My first EMU stay

Do you have your first overnight EEG appointment? Or you're like me and expect your first visit to the EMU! Either way, I'm now very experienced and would like to tell you about my FIRST experience at the EMU and what to expect.

In October, I met with my epileptologist and voiced my concerns about having more seizures. He explained that sometimes epileptics have rough months where we are bound to have more seizures than others. If it's any constellations, I was recovering from what I believe was COVID at the time- and being sick and epileptic is never a fun combo. The conversation of driving was then brought up! He said that if I wanted to consider driving, I would have to have a more recent EEG and do it in person because sometimes when EEGs are ambulatory since they can't see everything, the results aren't always the best. I was told the longer I stay- the BETTER the results.

Now, listen. I know there is no way I can drive- it's not in my cards, but by the way, they were talking about it. I WANTED to believe I could drive. Plus, I'm turning 18 THIS SATURDAY (yes, 18 on the 18th.), so I'm going to be aging out and getting a new doctor soon- I want to have the BEST results possible!

So, last Tuesday, I FINALLY had my EMU visit, which kept getting pushed back because of insurance. To set the picture for you, my appointment was originally scheduled in November… It finally got approved this month.

For those of you who are unaware of what the EMU is, let me explain it! EMU stands for epilepsy monitoring unit. "An epilepsy monitoring unit (EMU) is an inpatient unit run by specialists in epilepsy. EMUs provide in-depth diagnostic and treatment services for people with difficulty to diagnose or treat seizures. They are typically part of a specialized epilepsy center that provides both outpatient and inpatient services to people with epilepsy and their families." According to the American Epilepsy Society. Usually, patients are put into the EMU If they are eligible for surgery or are weaning off meds.

Going into my visit, I was nervous and held firm that I DID NOT want to be there. I thought the EMU would be like a scene out of Stranger Things- a big sterile room with a big glass window, and you would be watched by tons of doctors. It turns out I was wrong! The most different thing I had during my visit was a sign that said, "Caution fall risk." It was like any standard 24-hour EEG stay, except it was in a different hospital unit.

The hospital I go to is Yale, which means it's a teaching school. This was the first time I had ever experienced student nurses. They did an amazing job, although I would be lying If I didn't find it a bit awkward having ten student nurses watch you get your electrodes glued on your head. Funny enough, my tech was a tech I've had before, and he remembered us! After my electrodes were glued, we stopped for lunch: chicken nuggets and grilled cheese. It was a weird combo, I know! Once we stopped for lunch, we started the testing: hyperventilation & the strobe lights.

Honestly, I want to tell you I was completely fine and did not have a breakdown over my discomfort. But that would be a lie… lol! I was freaking out within the first hour over.

After a while, I started to settle down & relax while watching Modern Family. I also ordered dinner because the hospital food was getting gross, so I ordered mediocre pizza from a restaurant in the real world.

As the night started falling and the clock started ticking more, I became increasingly tense and angry about my situation. I wasn't sure what was worse, going to sleep uncomfortably or staying awake uncomfortably! I decided sleep would be a good option.

The following day, I woke up at a ripe 7:30 a.m. and fell asleep until 8:00 while scrolling through Instagram reels (I deleted TikTok now; I feel reformed😉). I was woken up by one of the kindest student nurses I had met, and I'm so upset I don't remember her name!!! She took my vitals, and at the same time, my breakfast arrived.

I had been told my epileptologist would stop by around 9:00 to tell me if I could stay or leave. I was crossing my fingers that he could say I could go… but now I'm beating myself up for that. I waited and waited, and in true doctor fashion, he didn't come until 11:00!!!

When he had walked in with the neurologist studying under him, he started his sentence with, "Well, I've got some bad news." I was told I still have too many seizures to drive, and they've gotten a bit longer. So instead of having them every day, every hour, 8-10 times in that hour, for 2-6 seconds. I have them between 2-10 seconds. It was mentioned that I could go back on medication or coast if I wanted to drive. I decided to coast because I've only been off meds for two years and have never felt freer.

I have nothing against anyone on medication- hear me out. I've been medicated since I was four years old. I didn't know the REAL me until two years ago when I got off meds. My medicine suppressed my bubbliness gave me the worst pains, and I've struggled with body image due to something helping me cope with my day-to-day. If it was life or death, or seizures were worsening, it would be a conversation- but I'm in no rush to drive. As my epileptologist LOVES to say, "At 60 mph and a 4-second burst, she would cover approximately a little over a football field. At 30 mph, she'd go half that far."

I was told I was free to go home! I was excited to get everything taken off. The same student nurse who woke me up this morning came to watch me get my electrodes taken off. She was very excited because she had done lots of research on me the night before! I got to leave and felt OK with my results, as I expected. The only problem was a few days later. It hit me. I felt utterly helpless. "Haven't I already gone through enough?" "Will I ever be normal?" "Will I just continue to get worse instead of better?" are thoughts that hit me.

Within the past few days, I've been coping more with the results of my EGG, and I don't know where that leaves me! Either way, I'll be here when things decide to change. Plus- in today's climate, with THESE gas prices, it's a wiser idea to stay off the road.

Xoxo,

Sophia&Milo