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Been to an Epilepsy Monitoring Unit? What’s it like?
Epilepsy & Seizures | Last Active: Jan 24, 2023 | Replies (42)Comment receiving replies
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.
Replies to "I want to add that when I had my 72 hour ambulatory EEG done in May..."
Hi @mboulis.
I went through the Mayo Clinic Seizure Clinic, I did not have a full seizure or any activity until my last 48hrs. I was so frustrated but then I asked my doctors if I could do my normal routine. They agreed and finally after a couple hours of working on my laptop and back to my stressful work life, I started having auras. But They were able to identify my types of seizures without have a full seizure. You are correct, sometimes the hospital is not the correct setting but I’m grateful they were willing to let me try my routine. I hope you get an opportunity to try again. It is worth it!! I only take 1 medication 100% controlled. But It took years of trial and error on multiple different medications ended up on 3 different medications and still had a lot of break through seizures. I nearly died after a seizure when the ER gave me Klonopin, topamax, & zonegran all to stop my seizure unfortunately I stopped breathing but because my local Er gave me all 3 new medications at the same time we couldn’t determine which one I was allergic to so now we have to list all 3. That’s when I decided I was going to Mayo Clinic. I know it’s very frustrating but keep trying!! I hope you get some answers soon!!
Best wishes
Dawn
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Hi, @mboulis - welcome to Mayo Clinic Connect. Thanks for sharing your experience in an epilepsy monitoring unit.
I'd like to introduce you to @jakedduck1 @12271997 @joannern @1634517678 @dawn_giacabazi @jktaheri @robertjr and others in this thread. Perhaps they will have some input on what you described about your time in the monitoring unit with auras and not one full seizure despite being off all medications, plus the awful beds.
If while you were in the hospital you didn't have any full seizures, were the doctors able to determine anything about your diagnosis and treatment from your time in the monitoring unit? What is the next step for you?