Is my POTS unusual?

[erentz]

There's something that mechanically doesn't make sense to me about my POTS that I would love to hear other opinions on.

At the simple level my heart rate goes from 60-70 resting (or 80 if I'm experiencing white coat syndrome) to anywhere from 110-130 standing depending on the variation in my condition day to day. My diastolic blood pressure also increases anywhere from 10-20 points when I stand, of course most people's blood pressure drops (so I have the hyperadrenergic variation of POTS).

I was tested for the CellTrend panel, and a number were "At Risk" or Positive. The Positive ones were: anti a-1 Adrenergic antibodies, anti Muscarinic Cholinergic Receptor 2, and Receptor 4 antibodies.

But what hasn't made sense to me mechanically is that when I sit my heart rate barely goes up (maybe 10 bpm). My BP also doesn't change much. And interestingly when I straddle a bike seat and leave my legs hanging, the same thing.

So body posture (laying vs upright) doesn't seem to be the factor (or not the sole factor). So here I'm thinking it has to be something about the physical mechanical position of both being upright and having pressure on my joints as if I'm standing.

So I tried using a leg press machine with my bodyweight (160 pounds). This has my upper body in an upright position, but my legs pointing out straight in front of me pushing on 160 pounds of pressure, simulating a bit more than what they'd be pressing holding my body up standing.

The result was unexpected. I had a bit of an elevated heart rate ranging between 80-90 (I was on it for more than a couple of minutes maintaining the position). But after I stood up off the machine and my heart rate rose to 120 again.

Now I'm confused.

If it were due to some blood flow trigger, such that when standing the vertical distance between the extremities of my legs and my heart were part of the picture, I'd expect to see this issue replicate sitting on a bike seat with my legs hanging.

If it were entirely some neurological signal getting confused and it required pressure of my body weight, I'd expect to see more of a result from the leg press.

So somehow, I need my body weight on my legs *and* to be in an upright standing position. Could there be something inbetween my thighs and my lower spine that makes the difference and causes my body to think it's okay until it is both straightened out *and* body weight is applied?

 

[Murph]

This is fascinating and I really respect your dedication to figuring things out. I've never thought of this sort of experiment. Please do more of it and report back!.

This is the part i'm most surprised by: "when I straddle a bike seat and leave my legs hanging, the same"

You're simulating an upright position but with no weight on your legs? Is that what this represents? And you don't get a massively higher HR from that? If I did that my HR would lift for sure.

The other part I'm interested in is whether your Blood pressure stays elevated upon standing. Mine might lift when I fitrst stand, but it goes back down later as blood pools in my legs.

 

[ryan31337]

I'd consider what's happening to your core muscles during these experiments, as splanchnic pooling can play a big part. If you're engaging your core to maintain balance on the bike but not when standing, perhaps this is the difference.

Might be interesting to also throw in compression garments, abdominal binding etc. and see how that effects it.

 

[kangaSue]

POTS can also be a factor of dysfunctional hormonal regulation or abdominal vagus nerve compression affecting bp regulation and POTS is commonly encountered in any of the abdominal vascular compression syndromes (in about 20% of cases across the board), suspected to be from either of these causes but no one knows for sure how or why.
https://pubs.rsna.org/doi/10.1148/rg.341125010

 

[xks201]

There's something that mechanically doesn't make sense to me about my POTS that I would love to hear other opinions on.

At the simple level my heart rate goes from 60-70 resting (or 80 if I'm experiencing white coat syndrome) to anywhere from 110-130 standing depending on the variation in my condition day to day. My diastolic blood pressure also increases anywhere from 10-20 points when I stand, of course most people's blood pressure drops (so I have the hyperadrenergic variation of POTS).

I was tested for the CellTrend panel, and a number were "At Risk" or Positive. The Positive ones were: anti a-1 Adrenergic antibodies, anti Muscarinic Cholinergic Receptor 2, and Receptor 4 antibodies.

But what hasn't made sense to me mechanically is that when I sit my heart rate barely goes up (maybe 10 bpm). My BP also doesn't change much. And interestingly when I straddle a bike seat and leave my legs hanging, the same thing.

So body posture (laying vs upright) doesn't seem to be the factor (or not the sole factor). So here I'm thinking it has to be something about the physical mechanical position of both being upright and having pressure on my joints as if I'm standing.

So I tried using a leg press machine with my bodyweight (160 pounds). This has my upper body in an upright position, but my legs pointing out straight in front of me pushing on 160 pounds of pressure, simulating a bit more than what they'd be pressing holding my body up standing.

The result was unexpected. I had a bit of an elevated heart rate ranging between 80-90 (I was on it for more than a couple of minutes maintaining the position). But after I stood up off the machine and my heart rate rose to 120 again.

Now I'm confused.

If it were due to some blood flow trigger, such that when standing the vertical distance between the extremities of my legs and my heart were part of the picture, I'd expect to see this issue replicate sitting on a bike seat with my legs hanging.

If it were entirely some neurological signal getting confused and it required pressure of my body weight, I'd expect to see more of a result from the leg press.

So somehow, I need my body weight on my legs *and* to be in an upright standing position. Could there be something inbetween my thighs and my lower spine that makes the difference and causes my body to think it's okay until it is both straightened out *and* body weight is applied?

Is the cell trend panel available in the us?

 

[valentinelynx]

Is the cell trend panel available in the us?

US patients send a serum sample to CellTrend in Germany. Instructions are on their website (Click on the lines saying, "lab service" and "sample preparation and logistics".)

Here's a link to the instruction sheet (to share with the person drawing and processing the sample prior to shipment). Some labs will agree to send the sample for you if you supply all of the shipping materials including the paid shipping label (FedEx). Most labs will also need a doctor's (or other prescribing practioner's) order to collect the specimen, although maybe some of the direct-to-patient labs will allow you to request it without a doctor's order.