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New approach to Treating Drug-Resistant Epilepsy
Epilepsy & Seizures | Last Active: 1 day ago | Replies (37)Comment receiving replies
@santosha Hi Chris we do have similar life experience's, my seizures started at 45 & I am now 64. I have been listening to Dr Danoun & my GP last week who both say there is probably nothing more I can do. I even saw on Dr Danouns web page that some people that have Drop seizures end up in a wheelchair or having to wear a helmet the rest of their lives when going out mainly probably to stop damage from the falls. That's what I have come to the conclusion of now even after having hope some new drug or operation may have come about since 2012 when I stopped all drugs. I may/will give an Epileptologist like the one in Australia or Dr Danoun who seems to be the most knowledgeable online another go. Especially after reading this message from you. Diet is a big thing also, although trying a diet for seizures & osteo gets hard to navigate. I recently read that you should take 4-6 Prunes a day for osteo but may not be good on Carnivore. It has been hard to stop all sugar, carbohydrates & alcohol, although I have managed it for the 1st year. I have then been on and off other things like vege's, salads, some carbs (like croissants occasionally which is not suppose to be good), chocolate off and on & wine occasionally. I think I have done quite well really as I no longer really eat bread, pasta etc. I don't have a drink at night with dinner like had been doing over the years. Although it has not really made any difference in the amount of seizures monthly I have had. I have had a lot of stress & the seizures over that year doubled. I do not have auras & with these Drop seizures I just drop no idea at all when they will happen. I have an idea they happen around the end of each month or into the beginning of the next month, the same time my hormones once changed & I had my periods. Although I can have them in the middle.
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@laura1961
Good morning, Laura!
Thank you so much for sharing those extra details—it really helps me understand your epilepsy journey better.
When we have secondarily generalized seizures (which include drop seizures, also known as atonic seizures), we may not always remember the focal seizures that happened right before. This has already happened to me when I had tonic-clonic seizures!
A complete diet change can be very overwhelming. I took it slowly, making one change at a time so I could see what actually helped reduce my seizures. I started by cutting out gluten—which was challenging enough on its own!—and that alone reduced my seizures by about 60%. Later, I stopped eating carbs at dinner. All that was done with my doctor's supervision.
Keeping a daily diary when I was trying to identify and better manage my seizure triggers based on the Andrews-Reiter approach — https://www.andrewsreiter.com/ — was incredibly worthwhile and taught me so much about what worked and what didn't.
Since hormonal changes are a well-known trigger for women (these are called catamenial seizures), my doctor worked with my gynecologist to find a solution. They suggested I take birth control pills continuously for 5-6 months without breaks to stop my periods during these months. This has also helped reduce my seizures. This worked for me since I'm not yet in menopause.
The key for me was making these changes gradually, one at a time. If my doctor had recommended everything at once, I probably would have felt too overwhelmed to stick with it. Taking it step by step made it manageable and helped me understand what was actually making a difference.
I really hope you find a specialized epilepsy doctor soon who will give you the thoughtful care you deserve. Keeping my fingers crossed for you!
Chris
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