Hello! My name is Madison and I am currently 17 years old. I was diagnosed with Epilepsy when I was 13. I have nocturnal tonic clonic seizures that last around a minute. Ever since I can remember, I always dreamed of my teenage years being epic. I always knew that one day when I turn 15, I would get my permit and when I turn 16, I would be able to drive independently. Life as a younger teenager, 13, was going great until the night of March 02, 2016. At 2am I had a tonic clonic seizure and found myself in the hospital. Now as a baby, 1, I had a febrile seizure, but I had never had a seizure that was not due to a fever. Once I came to, I questioned my parents why I was at the hospital, they then informed me that I had a seizure. I was absolutely shocked.
Several days after my seizure, we booked an appointment to go see a neurologist, he immediately put me on Keppra and told us that this medication works for some people, and doesn’t work for some. Well, I was one that didn’t respond well to it. My neurologist at the time told me a side effect was suicidal thoughts, and sure enough 2-3 days in, I began to have thoughts and actually made my way to even do the action. It was like a voice in my head was just saying to end my life, that I am no good, and it was like I wasn’t Madison, it was like I was under a spell. Right as I was about to do it, it was like a divine intervention told me, “Madison, stop.” I immediately put down the object and just stared at what was about to take place, I couldn’t believe it. When I tell the story to people it brings tears to my eyes. I then switched medications and I was put on Trileptal by a new practice since we had just moved to Georgia. I was doing fine on Trileptal, I had been seizure free for three years and one month, until the night of April 09, 2019, I had another tonic clonic seizure. I was so heartbroken because I had just gotten my permit since I had been seizure free for so long. We then went back to my neurologist and she wasn’t able to see us that particular day, so we got to see another. She looked at my records and had a questioned look on her face and I knew something wasn’t right. Immediately, she looked up at us and stated, “Why are you taking Trileptal?” My parents and I looked at each other and I said, “Because the other neurologist put me on that.” She shook her head and then said, “With your type of Epilepsy, this medication can CAUSE you to have seizures.” My parents and I were very upset. Soon, I changed over to Lamotrigine.
That particular practice then wanted me to have a 24 hour EEG done, so they hooked me up and I went home to have it. The next day, we returned the device and waited a couple of weeks for the results. Once we got word that they “had results”, we made an appointment, and had to meet up with the same lady who told me I shouldn’t have been on Trileptal. Once she entered the room, she questioned why we were even here. We told her, to receive the results from the 24 hour EEG. She then looked up on her computer and told us, “There are no results.” My parents and I were absolutely done with that practice.
Since the above story, I have had more seizures, but so far I am doing well! I am still taking Lamotrigine and I am also taking Zonisamide as well as different vitamins much as Complex B, Magnesium and Calcium, and Folic Acid. This past January I decided that I would start a Facebook group for people with epilepsy and even the caregivers, Facing Epilepsy Together, and I will be perfectly honest, I was embarrassed at first to make the group, but through this group, I have met so many different people from around the world who have Epilepsy and we share our journey. I have made a lot of friends through this group and I am so grateful to have met them.
Stay strong, prayers to you all!