Am I Hyperadrenic Pots If My Ne Levels Are 630?

[HopeSprings]

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?

Yes, it varied in my case. I had a reading of 1001, which the Dr. thought was a big deal, but when re-tested (twice) it didn't go as high. I asked a different Dr. (my neuro) based on that high reading if I was hyper-pots and he said, not necessarily ... that POTS patients in general can have high standing norepi. BP that shoots up seems more significant and I never have that.

[NMPotsie]

Peregrine: I don't really understand it, but my test says "exaggerated Phase IV overshoot." My understanding of this, which may be incorrect, is that my bp rose much higher than normal after I finished breathing. This is one of the reasons I was prescribed propanolol, because it helps with this (though why, I have no idea; I'm guessing excess ne?). This is something I plan to ask more about but didn't really understand at the time I was being diagnosed.

[HopeSprings]

I've wondered what my valsalva results meant to - it says "Large and possibly exaggerated heartrate response to Valsalva, but in the setting of a mildy augmented BP stimulus. Mildly increased phase II decline with inadequate recovery. Large, but not excessive phase IV overshoot." My BP didn't go high at all during the tilt test. The neuro who did the test told me my valsalva results suggest autonomic neuropathy. Not sure how he came to that conclusion?

[NMPotsie]

Naomi mine showed a decline in phase 2 as well, but it was mild, while the phase 4 was exaggerated; however, my results say "suggestive of a hyperadrenergic state" and "no evidence of autonomic neuropathy" (based on my qsart results, I thought), so maybe it isn't part of the hyper label and I misunderstood. I was given a lot of info in a short period of time.

I found this summary, which is a study of this use of propranolol on the valsalva. The full-text would be better but I haven't had time to look. I think it's interesting in this article that they talk about headaches being relieved with propranolol because of this bp overshoot.

http://www.springerlink.com/content/92182g8vq1241162/

[HopeSprings]

NMPotsie, So where it says large phase IV "overshoot" that means my BP shot up during the valsalva? Is that what that means? And the phase II "decline" would be dropping BP?

My sudomotor testing (I assume this was the QSART) was normal, but then my skin biopsy showed small fiber neuropathy. So I think the QSART alone doesn't necessarily rule out SFN/autonomic neuropathy. I think someone else here had a normal Qsart and positive skin biopsy.... or was it a positive Qsart and negative skin biopsy? I forget, but it seems these tests can give false negatives. You probably didn't misunderstand your Dr - they all just seem to have different interpretations of what the test results mean. Propanolol was on my list of things to try, but my primary care Dr. wouldn't give it to me because of my low BP. I may ask my neurologist about it.

[NMPotsie]

Naomi: my understanding is the same as yours; that in phase 4, which is after completing the valsalva, the overshoot indicates the your bp responds a bit higher than normal, while the decline means it drops a bit lower than normal.

I wondered about the neuropathy as well because the QSART was normal (actually, high compared to the ranges listed on the results) in that I did sweat but my doctor says I have symptoms of neuropathy. I don't understand neuropathy in the context of the tests, though, so I'm baffled. I thought pots WAS neuropathy.

Not sure how low your bp is, but mine always hangs out around 90/60 supine, and drops into the 80s/40s on occasion. Actually, the propranolol doesn't lower it much because it's such a low dose and because I am very careful to do the salt and fluid loading. Dr. G told me explicitly that if I don't do the salt my bp will drop, then rebound hypertension will follow, and I would be worse than I was before. I am careful to follow his directions to the letter, and so far, it has worked pretty well for me. The big benefit for me has been the drop in intensity of headaches, which I had nearly every day, and less fatigue because my heart isn't beating so fast.

[HopeSprings]

NM - thanks for sharing your experience with Propanolol. As far as neuropathy goes, an article on Medscape lists POTS under the category of "primary acquired autonomic neuropathies." So I guess these Doctors feel POTS is a neuropathic illness.

http://emedicine.medscape.com/article/1173756-overview#aw2aab6b2b4

[peregrine]

Now that I'm well enough to sit and look at my testing results without falling over... my Valsalva sounds different from you guys. "Borderline normal BP with reduction in pulse pressure at 50%. Normal HR responses to Valsalva maneuver." Basically if you look at the chart, it looks like the pulse pressure in my Phase II (the second half of the part where you're blowing hard, after the BP rises) is really narrow compared to the rest of my BP during the test. My doctor said there were three possible reasons for the decreased pulse pressure: deconditioning, dehydration, or SNS failure, but that my SNS was fine because the BP rose during Phase II and it doesn't do that in folks with SNS failure. It's unclear why else - it could be deconditioning, but at that point I walked 2-4 miles a day; it could be dehydration, but I was drinking 2-3L a day and eating salt too. Unclear.

FWIW, Naomi, my BP hasn't gone down much since starting beta blockers - though I don't use a BP cuff, this is just doctor's office readings, it seems to be the same. The only major physiological change has been a lower HR - it only gets up to 150 when I'm exercising *really* hard.

Mmm, forgot to add - I was diagnosed with neuropathy due to borderline abnormal QSART responses, but haven't had a biopsy.

[HopeSprings]

FWIW, Naomi, my BP hasn't gone down much since starting beta blockers - though I don't use a BP cuff, this is just doctor's office readings, it seems to be the same. The only major physiological change has been a lower HR - it only gets up to 150 when I'm exercising *really* hard.

Ooo! you're the perfect person to ask since we have the same "spacey" issue - did beta blockers worsen your spaciness? I've wanted to try it, but everything I take makes my head worse and I've just assumed a beta blocker probably (definitely) would. Which one are you on? As far as interpreting autonomic testing... I don't think even they know what a lot of it means.

[peregrine]

They didn't have any effect on the spaciness that I can tell - calcium channel blockers did worsen it slightly, though. I've been on atenolol (max dose 25mg daily) and propranolol (max dose 30mg twice daily, but I'm now on 15mg twice daily because of bradycardia and shortness of breath). Higher doses of pyridostigmine (90mg three times daily instead of 60mg) seems to aggravate it as well.

[AdjustingMySails]

Hi there! I am new to this forum, but am certainly not a stranger to hyper pots. I was "officially" diagnosed with hyperadrenergic pots six years ago (diagnosis after several tests, including a serum norepinephrine level--or noradrenalin as some of you refer to it ) after walking around with a "neurocardiogenic syncope" diagnosis for 12 years before that (diagnosis per multiple failed tilt tests during those years). I am one of Grubb's hyper pots patients.

Yes, we all have "orthostatic issues"--but that term by nature of pots physicians simply means "an intolerance upon assuming an upright posture with a heart rate increase of 30 beats per minute (or exceeds 120) that occurs within the first 10 minutes of standing and relief of these symptoms by lying down. Low blood pressure does not comprise the "pots definition". WE DO NOT all have drops in blood pressure. Some actually have increases. Case in point: I for one, experience either no change in blood pressure or an increase in blood pressure within minutes of standing, as well as a significantly increased heart rate up to 140's or 160's depending on the day (even though I'm on meds, Grubb is tweaking them, they need tweaking now and then) within minutes of standing, and I am one of the hyper pots patients that frequently faints--complete black outs. The fainting is caused--NOT by drops in blood pressure--but because of an increased pressure and resistance in the blood vessels on the brain that decrease the blood flow and with it the amount oxygen flow. The brain's reaction to inadequate blood flow, is fainting. I'll explain better now.....

I just want to point out that there is a very DISTINCT difference between hyperadrenergic pots and neuropathic pots (characterized by previously healthy patients with a sudden onset of symptoms, often secondary to other disorders/diseases). That's because the very root cause of the symptoms of tachycardia is VERY different (I'm not referring here to the "Idiopathic cause of POTS, as that's still up for debate and research.) Yes, as someone mentioned, "hyper pots patients do get as "lightheaded and fainty as other pots patients do," but what causes them to feel lightheaded and faint is different. I would just like to remind you that the M.O. for pots is orthostatic tachycardia--better known to all of us as increased heart rate within 10 minutes of standing--thus the "OT" in POTS. To say that hypotension is the M.O. for pots is a sweeping generalization, as such is only the case with the most common form of pots--neuropathic pots--wherein pooling of blood in the lower extremities and abdomen with prolonged upright position leads to a drop in blood pressure and the body's response to such is an increase in heart rate as a way to bring it back to normal. The changes in vital signs in this form of pots is a pysiological problem, in other words the body is failing to do something mechanically that it's supposed to do.

In hyper pots, which only comprises 10% of all pots patients, the changes in vital signs that occur with standing (increase in heart rate and typically a normal or slight increase in blood pressure upon standing) is a neurally-mediated issue, in other words, there is a defect in "messages" being communicated within the nervous system itself that result in the hyper pots symptoms. That's where the norepinephrine levels come into play, as such is a chemical that is necessary for these "messages" to properly flow within the nervous system for the body to respond to changes to itself. In a healthy body, the flow of these chemicals within the nervous system (catecholamines, norepinephrine being one of them), "tells" the body what it needs to do to keep itself stable in order to keep enough blood circulating to the the vital organs--brain and heart--for maximum healthful functioning. Norepinephrine is supposed to be inside cells to do it's job, but in hyper pots, the messages aren't getting communicated properly, because the norepinepinephrine can't get in the cells (because of a defect in the "message relaying part" of the nervous system) and so norepinephrine that can't get in these cells, is in the blood, not where it's supposed to be in high levels. That's why people with hyper pots have increased norepinephrine levels when they have their blood tested (serum). By the way, Grubb's latest research (Cardiology Journal, 2011) notes levels greater than or equal to 600 is considered diagnostic of hyper pots. So, with this "chemical/message system" isn't working properly, too much norepinephrine in the blood stream triggers one's heart rate to increase and one's blood vessels to constrict, and so the pressure within the vessels increases and less blood flows through, which decreases the amount of oxygen that can flow to the brain (so you get dizzy and fainty). So, Hyper pots patients get dizzy and fainty--Sure thing. From hypotension ( low blood pressure)? Nope.

In contrast, as I mentioned above, in the other form of neuropathic pots, the problem is that the body cannot increase it's blood pressure to keep enough blood supply to the vital organs with position changes, like standing, because of a mechanical problem with the blood vessels inability to constrict to do so. The message part is working properly in this sort of pots, it's just that the body's peripheral vasculature (blood vessels) are not.

So, there is a FUNDAMENTAL difference between this less common form of hyper pots. All of us pots patients share many similar symptoms, but there is a place where similarities stop abruptly, and, it's in the cause of orthostatic symptoms. As Grubb has explained pots is not a single condition, but rather a group of disorders that result in similar symptoms (from Cardiology Journal, 2011).

Pots obviously has its fair share of mysteries and hopefully as more of them are unraveled, the easier pots will be to nail down and treat! Here's hoping!!

[issie]

THANK YOU!!!! Adjustmysails. That is the best explanation that I've read so far. And much better explained than even my doc did for me.

I have been saying FOREVER that my veins are constricted and need to vasodilate. I am HyperPOTS and do believe that some of my issues are with the blood flow above the heart level and lack of oxygen to the brain. I've been around the world with trying different things ---been the whole gamet of everything tried with POTS and most of it has not worked. But, if I vasodilate too much then there are other issues. Recently realized there are multiple reasons for the edema that I've been having however and probably more related to mast cell issues then even the distolic heart issues. So, pieces of the puzzle continue to come together.

May I ask what you are doing for you HyperPOTS and how successful do you feel you have been in "controlling" your symptoms?

Issie

[issie]

Oh, forgot to mention. I'm on a trial of Diamox - idea is to increase blood flow to the head, and increase oxygen to the head and help to drain spinal fluid from around the brain. I had to drop way back in the amount I'm taking ---but, having positive results with it. Yayyyy!!!!

Issie

[lfreem02]

AdjustingMySails - I am glad you posted your explanation. I am new to all of this and am still trying to understand what is going on with my body. I was told a couple of weeks ago by an electrophysiologist that he thinks I have an issue with my autonomic nervous system linked to neuropathy in the left side of my body, and that something is triggering my vagus nerve. He does not think I have POTS, because they haven’t recorded an increase in heart rate like they would expect, and also does not think I have orthostatic hypotension, because my symptoms occur whether I am sitting or standing (at least I think that is what he was trying to say the reason is). I have seen my heart rate go up to 120-130 while walking at a slow pace, and 140-160 when walking up stairs. My heart rate was 120 while lying down during an echo test I had done earlier this year. I have not seen my blood pressure drop, but have seen it increase. I had a tilt table test done, and I felt really lightheaded and had to look down to tolerate it, but nothing significant happened with my heart rate or blood pressure. About five minutes after taking nitroglycerin, I felt horrible and the tech thought I was having a seizure because my pupils dilated really big. My blood pressure dropped to 80/60, but I am not sure what my heart rate was. I don’t think I ever lost consciousness, but did end up in a cold sweat when she finally lowered the table. The crazy thing is that when the test was over, I felt better than I have in a while. I have not seen any major benefits from taking Midodrine, Florinef, or Celexa, and wonder if my norepinephrine levels would be high if they were tested.

[issie]

Symptoms occur with sitting, standing and lying with me and I'm HyperPOTS. My NE levels are above 800 with standing. I have an increase of bp with standing - but, have a lower lying bp. All of us are so different and complex. The idea of the surges happening with lying and sitting seem to be associated with Mast Cell issues - from what I'm learning. This can cause the surge type feelings and the tachy that occurs with this. I have found H1 and H2's along with Nasal Crom and some alternative supplements - are being very helpful for this.

Issie

[McBlonde]

AdjustingMySails.... THAT is an excellent explanation. No wonder all the doctors are so confused about "POTS". Whoever decided to lump these different manifestations of an autonomic disorder and call it "POTS" did a great disservice to both medical community and patients.

[NMPotsie]

adjustingmysails: Can you please explain why my bp and cats all rise on tilt, and then I have a sudden drop in BP? My bp gets really high and then suddenly sort of bottoms out.

[issie]

NMPots, Dr. G. explained to me that those with high bp's also have drops of our bp and according to him - that's the orthostatic part of POTS. He said that we can drop just like others, but that may only put us into a more normal bp range. I think that still may be the case with some HyperPOTS people - I don't think us Hypers all fit neatly into a box either. I think some do have issues with blood flow to the head and heart - but, some also have the orthostatic bp drops and that causes issues of it's own. I think at times, I have issues with both problems. I appreciated Adjustingmysails explanation - cause there are times that I know I'm having vasoconstriction in peripherial limbs and at those times there is severe brain fog and it makes sense that there could be constriction in the brain and also lack of oxygen to the heart and brain. I think that the drops in bp can also cause some of the issue with HyperPOTS.

I'm in contact with some hyperPOTS people that use vasoconstriction on their legs and midodrine and say it makes a big difference for them. I've tried vasoconstricting drugs and every time I have - it's been a disaster. I've used vasoconstricion on my legs with hose and found it made my neuropathy worse and increased by blood pressure - but, an abdominal binder - seems to make me not as nauseous. So, maybe there are subsets of us Hypers too. There have been some Hypers with high NE levels and low bp's. instead of high bp's. I had always thought that to be considered a Hyper you had to have high NE and high bp's. But, got corrected on that thinking a while back by someone.

It's very complex ----isn't it? We are all learning and it takes a whole lot of time and patience. I'm sure we will all have our thinking tweaked as science unfolds and uncovers some of the mysteries of this condition. We just have to be open minded and not think that how we understand something - at this minute - is concrete - cause it can sure change. Goodness knows, mine has!

Issie

[HopeSprings]

I'm really confused then (usually am). If all you need is standing norepi over 600, I would meet the criteria for HyperPots , but I also definitely have neuropathy and all signs point to autonomic neuropathy. If these are two distinct POTS entities (neuropathic vs. hyperPOTS).... which one is causing all the symptoms - it's hard to believe you can have both? The last word from Vandy was POTS is diagnostic with standing norepi over 600, and hyperpots over 1000. Their research is older, but they haven't ammended it from what I can tell?

[HopeSprings]

It's very complex ----isn't it? We are all learning and it takes a whole lot of time and patience. I'm sure we will all have our thinking tweaked as science unfolds and uncovers some of the mysteries of this condition. We just have to be open minded and not think that how we understand something - at this minute - is concrete - cause it can sure change. Goodness knows, mine has!

Issie

Yes, Issie, Perfectly said!!

Edited because I forgot to add my comment - duh.

[issie]

The last word from Vandy was POTS is diagnostic with standing norepi over 600, and hyperpots over 1000. Their research is older, but they haven't ammended it from what I can tell?

And to make it even more confusing - another place says over 800. I'm over 800 with high bp's. So, if it has to be 1000 does my high bp put me as a hyper? See what I mean . . . . .very confusing. Mayo has has put me into the hyper catagory with the high NE and high bp's.

The neuropathies can be associated with some autoimmune issues and also MCAS. Have you had those things checked out? I also found that the compression of the tight hose - made my feet go almost totally numb. Now that I don't wear them, I can feel almost everything - except for a few toes. Except, when I have edema - everything goes numb - yet hurts at the same time. Maybe the fluid is compressing on the nerves and causing the problems??? I'm also finding that alpha lipoic is helping with the neuropathy.

Issie

[HopeSprings]

Issie, Mayo says 600 too? And another place says 800? They all need to come together and make a decision. I had lots of testing done to look at possible underlying causes for the neuropathy - so far everything has been negative. I don't think I'm a fit for MCAS because I don't flush and my symptoms are constant - from what I've read of MCAS, it has an allergy feel to me, like episodes.... reactions.... if that makes sense. Symptoms like shortness of breath, anaphylaxis, episodes of diarrhea, flushing etc. sounds different from what I experience. I didn't do well with compresssion stockings either. Alpha lipoic acid is on my list of things to try - glad to hear it's helping.

[issie]

I just looked up my NE test at Mayo and their reference range is anything over 750 flags as high.

Issie

[AdjustingMySails]

Hi again... After my posting last night, I was worried that I gave a muddied explanation, so I'm glad to hear that some of you found benefit in it. Sorry if it sometimes seems in my posts that I get a little "excited" about helping others understand pots. I've been an RN for the last 13 years and for three of them I worked as a nursing instructor, so "talking teachy" just comes naturally..... Whomever made the comment about potsie's not all fitting into a box, you're spot on! As is the case with many medical disorders and diseases, one's illness is very personalized, and so in many situations generalizations truly can't be made. I think we all agree and readily acknowledge-the medical community alike--that there is still substantial room for understanding and treatment for pots.....

A wee bit more about pots and orthostatic hypotension--based on what I've read in a few of the posts for this subject, I'm thinking that I may have confused a few of you here. I was trying to convey that the principle feature of pots is orthostatic intolerance--symptoms of lightheadedness, fatigue, palpitations, nausea, diminished concentration, trembling, near fainting, and fainting--as well as the presence of excessive increase in heart rate on standing---not hypotension. However, I wasn't saying that hyper potsies can never experience hypotension--as they do. And, now and then I do, too. However, hypotension is not the hallmark of hyper pots. And, as someone mentioned (issie, perhaps), because hyper potsies typically have a normally mod to high blood pressure, when theirs drops, it drops into what some refer to as "normal range," not markedly low, as in 80/40. In other words, a typical sitting BP for me may be 158/84 with a resting heart rate up to 120 or so, and when rechecked one minute after standing, may be about 168/98 with a heart rate in 140's (on meds, used to be much higher). When I'm standing there, I will feel lightheaded, get clammy skin, feel fainty, and sometimes will have to sit to prevent fainting. So it's obvious that the near syncope and syncope that I'm experiencing is not the result of orthostatic hypotension, but of poor oxygenation to my brain due to constricting vessels. heck, I have fainted while already lying down (I asked Dr. Grubb if that is even possible, as I wasn't propped up on pillows in bed, I was lying down on one pillow trying to rest when having a pots flare up. He explained that yes, fainting was from the tight vessels in the brain cutting off blood and oxygen flow to the brain--it's a hyper pots thing.) However, if I were to keep standing (providing I haven't fainted in the first four minutes--I'm a fainter) for some time--perhaps fifteen to twenty minutes--I may (not always) experience a drop in blood pressure--though not a big drop, perhaps around high 140's/high 70's-- as venous pooling occurs. Hyper potsies can have "lazy" vessels, too, vessels that lack good tone, that have an inability to maintain adequate tightness--thus, greater-than-normal amounts of blood pools in the lower body the longer you stand, and quite understandably the more blood that accumulates in the body, the less blood is available for circulation decreasing the pressure within the vessels. All this can translate into pre-syncope symptoms and syncope. (And, for whomever asked why at the end of her tilt she has sudden drop in BP--this is the very purpose of tilt tests, as the nature of the test is to see if one's body can "handle" standing, which one can if they don't have significant pooling. That's why--as I've been told--hyper potsies tend to "crash" at the end of a long ten minute Imagine a garden hose: You can turn in on full blast and the water pressure inside the hose would be very high. You can turn down the faucet and even though the diameter of the hose didn't change, the amount of water flowing through it did, so the water pressure is lower. That's why the drop in blood pressure--hyper potsies can experience this. But--and I quote from an article written by Grubb and his team from the Circulation Journal published by the American Heart Assoc, "It should be noted that many patients with orthostatic intolerance will not demonstrate orthostatic hypotension. Instead, they may display no change, as small decline, or even a small increase in pressure."...... See, a pots diagnosis isn't made based solely on a patient presenting with orthostatic hypotension, as there are other autonomic dysfunctions that cause such hypotension out there. Rather, pots involves far more than simply heart rate/blood pressure issues, as you all know so many other body systems are involved--digestion, urinary, inner temperature control, etc.... What's important to realize is that peops with hyper pots will have abnormally increased norepinephrine levels, and such is not present in neuropathic/partial dysautonomic pots. Even though the "high" rate for diagnostic purposes changes per institution, the fact remains that diagnosis of hyper pots is not made solely on norepinephrine levels--that is only a piece of the puzzle, as other symptoms are specific to hyper pots differentiating it from neuropathic/partial dysautonomic pots (i.e. history of gradual, progressive onset of symptoms, anxiety, significant tremor, cold, sweaty extremities when upright, 50% have increased urinary output when upright, orthostatic hypertension (increased blood pressure upon standing, migraines, and strong family history of similar symptoms). All of this is considered when a diagnosis is made, not just the serum norepinehrine levels. It's like this: If you notice one afternoon that you have a headache and you feel a little fevered--like you're coming down with something, getting sick--and you check your temperature and it's 102.9. A fever of 102.9 doesn't automatically mean that you have Tuberculosis, as you have to look at other symptoms--cough, night sweats?? 102.9 doesn't automatically mean that you have appendicitis--abdominal pain, nausea, vomiting?? Even though having a fever is characteristic of both above mentioned infections, the other symptoms offer clues as to what infection process is going on in the body. Pots is much like that--in the case of pots, a diagnosis of hyper pots can't be made solely on one norepinephrine level.

That's enough for now....

[McBlonde]

"People with hyper pots will have abnormally increased norepinephrine levels, and such is not present in neuropathic/partial dysautonomic pots. Even though the "high" rate for diagnostic purposes changes"

For my clarifications.... people dx'd with Neuropathic/partial dysautonomic POTS do NOT have abnormally high levels of norepinephrine?