What It’s Like to Stay in an Epilepsy Monitoring Unit
By Amber Kaiser
Are you or a loved one considering staying in an Epilepsy Monitoring Unit (EMU) so you and your medical team can record your seizures? Whether you are doing it to have a seizure tracked for the first time, or for considering brain surgery to treat epilepsy, it can be an intimidating and scary time for you and your family or caregivers and friends, especially if you don’t already have generalized seizures frequently. Even though the experience is difficult and can feel like running multiple marathons on your brain and body, visiting an EMU can be a very important step to take in weighing your epilepsy care options.
Why stay at an EMU
Staying at an EMU helps your neurologist or epileptologist and specialized team of doctors and nurses record and evaluate your seizures to determine where your seizures start in your brain, the kinds of seizures you have, how your brain and body react and captures many other pieces of data that they need to decide your eligibility for brain surgery operation for epilepsy. Today, the best place to experience a visit to the EMU is with a Level 4 Epilepsy Center where you are evaluated by epileptologists and a specialized epilepsy care team using the latest technology and resources in the field. Accredited Epilepsy Centers with advanced EMU options as well as epileptologists with a specialized epilepsy care team have become available only in the last 10 years. In fact, the National Association of Epilepsy Centers now says, “if you are seeing a general neurologist, and your seizures have not been brought under control after 12 months, you should request a referral to a specialized epilepsy center with an epileptologist.”
Hopefully all neurologists are aware of this, but they may not be, or they may simply not think to give you a referral, and this reminds me again how important it is for people with epilepsy (or their caregivers) to realize their options and be open to doing the research and learning what we have available now.
What happens during an EMU study
Most EMU stays last 3-5 days, sometimes shorter or longer depending on how many seizures you are having, the type of seizures and all the side-effects you are experiencing on your brain and body that come with them. If you are going in to finally have a seizure recorded, just having one type of any seizure could be a huge game-changer for you and your epilepsy care and next steps. If you are going in for brain surgery candidacy, you will likely stay there closer to 5 days and undergo a handful of tests and studies including neurocognitive testing (evaluates your memory, language and attention), the WADA test (Intracarotid Sodium Amytal) or other similar brain mapping procedures and be required to have multiple seizures for video and EEG recording so that your doctors can determine where your seizures are stemming from in your brain and if surgery is a possibility for you.
To give you some insight, I’ve had 3 EMU experiences, each with a different neurologist at different hospitals from 2007-2011. This was also before Epilepsy Centers existed and I can definitely remember the differences between my visits. My 1st EMU experience was short, just a couple of days and I don’t remember having to stay awake for 24 hours until I had a seizure (which is common in most) so because of that I didn’t have any generalized seizures while I was there. They take you off your medication and do seizure monitoring 24/7 with video and your brain and heart are hooked up to an EEG. I had a complex partial seizure in my 1st EMU visit and when I did, I was aware enough to click on a button to indicate to the team that a seizure was happening. I remember for some reason they weren’t responding to my click and I fell asleep after my seizure, but was aware enough to see the time and remember to tell them a time frame in the morning. They were going to keep me longer, but when I told them to check the EEG at the time I thought I had it, they went back and saw my seizure and that was the first time I had a seizure officially recorded. The year was 2007, about 6 years after I had been diagnosed with epilepsy.
My 2nd EMU visit was at a major hospital in Dallas and it wasn’t an accredited Epilepsy Center either (again, they didn’t exist back then; I think EMUs were slowly getting established), but I could tell it was more advanced than my first one and they had me stay awake until I had a seizure. After going through the process of getting set up, the first few hours, I spent time talking on the phone and with family who were there and watching movies and having dinner. I don’t remember exactly, but I think I had my first seizure during my 2nd EMU visit within the first 24 hours. It was a generalized (grand-mal) seizure and I don’t remember much of my visit after that except for intense physical pain and continual memory lapses. I had 6 seizures during that visit, 4 of them being grand-mal and it was a super painful experience for my brain and body. So much so that I also experienced multiple vertebrae fractures which weren’t addressed during my stay—and that’s a whole different story. I’m sharing here to give you some perspective on how EMU visits can be and how I recommend that if anyone has an EMU visit, hopefully doctors can get all the data they need and you have just one visit! When you visit a Level 4 Epilepsy Center today, I can imagine that they will do their best to do everything they can in one stay.
Almost a year after I had my 2nd EMU study, I had a 3rd EMU stay at another major Dallas hospital scheduled by the team of doctors I had my brain surgery with. I felt very apprehensive about going “back in” to an EMU, but luckily, at this one it was simply additional testing for my surgery candidacy and I didn’t have to have seizures recorded again because I refused to it and eventually I was able to get my doctors the data and video they needed from the hospital of my 2nd EMU stay. I did various tests including neurocognitive testing and the WADA test. In fact, the WADA test procedure was one of the most interesting and scary experiences I’ve ever had in relation to all the brain studies I’ve done. The doctors put half of your brain to sleep while they ask you certain questions and then they “wake it up” and put the other half of your brain to sleep and ask you more questions. This helps them evaluate how your brain works including the strengths and weaknesses of each side. To this day, I still remember the WADA procedure was a very strange and scary, but super interesting experience!
Find an EMU and talk with your doctor about your options
If you have uncontrolled seizures and your doctor hasn’t already talked with you about an EMU study and you are interested in finding where your seizures are stemming from in your brain, or are open to even the possibility of brain surgery for seizures in the future, I suggest having a conversation with your doctor. Staying in an accredited Epilepsy Center EMU could be worth your time and even the difficult challenges of going through multiple recorded seizures in order to open potential doors for you that could help you significantly reduce your seizures or even become seizure-free.
I think one of the best places to start is talking with your doctor and if you aren’t already seeing an epileptologist, ask your neurologist to refer you to one and find where an Epilepsy Center is near you. Being your own health advocate and educating yourself on the latest epilepsy medications or AEDs and brain surgery options could help you find the best epilepsy care for your life in the long-run. After being officially diagnosed with epilepsy, it took me 10 years to get from point A to point B and if you are educating yourself and open to different treatments, taking the initiative to bring them up to your neurologist is sometimes what people have to do to make sure they get the best epilepsy care available without delay. Having specialized epilepsy doctors or epileptologists and Epilepsy Centers available today can make all the difference in you or your loved one’s epilepsy treatment. If you have questions or would like to know more about what I’ve experienced and learned to help you, feel free to reach out to me at amber@neureka.ai.
