, and my body jerks wildly. It has lasted anywhere from 30 seconds to 2-3 minutes. I am conscious the entire time but unable to speak or intentionally move until the episode ends. I am excessively tired for the entire day afterward, and recently my vision has been blurry for the first 6-12 hours afterward. The episodes have happened as few as 3 times a year and as many as 4 times in 2 weeks. I sought out a neurologist for this right after my first episode and 4 years later when they increased in frequency. Both times I was brushed off. The second doctor even laughed a little when he said "oh those are not seizures, you can't be awake and have a seizure". Both doctors said that it was probably just sleep paralysis, offered to do a sleep study only after I insisted that more was wrong than just sleep paralysis. Both found that I have abnormally long R.E.M. cycles and that I have an abnormal amount of them. They said I spend a LOT of time in R.E.M. I guess I am writing here because I want to see if anyone here has had similar episodes. What was your diagnosis? How are they treating it? I feel like I must have nocturnal seizures/epilepsy. I intend to find a new neurologist, but I would like to be armed with a ton of information before I go. I feel like I was bullied into a bs diagnosis. Some of these episodes are petrifying (the other day I had one while my toddler daughter was napping with me on my chest. I was completely petrified that I was going to drop her and couldn't do a thing about it. Thank god my husband was next to me and grabbed her). If there is a treatment out there, I want to start it. Any help out there??

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