Epilepsy Monitoring Unit
When Epilepsy Meds Don’t Work
Imagine being hooked up like a human science experiment: an IV hanging out of your body, wires hanging off of your head, a camera recording you, and a button to push when you have to pee. This is what it was like for me when I stayed in the Epilepsy Monitoring Unit (EMU).
The purpose of staying in the EMU is to record seizures as they occur, so the neurologist can see where they are coming from in the brain. They want to understand better how Epilepsy works since the meds aren’t.
So, you’re in there, getting ready to be hooked up! First, let’s get an IV hooked up for you! The purpose of the IV is to administer anticonvulsants so that when you do have a seizure, the nurses can stop it with this medicine.
The wires that go to your head are connected to electrodes. The electrodes are small metal discs attached to your head typically using glue. They are reading electrical signals in your brain. Our brains are constantly sending electrical signals (even when we are sleeping!) These signals show up as waves when they are read on the EEG (electroencephalogram). These are typically placed on the outside of the skull, but there are procedures where they are placed inside the skull too. Some seizures occur so deep in the brain that they are not picked up by surface electrodes. After you get hooked up, the technician will give you some type of box or another device that the wires go into. This box/device must stay close to you because you don’t want to rip any wires out while it’s recording!
Next, you’ll notice a camera looking at your bed. Wave! These people will be watching you for your duration in the EMU. Not only does the neurologist want the data collected from your brain via EEG, but the neurologist wants to see/hear what you look like and what you’re doing when you have your seizures. This data will give them more insight to come up with a better treatment plan for you.
Next, you have a button to push for when you need to use the restroom. This was the case for me anyway since I was considered a “fall risk” due to having convulsive seizures. There is also a button for you to push if you feel a seizure coming on. You simply press the seizure button, and the people watching from the camera come over the loudspeaker and start talking. Let’s get you in bed and ready to sit there for the next few days!
Why stay in the EMU?
To find the best treatment plan. A lot of times people stay in the EMU when they are still having seizures after failing seizure medications. This is to help them find better medication combinations or to explore the possibility of devices or surgery. When staying in the EMU, the goal is to have seizures, so how do we do that? Your neurologist will slowly decrease your seizure medicine until you are off of it. They will also ask you to stay awake and sleep deprive (both common seizure triggers). They may also try flashing lights in your face or hyperventilation. How many days does it take? With anything seizure-related, it is almost a case-by-case basis. Some people have them right away while others take a little longer.
The week I was in the EMU is now a little blurry for me, but I believe it was around day 4 or 5 that I had my first seizure. After that, they kept coming. When the neurologist came in and first told me I had one, I didn’t even know! I specifically remember the last day and waiting for my brother to pick me up! I was ready to leave! The day before my brother picked me up was a day full of seizures apparently. I had a friend stay the night, and he said it was scary. I do not remember this, but I was sitting up and talking before I went into convulsions which I don’t remember at all.
My EEG results said I had a seizure in my left temporal lobe and then one in my right temporal lobe before the one in the right temporal lobe generalized. When it generalized is when the convulsions started.
It is amazing to me that technology can read what is going on in our brains and neurologists can make sense of it for us. Until this stay in the EMU, I didn’t understand where my seizures were coming from. I feel the stay in the EMU has helped me more to accept my diagnosis of Epilepsy. It was a long, boring, frustrating, but rewarding week. Anyone given the chance should try their best to endure it and stay as long as they can because once you do have those answers, it’s like a question mark is erased from your mind and a weight is lifted.
