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NCS Diagnosis - I'm stuck, where to go from here?
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NCS Diagnosis - I'm stuck, where to go from here?

Hello,
I was diagnosed with Neurocardiogenic Syncope a few months ago after a tilt table test.  My Cardiologist is doing his best to treat me but I think I need more testing and treatment.  After trying a beta-blocker which didn't work out because I could not tolerate the side effects, I have been trying Midodrine and it seems to be helping a bit.  I also take a salt tablet daily to help raise my low blood pressure.  I have too many symptoms to list...the classic ones of course are present - the pre-syncope symptoms seems to always be lurking in the background.  Lightheadeness, dizziness, etc.

It is the other symptoms that worry me.  I seem to be getting stuck when I try to speak.  It's all in my head but when I try to get it out, it takes a few seconds to actually get it out.  I have had CFS symptoms forever.  No energy, heat intolerance...generally weak and no stamina.

I am really stuck about where to go from here for treatment?  I thought I found a full Autonomic testing lab, but it turns out they don't see NCS patients any more.  I'm wondering if a general Neurologist is going to be able to help me.  I'm wondering why, if this condition seems to be well known, why it's so hard to get help and get to the bottom of what else is really going on.  I just want to find a treatment and feel better.  I work full time and don't really know how I do it.  My husband and I work at the same office and without him driving, I would never make it thru the week.  I acutually am only going to make it three days this week.

Any help in pointing me in the right direction would be very much appreciated!  Thanks in advance.
Stephanie
Tags: NCS
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