Hi @hippele
I completely understand your frustration and pain with these medications. I went through similar struggles when I started my epilepsy treatment back in 2019, really battling with AEDs and their side effects.
After two years of trial and error with five different AEDs, I switched doctors and I was prescribed pure CBD, staying on it for over three years. The side effects were very minor, and while my seizures were reduced, they weren't completely eliminated. But all that changed after my status epilepticus last December, when I had to go back on an AED at the hospital.
My current doctor told me I'd need to stay on Keppra for a while, and honestly, I was terrified. I was experiencing all those awful side effects - diarrhea, joint and muscle pain, allergies, etc. My reaction was pretty negative because I was so scared of repeating all those horrible experiences I'd had with other AEDs.
But here's what was different: unlike my previous doctors, my current one took the time to really fine-tune the Keppra dosage. Today I'm on a dose that my body can actually handle, and I'm not living in constant discomfort anymore. We have a saying here in Brazil: "a scalded cat is afraid of cold water." My doctor completely got that and was incredibly patient and reassuring throughout the whole process.
I've been seizure-free for almost six months now, and I'm so grateful. Would I be seizure-free without Keppra? Probably not. It makes me wonder how different things might have been if my earlier doctors had taken the same careful approach.
I know you're angry at these medications, and I totally get it. We've already exchanged some messages here on Connect! Remind me - who's treating your epilepsy? Is it a neurologist or an epileptologist? Has he or she suggested trying to fine-tune your current medication dosage?
All my best to you!
Chris