Would anyone like to share something about their epilepsy?

Re: Would anyone like to share something about their epilepsy?

Submitted by just_joe on Wed, 2013-10-30 - 11:33

The first seizure I was aware of was a grand mal seizure. It started with me being carried into the nurses office in jr high. I found out thru friends and the coaches that while on the basketball court before class one day That I had climed onto 2 benches stacked on top of each other. I pulled the jacked over my head. I pulled my arms into my jacket stood on top of the benches and fell face first onto the asphalt. I went into a convulsion. I came to or woke up while being carried by 4 varsite foot ball players 2 coaches one at my feet one near my head into the nurses office. I said Hi to them and was out again. I woke up that afternoon about 1:30 my motjer had been called and a doctors appointment had been made. We went to the doctors office and I was tested and EEG was done. During the EEG there were no abnormalities. Answering the doctors questions did give him insite. I was put on phenobarb and dilantin. Now understand that that was back in the early 60's so there was no web or other ways for average people to gather information regarding seizures. The doctor who became my PCP and I saw him monthly. In his questions there was have you ever felt different than you normally did. Any wierd feelings anywhere regarding anything.

I had had some wierd feelings in my head from time to time. I had been written up many times for day dreaming and yet my test and quize scores were amont the highest in the class. I had some funny feelings in my right hand. There were times my right hand would start moving without me wanting it to move.

The day dreaming was basically absence seizures. The wierd thing happening with my right hand were what today would be complex partial focal seizures. Other feeling in my head were auras.

It was over a year later and many diffferent seizures that I was put in the hospital to determine what was causing the seizures especially since all the EEG's had shown no abnormalities. I was prepared to have a wonderful spring break but I was not aware until spring break was going to be in the hospital. I was 13 and kids don't think about testing and visits to doctors offices. The tests back then were not like the tests today. There were no MRI's or CT scans. During the hospital stay they ran tests more EEG's some others which can not name. on the 3rd or 4th day they ran a angeogram which has been replaced with MRI's. I do know that during that they also did a spinal tap. What they did do was pump air into my head and took x-rays. I know I would not recomend letting them do that to my worst enemy. after it I woke up laying on my back. You see they cn pump air into your head but the air has to escape on it's own. thru the ears, nose, eye sockets and mouth and that takes time.It is recommended that a person lay flat on their backs for at least 1 day but the bed is raised a little over the next few days. I came too in that bed when the nusre was coming in and the door opening was louder than I wanted to hear it. Her foot steps were like gernades going off. A nurse walks quietly but a nun alks even quieter and back then the nurses were nus in a catholic hospital. the air in your head magnifies the noise. All the testing that was done wears you out and since I was miles away from home My family was there only a couple of times and that was for about an hour. It was during the last EEG that they found an abnormality. The reason they found it was I fell asleep during the test. In that EEG they located the abnormality and where it was comming from.Using that information they returned to the angeogram and looked closer at that area of my brain. Which is when they found the problem. what they found was scared brain tissue on the left side of my brain. Back then the doctors said it was before or after birth. In the doctors office on the day I was released the doctor gave the information to  my mother. I asked many questions but I didn't get answere directed at me. He gave my mother the information. So I knew I had epilepsy but I was not told what epilepsy was. In the doctors report It said I had Grand Mal, Pettit Mal and Focol Motor epilepsy. Back then there were names for the different epilepsies. After neurologists started specializing the seizures were put in types.

That was the start but it isn't over. I have been living and dealing with epilepsy and seixures since then and it has been 50+ years. The seizures have lessened in their intensity. The Ofcal motor seizures have stopped going into convulsions but they can atill do that if not watched carefully or treated with medications. All the young people (30 or younger) who are diagnosed with epilepsy have no idea that they are lucky to have the technology they have today. They have no idea what we went thru considering the medications today are being created to work on certain types of seizures which does not drug your body and brain down. They have no idea of how to deal with medications we took and the amount of medications that were basically downers. My new neurologist in the early 1980's aske me how I woke up in the morning considering was taking enough phenobarb to put a man to sleep for 24 hours. Now couple that with dilantin and tegratol. Once I was up I did not lay down until the day was over. I crashed in the car while going to and from work or where ever we were going.

This was the start and that start was in 1962-63