Anyone with Postural Orthostatic Tachycardia syndrome?


#1

was wondering if there is some common genetics?


#2

I have it. Tons of salt. sugar and Effer- C electrolyte powder. Homeage pediolite. Gets ugly if I forget these things. Get the Effer C at Walmart. Cheaper at Costco, BJs.


#3

I have it! Secondary/comorbid with onset of ME/CFS


#4

Yes! I have a prolactinoma, which causes neurogenic Diabetes Insipidus, which causes dehydration/hypovolemia, which causes the POTS. Also am hyperadrenergic, with likely pheochomocytoma. You’d think endocrinologists would wanna do something right? Wrong. Not even Mayo Rochester. In the US, endo=thyroid and type 2 diabetes. Endocrinologists here are strictly “in-the-box” thinkers. I also have Ehlers-Danlos and compound acute porphyria. I urge you to discover the underlying cause of your POTS because although it CAN be caused by some genetic conditions, ME/CFS for me was just the tip of the iceberg. Look for ACTIVE diseases, not just genes. POTS is more of a symptom. I got my first mediport implanted six yrs ago and became wheelchair bound soon after. Then I got sicker. Keep searching.