New approach to Treating Drug-Resistant Epilepsy

@laura1961 I was heartbroken to read your post, but I think it's all something we have had to face in our epilepsy journey. I heard the same thing about wearing a helmet and the warnings that I'd die if I had another fall (TBI). I was constantly living in fear. At a certain point, I just had to accept my life as it is and make the best of it, with the best medical team I could find standing by my side. Mayo removed over half my medications and I actually have significantly less seizures. They told me I can't be totally off my meds, but they found just the right combination. I did have two seizures yesterday. One was while I slept, but you know I woke up so life is good.

@laura1961 I was heartbroken to read your post, but I think it's all something we have had to face in our epilepsy journey. I heard the same thing about wearing a helmet and the warnings that I'd die if I had another fall (TBI). I was constantly living in fear. At a certain point, I just had to accept my life as it is and make the best of it, with the best medical team I could find standing by my side. Mayo removed over half my medications and I actually have significantly less seizures. They told me I can't be totally off my meds, but they found just the right combination. I did have two seizures yesterday. One was while I slept, but you know I woke up so life is good.

Thank you so much for sharing because I am reaching that point where they've tried six different AE drugs with little success. I will share this with my Mayo team to get their feedback.

@laura1961
I completely agree with Chris. It can be extremely frustrating and overwhelming when you feel like the doctors aren't helping. My advice is to never give up. Keep fighting until you find the doctor who understands and is knowledgeable about what you're going through and knows how to help. We were very lucky to be able to get in with Mayo Clinic. They have been wonderful and are very thorough. My son also has the diagnosis of Mesial Temporal Sclerosis and didn't start having seizures until adulthood. We have been through so many doctors, I've lost count. However, once you find the one, your life will change and your stress will decrease. I'm glad you found this group. Everyone here is very helpful, encouraging, and dedicated. You have friends here that are on your side. I wish you luck and as always, feel free to reach out if you have questions.
Take care,
Kerry

@laura1961
Hi Laura
I completely understand that feeling of wanting to give up on doctors. But as I shared in my post, I'm so glad I kept searching until I found the right doctor to truly care for me. It made all the difference.
Several members of our group have been treated at Mayo Clinic and might be able to share their experiences with you: @dannoyes, @keeg1010, @royanthony, @tchandos, @absentsenior, and @patrassi. Feel free to reach out to them if you'd like to hear their perspectives.
Since you're in Australia, it would be wonderful to find a good epileptologist closer to home. Mayo Clinic might also be able to refer you to a specialist in Australia.
Please, keep persisting!
Chris

@laura1961
Hi Laura,
Cure Epilepsy is excellent and very trustworthy, worth exploring. They have a podcast called "Seizing Life" that I really enjoy:
- Welcome to Seizing Life
Cure Epilepsy
https://www.cureepilepsy.org/seizing-life/welcome-to-seizing-life/
Mayo Clinic also has dedicated epilepsy content you might find helpful:
- Epilepsy
Mayo Clinic
https://www.mayoclinic.org/diseases-conditions/epilepsy/symptoms-causes/syc-20350093
Besides the Epilepsy Foundation, both are great resources as you navigate your journey.
Chris

@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