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My chronic seizures stopped in 1997

Fri, 04/20/2007 - 11:50
My story of being diagnosed with Epilepsy and all of the testing and drugs that I was on for 9 years is a long one. My neurologist said I would be on Tegratol for the rest of my life. And even while I was on it, I occasionally would get minor seizures. When I tell people what I believe was the cause, they always are skeptical. My health problems started about 6 years before my first seizure. I had severe stomach aches that were diagnosed as eosinophil gastroenteritis. When I had the elevated eosinophil cell count (.8 or above) I would have severe stomach problems. Steroids brought it under control. I lived with the condition for years. Then I started having mild seizures and would get disoriented. I did not know for about a year what was happening until I woke up in the middle of the night being loaded into an ambulance - I had a grand mal seizure and my wife called 911. For years I tried changing things in my diet and behavior. I focused on removing all chemicals from my diet, including things like not using plastic wrap over food being heated in a microwave oven. I stopped getting chemicals on my skin like cleaning products. And lastly, I saw that head and shoulders shampoo is a concoction of chemicals so I stopped using that. The bouts with gastroenteritis only happened about once every 2 or 3 months so it took about 6 to 9 months before I started thinking I might have things under control. The seizures were already pretty much under control from the tegratol and I never thought the two were related. I stopped having symptoms for both disorders for about 18 months and happened to move to San Diego in 1996. I got a neurologist in SD and went through all the testing again. He was an older doctor and told me that in all his years of practice, he has only taken a few patients off of medication. In 1997 I gradually went off the tegratol and have never had any symptoms since. Three years ago, I stupidly used the head and shoulders shampoo because it was in the shower and I was out of shampoo. Two days later, I had severe gastro event that lasted several days. I know for sure that the head and shoulders causes my eosinophil gastroenteritis problem. I can't be sure it caused my seizure disorder. But I'm not going to test it find out. I know that seizures are caused by a lot of things. My neurologist went down the list with me. He also said there is a lot that is unknown. I'm sure that there are very few people that my story will help. But I thought I would share it anyway. Larry Greenstein

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