Saturday, November 6, 2010

Travel Concerns

Just got back from a business trip. I always seem to dread those lately as I seem to suffer at times from some anxiety. Typically it will hit me on the airplane or in the hotel room at night. I am sure some of that is just from past history.

This particular trip had me speaking in a room full of techy people. I thought my heart would jump out of my chest, I would pass out, or have a seizure. Sometimes my auras or seizures cause anxiety so when I am nervous about something else then it gives the illusion that I may also be starting to have a seizure, when in reality I am probably just entering panick mode. Either way, it's not pleasant!

I met many people today that have children with Epilepsy. I still to this day have a hard time listening to the stories told by parents of children with Epilepsy. It also makes me wonder how my own mother tells my story to others. Since I was so much older when I started having seizures I do not think that her thoughts or feelings are quite the same as the parents who have young children suffering from epilepsy. But now that I am a mother myself, I know that your children will always be your children as my mom always says, even when they are adults. Either way, it is a painful experience to watch a child suffer and to not really have any control over the situation.

Most of the people that come to the support group here locally are adults with seizures, so I do not meet as many parents with younger children who have seizures. It's a big eye opener and a reminder of how precious little ones are and how fragile the situation can be.

I am also meeting more and more people who have had brain surgery. It seems that that is turning out to be a pretty significant solution for some people with seizures. A friend of mine who in earlier years was a possible surgical candidate held off on any type of radical treatment so that he could raise his family and ensure that he was around for them. Now that his children are older he decided to "take the plunge" so to speak, and he had brain surgery a year ago. He has only had once seizure since surgery.

I met another younger girl today who had surgery as well, back in January I believe she said. She has had no seizures since surgery.

Another parent had a young child who had the connection between the two hemispheres removed and that seemed to help with her seizure frequency.

I think the thought of some type of brain surgery is daunting, but should be explored by anyone who is a potential surgical candidate. I think everyone owes it to themself to look into that if it can improve the quality of their life. I see too many people, especially adults, who have become "satisfied" with their seizure control when in reality they don't have "seizure control". Their seizures are out of control, unpredictable, yet they're too scared to make changes to medication or explore other options. I say, "what kind of a life is that?"... always living on the edge, never knowing when the next one is going to hit. Wouldn't it be better to strive to be 100% seizure free if you have the opportunity to do so? Read more!