It is a shame but I was desperate to know what was going on and wanted to prove the doctors wrong. I saw a new GP the other day as I needed another sickness note, she put ‘POTS’ on it and said “now what does POTS stand for?” It’s one thing doctors not knowing much about it but when they haven’t even heard of it before you just think what a great start! Gosh Anna, I am so sorry to hear about your son that’s so sad.
Well your standing heart rate certainly sounds like it could be POTS. I have a app called Heart rate which is actually really quite accurate, you just place your finger over your camera lens and it monitors it for you. I didn’t think it would work at first but it matched with my blood pressure machine. That way you can see the difference between your resting HR and standing HR.
That has been going on a very long time for you, it will be a relief to finally have a proper diagnosis and to hopefully find a treatment to suit you. I asked for a referral to Dr Tushar Salukhe in London as he was on the POTS UK website, I was in the room with him for all of about 5 mins. Because I already had a diagnosis and I was already doing lots of what I was meant to be doing already, he seemed all arsey because I knew so much about it. But if it wasn’t for me and my research I would still be stuck with thinking I had CFS. He put me on medication to try and that was it, was a very long and stressful day just for a 5 minute consultation, but then that’s the NHS for you.