New approach to Treating Drug-Resistant Epilepsy

Hi @dannoyes
I hope this can be a helpful alternative for treating your epilepsy. You mentioned you've had little success with AEDs. Was this because they couldn't significantly reduce your seizures or keep you seizure-free, or did you experience side effects that were difficult to tolerate? I'm curious to know if you also have temporal lobe epilepsy like me and many other members of our group.
If you can, please share the news after you've talked with your Mayo team.
Wishing you all the best!
Chris (@santosha)

@santosha I also have left temporal lobe epilepsy and the AEDs have not significantly reduced my seizures and unfortunately their intensity seems to be increasing. The side effects of the other AEDs were so bad that the Mayo doctor's said that I was so overly medicated it could have killed me. When I went to the EMU I was on four AE medications which were immediately ceased. I went through some of the darkest days of my life as those drugs were withdrawn. I had terrible hallucinations and extremely intense seizure events. At the end of the EMU everyone around me said how much better I looked, the world all of a sudden became more clear, and I felt whole again. My Mayo neurologist added me back on two of the safer AED drugs and suggested I go through the Mayo PRC program. To make my situation more complex my epileptic seizures are crowded out at times by FND seizures. So whenever I have a seizure we have to video the event and then evaluate it, if possible, of being epileptic or non epileptic. This just "muddies the water" in my epileptic management. To be perfectly candid, I go through periods where I just laugh off my seizures and try to reduce their significance. I am starting to volunteer with my service dog at a local hospital. I try to focus on living my best life. However, there is this shadow that we all have to contend with that seems to haunt us a times which motivates us to continue to seek a way to reduce the impact of this challenge of life. I don't know much, but one thing I do know. Thank God for the @mayoclinic1 team and their love and compassionate care.

Good Afternoon @dannoyes
Thank you so much for sharing that additional information on your epilepsy journey with me and our community here.
When it comes to epilepsy treatment, I believe that the benefits should significantly outweigh the challenges we face with medications. I can relate to your struggles—I once took an anticonvulsant that left me feeling like a complete zombie, causing far more harm than good. Finding that delicate balance is crucial for both seizure control and maintaining our well-being.
I wish you the very best for your upcoming meeting with your team at Mayo Clinic. Their expertise will hopefully bring you closer to finding the right treatment approach for your unique situation. Please keep us updated! Your experiences not only matter to me personally but also provide valuable insights for others walking similar paths.
Have a lovely weekend!
Chris @santosha