In my last post, I wrote about anticipating a three day hospital stay to undergo brain scans. I shared that I was experiencing severe anxiety about the testing, mainly because I knew the doctors would be trying to induce seizure activity throughout my stay.
During my first day and night at the hospital, I was thinking about how I would write a follow up blog post telling everyone that it wasn’t nearly as bad as I thought. They lowered my medication only slightly, shined some strobe lights in my eyes, forced me to hyperventilate, and told me I could only sleep for five hours. Not that bad. I’ve gotten five hours of sleep before and I was fine. I could deal with flashing lights for 3 minutes. I’ve had shortness of breath before. Everything had turned out fine, what would be different this time?
By day two, the doctors still had completely empty scans. All of the activities that they believed would provoke seizure activity in my brain hadn’t worked. They decided to up the anti. By that point, I was on half of my normal medication dosage, doing strobe lights and hyperventilation tests twice a day, and on my third night of sleep deprivation. The next thing I knew, they were asking me what type of alcohol I preferred, beer or wine?
I did a double take. What did they mean, alcohol? Is it even legal to prescribe alcohol to a patient in a medical setting? It quickly occurred to me that I had recently turned 21, and of course it was legal. Alcohol had been a huge part of what caused my first grand mal seizure, so it made sense that they wanted to introduce it into the testing. They were running out of ideas. Despite that little bit of fear, day two was full of visiting family, a lot of laughs and a little bit of drunkenness. I wasn’t too worried.
Day three came and my doctors were baffled. My neurologist came in and told me that it was rare that they tried to induce seizures for so long with no avail. She asked me if I would be okay if she sent a cardiologist for a consult, because she was starting to think the seizures were caused by something else, and maybe I didn’t have epilepsy at all.
This went against everything I had believed to be true. My world was rocked with the possibility of a heart problem after all of this time. I underwent a heart echo and EKG, both results coming out normal.
By my fourth day in the hospital, I was experiencing anxiety like I never had before in my life. At 11:00 AM, my nurse came in with two shots of vodka, saying that the doctors wanted me to take two that morning and two more that same afternoon. By that point, the gradual decrease of my medication had ended. I was on zero milligrams of anti-seizure medication. When I was admitted, I had been on 2750 milligrams. It was a huge drop. More than I had ever expected.
Ever since October when I was first diagnosed, I have been training myself to avoid excessive amounts of alcohol, restless nights, flashing lights, and missed dosages. These things had become some of my biggest fears. There were days I didn’t leave my room because I hadn’t slept enough or attended a concert the night before. And that was probably the best mindset to have, given that suffering a grand mal seizure is a traumatizing and dangerous experience.
Being that I already have a history of anxiety disorder, this testing literally made my biggest fears come alive. I was being forced to do things that I knew were terrible for me. While I knew that I was in a controlled environment and the nurses would take care of me if anything were to happen, my brain couldn’t move on from the fact that I was consciously allowing myself to do these things after being so diligent about avoiding them for so long. It felt like self harm.
When my neurologist came in later that afternoon, I told her that I was extremely uncomfortable with taking the other two shots of vodka she had prescribed. I cried to her, sharing that I was at my breaking point. I couldn’t take anymore. I wanted to go home. This psychological torture was too much. If we hadn’t gotten any answers by then, what was the point?
She told me that it was fine. I didn’t need to drink anymore alcohol that day, but that she wanted to give me Benadryl, which is known to induce seizure activity in epileptics. She also strongly encouraged that I stay in the hospital, as did my mom. They told me that they understood that this was difficult for me, but this would give us the answers we need to get me on the right track, back to my normal life.
In that moment, I resented them for it. How could they say that they get it? They’re not the ones in this bed, worrying constantly that they could be brain damaged any moment.
I told myself that it would be okay. It had to be. I wanted this to be over. I wanted to be healthy again. And I couldn’t if the doctors didn’t get the information they needed.
So I stayed. I can honestly say that that Thursday was the worst day and night of my life. I’m not one to cry too often, but whenever a doctor would come in to check on me, I tried to tell them that I was okay, but would instead burst out in tears. Because I didn’t want my mom to witness me suffering a grand mal seizure, I asked her to go home for the night. I told her I could handle it, and hopefully it would be over soon. I was instructed to stay up until 3:00 AM and take the Benadryl then.
The night was unbelievably long. If it hadn’t been for cousin visiting me for a few hours and then my brother and boyfriend talking on the phone with me for the next few hours, I’m not sure how I would’ve gotten through the night. At 2:30 AM, I laid in bed, sobbing, feeling the epileptic twitches in my arms and legs. I knew I was close to having a grand mal seizure. This was the feeling I’d experienced way too many times. I knew the danger I was in.
I told myself that I would just deny the Benadryl when the nurse brought it in to me. I’ve never had allergies, so I had no idea how it would affect my body. I would just tell the neurologist the next day that I was too afraid and that I hadn’t done it. We could try again the next day.
In a stroke of courage, I decided I would just take it. What was the worst that could happen? I’d had grand mal seizures before, and I’d survived them. Who was I to think I knew better than a board certified epileptologist? I took the pill right as the clock struck 3:00 while the violent twitches continued and I laid in the dark, eyes wide open until the Benadryl finally kicked in and I was able to fall asleep.
The morning of the fifth day, I was woken up by a nurse at 6:30 AM, wanting to do bloodwork. I knew I hadn’t slept nearly enough. I knew that I was at risk every second that there wasn’t medication in my body. It had gone too far. It was time for this to be over.
I tried to calmly pass the early morning hours by watching movies until my neurologist finally came in around 10:00 AM. She told me that they finally recorded seizure activity on my scans because of the Benadryl. She officially diagnosed me with Juvenile Myoclonic Epilepsy, and said that a nurse would be in shortly to give me an IV of anti-seizure medication. With that IV came a huge wave of relief.
My eyes welled up with happy tears. It was finally over. Not only the hospital stay, but the nightmare that the past ten months have been. There had been so many questions and so few answers. There was so much uncertainty, fear, and change. Not only have I been through a lot, but so have the people around me.
My roommates have spent hours talking me down from the ledges I climbed in my mind from fear. They helped me shower when I underwent reparative shoulder surgery to correct the damage from the first seizure. They left encouraging notes on my desk and knew exactly when I needed a “seize the day” joke. They made me laugh on my hardest days.
My boyfriend has dealt with my mood swings like a champion. He has stayed up so many nights talking me down from those aforementioned ledges. He encouraged me to go outside of my comfort zone, especially in those early months. He made sure I was rarely alone, because he knew it was the hardest for me when I was. But, most importantly, he never saw me any differently for being diagnosed. His support never wavered for a second, even in the darkest moments.
My mom has spent her entire summer driving me where I needed to go. She cried with me during long trips to and from New York City for doctor’s appointments. She always made sure I had the very best medical care there was. She held me at 3:00 AM on the nights when I couldn’t sleep and my body was shaking uncontrollably from fear. She stopped at nothing to make sure I would be okay.
If I sat here and explained what everyone in my life has done for me during this time, this post would go on forever. Even the girls from the Epilepsy Foundation of New Jersey who reached out to me so that I felt like I had someone who understood. And the people that I’ve never met that commented on my posts in the Epilepsy support groups on Facebook. Every single text, comment, and call I have received from someone showing their support has meant everything. I am so blessed to have the people in my life that have supported me. You know who you are. I truly don’t know what I would’ve done without you.
I have a new sense of confidence knowing the unknowns are over. I can live my life knowing that I will be okay. I can do the things I was afraid to do before and finally stop limiting myself. I know it won’t always be easy from here, but I have a feeling this new school year will bring the peace I have been trying to find for so long.
There are a few reasons why I decided to share this marathon post with you.
One, because I wanted to share my story with you. It has been a whirlwind. Terrible and scary, but also pretty interesting.
Two, because I want to convey the importance of doing what’s best for you, even if it’s what you’re afraid of. If I had left on Thursday or hadn’t pushed myself to take the Benadryl last night, we may not have gotten the results we needed. I might have stayed at the hospital for a few more days and went home without a diagnosis. I have realized, even more than before, that I am stronger than I give myself credit for.
Third, and most importantly, I wanted to share what it really is like to have epilepsy. It’s an invisible disease that seems easy from the outside. For many, the struggle exists mainly in the mind. The fear, depression, and extreme anxiety that epileptics face is often underestimated. My first seizure took place in my college dining hall, and there were actually students trying to take videos of me while I was convulsing. It’s not a joke, and it’s not a game. We aren’t looking for pity, just awareness and understanding. There are too many misconceptions about the disease.
The doctors wanted me to stay one more night to ensure that I’m stable and back on my medication, so I am writing to you now from my hospital bed during my last night. I couldn’t wait to write about this and share it with you. It’s the happiest and lightest I have felt in a long, long time. This smile hasn’t left my face all day.
With that, know that you are also stronger than you believe. Have the courage to do what’s best for yourself, even if it’s your biggest fear. It will lead to bigger and better things. It will lead to moving on. It will lead to peace.