So, my doctor is going to send me to the local POTS specialist.
I’ve been trying to test myself because we don’t have a tilt table in town (my doc said we should check the physical rehab places… i’m sure the specialist would know).
I have so many questions despite having educated myself.
My heartrate has been high (upwards of 140bpm) everytime I’ve tested it when I’ve been having pre/syncope symptoms but I haven’t had any luck with the poor man’s tilt table test. There is a sustained increase of at least 20bpm, but that’s normal. It appears to still be climbing, but with the blood pooling, 10 minutes on my feet trying to not move is plenty painful in its own right. I keep trying to do that test and just keep getting nauseous and can’t sit still – so i’m pretty sure that is screwing it up. (To be fair, I haven’t had a full faint or weakness with them, though I’ve had plenty of those lately when I haven’t had a blood pressure cuff strapped to my arm)
I’m taking my symptomatic heart rate with my phone, to be fair (and occasionally it won’t read because i’m shakey). But resting it’s been on par with my blood pressure cuff.
There is an initial blood pressure increase upon standing, which is totally normal to my knowledge.
And I have tested my heart rate several times with my phone with various posture changes and commonly see a 20bpm increase with going from laying to sitting, and then 30bpm (staying up in the 130-140bpm) when moving to standing from sitting. (Edit: tested with the blood pressure cuff during a spell and still in the 130s-140s and not dropping – I don’t know if that’s definitive but yeah)
My husband and I theorize that it might be the type of POTS that climbs slowly off the 20bpm increase… if persistent, capping around the 140bpm mark that makes my doctors ask me “do you feel ok?”. That continuous posture changes are the cause rather than a single posture change (I don’t have this problem first thing in the morning, though I often feel of balance ans more clumsy, but my husband has GERD and our bed has an incline).
My basal heart rate is in the 60s, resting anywhere from 75-120ish (as tested at the doc office), but usually around 75-95ish. Clearly when I’m having a bad attack it takes the heart rate a little while to go down since we’ve tested with me in the floor and had a 110 reading… and my guess is that it was so high that it was taking awhile to come down rather than plummeting almost instantly (to be fair, I did stand up, collapse after a couple steps, stand up and walk about 10 feet, collapse, pull myself into a chair into a sitting position, still felt dizzy, laid down on the floor, and then puked in the trash can)… so that was a lot of me being stubborn and refusing to accept my body screaming at me to LAY DOWN. Because people think it’s weird… and I don’t want any awkwardness (to be fair, I put that on myself).
I’ve identified some joint hypermobility, and I’m pretty certain that points in the direction of POTS. (Every finger on both my hands, possibly my thumb and the last joint in the fingers, my hips, and both pinky toes (which are probably the most pronounced and kinda creepy)).
The attempts at signaling the ANS to be a jerk so I can get the readings is irritating. I’ve read that this test is pretty much as accurate but the numbers just aren’t high enough for me to be certain. I hate that sometimes I get the reading and sometimes I don’t. I was pretty certain that this is supposed to be constant… but if it’s that simple to test, I don’t see why my doc didn’t just test me sitting and then test me standing in the office.
Ok… so… working backwards is working out much better.
Symptomatic stats: 117/88 141bpm (and going no lower than 129bpm so long as I was standing).
Laid down, 128/74 90bpm. I had gone from sitting to standing, took my readings for about 5 minutes, drank some water and laid down and retested.
Has anyone else had to get their numbers this way and not having luck on working it forward?
Since the blood pooling is really bad today and I’m having symptoms, I might try the ttt again tonight ans see if I can get the numbers. Idk