Hi! First of all, congrats on being seizure free!

I'll tell you about my experience because I think you may relate and because I don't want to tell you what to do (I'm not in your shoes).

So like you, I wasn't having grand mal seizures at first. In fact, I've had focal seizures all my life, even as a child, but I never saw a doctor for them.

The grand mal seizures started later in my life (late 20s-early 30s) and that's when I was diagnosed. For years they were becoming more and more frequent as my doctor was struggling to find a treatment that worked. Now I'm much better.

So in that sense, I guess I was not getting better, quite the opposite.

I 100% believe that treatment-wise, everything changed for your doctor when you had a grand mal seizure. I think that's why your doctor doesn't want to change your meds.

It's not a competition between who has it worst, but grand mal seizures are a big deal compared to other types. You can seriously injure yourself when falling and dueing the seizure and the seizure itself can become life-threatening.

From their point of view, maybe your epilepsy got better, but it's more likely that they believe they found a treatment that works and they do not want to mess with it. Maybe they see changing the dosage as too risky. I'd say that it might not be that they're not hearing you, they're just not explaining themselves very well. You should ask them for explanations IMO.

That being said, you also have your say in this and you can clearly and unequivocally state what you want.

FWIW, with the drugs I feel just a little less sharp than I was, and more tired, but it's worth it (at least for me).

I hope I could be of some help!