@Giggorata It’s advice from PoTS UK and EDS UK and I did have to speak to my GP on Monday, after the urgent care dr screwed up my prescription. GP says it sounds like the right advice, but then they also admit they know absolutely nothing about PoTS (won’t even prescribe my or my son’s medication).
I think, as with everything to do with these lesser known/understood conditions, they can’t say for certain, as no studies have been done and it’s all too new. I tend to think if you have a condition that most medical professionals you meet have never heard of, where, for example, if you go to A&E they don’t have a clue what to do with you, even without the current situation, you just have to be sensible and do the best you can, because the likelihood is that no-one really knows. Urgent care dr had heard of it, but then asked the nurse to take careful note of my BP, without checking my HR, so was clearly thinking Orthostatic Hypotension not PoTS, which is a common mistake I come across. My BP rises a lot when I stand, but that doesn’t class me as having hypertension. Most doctors assume my BP will drop when standing, their faces are a picture when they see it do the opposite!
PoTS isn’t actually a heart condition at all, it’s an autonomic dysfunction or dysautonomia, but that means it doesn’t just affect the heart, pretty much every system in the body is affected. Anything that you don’t need to think about for your body to do. So, BP, temperature regulation, digestion, breathing, pupillary reaction, perspiration, lack of perspiration, etc, all sorts of things people don’t realise when they assume PoTS is just a fast HR when you stand up. So many things can be out of whack all the time anyway, that if you then factor in illness on top, it means you tend to be hit really hard. I’m trying not to think too much about it to be honest.
Could just be personal experience, but I feel it’s only recently that cardiology has started taking ‘wiring’ issues more seriously, having previously been mainly focussed on structural or disease related cardiac issues. So it makes sense that advice on these conditions is also behind in this sort of situation.
I can’t do supermarket shops, as I can’t queue at checkouts - and in the current climate, couldn’t queue to get in either. My husband has Asthma and my middle child is very poorly, underweight and usually housebound, apart from hospital appointments. My eldest has ASD, OCD and severe health anxiety, so MH is an issue. Just got upset reading all the nasty comments about people taking grocery delivery slots, as some of them would apparently think we should still be venturing out to shops, but we have so many issues in the household that I feel we have no choice.