Epilepsy Blog Relay: Katy’s experience with Myoclonic Epilepsy

by Guest Contributor | 1

This post is part of the Epilepsy Blog Relay™.

Katy’s story

I was diagnosed with epilepsy in 2013, at the age of 24. I work in New York City and went out at lunchtime – and had a seizure on the sidewalk. Some good Samaritan (I still don’t know who it was) called the ambulance and notified my job.

I have juvenile myoclonic epilepsy and experience tonic clonic seizures. I have had myoclonic jerks my whole life and never suspected anything, but my neurologist said I get them more than the average person.

Unfortunately, I don’t experience an aura, but people around me can sense something is off. My husband can spot it so easily.

Courage amidst uncertainty

In August 2013, my parents found me on the dining room floor. After my diagnosis, I managed to last two years seizure-free and finally began to drive again.

Then, I had another seizure October 2016. I also had a seizure a month before my wedding after getting out of driving my car. In NYC, the epilepsy driving law is you must be a year seizure-free. In the beginning, this was so frustrating. Now, I have no desire to drive. Luckily, I work in NYC and can rely on mass transit.

One benefit to that episode was I finally decided to speak out about my epilepsy. Last year (with the help of my amazing sister) I planned a “Seize the Night” Zumbathon at our gym and raised over $2,700 dollars. The proceeds of this fundraiser were donated to the Epilepsy Foundation. Thank you to everyone who participated!

I then went eleven months seizure-free free until May 2019. Since then I’ve had two stays in the Neuro ICU within four months. Wish me luck!

NEXT UP: Be sure to check out the next post tomorrow at https://livingwellwithepilepsy.com.