I was to the point where I couldnt bear going to a doctor and having my POTS and collapses issues ignored by them once again but I went to see my CFS specialist today took me a week to force myself make a needed appointment, (crying before I went cause I was so sure that this would be a disappointing appointment and i couldnt bear the thought of that).
My boyfriend this time was going to push across to the doctor about how disabled I am and how bad all this is for me (ive gone emotionally beyond even feeling that I could talk about it anymore to a doctor). To our amazement the moment we went in, before we could even mention POTS .. my specialist suddenly started talking about it.
My specialist had heard a Professor talking on the radio about dysautonomia and POTS only YESTERDAY and started telling me about it on that. (I think he then must of spend hours last night researching it.. he mentioned a couple of common web sites). How's that for luck..
So anyway.. here he is.. My specialist making out to me he knew about it all along and not just from the radio yesterday (but in the past when Ive mentioned it over the past 3-4 years telling him I have this and severe BP dysregulation.. he had no idea what it was at all and never researched it or looked at the info I took in). lol kind of funny in a way.. got to see humour in this. (he is a dear thing with kind heart and I know does try).
He decides now he's going to be interested in my heart rate and BP so decides he's going to try to test me for POTS.. he goes about it wrong (starts taking my readings while Im sitting) so I tell him, no.. one needs to be laying for a while first before standing.. not sitting then standing. So he then tells me to lay on floor so he can take a BP there.
By that point i was very nervous as he truely didnt have a clue what he was doing so I thought he was going to end up thinking I was normal due to doing POTS testing a bit wrong.
What happened thou even shocked me.
He took my BP when I was laying (had me lay for less then one minute.. it was a good healthy BP and pulse rate) then told me to stand up so he could take it again. He took it immediately on standing and it had gone high.. so he waited one minute with me still standing and took it again.. it said 126/160 .. and it was still raising. His monitor started erroring out as my heart was missing beats and seemed to be beating beats at varied different strengths.
By that point I was starting to get dizzy so had to sit (I only lasted just over 1min standing). My specialist seemed shocked and immediately rang the GP and told him what my BP and heart was doing (The one who'd told me the other day I arent disabled and refused to help me get disability parking pass due to my collapses).
While he's still in shock over what my body does on standing, I hand him disability parking forms and ask him to fill them in, which he did immediately no questions asked. (thought that was great timing to give them to him )
He then refered me to the Professor at the main city hospital (I think it may be the same Professor who he heard speaking on the radio yesterday about all this). (its a professor of pathology who is specialises in BP issues and POTS).
I ended up collapsing leaving his clinic but Im so happy that FINALLY a doctor has looked at what my body does when I stand.
right now.. Im in amazement I got lucky for once. Thank you radio for educating my specialist... what's the luck of him learning about all this yesterday.