Alison's Story

I was eight years old when I had my first seizure. I was playing a video game with a friend and the next thing I remember was my mom saying to my dad “Brian I think she might be having a seizure”. I woke up and noticed that I had lost control of my bladder. I don’t remember getting into the car but I do remember going to the hospital still extremely confused. It was until my second seizure that caused me to have to stay the night at the hospital that I was diagnosed with epilepsy. I was confused since I was a young kid and had never heard of epilepsy before. I started out going to see a nurse and after one visit my mom decided that I needed to see a neurologist because I was having seizures every other week. It wasn’t until I started seeing a neurologist that I was put on a medicine.

My seizures were frequent enough that I started having trouble in school and kids made fun of me for having seizures. I had to stop playing basketball because I had a tonic clonic seizure during a game and was no longer able to participate in gym or other things that my friends could do. In middle school I started seeing a new neurologist who added a second medicine that gave me short term memory loss. I would learn something but could only remember enough to just get by. My mom explained everything that was happening to the neurologist but they acted like she didn’t know what she was talking about. Not willing to risk anything else, I started going to a new neurologist at age 13.

They finally listened to what was happening and took me off of the medicine that caused the memory loss and put me on a new one that still didn’t stop the seizures but my memory was getting better. The summer before I started high school, I had VNS surgery. I struggled in high school because I was a teenager who still struggled with grades, I was still having seizures every other week, and people made jokes about my seizures. I decided to go to a junior college so I could still live with my parents who knew everything about my seizures and since I couldn’t drive, I had to rely on them for transportation. I took my third semester off and had testing done to find out if I was eligible for brain surgery. After multiple MRIs and a nine day hospital stay, the results were inconclusive.

My new neurologist that I had started going to at 18 decided to add a third medicine. The medicine ended up causing horrible side effects and I was having more seizures. I once had five seizures in one day which ended with me going to the hospital. I finally got off of that medicine and switched to a new one which ended up being my miracle drug. I’m now 24 and I haven’t had a seizure since May 24, 2017. It’s been a long journey but the wait was worth it. I now have a great full time job and I’m going to learn to drive in the spring. My new goal is to spread epilepsy awareness and help others who are having trouble coping or feeling frustrated.