Treating My Epilepsy: Taking Advantage of Clinical Trials
It starts with a bad headache and a wave of nausea. I feel like I’m going to throw up, but never actually do. If someone is around me, I’ll ask them to say or do something to distract me. Sometimes, it works. Other times, it doesn’t, and I lose all awareness of what’s going on around me and I’m having a seizure.
My seizures aren’t the full-body convulsions you see in movies. I usually go silent, and stare off into space for a few seconds. Other times, I’ll be talking, but what I’m saying doesn’t make any sense. I basically lose consciousness for the duration of the seizure, though to those around me, I seem wide awake. After 30 to 60 seconds, it’s over.
My seizures started in high school. And after being monitored in the hospital for several days with an electroencephalogram (EEG)--a machine that records brain waves--my doctors confirmed I had epilepsy. According to my doctors, my seizures were caused by an area of gray matter on one side of my brain, and the first treatment I tried for controlling my seizures was antiepileptic seizure medication.
But after trying four or five different medications, I was still having at least one seizure every other week. In Ohio, you have to be seizure-free for at least six months before you’re able to drive, so I couldn’t drive at the time. I really didn’t have much of a life, and I felt like I had to have someone with me everywhere I went just in case. The seizures have unfortunately taken a toll on my short term memory, too. You could tell me a three-digit number and five minutes later I won’t remember it.
My doctors suggested removing the gray matter in my brain through surgery, but because of its location, there was a risk I’d lose my peripheral vision and not be able to drive ever again, so I decided against it.
But I’ve finally found something that works for me, and I’m happy to report I’ve been seizure-free for five years.
In 2010, I decided to enroll in a clinical trial at Cleveland Clinic for a device called the NeuroPace, which is essentially a stimulator implanted underneath the scalp. The device is about the size of a credit card, and is meant to interrupt abnormal brain activity before it can cause a seizure. The device was approved by the Food and Drug Administration (FDA) at the end of 2013.
When I received the implant, they shaved my head completely and I stayed in the hospital for two weeks so they could test the device. Still, it was a pretty painless procedure and quick recovery time.
About once a day, I hold a wand up to my head right on top of the stimulator, and then send all the information to the doctors, so they can determine what’s happening. They also monitored the stimulator’s battery life, which is a good thing, because it needed to be replaced in 2012.
But the device is definitely doing its job. Now, the battery will last for five years instead of three because it does not have to work as hard to control my seizures. I’m able to drive again, I work, and I don’t have to worry as much about having someone around me at all times in case of a seizure.
Of course, the worry will always be there. My greatest fear is that I’ll have another seizure and have to start treatment from scratch. But I try to stay positive. My best advice to others diagnosed with epilepsy is to find a support group full of people who know what you’re going through.
Be patient; you will find the treatment that works for you and be able to live a normal life.