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Eyes darting uncontrollably last night, different than my history of sleep paralysis

Sat, 03/31/2018 - 11:36
Hi, last night I woke out of deep sleep and something was happening that made me want to open my eyes. When I opened them, my eyes were darting back and forth quickly (but not the super-rapid speed you'd see with nystagmus) and I couldn't stop them. While this was happening, I felt like someone was yanking on my brainstem rhythmically. There was no fear, no hallucinations, no throbbing or whooshing sounds I get before and during episodes of sleep paralysis (along with the occasional hallucination). I was able to open my eyes pretty easily vs having zero control with SP. The night before I was standing in the kitchen and felt the same kind of yank on my brain stem- whatever this was only lasted a second- but it felt like I'd gotten smaller or closer to the floor, like I'd been flattened a few inches like an accordion. It was like I was gone for a second, like a computer that was briefly unplugged. A little bit later I could feel myself starting to pass out. I was seeing stars, etc, cold and started sweating. My body temp is generally low but repeated measurements came to 96.6 F. It may be worth noting I'd missed a dose of Lamotrigine which I take as a mood stabilizer, and a search this morning showed it can be used for epilepsy. In total I slept the better part of the last 48 hours, waking only for short periods. When SP started as a teen, I was taken to a neurologist who said results were ambiguous and to consider anti-epileptics but she declined. But in the last few months I started having those "unplugged" moments which were definitely not the way you sometimes do when you fall asleep for a moment and wake up. Instead, I'm just gone. Given I have Ehlers Danlos and dysautonomia (more on that below if you're brave) I wonder about secondary Chiari malformation too. I've read about psychogenic seizures and do have significant trauma. If you're not too bored yet, here's a bit about other symptoms, possibly related or maybe causing seizures secondarily (?). My body has grown gradually number, and sometimes my whole body including tongue and mouth go numb. White matter hyperintensities were found on an MRI 2 years ago but the neurologist wouldn't look at the films, saying my huge memory gaps, motor control issues, language disturbances and first-time ever episodes of dyslexia at 43 were depression and anxiety (basically suggesting hysteria). Sometimes I'll be playing piano and suddenly find I can't read music or figure out what to play next, or I'll mis-count (11, 12, 8, 13). I have occasional twitching in fingers, pressure headaches, dizziness, and clusters of low-grade fevers that come and go. Also bad apnea (on CPAP and sometimes 02), nightly awakenings with heart racing etc. Maybe unimportant: I haven't been worrying I have one, but my mother is dying of a GBM brain tumor and I have a lot of the genetic markers (SNPs) for GBM. *sigh* ... if you made it this far, you're a saint. Thanks for reading! ~Emily

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