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Hyperadrenic Pots


  

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Hmm, silly forum polls (if you can't answer one question, it doesn't let you fill out the poll). Can't answer because my levels weren't tested, but the doc says hyperPOTS based on the immediate swing of my heart rate from 80 to 120 within the first 30 seconds of my TTT (it stayed there, which is why it wasn't just a normal standing response), plus other symptoms. But I also have pooling issues, "it's complicated." I'd like her to test them, but it may be tricky and I'm not sure she's interested.

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I was never tested and did not even have a TTT. The doc at Vanderbilt dxed me as having H-POTS based on my BP rise during the "poor-man's tilt" and my other tests and symptoms. I do respond robustly to melatonin: it will drop my average HR by 20 bpm. This data was captured on a 24 hour Holter monitor before I was taking any other meds.

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Would be good to have a standing NE level of 600-800 as I think a lot of us may fall into that category.

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I was diagnosed as Hyper Pots.....had elevated catecholamines at baseline and on tilt.....when tilted my HR goes over 30 and my BP rises significantly then falls....my specialist said this is deemed hyper....in fact when they gave me only a tiny dose of isopropolol? (similar to adrenaline) I had one of the strongest reactions he had seen (it was nasty lol!)

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Rich I often can't vote in your polls because the options available don't work for me.

I was considered HyperPOTS at CC. But I do not have high BP.

My supine NE was 125 pg/ml.

My standing NE was 613pg/ml.

My supine epinephrine was <10pg/ml.

My standing epinephrine was 22 pg/ml.

Dopamine was <20 both supine and standing.

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Rich I often can't vote in your polls because the options available don't work for me.

I was considered HyperPOTS at CC. But I do not have high BP.

My supine NE was 125 pg/ml.

My standing NE was 613pg/ml.

My supine epinephrine was <10pg/ml.

My standing epinephrine was 22 pg/ml.

Dopamine was <20 both supine and standing.

Dana,

What chose do you think is missing, was it that I used Nmol? I didnt have time to include the conversion measurements as well. Here is a coverter is anyone needs it http://www.soc-bdr.org/rds/authors/unit_tables_conversions_and_genetic_dictionaries/e5196/index_en.html

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In the US, the bottom range for HyperPOTS at some facilities is 600 pg/mL. The numbers you are using looks like pg/mL but you have them listed as nmol/L. Even if the numbers are right, my NE levels were 613, so I can't put an option in since you started at 800 and only go up.

Also this website gives me much different numbers than what you have listed (when converting from pg/mL to nmol), so I'm just confused. :wacko:

http://www.endmemo.com/medical/unitconvert/Norepinephrine.php

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....in fact when they gave me only a tiny dose of isopropolol? (similar to adrenaline) I had one of the strongest reactions he had seen (it was nasty lol!)

beta 1 sensitivity is very common and often confused with hyper presentations because the subjective feelinsg are the same.

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Quote

....in fact when they gave me only a tiny dose of isopropolol? (similar to adrenaline) I had one of the strongest reactions he had seen (it was nasty lol!)

"beta 1 sensitivity is very common and often confused with hyper presentations because the subjective feelinsg are the same. "

........just to be clear this was not the only finding that led to my specialist classifying me as Hyper Pots.....it was based on many lab findings, autonomic tests and clinical presentation, consults with Vandy...etc....after my last follow up he said I am definately in the 10% population of patients who has the Hyper form and that my treatment would be more difficult and indefinate ....on top of that I am 1 out of 10 of the most progressive and complicated cases he has seen. Hyper patients do exist...not everyone is just straight POTS

Bren

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So far I think it's far to say my poll is showing that 6 out of the 7 people who were tested were hyperPOTS. Obviously I'm hoping to get a much bigger response, perhaps I'm going to take off the question about the actual catecholamine levels because not everyone may have their results handy or in nmols...

Maybe I ask as a 2nd question, if people get adrenaline rushes.

I dont see how at catecholamine levels can be normal for any POTS person. Catecholamine levels are the chemicals of our ANS and since our ANS is dysfunctional how can our catecholamine levels not be?

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Keep in mind some folks may have issues with acetylcholine (pre-ganglionic sympathetic NS and overall parasympathetic NS, as well as post-ganglionic sympathetic NS in the (p)s(e)udomotor neurons triggering sweat glands, hence QSART), which can't be directly tested with a blood draw the way that dopamine, norepi, and epi can... Personally, for the rest I suspect sample bias, both in terms of who gets tested and who shows up to vote in this thread :^)

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Keep in mind some folks may have issues with acetylcholine (pre-ganglionic sympathetic NS and overall parasympathetic NS, as well as post-ganglionic sympathetic NS in the (p)s(e)udomotor neurons triggering sweat glands, hence QSART), which can't be directly tested with a blood draw the way that dopamine, norepi, and epi can... Personally, for the rest I suspect sample bias, both in terms of who gets tested and who shows up to vote in this thread :^)

True, acetycholine, is another neurotransmitter used by ANS. I wonder how many people have had the antibody titer for nic acetylcholine? Or better yet how many have heard of it if they haven't been to any of the major clinics... Maybe I'll poll this too :)

Not sure what bias you are referring to in sample or on poll taking, since this poll is public you can see who polls what answer..

Also "on stimulation by acetylcholine, the suprarenal medulla releases epinephrine and norepinephrine"

For anyone who is interested here is great new study on 3 POTS patients with "Autoimmune Autonomic Ganglionopathy With Reversible Cognitive Impairment" http://archneur.jamanetwork.com/article.aspx?volume=69&issue=4&page=461

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And it doesn't surprise me that nearly half the people that took poll have never been tested. It's part of what irks me about how well the clinical community is handling and testing POTS patients. They are just experimenting with meds on us like guinea pigs without knowing is we specific problems first. In the link above Dr Grubb specifically says that the treatment for hyperadrenic POTS is completely different and salt loading doesnt help as much, same goes for some types of beta blockers...

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My antibody titer was negative, though I (hilariously) haven't had my norepi/epi/dopamine tested.

(the bias I meant was mostly that folks who are interested in the topic will take the poll/comment here, folks with certain presentations may have been more likely to be tested, etc. not bias in a bad way, just sample bias)

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The poll is pointless because I realised a long time ago that many patients and some doctors presume that any elevations in NE or any signs of sympathetic excess demonstrate hyper POTS. Early work by Jacob suggested denervation hypersensitivity where neuropathic POTS patients have elevated NE. Neuropathic POTs patients also seemed to have impaired NE clearance and normal levels in another study.

Hypovolumic states may also cause symptoms consistent with what people call hyper POTS.

I think we are talking about definites in an environment that is evolving and changing constantly.

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The poll is pointless because I realised a long time ago that many patients and some doctors presume that any elevations in NE or any signs of sympathetic excess demonstrate hyper POTS. Early work by Jacob suggested denervation hypersensitivity where neuropathic POTS patients have elevated NE. Neuropathic POTs patients also seemed to have impaired NE clearance and normal levels in another study.

Hypovolumic states may also cause symptoms consistent with what people call hyper POTS.

I think we are talking about definites in an environment that is evolving and changing constantly.

This is exactly why I'm going the poll, because it doesn't matter if its Neuropathic or whatever is causing it, my point the issues with NE are most likely more frequent than 30%. Obviously having high NE can point to many reasons and maybe those reasons mean further hypersensitivity, maybe but it definitely need to be studied more. So there is a point mate even those its not to find a cure or whatever ;)

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