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hyperadrenergic POTS

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My son has hyperadrenergic POTS.  Our terrific dr (Blair Grubb in OH) has explained this acts very different from "other POTS" which 90% of POTS sufferers have. 

Has anyone found a dr in the NYC tristate area who understands hyperadrenergic POTS? 

We are told the recovery rate is extremely low for those with hyperadrenergic POTS.   Does anyone have a good recovery story to share who has suffered with hyperadrenergic POTS - with the ability to have a job and/or go to school?  If so, what drugs/therapies have you used?  For hyperadrenergic POTS, just following the salt/liquid/exercise regime is not enough.  

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Have you found the genetic variant that goes along with your son's condition? supposedly hyperandrenergic POTS often genetic  (though i may have it and no identyifyable gene)

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