@sammierene81 @lisalucier brings up a good point. When the meds don't help, I would also explore FND seizure disorder. FND seizure disorder is real and isn't "all in your head" like some neurologist will insinuate. It is a biological/physical issue that happens in your brain where you have symptoms that look just like epileptic seizures, but they aren't. This doesn't mean they aren't real; they are just different. In my case, I have both FND seizures and epileptic seizures. FND seizures are distinctive in that they don't show up on an EEG as producing the same electrical stimuli as an epileptic seizure. They are very challenging to manage, especially if you have both types of seizures.

So the obvious question is, what do you do? If you can get into the Mayo family, they may recommend that you do an EMU study. This is where they dig deep into your medications, possibly removing all your medications (they did this for me) to study your seizure activity in-depth. The insights are invaluable. Through this process, they may adjust or remove certain medications to give you a whole new foundation that they can use to help manage your situation. Having uncontrollable epileptic seizures is highly challenging and also dangerous. Just remember that you have to be the champion of your health. The Mayo team is unlike anything I've ever experienced and I'd do everything possible to get into their system.

Lastly, here is an extremely helpful video about FND seizures: