Connect
← Return to Been to an Epilepsy Monitoring Unit? What’s it like?
Discussion
Been to an Epilepsy Monitoring Unit? What’s it like?
Epilepsy & Seizures | Last Active: Nov 21 1:02am | Replies (61)Comment receiving replies
Hi @tbrookhouser
I'm so sorry to hear about everything you've been going through since last December. That sounds incredibly difficult!
You mentioned collapsing but staying conscious throughout your entire life. What you're describing sounds like it could be atonic seizures, where someone suddenly loses muscle tone and collapses but doesn't lose consciousness. I'm sharing a link here with more information about this type of seizure:
Atonic Seizures - Epilepsy Foundation
https://www.epilepsy.com/what-is-epilepsy/seizure-types/atonic-seizures
I can relate to the uncertainty of not knowing what's happening to your body. I lived with temporal lobe epilepsy for decades without knowing it. When I was a teenager, I started having a few strange sensations that lasted a couple of seconds. But all my EEGs came back normal, and I lived a pretty healthy life, rarely affected by what I now know were focal seizures. Then in 2017, after a quite stressful period at work, my seizures became more frequent, longer, and intense. It wasn't until 2019, at age 48, that I finally got the correct diagnosis after my first sleep-deprived EEG, which showed some epileptiform waves.
Since when have you been experiencing these collapses? Have they become more frequent and intense throughout the years?
I'm really hoping your upcoming tests give your doctors the clarity they need to help you. Please keep me posted!
Chris
Replies to "Hi @tbrookhouser I'm so sorry to hear about everything you've been going through since last December...."
Connect
@santosha thank you for sharing your story and am so happy that you have received answers. Two days after the stroke- I was discharged from the hospital and had 2 convulsive seizures with face drooping and impaired speech while staying in my mom’s room (she had been admitted to the heart floor) Rapid response was called and then I was released. 3 weeks after that I had a home 72 EEG which showed abnormal & was told I had seizures without any further testing. Back in November I had multiple MRI and CT- all normal with the exception of 1 dr saying I had lacunar strokes previously and all other dr.s disagreeing. January, I had one seizure from a red light in January and facial dropping on the right side. No episodes until May where I have had multiple tonic clonic and unfortunately my boss calls the EMT’s every single time. Cardiac arrest in June, Status Epilepticus in August, multiple hospital stays. Multiple CT’s, MRI’s , tilt table test, sleep deprived eegs, 20 min eegs, some show epileptic and non epileptic episodes. It has just been frustrating and I don’t feel that I have epilepsy. I am hoping we have answers and a definitive answer and if the seizures are actually brought on by the seizure meds. Thank you for jus letting me vent.