You’re Not Alone in Your Epilepsy Journey

Joe Rodriguez is sharing his eJourney to inspire others who live with epilepsy
By
Joe Rodriguez
Person with Epilepsy
Tuesday, December 21, 2021

My name is Joe Rodriguez, and I am 27 years old. I suffered from seizures very early in childhood. At that time, I thought I was just experiencing Deja vu. As I got older, my Deja vu experiences became uncomfortable and left me feeling depleted afterward. It seemed like I was aware of what was happening, but I wasn’t. It was like I was on autopilot, and I didn’t know that I was experiencing seizures.

In 2014, I used my phone to record what was happening, and I realized I was blacking out during these seizures. I shared my videos with a neurologist who then diagnosed me with epilepsy. After countless tests and after meeting with more doctors, I was told I had focal onset impaired awareness seizures. Medications to manage my condition were ineffective.

Despite how hard it was, I stayed positive and continued to take any test available that might provide answers. Eventually, I visited a hospital in New York City where I got clear answers as to what was going on in my brain. I was told I was a candidate for corrective surgery, and I was finally scheduled for thermal laser ablation in August 2017.

My surgeries seemed scary, but the procedure is minimally invasive, so recovery was easy. My right hippocampus and amygdala were ablated. I am now three years seizure-free. I have been working on an epilepsy memoir using notes and records I compiled during my six-year journey. Writing epilepsy memoirs helped me when I was feeling helpless, so I would love to give hope to at least one person.

Epilepsy can be challenging to live with and understand, but having patience is paramount. Patience will lead you to the right doctors and helpful diagnostic tests. That was one of the most helpful things that I did early on in my journey to seek care.

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Reviewed by: 
Sara Wyen

Our Mission

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

 
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