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Epilepsy Blog Relay: Katy’s experience with Myoclonic Epilepsy

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.


»Related: Words resonate: College roommate reconnects over epilepsy


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.

  1. Tara
    | Reply

    You are so brave and strong! Keep it up! You are an inspiration to others suffering!

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