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I have always accepted that I’ve had seizures but I’ve never really been open to discuss them with others. Therefore I have only talked to my parents about my struggles.
Here is how it all started.
When I was little I was an all A student in kindergarten and 1st grade. I know, easy grades so no surprise there. But, when I was in 2nd grade my parents noticed I was starting to fail in school. I was also forgetting things, losing control of my body, and losing any train of thought I had 2 minutes before my “black out”. I was constantly being asked “Beca, please continue reading.” And I would always reply “what was I doing?” Followed by “where was I? Which page was I on?” My parents became very concerned as to what was going on, therefore they had a talk with my teacher. She told my parents she would keep an eye out for me. But she also has 20 other kids so she couldn’t just watch me.
Later that year my parents took me to the Dr. I got an Ambulatory E.E.G. and had to come back within 2 weeks. My Dr told my parents I have “Petit Mal Epilepsy” also known as “Silent Seizures” I was right away put on a drug called “Divalproex” also known as “Depakote”. It is a strong medication so I had to slowly start taking it. At first nothing was going wrong and things were starting to be normal again. Then within a week of being on this Medication I started puking. Every single night from an alergic reaction to the medication. The dr told my parents and I that we will most likely never take that one ever again. She then put me on “Kepra” which did no good. At this point I was having 4 minute long seizures about 100 times a day. I finished my 2nd grade school year and my parents decided to homeschool me the following year to make sure they could keep an eye on me at all times.
I had a 1 and a half year old sister and a newly born brother. He was the king. The only boy and the baby of the family! Man, I loved him to pieces! One day he was crying, so I decided to pick him up and bring him to our mom. The next thing I knew my mom was in front of me and I heard a baby screaming at the top of his lungs. But I couldn’t locate him. I was so scared when I found him under the couch. I was so scared thinking “What did I do!!???” My mom told me I had dropped him during a seizure and that I could no longer hold him while walking around. This still haunts me to this very day.
By 4th grade we got a new Dr. he had me go get blood work done and get ANOTHER E.E.G. And wear it home for 2 days! My dr got a good look on what needed to be done and right away put me on “Zeroton”. It started with 1 pill, then a month later it was 2 pills and then we took a year break from uping my medication to check my levels and get my E.E.G. Again. I was starting to have less seizures so we knew it was working. A month later it became 3 pills, then 4 and then 5. At the moment I was maxed out. I was on the highest dosage of Zeroton that anyone can handle. So I got my levels and E.E.G. done again. I was still having them. I was always told “With Puberty she can grow out of them!” Yea, that didn’t happen.
When I was 13 I noticed something really cool. I knew when I had a seizure! I officially knew after I had one because I felt like “I just missed the last 30 seconds of what you were saying”! I was put on one other medication to go with the Zeroton, but sadly I can’t remember what it was called. It left me feeling like I was going blind and couldn’t see. Everything was blurry. I got an eye test done and they said my eyes were 100% perfect and that it was highly possible that the new medication my Dr put me on was making my vision blurry.
When I was 15 we made the huge decision to try Depakote one more time now that my body matured a little more. Within the first month I was totally off of 1,750 mg Zeroton a day and totally switched over to 250mg of Depakote a day. I went from around 75 seizures a day to 50. So we got levels done and a E.E.G.! We were all clear that it was helping! With in 2 years I was switched over to 1,500mg of Depakote a day and down to 5 seizures a day that were only 30 seconds long. My dr was at his limit on Depakote. I had a decision to make. Keep going or stop and deal with the few seizures I have a day. I thought to myself “I haven’t been putting up with this for 8 years to give up now!” So I kept going. I was put on “Lamictol” only 50Mg a day and got another E.E.G done.
June 20, 2014… this day was a huge day for me. This day was the day I went to the dr and had my first job interview (I was 17). My Dr told me “You are having Glitches, it is technically not long enough to say it’s a seizure so you are having none.” I remember thinking “FINALLY! This is all over!!” My Dr reminded me though that my 2 year count of being seizure free started that day. In the State of Indiana you have to go 2 years without having a seizure to be able to get your license.
Oh! I also got the job!!! I was 17, seizure free, had a job and a senior. Life couldn’t get better!
My whole world got shaken on June 16, 2016. I had some seizures. I was so mad! I was 4 days away from being 2 years! I am currently taking 1,500 mg of Depakote and 150mg of Lamictal and have had no seizures ever since.
I take everyday that I can get. I’ve learned over time that it isn’t about when and what everyone else is doing. Everyone has their dreams, some want to college and I just wanted to be seizure free. I am currently waiting 1 year until I can drive.
Thanks for reading. Please feel free to share with others.
Hope I didn’t bore you.
Your friend, Beca
You can read more about Beca on her blog, ” Growing up an Epileptic” by clicking the link below.
Sara is in her early twenties and has had epilepsy since the age of 13. Join Sara as she share’s her experiences with epilepsy, VNS surgery, and life in general on her blog, “The Epileptic Life of Sara” at http://theepilepticlifeofsara.blogspot.com/ and her you tube channel, https://www.youtube.com/user/sarab2324
“When I first got diagnosed with epilepsy at the age of 13, it felt like my life came crashing down. I remember telling my family about the diagnosis and they were upset as well. I knew I needed to tell my friends, but I didn’t know how exactly. “Oh hey, I have epilepsy now.” That isn’t what I wanted to say, but again, I had no clue how to bring it up. One day I didn’t have seizures, the next I had epilepsy.”