← Return to Been to an Epilepsy Monitoring Unit? What’s it like?

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Profile picture for tbrookhouser @tbrookhouser

@santosha thank you, prior to December 2024 I have not seen a doctor since 2015. I had a stroke December 16, two weeks after that a 72 hour EEG at home with ( to my knowledge, no seizures) but the EEG came back abnormal and was immediately told that I had seizures and was put on medication and then two weeks after that had to have a PFO in atrial septal defect closed in my heart. Five months after that went into cardiac arrest after having no seizures to my recollection. Since May because I have never been sick, my work called the EMTs every single time I collapse, which was normal for me because I have collapsed my entire life without losing consciousness. In August, I was in the hospital lobby and woke up in the trauma center with my clothes cut off, and they said I was in status epilepticcus. They did a tilt test and a sleep deprived EEG. I do not feel that I have epilepsy, and I feel that the seizures are now brought on by the combination of dual seizure meds. From my initial consultation just two weeks ago at Mayo.- it seems that the doctor agrees with me and I am being admitted so that we can rule epilepsy out completely. I know that you’re confined to the room and hooked up to the EEG continuously and video monitoring, but I am trying to find out what type of test that they do or is it literally just sitting in the room and being observed. I am having an MRI on Thursday and an EEG on Friday.

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Replies to "@santosha thank you, prior to December 2024 I have not seen a doctor since 2015. I..."

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