“Beyond The Seizures: Living With Epilepsy”
My name is Shawn and I’m 48 years old. I’ve been living with epilepsy my whole life. It wasn’t until I was 14 that they diagnosed me, but I know I was dealing with it long before that. This is my first blog and the reason i’m doing it is I feel I can make a real difference in someone’s life by answering a lot of questions they may have about their epilepsy that they may be totally in the dark about. Doctors try to explain it to you, but the only ones who can really make any sense of it is someone that has had it themselves. If that someone is you and are interested in learning more, read through my blog and you can see what I have been through in my life living with epilepsy.
- Shawn Stacy
A New Life
I will start this blog by saying that living with epilepsy was not easy. When I was first diagnosed at the age of 14, I had learned then from doctors that I would be on medication for the rest of my life with the possibility of needing surgery. After learning all these things that were about to be changing, I began wondering..What was next? Will I ever be able to work?, will I ever be able to drive? What will others say? Will I still be able to live a full life? Learning you have epilepsy is a very hard thing to learn, especially at such a young age.
During the 1990’s there were not as many treatments as there are today. Then, they didn’t have all the social networks we have to learn things about these days either. Fortunately, I found a medication that worked right away. Starting this medication stopped my seizures from occurring, but brought other things to this new chapter in my life.
Some of these new things that were happening were mood changes, anxiety, depression and just seeing things in life from a totally different perspective. I was always told when I was younger how kind I was and loved being around others, but things changed as soon as being placed on these seizure controlled medications.
Throughout my teenage years growing up, i found that things were not as bad as I thought they were thought to be in the beginning. I finished high school, found work, had my license as well as friends. People said i could be a real jerk sometimes, but they understood why never holding it against me much.
Moving on into my adult years was actually pretty good. Working, having friends to hang out with at parties driving everywhere. The only problem was not being able to drink at parties, still fun though.
In the year 2007 I found things to begin a change for the worst. My seizures started again and was having them happen every few days apart from each other. Thankfully my seizures only show up at night when I was sleeping, didn’t matter though. No matter what time it may have been these seizures showed up, you were left with a splitting headache. This was no way to live though, I needed to seek help.
After all these seizures began again, I found it hard finding the right neurologist to give me help. i had probably been through a dozen before finally finding one. Doctors had told me the medication (Dilantin} was not going to work anymore, They said my body had become immune to Dilantin and we needed to find a new one.
We tried many and just were not having much luck. There were some nights I was having in upward to 10 gran mals a night until one night my wife who was really my girlfriend at the time had to call an ambulance and take me to the hospital There was when I had found my new neurologist. They had put me on a medication that took care of the gran mal seizures I was having, but now led to something totally new.
What had happen now was I started having what they call focal seizures..something totally new. What these would cause ( only at night still) but when I was awake, was something that till this day can not explain well. When these episodes occur I lose awareness, comprehension, you are in a total state of confusion. Anxiety skyrockets and you become worried about what is going to happen next.
For fifteen years now I have been living with these focal seizures which sometimes I almost wish they were gran mal’s again.
This is only a brief summary of what I’ve been through with epilepsy. If you have any questions about anything don’t hesitate to reach out in the links provided in this website.
Please check back sometime, this is only my first post on my blog. I’ll be doing a lot more!
Shawn Stacy
