Am I Hyperadrenic Pots If My Ne Levels Are 630?

[issie]

And then you have EDS veins in that mix with some of us which causes issues. I have wondered why with EDS veins - I would be vasoconstricted and then later on have pooling issues. I have found out that MCAS can cause a leaking of the veins when there is a mast cell degranulation that will cause edema. But, that's different than true blood pooling. There is a fine line in whether I dilate my blood vessels or constrict them and that can all be up and down throughout the day. Hmmmmm, so how do you fix that one?

Issie

[NMPotsie]

Adjustingmysails: thanks for clarifying that. I do experience syncope, but only after standing for extended periods of time, and my doctor had attributed that to hypotension, but when I read your post saying hypers do not faint from low bp, I was confused. I was labeled hyper due to high standing catecholamine levels, high bp on standing, hyperadrenergic surges (based on report of symptoms and one urinary cat test) and my valsalva response, so I just need clarification on that.

I think I understand where you are coming from. I recently saw a neuro who wouldn't treat me for POTS because I don't have hypotension. He said I didn't have POTS because my bp goes high, rather than low, even though I showed him an article that said "in the absence of hypotension" and explained that OH is considered a different (though often associated) diagnosis. This type of thinking prevents people like me from getting proper care.

[RichGotsPots]

Well, I don't fit neatly into either Hyper or Neuro. I have the some what raised level of NE and on head up tilt my systolic BP rises 15-20mmHg but I also always have delayed Orthostatic Hypotension. And it was 1st seen on a exercise testing then again after 6 minutes of head up tilting..

The bottom line is all POTS testing to date besides the TTT to diagnose is not conclusive enough to confirm anything. I don't even think Daxor is that reliable for volume testing to be honest and my pots specialist told me that its his belief as well..

Adjustingmysails- I don't believe 10% is the right number for Hyper POTS, I believe it is much higher. I also believe that is people don't have high levels of NE they still might be overly sensitive to it. Most people I've talked to have had many adrenic storms, yet tons of them are not diagnosed with HyperPOTS...

[AdjustingMySails]

The 10% of pots patients are of the hyper pots sort is a reference from a recent research article written by Grubb and his team published in 2011, not a number of my own volition. However, Grubb--and others--agree that there are likely many undiagnosed cases of pots out there, as so many are misdiagnosed..... Truth of the matter is that there are so many unknowns and uncertainties about pots, heck there are even some neurologists that "don't believe in pots," so I agree that testing and diagnostics for pots has a long way to go. In the meantime, I find that often it's most constructive to focus on what is known about pots and treatment for it that is proving to be successful. Otherwise, we can find ourselves in a tailspin of speculation and queries that truly have little bearing on the quality of our lives day in and day out.