My life with epilepsy is misdiagnosed. The first doctor I went to diagnosed me with A.D.D. when I was in fifth grade. I got put on meds to help my focus and improve my grades but year after year, my doctor would increase the dosage, as I would my grades would start suffering.
Mid-eighth grade I actually stopped eating — all I did was drink water. I weighted about maybe 96 pounds and I had a grey tint to my skin with black circles under my eyes. I was depressed. I said to myself, “Why should I keep living? I don’t wanna be living no more.”
Then came high school. I was too thin, I was bullied, kids called me retarded, they’d say, “ew.” I even had a chair thrown at my face by a “friend”. When that happened, we went to the principal’s office to try to get it settled up, and all of the sudden, I woke up in the nurse’s office. The nurse said, “You just had a seizure.” I was like, “No I didn’t,” but I did.
They took me to the emergency room to see a new doctor. When she saw me she told my parents, “your daughter’s having seizures and she’s been having them.” She could tell because of the grey tint to my skin and the black circles under my eyes. After my first EEG, my doctor noticed the seizures and took me off my A.D.D. meds right away and put me on new meds.
After that, we noticed my seizures. My dad started hearing seizures from me when I was sleeping, and once again, my new meds stopped working.
Medication after medication, she changed so many meds it was unbelievable; probably about ten of them.
I started eating again, and gained a bit of weight. My doctor suggested I leave the school I was currently going to and transfer to a new school. I began to be bullied again in my new school and it triggered a seizure in the middle of English class. The nurse wasn’t there so they had to call an ambulance.
When I woke up, I was on a stretcher in the emergency room. The day I was admitted into the hospital changed everyone at school, and my doctor told me to get a second opinion with another doctor she recommended. Unfortunately, the new doctor just gave me another medication. As soon as that med started to help me, I started having even more seizures.
When I returned to school, kids were better to me. They would ask me how I was feeling, and would start looking out for me.
More time went by, trying new meds and finally in my senior year of high school, I finally found a medication that helped.
After I graduated from high school, I took two years off before going back to school for massage therapy. I had to drop out because it was a little too tough for me, and that’s when I learned about NeuroPace and the RNS System.
My doctors said, “what do you think about this?” and I said, “Let me think about it because I’m not sure about having something put on my head.” But each doctor’s appointment we went to, he’d ask me about it. I finally made my decision and in February of 2015 I had the implant procedure. It was the best thing I had ever done.
It’s not a medicine. To me, it’s my life saver.
Ever since I got the RNS System, my seizures have gotten a lot better, they’re not as strong as they used to be, and I don’t have them every month. Now I know I don’t ask my parents or my brothers for as much help. Now I understand more things.
Every time I speak to a family member or a friend they say, “Oh my God, Brianna, you’ve changed so much! Your speaking’s gotten a lot better, in my eyes you seem a lot more confident”
Before I got the RNS System put in, I would think, “Oh my God, I’m not going to be able to do this on my own, I’m going to fail everything I do.” Now I’m like, “I’m gonna go for it, I’m gonna get it done, I’m gonna get A+’s, I’m definitely gonna do it.”
I might even be able to drive soon, and that was one thing I’ve always wanted to do! I’m the wild one, I know, but hey, “what are ya gonna do?”
I’m so proud that I made this decision. I tell people all the time, it’s me now. I’ve gotten a lot better — it’s the best thing I have ever decided to get.
Published on: December 7, 2014
This represents the experience of individual(s) who have used the RNS System. Individual results will vary.