from what I've read on it, people sort of gave up on it a bit more after realizing that it was not a 'heart condition' like they originally thought... so it's a bit more uncommon I suppose
all they can do for me really is try to help with the pain I've been in, but all they can do with that is try out different medications to see if one helps..
I'm not really sure how I'd change things myself with this :\
I know what's going on now, yeah, that's great and stuff.. but there are 'no known treatments' so, I think all I can do is keep doing what I've been doing. hold on best as I can and try to push onwards, no matter how hard things get.