Feeling Alone and Lost

My epilepsy journey

I’m 50 years old and was randomly diagnosed with epilepsy 12 years ago, out of nowhere. The first sign for me was that I would spit for no reason and couldn’t control it. The doctors knew immediately what was going on, and from there, I started having over 30 seizures a day. I experienced various types, from grand mal to complex partial. It was very odd.

Treatment and challenges

I had a VNS (vagal nerve stimulator) put in, and it helped for a while. I take a lot of medications, including 4,000 mg of Keppra daily, along with others. A few years ago, I also had an RNS (responsive neurostimulation) brain implant put in. It helped for about a year; when I say “helped,” it brought my seizures down to a couple of weeks. That was great! But now, I’m back to having them multiple times a week, and no one seems to understand.

Feeling isolated

I have no friends, and I can’t work. I’ve always been used to working. My kids don’t want to be around me because it weirds them out. Their mom has had to go out in an ambulance so many times.

What I can’t understand, and what makes me angry, is that I can’t draw disability. I’ve tried to work, but I have seizures every time. And, of course, I can’t drive. What do they want me to do? My husband is wonderful, but he doesn’t fully understand. As much as he wants to and says he does, he could never truly grasp what I go through.

Seeking connection

I would love to meet someone else with epilepsy who lives in Lexington or Richmond, KY, so we could possibly form our own support group. My doctors are at UK Hospital. If anyone reads this and is familiar, please let me know. I would love to talk.