Susan’s Story

It started around the age of 34 as far as I can recollect.

I started having trouble remembering things – annoying but no big deal. Then I noticed I could not get words out. I would be in the middle of a story talking to someone then totally forget what I was leading up to.

I was having trouble at work as the manager of a computer department. I was getting behind in my work and taking a lot longer doing the things I had been doing routinely for years.

I would get lost driving to places I had been a million times before. This was before affordable GPS systems (they have been a godsend). I started keeping a notebook with addresses and directions. The notebook got very large.

I would be watching TV and not know what was going on or what people were saying.

I came out of a grocery store. When the automatic doors opened, I did not know where my car was. Then I realized I wasn’t sure I had a car. I sat on the curb terrified. I had no idea where I was.

I thought I had Alzheimer’s. I knew I had to do something. I was recently married and only in my mid 30’s. I thought, I can’t put him through this. I will kill myself. But, I called my doctor to ask him if there was a test for Alzheimer’s. He said, “Yes, an autopsy. Would you like one?” We knew each other well.

He said, “Don’t worry about something like that. Let’s run some tests.”

Remember, this was a long time ago. I am 64 now. My doctor sent me for a sleep deprivation test, though they forgot to tell me not to drive myself after being up all night. It took me 2 hours to get to the hospital, because I couldn’t find it.

My doctor called the next day and told me I had epilepsy. He said I seized through the entire test. I don’t have grand mal seizures and I didn’t know about my kind of seizures. They wipe out memories, language skills and directions, and sometimes thinking.

Took me almost a full year to get used to the medication.

I think my epilepsy may be related to past problems with drugs and alcohol. I have been clean and sober for 32 years. My doctor said that may be the cause, but he said he is not sure and not to worry about it.

My only regret is I never told anyone. I suffered in silence. I could of gotten help sooner. I cried when I was told I had epilepsy. I was ashamed for some reason. The fear was suffocating.

I have been so good for almost 10 years now as long as I make sure I get rest and keep the stress down. I changed my job, and have been an antique dealer for 30 years now. I am happy.


    Join our email list for the
    latest epilepsy research news,
    discoveries, and more.