Looking over my blog, I can’t believe I haven’t written about this yet! I’ve been in the EMU three times at two different Level 4 Epilepsy Centers, and the experience is pretty much the same - different views from the windows, sometimes easier to have seizures, but overall if you’ve seen one Level 4 EMU, you’ve seen them all. For those of you scheduled to head down those halls, here is what to expect.

1. You will be monitored 24/7. From the moment you are hooked up with electrodes to your head and assigned a bed, you are on camera and your brainwaves are being constantly recorded. The camera does not have sound, but it is focused on your bed. I have no idea who is watching it or where they are, but someone is somewhere. Your brainwaves are being monitored through the 24-hour EEG as well. Generally, there is a “seizure button” of some kind, which you or your visitor press when you have an aura or are having a seizure, but if you start having one without pressing the button, all the nurses and doctors on the floor will know anyway because of the video and EEG monitoring, and can come and help you.

2. You can’t get out of bed without asking and having a nurse or someone else with you. Need to go to the bathroom? Press that nurse’s button, get ready to wait a few minutes, and then have a clumsy trip across the room, while trying to move without messing up your electrodes and all the wires attached. You won’t be able to walk around the room - it’s hard for the camera to track, messes with the EEG, and because of what you’re about to learn in #3, it’s dangerous. In one of the epilepsy centers, I was taken for a “walk” once a day. Literally, the nurse came in, said, “Okay, Sara, time for your walk,” and we went up and down the hallway twice. It was one of the best parts of my day.

3. You will be there until the doctors have the information they need or you say you want out. When I hear people say, “I’m scheduled to be in the EMU for X number of days” I hate to burst their bubble, but you can’t really do that. The point of the EMU is to figure out where your seizures are coming from and, to do that, you need to have more than one seizure. They will try to provoke a seizure by taking you off your meds, keeping you awake overnight, doing whatever they can, but even if they take you off your meds completely, you may not have seizures as quickly as you expect. I was in the EMU for 10 days (that’s a LONNNGGGG time) because I wasn’t having seizures when I was in there - even though I was on a quarter of my normal dose of medication and was staying up all night, every night. Adequate sleep is not encouraged in the EMU. Seizures are. You probably won’t leave unless you’ve had at least two, so the department has something to talk about. If your two seizures are completely different, then you’ll need to have at least one more. So, you’re actually scheduled to be in the EMU “until I have enough seizures that the doctors can use the information to make decisions about how to treat my epilepsy.”

4. Expect a lot of down time - and pack accordingly. One thing I never thought about until I got to my first EMU was that I wouldn’t be having seizures all of the time, or even most of the time. I also didn’t realize the toll that not being on my meds and not sleeping would take on my mental capabilities. I packed all these fun books, travel Scrabble, a pack of cards, my laptop, and an adult coloring book. By night three, all I could deal with was my laptop and the coloring book. You can pack books, but I’d stick with simple ones. The EMU is more of a place to binge-watch that Netflix series you’ve been meaning to catch up on.

5. You won’t be able to shower/bathe. The most you can do is a daily wipe-down in the bathroom. I’d suggest bringing at least two sets of your own pajamas that button up the front. I did that every time, and having a fresh set to change into was a nice way to feel cleaner than I actually was. Don’t bring anything that you have to pull over your head - your scalp will be covered with electrodes. Button-up PJs. Matching top and bottoms are a plus. :-)

6. It’s not forever. There will probably be times in the middle of the night or after a seizure when you think “This sucks.” or “I wish I was somewhere else.” You are not the only person in the EMU having that thought, and even though your stay may be longer than initially planned, it will end. You can make it through.

Being in the EMU wasn’t great, but the information that came from those stays drastically changed my life for the better. Whether you end up staying for three days or three weeks, there’s an end in sight and the goal is to get as much information about your brain as possible while you’re in there. So, buy some button-up PJs, bring your tablet/laptop/phone, and get ready to feel really off while being watched 24-hours a day by someone you may never see.