The Frustration Of Epilepsy…

The Frustration Of Epilepsy…

Do you know what Epilepsy is? I thought I had an idea. I assumed people were born with it. They fell down to the ground, had a seizure and then they got up and went back to things after it was done. I remember a girl in high school having a seizure. I did not see it happen, but I heard about it and saw her later. She seemed fine and that was it. It never really dawned on me what a horrible disease it is.

I did not have my first seizure until I was forty-four years old. It was all related to the AVM(Arteriovenous Malformation) that I had in my brain. After the craniotomy to remove the AVM, I thought the seizures should have stopped. Mine did not, the seizures have continued. I am now on two anti-seizure medications and I was so happy because I finally went six months seizure free over this two year ordeal. That meant I could drive again. In the last two years, I have driven for about six months of that time. During those six months I really should not have been driving for about four of those months. At the time though, I just really did not get it. I was being unsafe and no one gave me that information. I went almost a full year and finally hit my six months seizure free mark and I started driving almost a month ago. It meant everything to me to have that freedom again.

I have mentioned that I live in a very rural area, this means no public transportation. I live twenty miles away from my job. My son lives in a small town six miles from my town. Even my close family live in another town twelve miles away from me. So, the need to go anywhere requires a ride. The fact that I was able to get in my car and drive to work was amazing. My son invited me over to his apartment for supper and I was able to go, by myself. I have had three amazing weeks. Maybe things were going too well and someone decided I needed to be put back in my place. I will still never understand what I have done wrong in my life, but I probably had a minor seizure at work this week.

I left a message with my neurologist, who is three hours away from me. I had not heard back for a few days until I received a message from his nurse. He was out of the office for the week, but my message was forwarded to another neurologist. Their response was that their concern was it sounded like I may have had a seizure. Their advice was to up the dosage on one of my anti-seizure medications and of course, do not drive until I am six months seizure free. I was in tears. I could not do that again. I think my mind was not in the right place. I called my son. Probably not the smartest thing to do because most of the things coming out of my mouth sounded like I was ready to end things. Maybe that was why I called him. I knew he would help me calm down. I do not want to end, it just felt pointless. I just want to be more like who I used to be.

I took his advice and sent a message back to the nurse. I would prefer to talk to my neurologist when he got back. I am sure he will tell me the same advice, but at least I will hear it from someone that knows my history. I want to ask questions and make the decision with someone that I feel wants to help me rather than just throw more medication my way and hope it sticks. Did I really have a seizure this time? I do not know and that was my reason for contacting my neurologist after it happened. My AVM was on the left side of my head, so I had my brain surgery on that side. My sinuses are flaring up on that side. I have a couple bad teeth that I am trying to have worked on, also on the left side of my head. The odd sensation I was having was on that side of my head. Am I in denial about a seizure? Maybe, but I want to know before I just go the route of more medication and stop driving again.

Epilepsy for me is so frustrating. It happened so late in my life that I never even gave it a thought. It was something that was never really explained, until I asked. I always want to know what is wrong with me, but I should not have to ask. That information should be given. Doctors deal with a lot on a daily basis so I am sure they assume patients understand what is going on with their bodies, but they should be able to offer information or support groups. The word Epilepsy never came up until I asked them what to call my seizures. Am I just that dumb, I never thought I was. I am tired of the fear of having yet another seizure. I am tired of waiting six months to have a life and then have it taken away, yet again. I want to know more about Epilepsy so I can figure out how to live again.

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