@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