vonant Posted September 6, 2015 Report Share Posted September 6, 2015 HiI'm new to all of this and haven't even had a TTT yet.What is the criteria for hyperadrenergenic POTS? How is it diagnosed?I've had a rash around the back of my neck for years and since my fatigue symptoms started I get adrenaline rushes when I'm just about to fall asleep and even wake up in the middle of the night from adrenaline rushes?Does that mean I have hyper POTS? I hope not Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted September 6, 2015 Report Share Posted September 6, 2015 Hi Vonant,Sorry to hear that you're experiencing these symptoms. While we are unable to tell you here on the forum if you have a specific diagnosis or not, here is link to our physician's list: http://dinet.org/index.php/physician-list You can search for a doctor who specializes in dysautonomia/POTS.Do you have a primary doctor who would be willing to refer you for a tilt table test? If you are concerned about a hyperadrenergic response then you should have catecholamine (Norepinephrine levels) measured at supine and standing throughout the test. Also, here is a link that mentions the various subtypes: http://circ.ahajournals.org/content/127/23/2336.fullSarah Quote Link to comment Share on other sites More sharing options...
ks42 Posted September 6, 2015 Report Share Posted September 6, 2015 Adrenaline surges can happen in both hyper and non-hyper POTS, so it's impossible to tell without testing. Adrenaline surges in POTS can be caused by a wide variety of things: low blood volume (the body releases adrenaline when your blood volume is low, or even when you're dehydrated), low blood pressure or rapidly fluctuating blood pressure (the release of adrenaline is the body's attempt to normalize blood pressure), rapidly fluctuating blood sugar levels, or of course, hyper POTS. My POTS doc discussed all of this with me on my first visit, and said that almost all of his patients, even those without hyper POTS, suffered from adrenaline surges at some point, especially at night.Most doctors will do a supine / standing test for catecholamines (norepinephrine and epinephrine - the adrenalines). It's a blood test. Some will do it during the tilt test, but my doc preferred to do it separately because the tilt actually could falsely kick up adrenaline due to nervousness and the other autonomic tests they have you do while supine. So they had me lie in a dark room for 30 minutes (no movement, no electronics, etc) and did a blood draw. Then, had me stand for 10 minutes and did another blood draw. The criteria for hyper POTS can vary; typically though, I think it would be normal norepinephrine levels while supine, and elevated norepinephrine levels while standing. How elevated the norepinephrine needs to be can vary from doctor to doctor. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted September 6, 2015 Report Share Posted September 6, 2015 Vonant, here is another article from Mayo, scroll down to table 3 for diagnostics: http://onlinelibrary.wiley.com/doi/10.1111/j.1540-8167.2008.01407.x/fullHere is a link also that explains the blood draw process that Ks42 mentions above: https://lethargicsmiles.wordpress.com/2013/09/27/how-would-a-doctor-determine-if-i-have-hyperadrenergic-pots-all-about-catecholamine-testing-in-pots/ Quote Link to comment Share on other sites More sharing options...
p8d Posted September 6, 2015 Report Share Posted September 6, 2015 Just be sure the test is done as ks42 states. I suffered 5+ months of severe epi surges because the lab tech didn't do the first test properly. After complaining during these 5 months, repeatedly, about 4pm anxiety/doom (I didn't know what else to call it) the Dr finally 're-ordered and told me the tech hadn't been doing them correctly so I didn't appear to be hyperadregenic. Be your own advocate!! Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted September 9, 2015 Report Share Posted September 9, 2015 https://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=42008 Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted September 9, 2015 Report Share Posted September 9, 2015 Most patients probably fit a variety of 'subforms' - mast cell disorder, small fiber neuropathy, hypovolumia and hyperadrenergic features. Its a spectrum rather than clear groupings Quote Link to comment Share on other sites More sharing options...
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