Meet Samantha from Queens, NY. She’s a graphic designer who specializes in children’s accessories for Disney, Nickelodeon and Marvel. Read her epilepsy story below.
What do you like to do?
I love to watch sports and go to sporting events. I’m a huge New York Rangers, New York Mets, and Pittsburgh Steelers fan.
Read former Pittsburgh Steelers guard Alan Faneca’s epilepsy story
When did your epilepsy journey begin?
When I was five years old, I had a seizure in the middle of the night. My dad had heard me talking to myself and making noise. My mom has epilepsy as well, so when my dad saw how I was acting he knew it was probably a seizure.
Find out more: Is epilepsy genetic?
What type of epilepsy do you have?
I was diagnosed with complex partial epilepsy. I never had an aura which meant I didn’t know when I was going to have a seizure. I would sometimes have multiple seizures a day and most of my seizures happened in the morning. My seizures were triggered if I took the generic version of Lamictal or missed a dose.
Learn more: What happens if you miss a dose of seizure medication
What has your experience with doctors been like?
Overall, my experience with doctors has been great. Dr Karkare was my neurologist for most of my childhood. It was tough for a while, especially when I got to High School, because I was still having seizures and couldn’t start learning how to drive when I turned 16, while all my friends could.
I would get irritated at my neurologist because none of the medications or different dosages were helping to prevent my seizures, even though I knew it wasn’t her fault that I was still having them. When I turned 18, I went through a lot of EEGs and MRIs to pinpoint exactly where my seizures were coming from. Dr Karkare had noticed all my seizures were starting from one spot on the right side of my brain in the hippocampus. She told me, my mom and dad that brain surgery was an option, and I was all for it.
I had to go through a few more EEGs, including one where they had to drill through my skull to put wires directly on my brain to be 100% sure where all the seizures were coming from. In the summer of 2019, I had brain surgery to remove the part of my brain that was causing the seizures. Since then, I haven’t had a seizure, and I can now drive.
Dr Proteasa is my adult neurologist, and she has been a great help. I’m still on some medication but not as high of a dose as I used to be on.
How have you found support for epilepsy?
My mom also has epilepsy, so she’s a big support for me. Having someone who knows what you’re going through and can relate to really helps. My whole family has always been very supportive to me about my epilepsy, as well as my boyfriend.
Do you use the Epsy App?
I use the Epsy App to keep track of my medications, track any weird feelings I’m having and to learn more about epilepsy.
What would your message be for someone who was recently diagnosed?
Trust your neurologist and trust the process. It may seem scary at first, but stay positive and find support through your family and friends. Just because you’re diagnosed with epilepsy, doesn’t mean your whole life has to change because of it. Always remember to seize the day.
