Snycopy

My 19 year old daughter was diagnosed with neurocardiogenic syncopy in April of 2008.  Since she has been treated with Fluorinef (.3), Zoloft.  She has begun to have high blood pressure and now is fainting every day or so.  They have weaned her to .1 Fluorinef at this point.  The cardiologist has said it is not their problem, to see the neurologist.  The neurologist is concerned and is sending us to another cardiologist.  However, in the interim, the fainting is a problem in our minds.  Should we be concerned?  Is the high blood pressure just a rebound from a bottom out BP that is rebounding?  No one wants to be responsible.

[Cleveland Clinic]

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.

[Jenn0030]

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

[Mom2four85]

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.