Hyperadrenergic Pots

[HopeSprings]

I pretty much thought I had this based on norepinephrine testing, but recently realized the articles say you need high BP too. I don't have high BP, so am I probably NOT HyperPOTS? My understanding is that medications/treatment recommendations may be different for the Hyperadrenergic version. Thanks.

[MamaTrain]

It can be quite confusing if you ask me. My BP is usually on the lower side of things. When I get up in the morning I have the drop in BP with the big HR increase. However when I finally did my TTT I was surprised when they said my BP actually went up with my 45+ beat increase. My norepi levels were just shy of the "offical" hyper POTS reading of 600. She said I lean towards the hyper side but also have low BP at times as well. Clear as mud I tell you! Are you sensitive to stimulants?

KC

[yuliya]

I would say that I lean toward the hype POTS but I have never been tested for the noriprnephrine, but lately my bp is all over the place with weird narrow pulse pressures. I don't know but I fell like this summer is going to kill me lol. I feel so bad lately.

[HopeSprings]

"Are you sensitive to stimulants?"

I dunno, what would be an example of a stimulant? Probably would be, given my hypersensitivity to everything else!

[janiedelite]

The most common stimulant would be caffeine. I have hyperadrenergic POTS, elevated BP on standing, and norepinephrine levels of 254 supine and 1089 standing.

[HopeSprings]

"The most common stimulant would be caffeine. I have hyperadrenergic POTS, elevated BP on standing, and norepinephrine levels of 254 supine and 1089 standing."

Oh duh, I forgot about caffeine ! I have coffee every morning and it helps a lot with brain fog and probably my low BP - though I think it probably contributes to tachycardia and racey feelings. It's a catch 22. Hmm, I don't know what to make of my results - I definitely don't ever have high BP, but norepinephrine was 408 supine and 1001 upright. Of course there is no DOCTOR to ask this question to.

[E246]

i have only just been diagnosed with this type of pots - what meds do you take and any other advise?

[kluesyk]

I have hyperadrenergic pots and a small amount of clonidine seems to help me. I also drink 2 cups of coffee a day ( I have blood pooling in my lower abdomen and legs which the coffee seems to help with). I drink gatorade and add celtic sea salt to my diet also. I eat 6 small meals a day, large meals really set off my problems and I try to avoid white carbs, sugar and eat more protein and veggies.

Compression hose helps me stay upright longer without the hyperadrenergic response getting set off. When it does happen,(tachycardia, high blood pressure, shaking, nausea, flushing and that "I am going to pass out if I don't sit down soon feeling", I can take 1/2 of a xanax and it will help a lot. I also use Zofran for nausea, and Relpax for migraines.

And last which is very strange is ICE. I can eat ice and put ice packs on me when I have an episode and it helps tremedously.

Hope this helps, although everyone seems to be different in what meds can help them. I tried so many before and they did not help or made me worse.

[ramakentesh]

This diagnosis is almost irrelevant since nearly everyone with POTS has increased sympathetic drive on standing, thus a mild hyperadrenergic state.

The diagnosis of hyperadrenergic POTS based on norepinephrine levels alone is a misnomer from fairly old and out-dated literature. Mayo dont recognise Hyperadrenergic POTS as an entity; and the discovery of a large portion of Hyper POTS patients having LFP (low flow POTS) mediated by angiotensin II's effects on neuronal nitric oxide and vascular Hydrogen sulfide results in a hyperadrenergic state without increased norepinephrine levels in some cases.

The characteristics of interest seem to be postural hypertension on standing, sensitivity to stimulants and hypertensive responses to stress and exercise. if you have these, then you have what should be clearly termed Hyperadrenergic POTS.

If you have this, get your angiotensin II levels checked. if they are normal, then look at other vascular competitors of nitric oxide such as Assymetric dimethylarginine, and then perhaps NET deficiency.

[HopeSprings]

Well and here's another thing I don't get. There is an inconsistency between what the POTS experts are calling high norepinephrine and what the lab reference range is. POTS experts say over 600 (upright) is often found in POTS patients, which they say is abnormal, but the reference range on my lab work from Quest Diagnostics says normal is 70-750 supine, but 200-1700 if standing. Mine was 1001, which according to Quest Diagnostics is perfectly fine. What to make of this?

[lgtaylor100]

I really don't know what type of POTS I have. What interests me is are the meds that help different depending on what kind of POTS you have?

[RockiesGirl]

I do not know about all of this but after my Dysautonimic testing (they do not have the best facilities here in CO) the dysautonomic doctor told me I have Adrenergic Autonomic Polyneuropathy and Cholinergic Autonomic Neuropathy. My BP started out at 98/70 HR of 69 and after several minutes on the TTT it was 170/98 with a HR in the 160's. During the course of TTT, at the end my BP went as high as 188/132 with a lower HR of around 118ish, at which time I thought my eyes were going to pop out of my head and I actually broke a few blood vessels in my eye. So, she said I have the High Heart Rate of POTS but this other diagnosis as well Don't understand it, but I have noticed that every time I go have tests done, it puts soooo much strain on my body my symptoms get worse. Or it might be because of the unbelievable amount of stress I'm under

[ramakentesh]

Well and here's another thing I don't get. There is an inconsistency between what the POTS experts are calling high norepinephrine and what the lab reference range is. POTS experts say over 600 (upright) is often found in POTS patients, which they say is abnormal, but the reference range on my lab work from Quest Diagnostics says normal is 70-750 supine, but 200-1700 if standing. Mine was 1001, which according to Quest Diagnostics is perfectly fine. What to make of this?

This whole sentence is based on outdated information and references.

No POTS expert is now suggesting that Hyperadrenergic POTS is based on an upright norepinephrine levels upright above 600 for the reasons I explained above. if you want to understand POTs the best option is to stay abreast with the research - specifically in relation to angiotensin II.

[HopeSprings]

"This whole sentence is based on outdated information and references. No POTS expert is now suggesting that Hyperadrenergic POTS is based on an upright norepinephrine levels upright above 600 for the reasons I explained above. if you want to understand POTs the best option is to stay abreast with the research - specifically in relation to angiotensin II."

What? I'm not saying it's an accurate measure of anything, just quoting what I have read in article after article. Dr. Stewart is the one who sent me for that test (laying and standing norepinephrine) and he said those results were my most significant finding. I don't think Docs have thrown it out yet. This is on the current Vanderbilt website about POTS:

"The hyperadrenergic subgroup of OI is characterized by a clinical spectrum including attenuated plasma renin activity and aldosterone, reduced supine blood volume coupled with dynamic orthostatic hypovolemia, elevated plasma norepinephrine and epinephrine, impaired clearance of norepinephrine from the circulation and evidence of partial dysautonomia."

Above was from this site:

http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=4788

Also, this is from 2009/2010 - not so long ago.

http://resources.metapress.com/pdf-preview.axd?code=86n83x43u0782833&size=largest

[StacyRN]

This is for Train Boys Mom Rocks:

I read your post saying that you were just shy of the 600 pg/ml norepi level for Hyperadrenergic POTS... I want to clarify that this is not the level for Hyper. POTS, this is the norepi level that is typical in any type of POTS. See this article:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/

"We often measure plasma norepinephrine levels in both a supine and standing position (at least 15 minutes in each position prior to blood sampling). The supine norepinephrine is often high normal in patients with POTS, while the upright norepinephrine is usually elevated (>600 pg/ml), a reflection of the exaggerated neural sympathetic tone that is present in these patients while upright."

Those with true Hyperadrenergic POTS (or Primary Hyperadrenergic POTS) usually have levels of 1,000 or more pg/ml.

[StacyRN]

"The most common stimulant would be caffeine. I have hyperadrenergic POTS, elevated BP on standing, and norepinephrine levels of 254 supine and 1089 standing."

Oh duh, I forgot about caffeine ! I have coffee every morning and it helps a lot with brain fog and probably my low BP - though I think it probably contributes to tachycardia and racey feelings. It's a catch 22. Hmm, I don't know what to make of my results - I definitely don't ever have high BP, but norepinephrine was 408 supine and 1001 upright. Of course there is no DOCTOR to ask this question to.

Naomi, have you ever taken your bp just when you stand up? It doesn't necessarily go really high, but what happens with POTS is that usually the systolic pressure (top number) goes up just a little, but the diastolic (bottom number) can go up significantly... mine will go from lying down 110/70, to standing up 120-130/100-115. So the pulse pressure narrows, it's a result of sympathetic overshoot when we stand up.

[StacyRN]

I would say that I lean toward the hype POTS but I have never been tested for the noriprnephrine, but lately my bp is all over the place with weird narrow pulse pressures. I don't know but I fell like this summer is going to kill me lol. I feel so bad lately.

Narrow pulse pressures are normal upon standing up with POTS

[StacyRN]

I have hyperadrenergic pots and a small amount of clonidine seems to help me. I also drink 2 cups of coffee a day ( I have blood pooling in my lower abdomen and legs which the coffee seems to help with). I drink gatorade and add celtic sea salt to my diet also. I eat 6 small meals a day, large meals really set off my problems and I try to avoid white carbs, sugar and eat more protein and veggies.

Compression hose helps me stay upright longer without the hyperadrenergic response getting set off. When it does happen,(tachycardia, high blood pressure, shaking, nausea, flushing and that "I am going to pass out if I don't sit down soon feeling", I can take 1/2 of a xanax and it will help a lot. I also use Zofran for nausea, and Relpax for migraines.

And last which is very strange is ICE. I can eat ice and put ice packs on me when I have an episode and it helps tremedously.

Hope this helps, although everyone seems to be different in what meds can help them. I tried so many before and they did not help or made me worse.

This could have been me writing this! I do the exact same things. Only in addition to clonidine, I take propranolol.

[HopeSprings]

"Naomi, have you ever taken your bp just when you stand up? It doesn't necessarily go really high, but what happens with POTS is that usually the systolic pressure (top number) goes up just a little, but the diastolic (bottom number) can go up significantly... mine will go from lying down 110/70, to standing up 120-130/100-115. So the pulse pressure narrows, it's a result of sympathetic overshoot when we stand up."

I am going to have to check this out. I'm pretty sure neither # goes up significantly, but I have caught narrow pulse pressures - my understanding is under 20 is narrow? And it did correspond with feeling badly. When I looked up narrow pulse pressure, I came up with people who are in shock or bleeding to death can get this. I wonder if standing creates a similar type reaction in us because of the blood pooling/dropping.

[StacyRN]

"Naomi, have you ever taken your bp just when you stand up? It doesn't necessarily go really high, but what happens with POTS is that usually the systolic pressure (top number) goes up just a little, but the diastolic (bottom number) can go up significantly... mine will go from lying down 110/70, to standing up 120-130/100-115. So the pulse pressure narrows, it's a result of sympathetic overshoot when we stand up."

I am going to have to check this out. I'm pretty sure neither # goes up significantly, but I have caught narrow pulse pressures - my understanding is under 20 is narrow? And it did correspond with feeling badly. When I looked up narrow pulse pressure, I came up with people who are in shock or bleeding to death can get this. I wonder if standing creates a similar type reaction in us because of the blood pooling/dropping.

Yes, narrow pulse pressures don't feel good... it means that the pressure in your heart during the emptying stage,when the blood is supposed to be pushed out to your body, too much of it stays in the heart, making the diastolic pressure higher than it should be.