My name is Erica. I realized I had seizures in December 2008, when I was a 20-year-old college sophomore. At the time, I was visiting my future husband, who lived in a different town. I asked when he had put up his Christmas lights. He looked at me strangely and said, “You helped me put them up two weeks ago.” Apparently, I had been having simple partial seizures without realizing it and those seizures were wiping out my memories. Five minutes later, I had a grand mal seizure. He took me to the hospital and the doctors discovered that I had encephalitis – swelling of the brain. The encephalitis erased my memory for a while. I had pretty bad amnesia, and I still can’t remember most of 2008.
The next year was kind of crazy. I was recovering from the encephalitis and trying to cope with the amnesia. I had to take a break from school and move back home with my parents to piece my life back together. I kept having what I would call “light-headed spells,” but nobody knew what they were. I saw three doctors who told me I was having panic attacks before I found a physician who recognized that they might be small seizures. Of course, it turned out they were seizures. In fact, I’ve had simple partial seizures almost daily ever since the encephalitis. I had a few big grand mal tonic-clonic seizures, but fortunately, those stopped once I had started taking anti-seizure medications.
Over the years, I tried seven or eight different medications, but they could not reduce the frequency of my simple partial seizures. Then in 2012, I started having complex seizures too.
The simple ones are not such a big deal. My arm usually feels funny and I might not be able to talk, but they’re typically over in 30 seconds and I’m fine again. With the complex seizures, on the other hand, I can lose consciousness for 20 minutes. It’s strange, I can function during the seizures and have conversations, but when I snap out of it after the seizure, I don’t remember what I said, what I was doing or how I got from one room to another.
I discussed epilepsy surgery with my neurologist, but based on the fact that my seizures originate in my hippocampus, it turned out that traditional surgery was not really a possibility for me. In early 2015, because I was still having frequent seizures while taking multiple medications, he brought up the RNS System. I looked into it and eventually decided to get it in September 2015. The entire medical team at University of Minnesota’s Fairview Hospital has been awesome throughout the whole process.
I’ve had the RNS System for a little less than a year now. I know it takes a while to optimize the therapy.
In the past year, I’ve had appointments every two months with my neurologist to adjust the RNS System. After the last adjustment, I’ve seen a noticeable difference in my seizures.
My simple partial seizures and complex seizures are less severe and less frequent now.
The seizures are over more quickly and they leave more of my memory intact. For me, that’s a huge improvement!
This represents the experience of individual(s) who have used the RNS System. Individual results will vary.