Nine years ago, I ended up in the ER, status epilepticus, second time in a month that I was hospitalized, for a total of ten days. I had been walking into walls, couldn't move my eyes due to cranial nerve palsies, couldn't urinate, had trouble swallowing. I was in my mid-30s, so was this huge medical mystery that all the neuros thought was fascinating. Ran tests up the wazoo but few things turned up positive (prior to the SE, they thought MS or stroke, but nope). EEGs and MRIs were all neg. Sent home on depakote, had nocturnal grand mal seizures right before my period for two more months (dh could wake me up after them, but I'd fall back asleep and have them again the next sleep cycle, etc) before being switched to keppra. No more grand mal seizures, though I did start waking up in middle of the night with heart racing, heat flash, then all-over body shakes, and lyrica was added (7 ys ago).
I've moved numerous times since then. I now have a new neuro who says I don't have epilepsy, no tests in the past support any need for AEDs, and I "look great, am a vibrant woman" (I am in good shape, so woohoo for looking great) and therefore he doesn't think I need to be on the AEDs and should go off them.
He EVEN keeps saying "*if* you had grand mal seizures" and I'm like wtheck?! I *did*; there's no "if" about it. (dh said he'll go with me next time to *testify* to it for goodness sakes!). This neuro looks at me like I'm neurotic because I'm afraid to go off my AEDs. He says the shaking spells aren't seizures but he can't tell me what they are or how to prevent them.
And on top of this, he's insulted that I'm not treating him as God. He asked me point blank who am I going to believe? All the other doctors before him, or him (the guy who isn't even certain I had grand mal seizures). He said I had to decide who I was going to believe and listen to. (My new famdoc didn't want me making any changes right now until we figure out what's going on, so neuro is ticked)
What the heck do I do? I made up a summary of the past 9 ys of ER/hospital notes, doc notes, neuro health problems (numerous cranial nerve problems that were never explained, etc), hoping that would help him understand the past history better. Instead, I think he's looking at my appearance and making an assumption that a 40something thin woman who seems normal (on lots of meds) therefore is FINE because I don't fit the model of someone with head problems. Otoh, that's exactly why neuros were literally (true!) lined up to check me out 9 ys ago-because a patient like me rarely walks into their office. I feel so lost, having doctors force me to make a choice, and being friendly but antagonistic while doing so (how can it not be antagonistic to say that to me even if they preface it by saying how much they care about me and want to help me? I mean Seriously?!).
(as an aside, my Famdoc wanted me to get a second opinion re endo issues, so I went to a specialty clinic, which I think enhanced my local specialists' antagonism)