~elizabeth~ Posted November 18, 2012 Report Share Posted November 18, 2012 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. Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted November 18, 2012 Report Share Posted November 18, 2012 I also have erythromelelgia. So the erythromelelgia is caused by the POTS? Quote Link to comment Share on other sites More sharing options...
~elizabeth~ Posted November 18, 2012 Author Report Share Posted November 18, 2012 Probably more that they are both caused by the inability of the autonomic system control blood flow / constriction of veins. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted November 19, 2012 Report Share Posted November 19, 2012 High flow - neuropathic or EDS. A QSART test can help. Quote Link to comment Share on other sites More sharing options...
~elizabeth~ Posted November 19, 2012 Author Report Share Posted November 19, 2012 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 testingI'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. Quote Link to comment Share on other sites More sharing options...
~elizabeth~ Posted November 20, 2012 Author Report Share Posted November 20, 2012 All I could find was this:Clinical and Physiological Effects of an Acute -1Adrenergic Agonist and a -1 Adrenergic Antagonist inChronic Orthostatic Intolerance Quote Link to comment Share on other sites More sharing options...
~elizabeth~ Posted November 22, 2012 Author Report Share Posted November 22, 2012 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 failurehttp://qjmed.oxfordjournals.org/content/102/4/235.fullI'm still waiting for the result of my echocardiogram, but I'm feeling increasingly worried that this might be my problem. Quote Link to comment Share on other sites More sharing options...
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