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kraftart

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Here is a little about me...I've had epilepsy most of my life, I'm 53 now. I was sick with high fever at 18 months and began having seizures. From preschool age through 6th grade I had absence seizures. Starting in Jr High I began having aura's until my first grandmal at 28. I was not taking any medications or ever tested until my first grandmal. I began to take Dilantin which controlled my seizures until my late 30's and began having complex partials. I have had cluster complex partials at times going for week at a time. I have the VNS since 2002. I'm taking three meds..Keppra, Lamictal, and Dilantin. Keppra and Lamictal was added once I began having complex partials. In the last year I have found two things that has helped with the complex seizures. Living at sea level and recently the gluten free diet which I have been on about five weeks. We lived in Colorado and found going to sea level would stop the seizures. I would still have some at sea level but they were not clusters or as often. Since starting the gluten free diet I have not had any seizures. I feel better than I have in a very long time. I discovered the diet reading about it on the internet and decided to try it. So far it has helped more than anything else I've tried. I'm hoping this will continue. When I was having cluster seizures and nothing was stopping them my neurologist put me on Klonopin to take when the clusters would start. The Klonopin worked, it would put me to sleep, but over time I became tolerant to Klonopin having many withdrawal symptoms. I didn't understand what was happening to me and began researching on the internet and found information about benzodiazepines. It took me a year to taper off Klonopin and another year for me not to have any withdrawal symptoms.
I would recommend all to read all they can about benzodiazepines and the gluten diet. Both have played a huge role in my life. :)
 
Hi kraftart, welcome to CWE!

It's great to hear of the success you've been having with the GF diet. Many folks here at CWE have also tried it and found that it makes a huge difference. It's really fascinating that living at sea level has also had a positive effect -- do you know what the direct cause is? Maybe the difference in oxygen availability? Or blood pressure?

I hope you have continued success in treating your seizures -- it sounds like you've tried a bit of everything! Feel free to explore all the forums here at CWE, it's a great resource, and a terrific community.

Best,
Nakamova
 
So, I was just going to post a welcome note... and then I was so touched by your post. I just started having seizures at 47 and I must confess that there are days that I am grumbling inside. And you have been going through this for decades and you casually go through the many remedies and, well, I am just left with admiration and gratitude that in this community there are people like you that have a lot of experience and through it all, you keep going. Thanks for "showing me how it's done." The good news is that this site has a lot of really knowledgeable people and people who have experienced a great deal of this. Two thumbs up and good luck as you puzzle through more solutions. The gluten free diet has been helping me too! Have you tried Magnesium? I don't know if it works for everyone, but it sure has been a great thing for me. I take the liquid version. Good luck!
 
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