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

Having a little one in the EMU can be challenging. Even more so when it's a prolonged stay. Thankfully our little has done well. We have started a company to try and help those having EEGs feel more comfortable while there. We are hoping to someday work with hospitals so that the item can be paid for by insurance and all patients have the option to use them if they want! We are just trying to take this hard situation and bring joy where we can. We are on Etsy, FB and Insta... @rainbowhairhats Hope you check us out!

@thefincks, my best vibrations to your little princess and I do pray she will be back home soon and feeling well again!
Stay strong!!! As we say over here, God does not give such challenges to weak shoulders.
Santosha

I will be scheduled for a five day EMU stay. What should I expect? What happens daily? Thank you.

@tbrookhouser - hello, and welcome to Mayo Clinic Connect. I moved your post here to an existing discussion on being in an epilepsy monitoring unit (EMU) so that you could chat with other members here such as @santosha @jakedduck1 @dawn_giacabazi @thefincks and others.

Do you have any particular concerns for your time there? Any specific hopes for your stay in the EMU?

I believe I have been misdiagnosed and I am hoping the referral to Mayo
Confirms it. Thank you for placing it in the appropriate discussion. I would just like to know details about what to expect outside of being hooked up
To a eeg continuously. Thank you.

@tbrookhouser I assume adult testing is much like kid testing if in patient. Lots of hanging out, watching TV, crafts, the usual stuff for being confined. We’ve haven’t done an outpatient one before… yet. Either way I have hats and I can totally get you one if it would help you feel better in the hookup! Sending lots of positive energy and light to you!!

@tbrookhouser The lack of answers is a hard part of this journey. I don’t have seizures so I can’t speak to that experience but here for support in any way I can as a caregiver/parent to a child wit epilepsy.

Hi @tbrookhouser
I've been to the EMU recently - last December and August - though my situation was different from yours. I was already having seizures when I was admitted both times, and one time I was actually in status epilepticus.
From what I understand, most people hope to have seizures during their EMU stay so they can better understand their condition. Unfortunately, that doesn't always happen.
My advice? Try not to go in with too many expectations. I know that might sound strange, but here's why: the EMU stay is definitely valuable either way, but sometimes when we really want something to happen, it doesn't. It's like when you're trying too hard to fall asleep - the more you focus on it, the more elusive it becomes!
Bring things that help you relax and pass the time - books, good movies, videos you enjoy, whatever makes you happy. This can really help make your hospital days feel shorter and more peaceful.
Wishing you all the best during your EMU stay! I hope you get the answers you're looking for. 💜
Chris

Hi @thefincks
It's so great to hear from you again!
How is your sweet little princess doing? I hope she's doing well! 💜
Chris

@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.