RichGotsPots Posted July 5, 2012 Report Share Posted July 5, 2012 Dr Grubbs hyperadrenic paper says if it's above 600 I am but my doctor said above 800, so now I'm confused... Quote Link to comment Share on other sites More sharing options...
Birdlady Posted July 6, 2012 Report Share Posted July 6, 2012 Vanderbilt University says 1000+. There is no real standard and it honestly just depends on what doctor you see... Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted July 6, 2012 Author Report Share Posted July 6, 2012 That just confuses more then :-/ how do I know if I should use hyperadrenic type of meds then? Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted July 6, 2012 Author Report Share Posted July 6, 2012 Is it possible my NE in my chest is worse than systemically? Quote Link to comment Share on other sites More sharing options...
Birdlady Posted July 6, 2012 Report Share Posted July 6, 2012 I really have no idea. There is so much trial and error with this illness. That's what makes it exhausting to me. haha! Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted July 6, 2012 Author Report Share Posted July 6, 2012 Or exciting right lol ugh Quote Link to comment Share on other sites More sharing options...
Chaos Posted July 6, 2012 Report Share Posted July 6, 2012 Depends who you read or see....as with most things associated with this disorder.In the past Vanderbilt seemed to say that you had to have >600 to qualify as having POTS- in addition to the HR increase. Haven't seen that in articles recently though. My POTS neuro called it a hyperadrenergic "component" when my catecholamines were at 680, although he feels it's primarily a neuropathic form with that hyperadrenergic component making it more complicated.Without standardized nomenclature, it's impossible to say what type any of us have. Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted July 6, 2012 Report Share Posted July 6, 2012 It looks to me like they are just trying different medicines anyway and it is not clear that Hyperadrenergic POTS has a different etiology than other POTS. One root etiology might cause both in one case and a different etiology might not.Dr. Grubb seems more directed at treatment vs research and yet you yourself pointed out his whole clinic has averaged 60 Hyperadrenergic patients per year, thus not a lot to base conclusions on. Maybe use your probable type of POTS, as a guideline towards choosing medicines. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted July 8, 2012 Report Share Posted July 8, 2012 its almost irrelevant. There seems to be a fairly wife spread misconception that these two delineations vary in presentations. Hypers get just as dizzy and faint just as much as other groups.the most important article on HYPER pots recently demontrated that they have the same percentage of failed QSART tests. This does not support an argument that they are two distinct entities. The Mayo conclusion was more along the lines that they may constitute a spectrum. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted July 8, 2012 Author Report Share Posted July 8, 2012 I think it matter for treatment because some of these pots meds are stimulants. If I have high adrenaline then stimulation isnt what I need I would think and it would also explain some sensitivities to certain meds. In the ER they once gave me percocet and it was such a yucky feeling like I never felt before. They said that was a typical reaction but something tells me it's not.. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted July 10, 2012 Report Share Posted July 10, 2012 High 'adrenaline' levels in POTS would only ever be a coping mechanism. Perhaps you mean Norepinephrine levels which is the neurotransmitter implicated in POTS?beta 1 receptor hypersensivity seems common in POTS. Quote Link to comment Share on other sites More sharing options...
firewatcher Posted July 10, 2012 Report Share Posted July 10, 2012 I was diagnosed as having Hyperadrenergic POTS at Vanderbilt and they never tested NE levels. It was based on physical symptoms in response to the standard autonomic tests.The NE levels don't really change the treatment options unless they are looking for a pheo...it is all still trial and error until you find something that helps. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted July 11, 2012 Report Share Posted July 11, 2012 I doubt many if any of the Hyper patients as described in some literature would have postural hypotension like you describe Rich. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted July 12, 2012 Author Report Share Posted July 12, 2012 Rama, yes I meant NE, my doc refers to it as adrenaline but its really called noradrenaline... if postural hypotension isnt the M.O. for Hyper patients what is it the M.O. for? Firewatcher- pheo NE levels are high supine and standing, but in hyper they are supposed to be high just upright. If you read Dr. Grubbs article on hyper pots he lists the criteria. If you have an article from Vandy on hyperadrenic pots that states their criteria, can you post a link, it would be interesting what they use to decide... Quote Link to comment Share on other sites More sharing options...
issie Posted July 12, 2012 Report Share Posted July 12, 2012 Rich we all have orthostatic issues - which means we have a drop in our blood pressures that causes the tachy and the possible syncope - not all have low blood pressures like what OI is considered. I have mostly high blood pressures that drop down to a near normal level when I have my drops. Sometimes, with sleeping it gets really low and I have had unusual low drops occasionally which almost causes a faint - but - I've only fainted two times. I do have NE levels with standing above 800 (just looked up my report) So, by most of the criteria from different places I guess for sure I meet that criteria - unless you go by the one that says above 1000. I wouldn't meet it then. I think we all must have some increase in our NE levels and some may be more sensitve to the increase than others. It may be that a person has lower than 600 but has an overactive response to that level - because it is such an increase from their lying base line. Then that person may get the DX of HyperPOTS based on their response. Maybe that's why Rama feels that it may not be relevant - because there seems to be an over reaction in the sympathetic system of all of us - whether we have overly high readings or not. (Or maybe an under response of the parasympathetic system???) We seem to focus on the overactive part of our response - when on the flip side it could be an under response of the opposite system.Issie Quote Link to comment Share on other sites More sharing options...
firewatcher Posted July 12, 2012 Report Share Posted July 12, 2012 Rich,I've read Dr. Grubb's article, but my diagnosis was made without testing NE levels. The doc at Vanderbilt showed me the difference between POTS and Hyperadrenergic POTS in my responses to the ANS tests: my BP did not drop when it "normally" should have, it increased dramatically as did my HR. I have flushing, tremor and increased sympathetic symptoms on upright posture. I think (and they do as well) it can have several causes from too much NE, to an overly vigorous response to what you do have. Quote Link to comment Share on other sites More sharing options...
issie Posted July 12, 2012 Report Share Posted July 12, 2012 Firewatcher, That is my response too - but, I did have NE levels checked and they were high.Issie Quote Link to comment Share on other sites More sharing options...
POTLUCK Posted July 13, 2012 Report Share Posted July 13, 2012 To add my 2 cents.The pheo levels would also be much higher. Like 20 x normal. ( As an aside my levels came out SKY high and the endo thought I had pheo, pheo specialist thought I had pheo, MIBG showed pheo, CT did not, another radiologist read CT as having small pheo at exact point of increase on MIBG ( 7mm in exact location on L adrenal gland of increase on MIBG ) The repeat catecholamines were much closer to normal so looks like I do not have pheo just medical bills. ) Quote Link to comment Share on other sites More sharing options...
issie Posted July 13, 2012 Report Share Posted July 13, 2012 Potluck, so you're with us as a HyperPOTS? At least now you know and you can continue to help us look for answers. At least it's not the scary pheo!!!! I'm glad things are closer to normal now.Issie Quote Link to comment Share on other sites More sharing options...
HyperPOTS8 Posted July 13, 2012 Report Share Posted July 13, 2012 Potluck,What did your levels come down to and do you have any idea why they came down, eg were you taking a TCA or other medication that can affect the results? Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted August 10, 2012 Author Report Share Posted August 10, 2012 Its my understanding that NE causes BP to go higher, but what I've figured out is that some of us have varying levels of pooling and depending on that level of pooling that can lower our BP. In many cases like mine that pooling kicks in after 5+ minutes so it's delayed. So that I have hyperadrenic with poolings. Quote Link to comment Share on other sites More sharing options...
peregrine Posted August 10, 2012 Report Share Posted August 10, 2012 I'm also like Rich, it seems like - I do get high BP both sitting (intermittant) and standing, but I do begin to pool after a few minutes and then I get a BP drop after it's been long enough without any muscular pumping. FWIW, my doctor was happy to diagnose me as hyper without doing the bloodwork - I think maybe like firewatcher said she just went on symptoms and TTT response. Quote Link to comment Share on other sites More sharing options...
Kellysavedbygrace Posted August 10, 2012 Report Share Posted August 10, 2012 Don't NE serum levels (like other neurotransmitters) fluctuate quite a bit for those of us w Dysautonomia? Mine was also elevated upon upright tilt but I was under the impression they vary quite a bit day to day so one day I could be at 800, another 600, another 1000. Anyone know if this varies? Quote Link to comment Share on other sites More sharing options...
NMPotsie Posted August 10, 2012 Report Share Posted August 10, 2012 Kelly I have the same understanding. My plasma NE levels at Mayo were about 900 and I was not very symptomatic, but I had previously had a urinary catecholamine test after a flushing episode and they were very high (somewhere in the 1800s, I think, but don't have a copy of the report). My bp went higher and higher on tilt, and then dropped suddenly, and then sort of skyrocketed. When I have the surges my doctor says my cats are probably very high and bp gets up to 180/160 area, but on the tilt my bp only got up in the 140s or so, even lower on one tilt (122/89), so I don't get the impression that these things are set. I think they do fluctuate, and often randomly.The important thing about the hyper component, from what I was told, is that it rules out certain meds that could cause complications (so, in my case, stuff that would raise my bp to dangerously high levels). Or, maybe doesn't rule them out, but guides them to a starting point. The valsalva response is also part of that diagnosis at Mayo, and mine was abnormal. When taking my symptoms (especially the surges), my ttt, and my valsalva response all into account, the hyper component was applied. Still, Goodman suggested caffeine (a stimulant) might help. It nearly killed me; I had the worst surge I've ever had. You would think, as a "hyper" patient, they wouldn't suggest caffeine, but they seem to just try stuff out and see what sticks. Quote Link to comment Share on other sites More sharing options...
peregrine Posted August 11, 2012 Report Share Posted August 11, 2012 NMPotsie - what was the Valsalva abnormality that they used to help support the hyper diagnosis? My Valsalva was somewhat abnormal, so I'm curious. For me the caffeine was suggested as a way to deal with the spaciness - end result was that it did nothing and I was slightly sleepy (this was after 2 double-shot drinks in 30 minutes, and I only drink a cup or two of black tea a day). Quote Link to comment Share on other sites More sharing options...
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