Goldfinch

Hi. I've posted before as I have been off work and have a load of POTS symptoms, it floored me. I didn't initially realise this but when investigated non POTS specialists said in letters I may have POTS and need a specialist referral (waiting). I was diagnosed with hEDS a few years ago by a geneticist. Also CFS and IBS and OA. I have headaches, sweating, tachycardia on moving, always feel light headed and slightly confused when standing/moving and have always wanted to lie down, visual issues, chest discomfort, cannot tolerate heat. Racing/ pounding heart, nausea, Raynaud's, exercise intolerance, the list goes on. My main issue is Orthostatic Hypertension, especially diastolic, can go extremely high, eg diastolic 140 on standing, not always that high. With holter pulse between 40-160, BP ranged approx 80/60 - 170/150, narrow pulse pressures, though I suspect low BP due to trailing medication. I had negative test for urine metephranines and normal ECG except for sinus tachycardia. My question is.... I have most POTS symptoms but not the fundamental one...despite getting regular tachycardia in daily life, when I just stand from sitting, my HR doesn't go up much at all, only when I move, then it shoots up. Does this mean I could theoretically have a diagnosis of Orthostatic Intolerance rather than POTS? Or does "mild dysautonomia" with elements of POTS exist? I know on this forum one can't diagnose but I would really appreciate opinions generally speaking, there must be others like me with lots of the horrible symptoms? Due to Covid everything is taking so long. Thank you.

This is really interesting. I'm about to have 24 hr BP testing. BP has suddenly gone high but shoots up when I stand, I've been testing it at home with an omron too and sometimes I let my arm hang down on standing, other times bent but still relaxed. Sam, when you say your tests are clear for hyperpots do you mean your heart rate doesn't shoot up enough? I have quite disabling symptoms (also have hEDS) but on standing my BP shoots up, especially diastolic, but my heart rate doesn't always. However if I walk a few steps, then it does. I'm about to have tests to rule out other stuff but from researching I'm suspecting hyper pots or a mild version, from a comment from an ooh Dr who suspected dysautonomia when my diastolic went up to 150 and then lowered again when I sat down.

To andybonse, I just read this and saw that your BP increases on standing, so does mine! I am already diagnosed with hypermobile EDS and am on antihypertensive whilst I have the BP side of things investigated. But the gp I saw was shocked when it increased on standing, said they had never seen it. From googling I may have mild hyperadrenic pots if that is possible, as I have loads of quite disabling Pots symptoms but my heart rate doesn't always go up by 20-30, my symptoms seem to vary day by day. Anyway if you see this, any info would be appreciated, thank you! I'm in the UK.