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Inpatient EEG
A MyEpilepsyTeam Member asked a question 💭

I just found out that I got approval for financial assistance for my five day inpatient EEG.

This feels huge! I have waited six months for this. Does anyone have any suggestions for the stay? As in I know I’m supposed to try to induce a seizure within that five day. Which seems kind of nervous considering if you don’t have one, then I guess they just send you home with no seizure diagnosis?

Any thoughts appreciated. I’ve got a couple weeks to prepare if there’s anything I need to think On.

posted May 21, 2022
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A MyEpilepsyTeam Member

Just had the same study a few days ago. I had three seizures while I was there. It was kinda scary. But they were really nice to me and that's how I've got my diagnosis.

posted May 31, 2022
A MyEpilepsyTeam Member

Many other answers in this thread offer some great tips on staying occupied; not much I can add there. Cards, books, hobbies, laptop, etc...
Hopefully you won't, yet be prepared to be stuck in the hospital bed. I was, and an alarm went off anytime I tried to get up to pee without supervision. Really awkward at first!
And like some have mentioned, there is a good chance that you will be put through some "trigger" excercises: sleep or oxygen deprivation, lights (as many of us have optical triggers), and other stuff. I've even heard of patients trying alcohol.
For me, I have been on a Keto/Modified Atkins Diet. So when I go in for mine this Wednesday, I am going to have them bring me some beer, pizza & lasagna, and a dozen Krispy Kreme donuts, hahaha!

You got this @A MyEpilepsyTeam Member, and you have a lot of people rooting for you!

Mad Gratitude,
~Micah
Unexpect the Expected
🤪😁

posted May 22, 2022
A MyEpilepsyTeam Member

The inpatient EEGs can vary depending on where you are & what your neuro-team is looking for. I've had two 5-day sleep studies. First one I didn't register any seizures on the EEG, yet the video monitor showed activity stereotypical of nocturnal seizures. Second stay at the EMU (Epilepsy Monitoring Unit) I didn't seize until the final morning, when I had a huge generalized seizure right as I was waking up. Took 2 nurses and an orderly to keep me down. That one registered on the EEG.
Both stays produced some clues as to where my seizures are coming from. Even if they don't register on the machine, the lab techs & neurologists will study the video as well. In my case, they found that my nocturnal activity combined with my descriptions of my seizures pointed to "scalp-negative" seizures (occurring deeper in the brain where the surface monitors can't pick them up).
Even the big one that registered as coming from the T2-T4, T6 areas didn't come from my Temporal Lobe: they came from beneath it and were just so strong that the seizures made their way through the lobe to the surface.

The team took all of the data & info, and have come to the conclusion that my seizures are coming from my hippocampal area; based on my nocturnal activity seen on the videos, my descriptions in my diary, and those compared to my many MRIs & PET scans.

So even if you don't have a gran-mal or tonic-clonic seizure, there's a good chance your neuros can gather some really useful information!

I myself am going in this Wednesday, May 25th, for a Phase 2 sleep study. This time they are going to surgically insert "depth electrodes" into my brain to try to pinpoint the origin(s) of my "scalp negative" seizures. I will be in the EMU anywhere from 1 - 4 weeks, depending on how long it takes to get the data.

posted May 22, 2022
A MyEpilepsyTeam Member

I did one of these back in 2015. I didn't have a seizure in the first 4 days so they actually asked me my triggers and I said my only trigger I know of is missing my medication and they didn't have me take my meds and I had the seizure they were looking for unfortunately it was when nuclear medicine wasn't there so they talked about keeping me longer but they didn't. But when you get there they'll do the getting you ready for an EEG and probably put an IV in you (in case you have a seizure so they can give rescue meds through it as well as if they want to do a contrast MRI like they did with me)and tell you you can't leave the bed without anyone in the room even to go to the bathroom. they wanted me to take these heparin shots to the stomach since I spent most of the time in bed when I was there and I refused. I was allowed to have visitors when I was there which was nice, I also brought my laptop and a couple other things to do. They had a TV but I didn't want to watch tv all the time so if your allowed I'd bring something for you to do. Usually inpatient EEGs are pre surgery. Wishing you luck🍀🤞

posted May 22, 2022 (edited)
A MyEpilepsyTeam Member

question... is the 5 day eeg thing at home or at the hospital? and what types are drs looking for? ... sleep or eat study... sleep or food or med deprived or a og eeg (original eeg) or is it a special thing?
the results are the same though. you sit around on your butt for x amount of hours/days. if you are in the hospital... get toys, hobbies, laptop, tablet... anything to brake the boardom. same for at home... but you are somewhat relaxed and you have more options... whatever is in your home.
anyway... when you get 'hooked up', tell whever is in charge what are you testing for? that way you will aim to get that seizure trigger. if the dr/nurses tell you but you dont understand (like a idiopathic seizure test) look it up on the laptop/tablet that you brought.

posted May 21, 2022

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