SHAKE THAT SEIZURE: HOME > CONTACT

About Me:

My name is John Coyle and I am an epileptic. My first seizure was on December 20, 1992. I have been having seizures ever since and have become somewhat fascinated with epilepsy. When I was about 9 years old, I had an injury to my head from playing baseball without a helmet. But hey, we were kids and just playing. But back then, there were no MRI machines, no PET scans, and it was rare to order a CT, especially in a smaller town. Plus, I only had a concussion and merely needed a butterfly bandaid to patch it up. Kids bounce back pretty quickly.

Almost 10 years later I had that first gran mal seizure. Turns out there was a tumor in my left frontal lobe. We didn't know that it was even possibly related to the baseball injury a decade prior. We just knew that it had to come out. Three surgeries later and a bit less grey matter and we were done. I am very blessed to be alive. Yet the seizures remain. Due to the nature of how I developed a seizure disorder, the drugs haven't seemed to work well. Mine is based on a TBI (Traumatic Brain Injury) and I still have uncontrolled seizures. Then in 2005 my brain tumor returned once more. I now experience seizures based primarily on the tumor which I have chosen not to have treated until newer advancements in medicine and surgery are established. Do I personally think the weather affects my seizure disorder? Yes and No. The importance of sharing this though is so that you can realize that from a personal vantage point, we may have much in common.

With regards to specifically barometric pressure, it dawned on me one day a long time ago. When on a flight and decending, you know how your ears start to hurt and you can yawn or "pop" them - maybe with chewing gum - to relieve that built up pressure? Well your nose and ears are connected via an air passage on both sides of you face which allow this to be successful. However what about the brain? For those of us with tumors or scar tissue that may be causing our seizures and migraines, we have brains containing matters of various density. When pressure changes in the brain how does it get "balanced"? It doesn't. At least not slowly. Unless you have a shunt, the only exit is a slow ride via spinal fluid down your back. It isn't nearly fast enough and the end result might just be swelling of the brain resulting in a potential seizure. And once a person has had 2 or more seizures, they are forever deemed Epileptic. So now you know where this idea came from and why I am involved.

So please know when you visit this website, that you are coming to a place and a face that knows a bit of what you are going through. Again, my name is John Coyle and I have a MySpace page regarding more personal information if interested: http://www.myspace.com/stsepilepsy

-John Coyle

Please send your info or questions to: jcoyle@stsepilepsy.org or if you wish to call or leave a fax, use the following number: (501) 644-3898. At the prompt press 1 to leave a message or press 2 to leave a fax. You can also simply fax to that number and the prompt will be automatically bypassed.

Know that if you wish to post messages on the forum for Shake That Seizure, you will need to either subscribe using the button on the right side of each page or send an email to me. We are trying to keep spam out of the Epilepsy Google Group.

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