Question About HyperPOTS

[RobinB]

I was diagnosed with POTS in 2016 as well as Benign Hypermobility Syndrome.  I've been wondering if I may have HyperPots.  I am always on edge (could very well be anxiety) and had a few situations recently where my BP increased on standing and sitting.  Normally my BP is about 100/70.  When I stand my diastolic BP rises whether my systolic does or not.  I did have catcholamine testing done at the time, but I only see one result on my chart.  I don't remember if I was laying, sitting, or standing for that test.  Can someone's POTS type change? Happy to share my test results if anyone can give input.

Thanks!

[Pistol]

4 hours ago, RobinB said:

Can someone's POTS type change?

I believe ( my personal theory only, not actual medical information ) that it might be possible. Since all POTS is based on a part of the ANS not functioning properly - sympathetic overcompensation or parasympathetic withdrawal, for example - it should be possible that the dysfunction can change to a different compensatory mechanism. I have never read anything about POTS changing, but I know that mine did change insofar that my syncopal episodes turned into seizures eventually. I used to pass out when the ANS caused a sudden DROP in BP, and that changed to seizures b/c my BP started to rise suddenly instead of dropping. Therefore I think that the dysfunction can change from one mechanism to another. 

[RobinB]

4 minutes ago, Pistol said:

I believe ( my personal theory only, not actual medical information ) that it might be possible. Since all POTS is based on a part of the ANS not functioning properly - sympathetic overcompensation or parasympathetic withdrawal, for example - it should be possible that the dysfunction can change to a different compensatory mechanism. I have never read anything about POTS changing, but I know that mine did change insofar that my syncopal episodes turned into seizures eventually. I used to pass out when the ANS caused a sudden DROP in BP, and that changed to seizures b/c my BP started to rise suddenly instead of dropping. Therefore I think that the dysfunction can change from one mechanism to another. 

That’s interesting. I’m going to start taking readings again. It’s so hard for me to even stand still for a BP reading 😢. 

[Pistol]

9 hours ago, RobinB said:

It’s so hard for me to even stand still for a BP reading 😢. 

@RobinB - you should take your BP seated and relaxed when you take it, unless you are taking orthostatic VS. 

[RobinB]

1 hour ago, Pistol said:

@RobinB - you should take your BP seated and relaxed when you take it, unless you are taking orthostatic VS. 

Yes I can do that but I like to take it standing sometimes to see what it does. It used to drop but I think it goes high now. I know for sure that my pulse pressure narrows when I’m upright.