Hi @hopefullibrarian
I am very sorry for the experiences you went through and I can understand well your feelings.
AEDs did more harm than benefit to me, after having tried 5 of them (Lamictal, Tegretol, Trileptal, Vimpat and Gabaneurin), wanting to through them all out of the window.
But in 2021, I started to be treated by an epileptologist and this made a huge difference and changed my epilepsy journey for the better. It was clear at this point that I have refractory epilepsy or drug-resistant epilepsy, starting to be treated with medical cannabis by my doctor with very few side effects. Unfortunately, it seems that there are few doctors out there who know how to treat with medical cannabis. Besides that, I also started a gluten-free diet, which reduced my seizures by 60%. Taking gluten 100% of my diet was much much easier than I thought. I have also studied much my triggers (physical, external and internal) and have put an action plan so as to avoid them as much as possible. This was also very helpful. I still do have seizures (an average of about 2 partial complex seizures per month), but they are less harmful than those I had when taking AEDs. Most important, I am smiling again!
Recently, @joseph1963 has shared a study with us that is worth reading: Treating seizures with D-Leucine and L-Leucine. For sure, this is something I will investigate more and talk about with my doctor.
Do not give up! If you wish to talk, please feel free to send me a message!
All the best!
Chris (or Santosha)