I wasn't exactly sure how to start this post, or what to say or how to even say it but what better timing than Epilepsy Awareness Month? Most of you probably can tell by the title, but have no idea what has happened leading up to this point. Back in January, almost a year ago, I was diagnosed with epilepsy. Yes, epilepsy. Before I go into details of my experience of epilepsy, let me give you some background on what exactly it is.
Just so you all are aware, seizures and epilepsy are not quite the same thing. People can have seizures and not have epilepsy. Epilepsy is a chronic disorder where those diagnosed have recurrent, unprovoked seizures. Someone can be diagnosed with epilepsy if they have two unprovoked seizures that are not related to any other medical condition. They can be related to a brain injury or, often enough, the cause can be completely unknown...Okay, so then what is a seizure? There are a few different types of seizures, but according to epilepsy.com, a seizure is "an event [while] epilepsy is the disease involving recurrent unprovoked seizures." This doesn't nearly explain the traumatic experiences of those diagnosed or those surrounded by those diagnosed.
Back in 2013, I had my first seizure. It's hard for me to talk about it because when I do have one, I don't remember them. I black out. My friend Rachel and I were on our way to Narragansett Beach in Rhode Island (I was attending Johnson & Wales, in Providence, RI, at the time) to spend the day with our friends. You know, really looking forward to it, school was out for the summer, we couldn't wait to just chill. From what I can remember, it was one of the scariest days of my life. One, minute I was having a full on conversation with Rach, and the next I remember slowly gaining my consciousness back. I felt lost and confused. My whole body hurt, my head was killing me and my eyes were blurry. I felt as if I had just gone to the gym for the first time in years, I was so sore. When you have a Grand Mal seizure, it causes a loss of consciousness and violent muscle contractions. It can typically last 3 minutes followed by a period of unconsciousness or confusion that may last for 30 minutes as the brain recovers from the seizure activity. Poor Rachel, she was a wreck. When it first started, she thought I was joking. But then I began tapping on the window with my knuckles and then my body went. I was foaming at the mouth, I was twitching, jerking and unresponsive. She called my mom immediately, screaming in terror and then 911. When you see someone go through this, I can't imagine how petrifying it must have been. You don't know what's happening to them, are they okay? They are completely out of it and have no idea what is going on around them. They black out.
As I regained consciousness, the first thing I can remember, were the firemen at my window and me not wanting to roll it down because I was scared. I thought I did something wrong. I was refusing to go in the ambulance, I can't even tell you why. I was just scared. They had to ask me questions, 3 to be exact. If I was able to answer them correctly, they weren't going to make me go with them. The first question was, "What year is it?" I said, "2011". The second, "How old are you?" I was 20 and answered with "18". The third, "Who is the current president?" I said "Obama, duh". And Obama was indeed the current president, but I didn't get the other two correct so I went to the hospital with them. They were all really nice, and somehow found it funny that I answered the Obama question like that, haha. Anyways, that was my first seizure. I had to follow up with a neurologist to have tests done and make sure everything was okay. I was all set, good to go. I didn't have epilepsy. They put me on medication for a little bit but it wasn't for life.
5 years later...
January 2018 came around, and I was diagnosed with epilepsy, for sure this time. This day was soo vivid to me. It was a Saturday morning, I had just left the doctors office with Liam, I thought he had an ear infection. Turns out, he was perfectly fine just a head cold. I was on my way home, on Route 15 in Wallingford, listening to All On Me by: Devin Dawson, jammin' out. Next thing I know, there is a police officer at my door. I am completely out of it, I have no idea why I am pulled over, what happened, or what I did wrong. I was terrified. This police officer made me feel as if I did something wrong. He was telling me to get out of the car, saying excuse me ma'am, making me feel as if I did something to Liam who was screaming, crying in the back seat. I felt like a horrible mother. I asked him if I could please call my parents, call anyone. I had them talk to him cause I barely could form words besides "I think I had a seizure". Typing these words out right now, thinking about how frightened I was that day, I can't help to tear up as I tell this story. Next thing I know, firetrucks, ambulances and cars are lining up behind me. I was holding up the highway. And I still couldn't get my baby out of the back seat. My parents came, and again, I refused the ambulance, but promised I'd go to the hospital. So I did. The next day, I was diagnosed with epilepsy and prescribed the lifelong medication, Lamotrigine. My life flashed before my eyes, literally. I lost my license for 6 months, and all within those 6 months, I had many tests done, blood work on top of blood work, MRI's, EEG's. I'm sure you're wondering, why all of a sudden now? What is triggering it? Well, no one knows. But, keep in mind one thing that may trigger them is dehydration. It just so happened, both nights before I had my seizures, I was consuming alcohol and not drinking enough water. Thanks to my Saint Christopher medal in my car, who is the patron saint for travelers and epilepsy, Liam and I remained safe, with little to no damage done to the car.
August 17, 2018
This was my most recent seizure and probably the one that scared everyone the most. Everyone was here when it happened, so they were able to witness it, especially my little guy, Liam, my boyfriend, Justin, my brother, AJ, my grandma, and my best friend, Kasie. I lost control, I don't even remember it happening. Poor Liam was crying because he could tell something was wrong, my grandma got him out of these as soon as possible. AJ screamed to Kasie, "Cassey's having a fucking seizure" as Justin laid me on my side and cleared the area. AJ immediately called 911, then my parents. Minutes later, my mom, dad, my brother Bryan, my mom's best friend Kelly, AJ's best friend Mason, my cousin Danny and the EMT's all arrived to my house. Then, everyone was there helping me, I've never felt so loved and cared for.
When someone's having a seizure, there's not much you can do. Most of the time, you have to just let it resolve on its own. Some ways to help a person going through one is: by helping them to the floor and clearing away furniture or other items. Do not hold the person still. Do not put anything in the person’s mouth. I understand why someone may do so because I now have scars on my tongue from biting it so hard during them but it can actually cause more injury. A seizure lasting more than 5 minutes is an emergency, be sure to call 911. Calm reassurance can be helpful to a person who is recovering from a seizure!! Because I forgot to take my medicine the night before and the morning of with a combination of drinking that night as well, which just so happened to be my birthday, is the likeliest reason to have triggered my most recent seizure.
If you are interested in learning more about epilepsy, visit https://www.epilepsy.com/ for more information. If you know someone who may suffer from this disorder, suggest a medical identification tag that can be either on a necklace or bracelet for future situations that may require immediate attention.
Thank you for reading my story! If you have any questions or concerns, leave a comment below! I'd love to hear from you all.