Trying to survive
I’ve had epilepsy since I was 5 years old.
I was on tegretol up until I was 10 years old then taken off of it because I wasn’t showing any signs of seizures. I was seizure free until I was 13 and they were slowly coming back but weren’t nothing to bad.
As time went on
As time went on and as I got older they were starting to get worse or more noticeable, I would go into stares then come out of them, then continue what I would be doing, but it was affecting my train of thought, I was an honor roll student and my grades were slowly dropping from straight As to Bs and Cs.
The teachers I had in school thought it was stress or something else and started sending me a psychiatrist and after the first couple of visits they said I needed to be in the ward so they could monitor me, so I was admitted into the ward for 3 months, and the whole time I was there they never even knew I was having them because they didn’t know what a seizure was, I was having them the whole time I was there. My parents finally pulled me out.
From absence seizures to tonic-clonic seizures
As I was still growing older they were getting worse and went from petite mal seizures to grand mal seizures and I was having 20-30 seizures a day.
While I was in my Junior and Senior year of high school were the worst times of them I could be feeling good when I got up in the morning and go to school and be at school for just a couple of hours and then all of a sudden start having them, I would then wake up several hours later at home wondering where I was and how I got home. I would go to school the next day and have to backtrack to find all my stuff.
During the beginning of my senior year I had permission to go to the restroom due to my bladder problems I had with my seizures but if I wasn’t back in class at a certain time the teachers would get the principal and they would get people and look for me, I was found in other class rooms, locker rooms, and the very last time they found me I was between 2 cars where I had busted my head on a parking stump and was taken to the hospital. I was then put on home bound rest of the first semester of my senior year.
Trying to figure out my seizures
I was able to go back to school the week of semester exams. But because of the work I did while home bound, I didn’t take one exam. While I was home bound I was also put on different seizure medications as well, but nothing was calming them down.
After I finally graduated, I was then being sent to the children’s hospital in Little Rock, Arkansas where they were doing everything they could think of to find where my seizures were coming from. The EEG wasn’t showing anything but the doctors knew I was having them because they had proof through videos. They took my case all the way to Canada because they had never seen a case like mine.
Another doctors was brought in and they put in what was depth electrodes and I had 6 of them put into my head, and the day after they put them in I started having massive seizures, and they were able to find out where my seizures were coming from. They were coming from both sides of my brain, but my left temporal lobe was the worst side that was damaged from having seizures as long as I had them, so a month later I had brain surgery.
After that I was put on certain medications and was monitored for another year, and was put into a rehab as well.
Being seizure-free for 6 years
After time went on I was seizure free from 1992-1998 and I started noticing I was losing my mobility on the right side of my body, but I didn’t pay any mind to it, I just thought I was tripping over my own feet.
I had a full time job and I didn’t want to lose it, but one day I was at work and I was running errands for my boss, and was at the grocery store across the street from where I worked at and I was cashing out and got past the register and my right leg gave completely out and I couldn’t get up, luckily the ambulance crew was there, they were able to help me up and get me back across the high way and into the building where I worked, and I told my boss what happened and she called my mom. My mom came home and I was taken to the doctors and come to find out I was having seizures again and I have a bleed of the brain now from scar tissue building up from my surgery I had in 1992.
I have been to so many doctors, and been put on so many medications and nothing has even helped now. I’ve even been told by a doctors I was faking them. I’ve got proof from where I work at now that I’m not faking them. I’ve had 3 doctors tell me there are no new medications out to help with calming my seizures down. I was feeling very desperate.
New doctors and my seizure diary
I had to find another doctors last year and this is the first doctors I’ve actually been able to talk to and he actually talks to you face to face and doesn’t sit at a computer.
I told him about not having any kinds of tests done, and he was very upset about that, he told me there are new medications out and didn’t understand why I wasn’t tried on them, and also was wondering why I was on an antidepressant pill that wasn’t helping with my seizures and took me off of it immediately.
I keep a diary of when I have my spells now and what I can remember or ask anyone who seen me have them what happened or what knocked me into the spell that day so I can write it in my book to let the doctor know.
My seizures have been very bad lately
The last two weeks I’ve been hit with them really hard and I don’t know what is setting them off, I would go to work Monday and by the time I would get off I was drained, and usually I’m not like that, and when I would get up Tuesday and get ready for work I was incoherent and when I would catch my bus, I would sleep all the way to work, when I usually don’t sleep except maybe 20 minutes after I get on. But after I would get to work and inside I would start having them and the next thing I knew I would be sitting in the first aid room looking at one of my supervisors or my head boss, they would tell me I was completely out of it when I got off the bus.
Feeling unsure, but keeping hope
I don’t know what has set these spells off, unless it has been the heat the last few weeks where it’s been reaching over 100 degrees in temperatures and the heat index is hitting over 110 degrees, because before I was feeling fine. And loud sudden sound are very sensitive to me, as well as strong odors.
I have a bunch of questions and some information I looked up on the internet I want to talk to my doctors about. I never thought my spells would ever get like this again, but they’ve gotten to where I’m afraid to go to work anymore, even if I do work at a place for people who have disabilities. My seizures scare me very much.
Have you utilized an epilepsy center?