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It's really difficult to describe unless it's right after it happens. I swear it's always this one "scene" that I go through when it happens. I am falling down in slow motion and there are steps around me. I know it sounds so bizarre, but that's what happens to me!
As far as how little the doctor's seem to know about the condition, it is scary. But I think I read somewhere on this forum that some people have been to a specialist on the subject. I'd love to find one because I live alone and in a city where I know very few people. I can't stand the thought of an episode when I'm alone. I would, at the very least, like to know WHAT causes an episode for me. I've read all these people's posts and it seems like I can't pin point how/why mine happen. They are always different. It's very scary to me.