I also have NCS mixed with OI and heart problems. Luckily my cardiologist & neurologist work together and listen to what the other says, which helps with treatment.
I would def be checked out by a neuro just to be sure of other problems that Dysautonomia can cause. A pacemaker is a very good option, but making sure your daughter has the right amount of salt, fluids and protein is essential also or she'll end up like many of us - still fainting and all of the other things that go with these conditions.
Even then, it really can be debilitating.
I would love to go to a large clinic such as Cleveland, but they're out of my network and $12,000 deductible and beyond my means, if your ins allows, that would be a great option to try.
There is a forum (dysautonomia) that you might want to use to find some additional resources. I have NCS and it can be a very frustrating road unless you have doctors that understand the disease well. If I can help in any way or if you have questions...ask.
Jenn
Well it is a combined problem between the autonomic nervous system and the heart. It is usually treated with florinef, salt tablets and sometimes pacemakers. It can be debilitating but there are not a lot of options for treatments. I suggest that you seek an expert in this field, such as a tertiary care center such as ours. We have a dedicated syncope clinic which is manned by two experts ( one an electrophysiologist and another a neurologist) and together they can help most patients.
This is not usually a life threatening disorder, but as I stated above can be very debilitating.