Last night scared the Hell out of me, I actually had Angelo call 911! I got uber hot, uncontrollably sweaty, couldn't breath, started having the worst seizure I've ever had while awake, couldn't respond to people...etc Now, I've had my VNS therapy seizure device since May 2018, no issues with it, other than minor annoyances(occasional issues eating when it's going off & voice\speach troubles) until November 2020. I'd been trying to get in to see my neurologist since mid November and couldn't get through. I felt my device was set too high and asked them not to set it where they did (they obviously didn't listen). The neurologist wanted to keep upping the frequency, saying it was still too low. They've cancelled my appt with them 3 times since December (5 times total since covid-19 pandemic), I loved them until my main person left that office. Luckily I'm getting a new neurologist! Still not sure what happened last night, what the trigger was or why it wouldn't stop going off and making me seize. They (the ER) gave me some ativan (typical seizure med given in the ER), I passed out, Angelo said a VNS rep came in and lowered my device settings, and she said they were too high. I've been weak and very sore since, but that's expected considering my whole body was tensing and seizing up for over an hour. I'm praying there's no permanent side effects from last night's episode, time will tell though. Much love and thanks to everyone who was there for me last night and afterwards (physically and online)!😘🤗🥰 #seizuredisorder #seizuressuck #vnstherapy #complexpartialseizures #fibromyalgiasucks #fibrowarrior #chronicillness #chronicillnesswarrior #iamasurvivor #survivor #wontbehelddown #cantholdmedown (at Las Vegas, Nevada) https://www.instagram.com/p/CNOJRnuD7AJ/?igshid=9bkkbln24z2s
