This personal story submitted by Rich who has lived with psychomotor seizures for 60 years. I hope you enjoy getting to know Rich’s story and benefit from his experience as much as I have.
Rich’s Story
I have now had psychomotor seizures (along with a few grand mal) for 60 years. They started when I was in the 3rd grade. When I was two years old I fell from a second story window onto the concrete sidewalk below. I could have very easily died then. Instead I have lived to the age of 69 with the problem of epilepsy.
Life so far
Since then I’ve graduated from high school, college and graduate school. I’ve been married for 40+ yrs., and I was a university librarian for 30 years before I retired.
I had a pretty normal childhood. Fishing, camping, basketball, Boy Scouts – normal kinds of stuff. I even traveled through Europe by myself. After college I traveled through Europe on my own. At age 16, however, I was not allowed to get a driver’s license. Bummer of bummers! I have never driven, and that continues to be a big irritation and inconvenience. My wife, Betty, will take me anywhere I need to go. We generally have a pretty full life.
More than 50 years of seizures
I now have about 5 seizures per month. I remember that when I was a child, doctors and my parents kept telling me that I’d “grow out of them”, but that never happened. I’ve taken countless thousands of pills, still the seizures persist. My VNS has been the biggest deterrent to the seizures, although they persist. I’ve never found anyone else who has had seizures for 50 years or more. I’d like to know if there is somebody besides myself out there who has.
Steve
Hi Rich,
I want you to know you’re not the only one. I can’t say 50 years quite yet but, it has been at least 35 and I’m still working. I grew up in Toronto and of course I played hockey. I was lucky as either my seizures were very minor and people simply didn’t know what was happening or I may have not even had one yet.
I went down to the U.S. on a hockey scholarship, so things were going fine. But, that’s when it became obvious. At the end of my first year, exams done, it was time to go out and have fun that night. Looking forward to going out, the only thing I remember is waking up in the hospital. I had a grand mal but I am very fortunate my best friend was in pre-med and had great self control. Comments were made you can have one seizure in your life but it doesn’t mean you suffer from epilepsy. I did great for several years after, then engaged and sitting at my fiance’s parents house it happened again. May be crazy but, that’s when I found out my mother-in-law was epileptic too.
I’ve changed meds. for many years as some didn’t work at all while others would only last for a while then another seizure. My body seems to build up a resistance over time. I’ve been on Lamotrigine for 5 years now and it seems to be working very well as partial seizures seem to only occur 3-4 times per year now, at least that I’m aware of. I took a lot of tests and they found damage on the left side of my brain, my memory area. I no longer drive and for that matter don’t want to given several scary experiences. That’s my real frustration with suffering from epilepsy. Like you, I am thankful I’ve been blessed with a great wife for over 25 years who now does all the driving.
I’m going to keep on working for as long as I can as it’s talking with my friends at work that keeps me going strong. I also ride my bike to work using back roads so I can enjoy my freedom to some degree. Thanks for your story as it makes me happy to hear I’ve got many years of fun still ahead of me. I just hope with time people learn more and more about epilepsy.
Shan
My name is Shan. I am 53 years old. I live in Malaysia and currently running a small school in the suburbs. I suffer from frequent petit mal seizures for the past 30+ years. I’m still on medication despite the constant attcks. I’m married with a wife & 3 sons who are willing to accept the setbacks and give me constant support to overcome this disability. Through the years , I have ventured into other forms of treatment such as meditation etc. and it has \helped in some way or the other to avoid seizures . whenever i feel an aura, i try to settle down to regain control of my mind and thoughts to calm down the nerve system. I’m still wondering whether i’m actually suppressing the electical discharge by avoiding the seizure and whether it will affect me in the long run.