Richard’s Story

By February 9, 2016Stories, Written Stories

Hi, my name is Richard Lopez, I have epilepsy and I’ve had epilepsy since I was 13, which makes it 29 years. I got the RNS implanted on June 11th, 2015.

I’ve been through what I call “the medication merry-go-round”. Everything they’d give me would work for a little bit and then the seizures would start again.

Some of us are on so much medication that the pharmacists sometimes question, “hey, why are we dispensing this much?” I’d tell them, “hey, it’s what I need to at least calm my seizures down. It hasn’t stopped them but it’ll calm them down a little.”

I went through surgery to remove my seizure focus and I was seizure free for about two years, but my brain found its way around it and the seizures started coming around again.

I had mostly Grand Mal seizures. I’d hear a ring in the ear and that would let me know something was about to go away. Speech completely goes away because my focal point is where my motor skills are. Basically I have a nickname for it, I call it “my silent friend” because it just comes on—he just visits whenever. Right now, I’m not missing him. Not missing him at all. But it always put me in panic mode because I knew a seizure was coming on, so my heart would start racing and everything would go on alert. Sometimes I could feel my face and my muscles pulling when still awake and then I’d knock out afterwards.

I think the fear of a looming seizure was one of the major things that got me the most uncomfortable. I mean when I’m knocked out, I don’t know what’s going on. But the fear of when a seizure is going to come on would also have me questioning, “am I going to be in danger?”

There’s been times when I’ve been picked up off of the train tracks, waiting for a train and landing on the tracks to have somebody call 9-1-1. My wife has even been forced to stop on the freeway a few times because I’d have one in the car. It was just to a point where I wanted to do anything to get rid of the seizures.

When you have epilepsy, everyone kind of looks at you different when they know you have it. If they don’t know you have epilepsy, they can’t tell.

When I’m at work, if I stand up too fast, they think something’s going to happen. If I travel home alone on public transportation, everyone’s worried about me—they call me, and ask where I am if I’m 5 or 10 minutes late, you know?

I spoke with a few doctors who knew of something called the RNS System, so I started learning about it. It was different than the VNS the doctors offered me. I talk all day at my job, so I wanted something that wouldn’t potentially tickle my throat or mess with my ability to talk normally. I mean, it would’ve just messed with me working—doing what I’m normally doing. When the RNS System was finally available, I was already pretty much convinced that it was the alternative treatment I wanted to go with.

Now that I have the RNS System, I don’t feel my seizures, that’s the bottom line.

As far as the end-user, I don’t feel anything. My doctors took a look at the data it had recorded and asked what I was doing on a specific day. I was at my desk, plugging away. Apparently I was starting to have a seizure but the RNS System stopped it. At that point I think I sat in the car for a little bit and had a cry because I thought that would have been it, right there. I think that was it.

I’ve always known the seizures were there, doctors have known they were there. But, it’s a lot more relieving knowing that my doctors can now see where it is, when it’s happening, and do something about it rather than go on the medication merry-go-round.

Even with all the medications I was taking, it still wasn’t enough for everyone to just be at ease. But now everybody can kind of take a breath because of the RNS System. I travel, I work, I’m functioning. But the RNS really helps me keep at ease.

When I go places, I either have to take a kid with me or be by myself and this just puts me at ease knowing that I’m able to be there for them instead of them for me.

It’s really lightened everything up. At work everyone is really good to work with. They’ve always dealt with my condition and I know now they can focus on their job, and I can focus on mine.

If I had to say what my life is like now in one word, I would just say “relieving”.

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This represents the experience of individual(s) who have used the RNS System.  Individual results will vary.