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

Epilepsy & Seizures | Last Active: Jan 24, 2023 | Replies (42)
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@mboulis

I was in an EMU at another facility in September of this year.

My fears were lack of independence... having to wait to have a nurse or an aide take you to the bathroom. Not being able to even be up in my room by myself. Being in bed constantly.

Comfort would have been better beds. They were awful even though they were new. When in an up position, I could feel the metal on my tailbone. I have been home since September 28th and I still cannot sit normally because it hurts. I have to sit on one cheek and not put full weight on my tailbone.

I think withdrawal should have been explained to me. I was on Keppra, Vimpat and Klonopin. I was taken off all three. I was in the hospital eight days and went through withdrawal from these meds. Nobody warned me and it was horrible. I asked for something to stop the withdrawal but was not given anything.

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mboulis | @mboulis | Oct 17, 2018

I want to add that when I had my 72 hour ambulatory EEG done in May 2018, I was on all of my meds and in those three days, I had three seizures. While in the hospital setting, I had none. I had auras, but not one full seizure even though I was off all medications, did five days of sleep deprivation, did the lights, etc. I just didn’t have a trigger. My doctor wanted me to stay longer but I just could not do it.

I think for some people, the triggers in a hospital setting just are not the same as in the home/ world setting.

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