Author Topic: POIS as a subset of POTS/Neurally Mediated Hypotension  (Read 10933 times)

haidcat

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POIS as a subset of POTS/Neurally Mediated Hypotension
« on: September 19, 2012, 10:37:15 AM »
Hey guys read this article please when you get the chance: http://www.njcfsa.org/wp-content/uploads/2010/08/4-11-Patient-Unofrmationon-Neurally-Mediated-Hypotension-and-its-Treatment.pdf

I can easily say that all of these things cause me to get typical POIS symptoms: Brain fog, muscle pain, heart palps, light headed, etc

Neurally mediated hypotension occurs in susceptible individuals in the following settings:
* after prolonged periods of quiet upright posture (such as standing in line, standing in a shower, or
even sitting up for long periods),
* after being in a warm environment (such as in hot summer weather, a hot crowded room, a hot
shower or bath),
* after exercise,
* after emotionally stressful events (seeing blood or gory scenes, being scared or anxious).
* some individuals get symptoms soon after eating, when blood flow has shifted to the intestinal
circulation during the process of digestion.

Just throw in orgasm into that list and that describes my life.

haidcat

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Re: POIS as a subset of POTS/Neurally Mediated Hypotension
« Reply #1 on: September 19, 2012, 10:47:15 AM »
This explains why my "no MSG" diet helped so much with POIS. IT really had nothing at all to do with MSG, but more with the fact that it forced me to eat nonprocessed food with no extra sugar/refined carbs added.

Simple carbs(aka High glycemic index foods) dump into the intestines much faster causing alot more blood to enter the abdomen, meaning that less blood is going to your muscles and your brain.

Alot of people with POTS/hypotension have to go on a low carb/low glycemic index diet, ALONG with eating small meals throughout the day rather than large ones(again its all about where the blood is going, larger meals, means less blood going to your brain).

This also fits in nicely with the norepinephrine idea, and explains why so many of our treatments are working. ITs all about norepi/adrenaline and blood pressure.

Decrease the sympathetic response(adrenaline/norep) and make sure you constantly have a good amount of blood going to your brain, and it seems POIS can be effectively managed.

kurtosis

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Re: POIS as a subset of POTS/Neurally Mediated Hypotension
« Reply #2 on: September 19, 2012, 01:04:30 PM »
This explains why my "no MSG" diet helped so much with POIS. IT really had nothing at all to do with MSG, but more with the fact that it forced me to eat nonprocessed food with no extra sugar/refined carbs added.

Simple carbs(aka High glycemic index foods) dump into the intestines much faster causing alot more blood to enter the abdomen, meaning that less blood is going to your muscles and your brain.

Alot of people with POTS/hypotension have to go on a low carb/low glycemic index diet, ALONG with eating small meals throughout the day rather than large ones(again its all about where the blood is going, larger meals, means less blood going to your brain).

This also fits in nicely with the norepinephrine idea, and explains why so many of our treatments are working. ITs all about norepi/adrenaline and blood pressure.

Decrease the sympathetic response(adrenaline/norep) and make sure you constantly have a good amount of blood going to your brain, and it seems POIS can be effectively managed.

Cutting out MSG may improve the symptoms of elevated norepinephrine. Worst thing to throw on an already over-stimulated nervous system would be glutamate.

If you want rarity then hyperadrenergic POTS (elevated norepinephrine) would apply to 10% of POTS sufferers. As far as I know POTS effects about 1% of teens (who mostly grow out of it) and about 0.1% of adults. Hyperadrenergic POTS with elevated norepinephrine would effect 0.01% of adults i.e. it's rare and likely to be missed. I've also read that doctors often believe it's an anxiety disorder (ring any bells :))

http://www.hospitalsoup.com/health-conditions/postural-orthostatic-tachycardia-syndrome-by-dr-blair-grubb/

So, it's not clear what causes POTS. POTS sufferers with hypotension have found that increased sodium intake (salt + C???) appears to help.
I had an arrhythmia as a child but, oddly, I notice that the biggest problem I have when exercising is breathlessness and that I find serious difficulty in doing press ups (and stuff like surfing) because of increased breathlessness and dizziness. I'm going to get a tilt table test.

BTW I've found a parallel universe over at
http://forums.dinet.org/index.php?/topic/19324-the-complete-guide-to-pots-therapies/page__st__30__p__191202__hl__ginkgo__fromsearch__1#entry191202

Discussion on use of ginkgo and other treatments that look scarily similar for hyperadrenergic POTS :)

haidcat

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Re: POIS as a subset of POTS/Neurally Mediated Hypotension
« Reply #3 on: September 19, 2012, 02:03:27 PM »
Very interesting on the ginkgo.

What has helped me alot is: 1. drinking alot of water 2. taking 1/2 teaspoon of salt and potassium chloride every morning and evening and 3. watching what I eat.

These three things have helped my POIS more than anything and these 3 things happen to be ways to control POTS
« Last Edit: September 19, 2012, 02:06:20 PM by haidcat »

kurtosis

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Re: POIS as a subset of POTS/Neurally Mediated Hypotension
« Reply #4 on: September 19, 2012, 04:06:15 PM »
Very interesting on the ginkgo.

What has helped me alot is: 1. drinking alot of water 2. taking 1/2 teaspoon of salt and potassium chloride every morning and evening and 3. watching what I eat.

These three things have helped my POIS more than anything and these 3 things happen to be ways to control POTS

hhmm, I think it depends on what kind of POTS a person has and there's still huge confusion over what causes POTS.  I tried those Nuun electrolyte packs last year. I was thinking that POIS may be a parasitic infection or something else that depletes electrolytes. I felt a bit of an improvement but it was marginal.

I've added theanine to my carnitine complex and it feels just great. B, vitamins, Carnitine complex (with taurine) & (150mg) theanine in the morning and then some krill oil and ginkgo at about 10:00.  This combination seems to just dissolve stress.

The ideal would be some form of decaffeinated green tea extract with both theanine and catechins (MAO-B inhibitors). Matcha green tea is good but I can't drink much as caffeine puts me on edge. I can only handle it when I get stuff like taurine and theanine with it. (promoters of inhibitory neurotransmitters). Even then, caffeine makes me sweat and feel jittery.

Yesterday I felt a bit stressed so I had another theanine which just seemed to magic it away.

If I have POTS I'm guessing it's hyperadrenergic as supplements that meet my goals of increasing GABA, dopamine and lowering norepinephrine seems to make me happier and more productive. I was given some powerful opiate based pain killers after I hurt my back a few years back. Theoretically I should have been useless that week but I was actually very productive and my colleagues joked I should hurt my back more often. :D

Stef

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Re: POIS as a subset of POTS/Neurally Mediated Hypotension
« Reply #5 on: September 19, 2012, 04:20:47 PM »
Hi All!

POTS (postural orthostatic tachycardia syndrome) is a rare disorder that is well-known to NORD.  I've personally spoken with people who, literally, cannot be upright -- even sitting upright -- for any length of time. 

One man -- a computer/software specialist -- works from his bed, lying flat, with a specially-made computer table that enables him to use his laptop more comfortably.

There are degrees of POTS severity, and some sufferers are severely incapacitated -- like that young man.

Here's a link to an abstract of a good article on the hyperadrenergic form of postural orthostatic tachycardia syndrome from PubMed --
http://www.ncbi.nlm.nih.gov/pubmed/21947988
It was written in 2011 by a group of cardiologists from University of Toledo Medical Center, Toledo, OH, USA. Any of you can download the full text in a pdf file for free by clicking on the top right corner icon -- "full text available at."
 
Some quotes that I found of interest from the article are:

"Although the exact etiology remains elusive, we know that the syndrome of postural orthostatic tachycardia is not a single clinical entity, but rather a heterogeneous group of various related clinical syndromes having a final common presentation of orthostatic intolerance."

(***Just fYI for those who may not know -- "orthostatic intolerance" here means that one can't tolerate standing up.  There are pulse and blood pressure changes that make it basically impossible.)

"Hyperadrenergic POTS patients report significant tremor, anxiety, and cold sweaty extremities when upright. Many will report a significant increase in urinary output after being upright for even a short period of time, and over half suffer from true migraine headaches."

"Patients with hyperadrenergic forms (of POTS) tend to have diarrhea rather than constipation...In our series, almost 30% of patients had gastrointestinal symptoms in form of nausea, bloating and diarrhea."

The authors also noted --
 
"In our study, most patients demonstrated symptoms of adrenergic overactivity in the form of palpitations, tremulousness and almost one third of our patients were hypertensive, receiving more than two medications to control their blood pressure."

I can see why one could form the conclusion that POIS may be a subset of POTS -- either the hyperadrenergic form or the more common -- but still rare -- form of POTS that results from autonomic nervous system dysfunction -- causing a drop in blood pressure. There are some similarities in symptoms of POIS.

Some questions that I have are  -- does POTS (either form) result from ejaculation? Does ejaculation lead to the same measurable findings as those in the established forms of POTS? Does that feeling of "brain fog" accompany POTS?

Perhaps some of you would be willing to take your blood pressure at home (with a home blood pressure kit) and also take your pulse rate -- after ejaculation, at regular intervals, for about 1-2 hours. You'd also need to note if there were symptoms of difficulty standing upright (i.e. feeling faint, feeling like you're going to fall down, etc.)  The article advises that it's after 10 minutes (or less) that these symptoms usually become intolerable -- in other words, you've got to sit or lie down before you fall down.  I think this means that probably the best way to self-monitor after ejaculation would be to take your B/P and pulse sitting or reclining, then stand upright for ten minutes or so, then check your B/P and pulse while still standing  -- over a set period of time.  Not easy or pleasant -- but it might be very helpful in trying to figure out at least something measurable about POIS.

I don't know the answer, obviously, about if POIS is a subset of POTS -- I mention the questions and the suggestion of self-blood-pressure and pulse recording  because it's important to not jump to conclusions (stated with complete respect!).

Daveman always says, "What we have is POIS!" He's right, but finding MAJOR similarities in other disorders -- and/or self-monitoring measurable things like B/P and pulse in a scheduled way-- could shed some light.

In any event, those B/P and pulse reading could be very helpful in determining whether or not most -- if not all -- POIS sufferers share those measurable findings.

Kurtosis -- please let us know the results of your tilt-table test!

Stef

haidcat

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Re: POIS as a subset of POTS/Neurally Mediated Hypotension
« Reply #6 on: September 19, 2012, 04:37:07 PM »
Alot of the symptoms of POTS overlap with POIS including:
brain fog, heart palpitations, dizziness, light headedness, overwhelming fatigue,sweating, feel too cold, feel too warm,  burning eyes, dry eyes, muscle pain, muscle fatigue, frequent urination, diarrhea/constipation, indigestion, exercise intolerance, I mean the list goes on and on. Oh also people with POTS cant handle histamine very well either.

Technically calling POIS a subset of POTS is wrong because POTS means all those symptoms come upon standing. When I am out of POIS I dont feel dizzy upon standing.

I think the crucial thing here is like what you said nordnurse, there are alot of similiarities and that helps with identification of causes, and with treatments.

personally, I think POIS is a POTS-like disease that gets triggered by orgasms. Why does orgasm trigger the same symptoms as POTS/neurally mediated hypotension?

There could be multiple reasons, but i think its either one of these: 1. the hormonal/neurotransmittor changes caused by orgasm trigger temporary autonomic dysfunction OR 2. semen hitting the urethra triggers an allergic cascade, activating mast cells all over the body and this mast cell trigger causes POTS like symptoms.

Interestingly POTS and mast cell disorders have alot of similarities and there is dialogue between the two communities.

In conclusion, we need alot of medical research on this, but I feel pretty comfortable in stating, based upon what everyones symptoms are and what the cures are, that POIS is some type of POTS-like autonomic dysfunction triggered either by hormones/neurotransmittors AND/OR mast cell activation throughout the body.

Heres an article on POTS and MAST cell disorders, notice how they state that these women get symptoms after sexual intercourse. http://hyper.ahajournals.org/content/45/3/385.full
« Last Edit: September 19, 2012, 04:41:20 PM by haidcat »

Stef

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Re: POIS as a subset of POTS/Neurally Mediated Hypotension
« Reply #7 on: September 19, 2012, 06:50:35 PM »
Haidcat,

I think it's important for everyone to keep in mind that having symptoms of a particular disorder -- and having the disorder itself -- are two different things. 

As a simple example, strep throat and a mononucleosis sore throat can feel and look exactly the same, but they have entirely different causes and treatments. Acid indigestion and a heart attack often present with the same symptoms -- but they obviously aren't and there is no relationship between the two.

I don't think one can state that POIS is either an autonomic dysfunction or a mast cell activation disorder -- or a combination of the two. There's no proof of any of it, because no basic scientific research has been done on POIS.

This is why the POIS research grant is so vitally important.

I do respect your thoughtfulness on this issue, and who knows -- you may be on the right track! That's why I suggested the self-monitoring regimen (blood pressure and pulse) shortly after ejaculation, while in POIS. It might reveal something measurable, rather than subjective.

Until the scientific research is done -- no one knows what POIS is, what causes it, and how to really treat it. It's all conjecture at this point.

Stef






haidcat

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Re: POIS as a subset of POTS/Neurally Mediated Hypotension
« Reply #8 on: September 19, 2012, 06:54:49 PM »
Agreed. Obviously funded research is the only way to conquer this thing. I just like to post my theories because it might help people who are suffering at the moment to find some treatments that may work for them besides abstaining from sexual activity.
But yes, as a med student, I completely see what your saying, and I admit I do get carried away sometimes with the theories

kurtosis

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Re: POIS as a subset of POTS/Neurally Mediated Hypotension
« Reply #9 on: September 20, 2012, 04:59:05 AM »
This is a very interesting thread. Thanks Stef for your contribution :)

There are several possible causes of POTS and two distinct forms of the condition. Looking at the conditions it could be any disease or illness that could damage the autonomic nervous system. This is huge. One could potentially develop POTS symptoms from many many diseases including
" HIV, Diptheria, Chagas Disease, Lyme Disease, and Guillain Barre Syndrome" and autoimmune diseases such as " Diabetes, Multiple Sclerosis, Sjogren's Syndrome, Lupus, Celiac Disease".
There's also the possibility of adrenal tumours. This is something I've said a few times and I'll go again :)
It is entirely possible that POIS is a syndrome of effects which are caused by other conditions meaning that what works for one sufferer may not work at all. Indeed, looking at POTS should make us realise that the treatment for one person could actually make another sufferer worse.. I.e. a vasodilator could be a good idea for hyperadrenergic POTS but a really bad idea for hypotensive POTS.

The online resources I've seen appear to describe treating POTS using an ensemble of different drugs to address symptoms and other drugs/treatments to address an underlying causative illness (if it can be identified).
So I think it's reasonable to say that POTS is not necessarily a cause but an effect.

However, if I look at the symptom list it's huge but I tick a lot of boxes.
Quote
Low blood pressure of any kind may promote the following:[3]
lightheadedness, sometimes called pre-syncope (pre-fainting) dizziness (but not vertigo, which is also called dizziness)[4]
exercise intolerance
extreme fatigue
syncope (fainting)
Excessive thirst (polydipsia)
Chronic or acute hypoperfusion of tissues and organs in the upper parts of the body are thought to cause the following symptoms:
cold extremities
chest pain and discomfort
disorientation
tinnitus
dyspnea
headache
muscle weakness
tremulousness
visual disturbances
Autonomic dysfunction is thought to cause additional gastrointestinal symptoms:
abdominal pain or discomfort
bloating[5]
constipation
diarrhea
nausea
vomiting
Cerebral hypoperfusion, when present, can cause cognitive and emotive difficulties. Symptoms that persist in the supine (recumbent) state are difficult to attribute to "cerebral hypoperfusion"
brain fog
burnout
decreased mental stamina
depression
difficulty finding the right word
impaired concentration
sleep disorders
Inappropriate levels of epinephrine and norepinephrine lead to anxiety-like symptoms:
chills
feelings of fear
flushing
overheating
nervousness
over-stimulation
So of these I've experienced quite a few including:

- lightheadedness
- breathlessness when exercising that's worse depending on my position.
- chest pain
- tinnitus
- headache & migraine
- muscle weakness
- constipation & diarrhoea
- nausea and dizziness - particularly following an O
- brain fog,
- depression
- decreased stamina and the need to lie down a lot
- 3 accidents due to dizziness
- a sleep disorder
- cold extremities and chills with intermittent sweats - neither appropriate based on the ambient temperature
- anxiety
- overeating
- intense nervousness and jitter


And my doctor insisted this was an anxiety disorder (check :))

I have fainted in the past but not from standing up. The really odd thing is that I can feel incredibly nauseous when I lie flat and exercises involving me lying at inclinations and trying to lift weights (bench press) are impossible. I can lift <50% of the weight I can from a sitting position but using the same muscles. The supervisor in the gym noticed there was a problem but wasn't sure what it was. He just advised me not to attempt it again.
My understanding of POTS is that it's not just standing up. It's an inability to regulate blood flow/pressure such that the problem is the degree of position change.

So a tilt table test would be useful. At the minimum, if a POIS sufferer was to be diagnosed with POTS they would have a currently accepted diagnosis that may benefit them in terms of medical care and or employer tolerance of their condition. That's why I think it's worth people checking to see if they have this. Obviously, POIS should be funded and researched also. Even if it's a sister disease of POTS or has POTS effects it's entirely possible it's treatable in some direct way, attacking the causes rather than trying to control the effects.

It's also probable that no matter of our conviction that we may have POTS, this may not identify a root cause of our illness which may be anything from autoimmune to benign tumours or hormonal disorders. It's clear that POIS specific research is required.

That's my 2 cents.

B_Daniel

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Re: POIS as a subset of POTS/Neurally Mediated Hypotension
« Reply #10 on: September 20, 2012, 09:54:21 AM »
I don't know about this one guys.  First off, I've never fainted.  I lived in Texas for most of my life and love the summer heat.  I enjoy saunas too and can typically stay in them as long as most people. 

Let's say I stand for too long and get bad POIS symptoms, wouldn't that also mean the symptoms would largely decrease as I lay down?  My symptoms do not go away that easily.

To me, POTS represents a regulation problem that largely spikes and wanes throughout the day.  My pois is more of a constant hell then good and bad.

and kurtosis, you said "If I have POTS I'm guessing it's hyperadrenergic as supplements that meet my goals of increasing GABA, dopamine and lowering norepinephrine seems to make me happier and more productive."  But I think that fits more closely with your dopamine depletion theory then POTS.

And lastly, there are tons of reasons why cutting msg out of your diet will make you feel better.  I agree though, it affects me significantly, but i think our bodies are just more sensitive bc we're already in a bad place, nothing more than that.  that doesn't sound very scientific, but that's how i think about it.  Let me explain how I look at it another way: If most people are operating at a 10, and they eat too much or eat high fructose corn syrup or eat msg or even smoke weed, they're bumped down from a 10 to a 7 and can still function.  If I smoke weed, eat msg, etc, I go from a 4 to a 1, and at a 1, I'm basically struggling to drive a car or hold a conversation.   

I guess we can speculate all day, but won't know until someone does that tilt table test, but these are just my thoughts.  All that said, I can sense some excitement from you guys, and want to say that I appreciate the effort you expend exploring these options for the benefit of all of us.

Stef

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Re: POIS as a subset of POTS/Neurally Mediated Hypotension
« Reply #11 on: September 20, 2012, 02:34:03 PM »
Agreed. Obviously funded research is the only way to conquer this thing. I just like to post my theories because it might help people who are suffering at the moment to find some treatments that may work for them besides abstaining from sexual activity.
But yes, as a med student, I completely see what your saying, and I admit I do get carried away sometimes with the theories

Hi haidcat,

That was a really sweet response!

It's so easy to get "carried away" with theories about POIS. It mimics many of the symptoms of other disorders  -- and is such a MISERABLE DISORDER! It makes sense for so many forum members to search for some explanation, come up with theories, and sometimes successfully find something that eases the symptoms for some (e.g. niacin, increasing fluids/adding salt, certain vitamin combinations).

This is the place to share theories about POIS, and to share possibly helpful vitamin/supplement/medicine regimens (with Demo appropriately leap in to remind people about the potential risks involved if the person posting doesn't do that first). 

So please don't stop sharing theories! 

I just felt it necessary to remind everyone that no one knows what POIS is, and that while it mimics POTS in several ways (in addition to mimicking other conditions) it is still is an "undiagnosed condition."

Research will solve that.

Best wishes to you with your medical studies!!,

Stef




 

kurtosis

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Re: POIS as a subset of POTS/Neurally Mediated Hypotension
« Reply #12 on: September 21, 2012, 04:45:05 AM »
Haidcat,
There's another way to look at the affliction of POIS, for you anyway.
Many medical students will treat their studies as something abstract. It will be incredibly hard work and they'll focus on the prize which is a prestigious profession and earning a high salary. But you're engaged in a form of medical research before you even complete your degree and you have a huge personal stake in learning about neurology and endocrinology. The life your saving is your own & you'll never forget what it's like to have other doctors doubt your symptoms and come up with lazy answers to your questions.

When we beat POIS (and we will) you'll be a better doctor for your experiences :)

Stef

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Re: POIS as a subset of POTS/Neurally Mediated Hypotension
« Reply #13 on: September 21, 2012, 06:19:59 AM »
Haidcat,
There's another way to look at the affliction of POIS, for you anyway.
Many medical students will treat their studies as something abstract. It will be incredibly hard work and they'll focus on the prize which is a prestigious profession and earning a high salary. But you're engaged in a form of medical research before you even complete your degree and you have a huge personal stake in learning about neurology and endocrinology. The life your saving is your own & you'll never forget what it's like to have other doctors doubt your symptoms and come up with lazy answers to your questions.

When we beat POIS (and we will) you'll be a better doctor for your experiences :)

Kurtosis -- you've echoed my thoughts exactly!!! :) 

Stef

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10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

berlin1984

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Re: POIS as a subset of POTS/Neurally Mediated Hypotension
« Reply #15 on: August 31, 2020, 02:27:41 PM »
Low Brain Blood Flows and Orthostatic Intolerance Ubiquitous in Chronic Fatigue Syndrome (ME/CFS) (2020)
https://www.healthrising.org/blog/2020/08/30/chronic-fatigue-syndrome-orthostatic-tolerance-dizziness/
"In 2018, Novak found that a considerable number of possible postural orthostatic tachycardia syndrome (POTS) patients had normal hearts rates but reduced CO2 levels and reduced blood flows to the brain." (=> Breath in bag or Buteyko breathing?)
"The success phenylephrine had in removing all symptoms of orthostatic intolerance during a tilt table test is a bit hard to understand given that the drug is a vasoconstrictor. It may have helped with baroreceptor activation or with blood vessel problems in the body."
"The cause of the reduced CO2 levels is unclear but could be due to a number of factors (baroreceptor problems, problems with signaling, metabolic acidosis, a result of low blood flows to the brain, etc.)."

https://en.wikipedia.org/wiki/Phenylephrine
"Phenylephrine is a medication primarily used as a decongestant, to dilate the pupil, to increase blood pressure, and to relieve hemorrhoids. While marketed as a decongestant, taken by mouth at recommended doses it is of unclear benefit for hay fever."
"Phenylephrine is a sympathomimetic drug, which means that it mimics the actions of epinephrine (commonly known as adrenaline) or norepinephrine. Phenylephrine selectively binds to alpha-1 receptors which cause blood vessels to constrict"

I'm trialing a medicine with Paracetamol+Phenylephrine now for POIS, let's see tomorrow how I feel. (You probably can't buy Phenylephrine alone).
I'm also taking electrolytes and Iberogast as this is something that seems to help me too.
For me personally, POIS seems to be very related to this "feeling that i need to lie down and I can't keep standing". I was never diagnosed with POTS or CFS, but I see the parallels. (The mental problems of POIS I can mostly workaround with Adaptogens)