Hello all. Sorry for not being here a lot lately, I've been busy with life problems.
Ill keep this short. Ive been feeling off for 3 years with on and off symptoms. 4 months ago, i was put on medical leave because my symptoms increased and i couldnt drive anymore. Ive known POTS for about 2 years now and really pushed for more testing that way after the cardiologue ruled out heart problems.
My problem, is that i had a TTT yesterday and it was negative according to the autonomist specialist. But he gave me 2 bad reasons for not believing him :
1) You dont have POTS because your blood pressure did not decrease. And even if i (the specialist) would diagnose you with it, i cant really help you because you dont faint and the only thing i prescribe is fludrocortisone, salt and water.
2) Your heart rate didn't really increase that much during the test like my other POTS patients, and when i reclined the table, your heart rate stayed high. Therefore, you dont have POTS since you didnt recover
However, this is false. First, the criteria for a POTS diagnosis (as far as i know) is either a rise of more than 30bpm upright, or an increase higher than 120bpm, WITHOUT blood pressure change. (Dysautonomia International, Vanderbilt, Johns Hopkins). And second, there ARE treatments for POTS even if your blood pressure doesn't decrease.
I asked for a copy of my TTT and got it. Here are the results :
Before tilt (30 minutes laying down) : 90 bpm, 155/83
1 minute after tilt : 129 bpm, 158/90
2 minute after tilt : 121 bpm, 164/101
3 minute after tilt : 123 bpm, 171/86
7 minute after tilt : 112 bpm, 163/92
10 minute after tilt : 113 bpm, 157/100
12 minute after tilt : 119 bpm, 156/96
15 minute after tilt : 118 bpm, 160/95
17 minute after tilt : 125 bpm, 154/98
19 minute after tilt : 125 bpm, 171/97
After tilt laying on the table : 121bpm, 159/87
What are your thoughts on all this? He suggested i have anxiety and "anticipate" me standing. This is false. Im not scared of frickin standing, i feel out of breath after a flight of stairs, exercising is possible but hard, im dizzy all day, i have shortness of breath, im cold then hot 1 minute after the other, sometimes eating cause me to have nausea etc... Im not creating all this. I had the best possible life before all this happened. Why would i ruin it and be anxious about it??
Should i just contest and be my own advocate or just quietly stay in a corner and suffer in silence?