Saturday, September 18, 2010
In 1999 I was up at BYU-Idaho when one day during lunch I had a grand mal seizure. Bless the heart of my wonderful roommate, she didn't freak out too much, as I'm sure it was a scary site to see.
I was taken to the local hospital and doctors thought that I had a brain tumor. Most people don't have grand mal seizures at the age of 19 for no reason. After an MRI it was discovered that I have a brain lesion that extends through the temporal, parietal, and occipital lobe of the right side of my brain. Basically when my brain was forming, it didn't "close" all the way, and left a lesion. Doctors were stunned it took so long for me to have a seizure since it was inevitable. So, I wasn't dying from a brain tumor, but I would be on anti-seizure medication and I would have to deal with seizures the rest of my life....oh fun.
I wasn't diagnosed with epilepsy, and thankfully my seizures were usually not grand mal; the type that leave you unconscious and thrashing around. I was aware when my seizures were coming, having an "aura", or being able to sense when they were coming.
In 2002 my situation looked pretty bad. I was having seizures all of the time, making it not only difficult to complete college, but making it difficult for me to even want to leave the house by myself. When I had a seizure I would just sort of "zone out". You could be having a conversation with me and I would look normal, but I wouldn't answer you and I'd have no idea what had been going on until I "snapped out of it". I would wander off and no one would know where I was. I'd "snap out" of my seizure wondering how the heck I got wherever I was! Needless to say, my driver's license was taken away, a blow that was so difficult to deal with at the time....that was my independence.
My mother found a wonderful neurologist who told us about a Vagus Nerver Stimulator. Basically it's a pacemaker for my brain, that sends off electric "shocks" every few minutes to my brain. It's one of the most phenonmenal devices I've ever heard of, and to try and describe all it does would be difficult. For more information, see the link here . This was sort of a "last hope" before my doctor decided to put me on disability for the rest of my life. I DID NOT WANT this at all, so I had the surgery.
During the next few years I felt like I was digressing back into childhood. I wasn't able to do things for myself, needing a ride everywhere I went. For a woman who was 22-25 years old, that was embarrassing. The VNS device helped a lot, but in no way did it solve my medical problems. I had to be at least 6 months seizure free before I could get my license back...it took a LONG time to earn that baby back, but I finally did a few years ago. Even after once again having my license, I was terrified to drive for quite some time.
2007 was a very hard year for my seizures, which were basically out of control. My medication wasn't working, as it needs to be changed every few years since your body adapts to it, and stress was bringing on more seizures than ever. My mom (have I mentioned that she's been my medical Savior?!?) was able to get me referred to UCSF and to the most wonderful doctor on the planet. She perscribed a new medication for me and in December of this year it will be THREE YEARS since I've had a seizure!!
This is the first time in 11 years that I feel completely in control of my health. I don't fear seizures, or driving, or going to work. I'm very aware that at any time my body could start having the seizures again, and I know that they will never go away, but for now, I can at least breathe a little easier.