My Crazy Life

I've had epilepsy since I was 5 years old. My parents gave me my meds and sent me out with my siblings like there was nothing to worry about. Thinking back on it as an adult, and my parents are long gone, I realized that I could have been hurt badly. I did biking, roller skating, sledding, ice skating, skiing, etc.

As I got older I joined the softball team and played hockey. I was also big into sports at school. We did gymnastics in the winter, and volleyball, basketball, and field hockey in the fall. Spring was track and field and we had to do it all in gym class.

School and epilepsy

My parents knew I did all this but never said a word. I loved the track meets. They had taken me off my meds at puberty without an EEG or neurologist saying "ok you've outgrown it." I hadn't, but I never said anything to my parents since they never took an interest in my life. But we all had to go to my siblings' school concerts. They were all straight A students, and I was told I was stupid. Because of my epilepsy, my average grades were D or F, or a B occasionally, but mostly C.

Starting a family

We moved away a couple of times and when I finished high school I met my sweetie. We were married within 6 months and I was only 18. We were soulmates. I did tell him about my epilepsy. We had our kids young and it was a good thing since I had to have my ovaries removed at 25. It was then that I had my first grand mal. It scared him. I spent numerous days in the hospital and they put me on Dilantin. My seizures continued to come.

Worsening issues

Back in the hospital, and weaned off Dilantin, and put on something else. I don't remember what. At some point I was put on Tegretol, but that was a few more drugs up the road. It was working well until I had a seizure and they added Neurotin. I took those till my mid 40s with no seizures, although they said my brain activity on my EEG was still there.

Well mid-40s I started having 5-6 seizures a day plus lots of absence as well. I ended up on disability from my job. They kept trying different meds and combos. They put a VNS in which helped a lot. I tried to go back to work but my brain was fried. I couldn't remember anything and my manager told me they will arrange for all my SSDI and I will be retired and on long term disability. Everything went just that way. I was approved. But I had to go for brain testing first.

Learning new things

I had a stroke last year, but got that med quickly and had to go for all the brain stuff again. They told me how to remember things by writing it down, repeating it, associating, and picturing it. So for any of you with memory problems too it's called WRAP: write, repeat, associate and picture it. Hope it helps someone else.

My seizures are very infrequent since the stroke. Strange but I'll take it. And that's me. Seizures never stay the same; ever the change throughout your life! Thank you for reading my story.

By providing your email address, you are agreeing to our privacy policy.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.

Community Poll

How often do you think about your seizure triggers?