Support Aides

I saw this post asking about how your “fury friend” supports your chronic illness .. and I thought .. Oh Cool .. I just snapped a picture of Bo sitting with me in the sun a couple days ago as I was waiting out a flare. But then I noticed that the group didn’t allow images in their posts. Seriously? Who does that? How can you talk about your fur family members without a picture?! Well in my case, my non-shaggy-dog story. As you can tell this is going utterly no where. You can also tell it was one of “those” hyperadrenergic flares that called for no less than TWO blood pressure cuffs and the spray bottle of water and a hot pack, which was a nice contrast against the cold patio before the morning sun heated the flagstone up. Each dog offered their own wait-the-bitch-out support and they are both very dear in their own way. Bo just enjoys the “me-time” whereas Bitz gets hyperconcerned .. if not because she’s worried whatever I have may be contagious and she doesn’t want to get SICK herself again.

The hPOTS flares are hard, they are. They aren’t utterly surprising in terms of when they hit .. which could be any number of reasons. Yet they are still considerably disorienting. And I still do not handle them with the grace or style my egoic zen head tells me that I should.

For me, the nasty flares involve the adrenaline dump, or technically I suppose it’s an excess of norepinephrine in the brain and the result is a high blood pressure spike and a half dozen comorbidities that make it all feel like a highspeed train wreck. I wondered on this day, as I came down a bit from the peak of the POTShole if there was an ‘early warning’ that might have alerted me before the straw that breaks the back of the dromedary. I don’t wear any devices these days, other than taking my wrist BP cuff with me around the house if I’m feeling off center. A dozen plus years back I use to have various pulse meters, some attached to tight fingerless gloves that I would wear. But after spending so many years watching my heart beat on my phone, my laptop or my magic glove .. I became instinctually aware of how fast my heart was beating without actually touching my pulse. It’s a subtle or bold in your face GSR or respiratory differences. Whatever the IT is about it, I am usually within 5 BPM on a good guess of what my heart rate is at any given time. So while I’m in the kitchen prepping breakfast and feeling “fine”, I’ll know if my heart is 105-110 and when it hits 140 or so, I know enough to CALL THE GAME and get off my feet for a while.

Those are the “easy” calls. But most of these bad hPOTS flares don’t seem to have any precursor that I can see coming a mile away. Sure, I can say well I was standing making breakfast. But I can do that 5 out of 8 days with only the normal post pots rebound. So what makes THESE B-A-D days different?

Clearly I don’t know. But I did speculate, that perhaps the hyper flare which is always marked by a high blood pressure spike, but not necessarily a super high pulse rate .. what IF the BP is rising silently and not correlated with a tachy heart rate? Cause if I’m running a high pulse rate, I feel it. But I don’t notice my blood pressure creeping up, especially if I’m still “feeling fine.”

So this week, I took my trusty wrist cuff with me to the kitchen with the intent to notice any rise in blood pressure that could be a pre-cursor to a hyper-flare. The image above are BP cuff readings in sequence over a span of forty minutes. My pulse changed very little but my blood pressure made distinct changes. As I got out of bed, and which is typical my blood pressure was LOW and I was tachy compared to when I was laying down. I put on my waist trainer (compression) which helps my heart rate not have to work so fast to keep me conscious. As I begin making coffee (walked down to the kitchen) there’s little difference. But when I took my BP a few minutes later it was up significantly. (I took it on each arm to confirm.) As I suspected, there was no indication in a corresponding pulse rate increase, so I did not in fact notice the uptick. What I DID was take off my waist trainer at 7:57 and then took the BP again, still standing and saw it did what I expected, it lowered my BP for about 10 minutes and then it went right back up. At 160 I decided I’d call it and go back and lay down. Notice my pulse was not correspondingly high, and because I am only innately aware of an increase in heart rate, I did not notice that my BP was going higher. Which is of course common with Hyperadrenergic POTS.

Back in my room, resting on the floor, my BP came back to normal and I was noticeably tired but decidedly NOT in an hPOTS dump of adrenaline like it was the day before. The previous day, when I crashed badly my BP was probably 150 and my pulse hovering 110 even sitting down and it stays UP like that for a while. Eventually (maybe 30 minutes) even though I’m back to what’s normal for me (homeostasis) it will be a good TWO HOURS before I can stand up again. And some days the dizzy/awful symptoms keep me down for the rest of the day.

We know nothing from the n=1 BP readings this morning. All of it could be a fluke. All of it is most definitely a desperate push to try and “control” something that by definition is dysfunctional. Nonetheless as a data dude I am inclined to collect bytes and tidbits to try and make sense of out the senseless. To that end, I bought a cheap wrist watch that claims to take blood pressure readings (on demand) which would be easier than wearing my wrist cuff as I’m wrapping an egg burrito. IT IT WORKS. Whereas traditional blood pressure cuffs read by squeezing the vein and temporarily stopping the blood flow the new generation wearable devices estimate blood pressure using optical sensors.

There are notably BAD consumer reviews on almost all of the watches. So I decided if I was going to try the new optical sensors, I wanted something CHEAP. I picked up this watch for less than $30. Cool thing is I tested it by wearing the watch on my left wrist while taking my blood pressure with my traditional wrist cuff simultaneously on the right.

Preliminary data (okay the FIRST and ONLY test thus far) looks promising. But the test will be if the new optical technology will be able to read an upright and on the go measure while pouring coffee. Of course I could always train the dogs to sniff out my blood pressure swings, they seem to be finely tuned to what I need in the moment.