High Flow Pots?

[~elizabeth~]

Someone just posted an article on another forum about high/low/normal flow POTS. Only last week I saw a neurosurgeon about my neck problems but ended up talking about my autonomic problems. He said my facial erythromelalgia was probably due to peripheral vasodilation combined with increased cardiac output. Reading about high-flow POTS, this is exactly what he was describing.

I can't find any information about high flow POTS and what the implications might be for treatment. I'm very worried as I think most of the usual POTS medications might make my erythromelalgia worse (which has been the case with SSRIs, SNRI, betablockers, alphablockers and drugs like pseudephedrine). Clonidine is the only thing that has helped a bit, but is making my blood pressure go too low at the dose I need to take it to help my face.

[kalamazoo]

I also have erythromelelgia. So the erythromelelgia is caused by the POTS?

[~elizabeth~]

Probably more that they are both caused by the inability of the autonomic system control blood flow / constriction of veins.

[ramakentesh]

High flow - neuropathic or EDS. A QSART test can help.

[~elizabeth~]

Sorry, I don't understand the last comment. I have EDS, is that known to be associated with high-flow POTS? I don't know anyone else with EDS who has facial erythromelalgia. They don't do QSART tests in the UK, I'm waiting for results of autonomic testing done using these techniques:

Circulatory autonomic testing

I'm more interested in how this might affect possible treatment options as I've either failed to tolerate them in the past, or fear they'll make my face worse as most seem to include 'flushing' as a side effect.

[~elizabeth~]

All I could find was this:

Clinical and Physiological Effects of an Acute -1Adrenergic Agonist and a -1 Adrenergic Antagonist inChronic Orthostatic Intolerance

[~elizabeth~]

Presumably increased cardiac output/flow is what happens when excessive vasoconstriction is uncontrolled over the long term, leading eventually to this form of heart failure. I'd guess that EDS or dysautonomia could also be added to the list of conditions that underlie this:

High output cardiac failure

http://qjmed.oxfordjournals.org/content/102/4/235.full

I'm still waiting for the result of my echocardiogram, but I'm feeling increasingly worried that this might be my problem.