Living with Epilepsy/Seizures

I have had seizures since I was in the second grade. They started out with episodes of what my family called, “Blinking.” I have uncontrolled eye movement, my eyes stay closed most of the time and I can’t get them to stay open. It lasts 24 hours and then the next day I only remember bits and pieces of the day before. I am able to carry on conversation during an attack, but I forget what I am talking about alot and have to start over.

When I hit puberty, I began having grandmal seizures. This lasted until my early twenties. The seizures could be brought on by flashing light. I had one on the school bus when I was in the seventh grade. I eventually quit having grandmal seizures and went back to only having the “blinking.”

I have recently moved to a new town and went to the ER for my blinking episodes. It was lasting 4 days instead of the usual 24 hours. I had twitching with it. The doctor told me that he didn’t know what it was I was having, but he knew it was not a seizure. He said people do not talk to you through a seizure Yes I was talking. I had staggered concentration. My husband had to help me with what I was talking about. I told him I had been having these since I was in 2nd grade and I am almost 50 yrs. old. He dismissed me quickly.

I am a retired nurse/paramedic and I could tell by the tone in the staff’s voices, they were just acting out the compasion, but was not going to do a thing for me. They sent me home without giving me any instructions on not to use any electrical equipment, or drive. Just follow up with my family doctor. I felt they thought I was a drug seeker because I was wanting something for the seizures I took extra Dilantin (I know stupid I was just trying to stop the attack). I told them to check my medicine I had with me and they would see I was not drug seeking. They refused to.

I wanted them to. I wanted everything ruled out. If they had looked at my medicines they would have seen that I had forgot to load one of my medicines into my pill box and had not taken it for a week, thus causing an abrupt stop in the medicine, which brought on the seizures. I discovered it when my husband was helping me take my medicine.

People knew me where I lived before and knew my condition, now I feel like I am in a whole new world and I am having to prove once again that I have something wrong with me.

I don’t know what to do. I am so frightened now, and I don’t know what to do. This doctor contacted my neurologist and convinced him I was faking it. I have only seen my neuro. 3 times.

I had a stroke in 2006 which was negative on the ct scan but signs and symptoms lasted well over a week. The neuro. has now decided I did not have a stroke though my other doctors agree taht I did. It has caused me to have short term memory loss and no rapid recall. I am afraid this is going to interfer with my disability. I have no multitasking skills anymore, and I have great anxiety

Any clues as to what to do?