I was recently diagnosed with NCS after being misdiagnosed with epilepsy for the last 20 years! Grrrr.
Zazzaz: I live in Portland too! I use the Yahoo group for NCS that someone else mentioned - it's a pretty good group, very supportive, but maybe not as informative as I'd like it to be.
Analyzethis: I started taking those same supplements too and also found them to be very helpful. However, the calcium and magnesium tend to cause "the trots" a little, so I've stopped taking them and am trying to figure out how to take them without the bad effects... does anyone have any ideas?
to Mamaslittlehelper - I think you should take your daughter in to see a cardiologist. They can more accurately diagnose the NCS as there are many different paths it can take - some people start with a too fast heart beat, some too slow, or too hard, but ultimately we all end up with a drop in blood pressure that causes the fainting. Some people who have this have a type of heart murmer called a mitral valve prolapse (this is fairly common and I believe not dangerous).
One more question - does anyone else get really sick before of after fainting? Before I faint, I get hot and clammy, nauseaus, short of breath, and feel sort of anxious... then afterwards I get really sick to my stomach and often will throw up. I'm curious if anyone else has this happen. ALso, although most of the time I've been standing or sitting, I've had a few while lying down - anyone else?