Amy’s Epilepsy Story

August 12, 2016

I was diagnosed with epilepsy when I was 8 years old. My family had no idea that it was seizures because I would shake as if I were cold and they thought I was doing it to avoid going to sleep at bedtime. After three nights in a row, we went to my family doctor, who sent me for tests and I got a neurologist named Dr. Keene at CHEO in Ottawa. I was told I had tremors and they started when I started my puberty and they would most likely stop once I stopped growing. I was told my epilepsy was due to a scar on the left side of my brain which I got from meningitis at 13 months old.

I went through elementary school with great teachers and friends who understood me even though there were lots of things I could not do because of my epilepsy. I took every type of medication and was allergic to pretty much every single one and have scars from it still to this day. Once I was in high school, I had a few teachers who followed me from elementary school and a teacher who had epilepsy as well, but I also had teachers who didn’t understand and did not believe me when I was having a seizure. Pretty much every year in December, I missed school the whole month because that’s when I would have a lot of seizures due to excitement of my birthday and Christmas. I was able to do everything though, and even during a seizure I was doing stuff because I was so used to it. But when I was in Grade 12 at the age of 16, I got sent home and was told not to come back till the next semester because one of my teachers didn’t believe me and just thought I faked having seizures to get out of school. I ended up going to work and went back in the next semester. The school met up with my mom to try to get me into an alternate class so I could learn at my own pace and stay home if there were problems. I finished high school in only 2 months and went for many tests. I ended up going for brain surgery in October 2004. I was seizure free for 5 years and had my daughter. I got married and had a great job, but exactly 5 years to the day, I had a grand mal seizure at work. I was alone in the office, my husband came in and took me out of a trash can. I had to work with someone from then on and about a month later, I ended up leaving my job. I lost a lot of weight and soon started having a lot of seizures. I finally was given a new neurologist, who prescribed medication that made me better. I have to stay home and my husband has to do home care for me, but it is a lot better than before. I volunteer now at my daughter’s school and am getting an award in June 2014 for all the work I did for the school.