My Epilepsy Journey

Epilepsy
March 3, 2021

My Epilepsy Journey

by: Victor Guimares

I was diagnosed with epilepsy when I was 9 ½, I was put on Dilantin and seizure free for two years, then the seizures returned, since then my life has been a roller coaster. I’ve seen a lot of doctors in Miami and Broward, I have tried practically all medications available including the VNS (vagal nerve stimulator) but the seizures continue. Sometimes I go without having a seizure for a few days, unfortunately they return.

I’ve added Epidiolex to the cocktail I’m taking now and I was doing better for a while until three weeks ago. While I was grocery shopping I fell forward flat on my face, I fractured my jaw in three places and lost my front teeth. I was hospitalized for one week, now I’m home with a long recovery in front of me and hoping for the best.

I first heard of EFL in a newspaper, I believe it was called Epilepsy USA. I try to make the monthly support group meetings every month. Every year they have a walk to raise funds so they can continue their work, an informative thanksgiving dinner is also held every year.

Since attending the support groups I have learned that I’m not the only one with this kind of problem.

I was very shy attending the meetings and participating in activities such as these, now I’m more open. Looking toward the future I wonder how my life will be like, I hope it will be one free of seizures. I’m 52 years young and plan on attending these meetings and participating in the walks and dinners as long as I can.