POTSmom2 Posted August 16, 2018 Report Share Posted August 16, 2018 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. Quote Link to comment Share on other sites More sharing options...
Weary Posted August 16, 2018 Report Share Posted August 16, 2018 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) Quote Link to comment Share on other sites More sharing options...
POTSmom2 Posted August 16, 2018 Author Report Share Posted August 16, 2018 we were told that if its not genetic - it likely due to a mast cell activation disorder issue... Quote Link to comment Share on other sites More sharing options...
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