Orthostatic intolerance

There is an opportunity to tell NIH to fund a study like this. https://grants.nih.gov/grants/guide/notice-files/NOT-NS-19-045.html

 

When I sit up with my feet lower than my heart, or stand without moving, blood slowly begins to pool in my feet which gradually turn red/purple. The same happens to a lesser extent in my hands.

This is one of the physical signs I have that something is wrong, because obviously this would never happen when I was well. It’s exacerbated by heat so presumably may have something to do with unnecessary vasodilation. The more blood that pools the more faint I feel, my heart rate goes up and tries to compensate.

 

I can only speak from my experience and my personal "theory".

Two other things indicate for me that my blood vessels don't behave "correctly": I have Raynaud's, and another test (some measurement of the small vessels in the finger) showed the vessels don't open enough - I don't have details, this was done for a study. The small blood vessels aren't "flexible" enough in the sense of they don't open widely enough and too slowly. So I think the blood isn't correctly transported, most probably by the small vessels. That seems to be a problem when standing (and exercising), maybe esp. regarding oxygen supply, so the body produces epinephrine and/or norepinephrine (which one will a test show in a few days, but I think it will be epinephrine because I have POTS) which leads to the symptoms.

But I think there may be more processes leading to POTS/NMH.

@Wonko has a thread about how he tries to improve blood circulation. I think the problem is blood circulation and resulting oxygen supply "shortages" which the body tries to compensate.

 

@Inara

I do not suggest anyone tries what I am doing - it is really quite punishing, with little to no evidence it will ever be beneficial.

The supplements I am taking are primarily aimed at increasing blood vessel flexibility, helping the epithelial layer they are lined with, and possibly (with little to no evidence this is even possible) reducing arterial plaque.

The 'exercise' (primarily walking/lurching with a tiny amount of isometric, that largely doesn't get done, and once a week a few min weight deadlifts if I feel up to it) is mainly done with the aim of reducing any hypovolemia long periods of inactivity may have caused.

The dietary changes are mainly to help correct any likely deficiencies with the particular aim of raising Glutathione production, to help my body repair itself.

Outside of the almost constant crashing, and PEM, I am seeing limited evidence that 'fitness' is improving (mainly in the form of a lowered resting HR and lowered BP) and maybe that any suspected hypovolemia is being affected (mainly in an increase in weight that drops off with a few days inactivity).

Simple stuff, probably based largely on junk science, but quite punishing, and I am currently healthier than most here.

So I don't advise anyone else doing the same, it has the potential to do great harm to PwME.

 

What about putting the feet in hot water, then cold water and alternating for a while? This should in theory be training for the muscles responsible for vasoconstriction.

 

One of the treatments for OI that some people (not me) find useful is graduated pressure stockings, often with abdominal binding. I thought that splanchic pooling had been directly observed in some way in research but maybe I'm wrong. Doesn't this indicate that there's a problem with blood distribution?

Would you like to approach him? I think we can all agree that OI is a horrible and disabling symptom, whatever the cause of it, and diagnosis and treatment are both clearly pretty rubbish for many of us. If there are unquestioned ideas that are holding the field back it would be good to establish that and to move the research forward

 

since all times (10y+), bp was never anything near 100, and go down when standing up.
nobody ever suggested treating it, even though lowness was of concern.
it was clear to me, without thinking/researching(...), that low bp was the cause of dizziness.

then, in recent years, at least one figure of blood pressure is always above 100. they now say "good".

may be wrong, but the only thing i can assign that to, is an radio-iodine-thyroid treatment.
it didnt go as supposed, i understood, it inversed somehow, e.g. before treatment T? was the low one, now its the higher one...
(had no high thyroid-antibodies)

100 or not: my dizziness/getting-up probs are still there.

 

If you mean that the tachycardia of POTS may be an anxiety/stress response to the symptom of OI, whatever the cause, I'd argue against that for the simple reason that, for me at least, the tachycardia would precede OI.

It didn't happen to me immediately after onset, but, by three years into the illness, I noticed that I was getting weird symptoms if I stood still for very long. I was not bed-bound, nor do I suspect was I much more deconditioned than a sedentary office worker.

Never-the-less, my pulse was now going up very quickly upon standing. It would easily go from 55 to 110+.

Only after about 10 minutes on my feet, with my pulse already accelerated, would I become aware that my body was in someway "signaling" me to get off my feet. The urgency of this signaling increased the longer I remained standing. It's hard to convey just how "imperative" this warning could become. It was basically commanding, "Sit down or I will put you down!" I assumed I would probably black out if I remained standing. Inevitably, I would sit down or lean back against a wall (which was less effective than sitting).

As others have mentioned, I found some relief if my legs were in motion. I assumed this was probably because moving my leg muscles helped my circulation in overcoming some kind "blood pooling" in my legs, but it's just a guess.

I wouldn't be surprised if the initial tachycardia was a response to the brain not getting enough blood upon standing. The subsequent OI "warning" to sit down might be a response to prolonged tachycardia, as though the body expects some brief increase in pulse rate upon standing but eventually decides "this is ridiculous!"

 

And I didn't mean to suggest. Just found it interesting that your topic is "blood circulation" (especially the blood vessels) because I think that's a problem in me, too, and I think it may be a cause (?) of OI symptoms.

 

Dr Systrom is speaking in Belfast in September. I'm happy to ask him any relevant questions.

 

Check out Julian M. Stewart's studies. Their group's work has explored cardiac, respiratory & SNS observations in POTS and their order of appearance - they disproved that simple hyperventilation triggered all the other symptoms, for example. They found what you described, that reduced cerebral blood flow precedes the hypocapnia, tachycardia and sympathetic activation found in POTS. From memory I think their subsequent studies showed that CBFv oscillated in POTS, rather than a simple drop. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4016155/

I don't recall CVP being applied but they do use a number of interesting methods to measure volume shifts, estimated blood flow velocity and muscle sympathetic nerve activity. I would guess Dr Systrom is the most likely to have looked at CVP with his invasive CPET studies.

Stewart's group has another interesting paper that's under embargo until November, though it is available now on a certain hub of science They explored POTS hyperventilation vs panic hyperventilation vs voluntary hyperventilation. POTS hyperventilation has distinctive CV characteristics, cardiac output is decreased while peripheral resistance and BP are increased, distinct from both panic and voluntary hyperventilation. I guess they are still battling the notion that this is all simple hyperventilation-syndrome-crazy-deconditioned-patients.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6442665/

 

Compression stockings sound a sensible way of reducing blood pooling or oedema in the legs which might be helpful for anyone who is immobile. But the question with all these ideas is whether people use them because they think they ought to help or because they actually make a difference. Without proper trials that is often pretty difficult to judge.

I have not heard anything akboutsplanchnic pooling. I doubt that would be affected by posture much. The problem with upright orbiting posture is the pooling in the legs. The abdomen is more or less in the middle whatever position you are in. I don't think abdominal binding wild much because you need your abdomen to be able to take up the volume when the diaphragm goes down when you breath in.

I would be interested if there are papers on this but I have a strong impression that a lot of this so-called physiology is hearsay.

 

If David Systrom knows what he is doing he will publish and he will not need me to tell him what to do. If he doesn't I am not sure me trying to tell him is going to help much.

 

Yes, I think we need to know the sequence in detail. There seem to be all sorts of possibilities.

 

Impedance plethysmography has been used in POTS studies to show the fractional change in regional blood volumes. Its not precise enough to distinguish between thoracic and splanchnic organs though.

 

@Jonathan Edwards - you may find Frans Visser’s and Linda van campen’s work on cardiac output and stroke volume changes during head up tilts in ME/CFS of interest.

Although I assume you’ve already seen this?

https://www.gavinpublishers.com/art...gRPqbouESy_UyOSQlRbNzp5ZTJCTUjhdfWO7LFOghihX8

 

From my experience over the years I've learnt to never discuss these terms with my GP. It will not make you appear more believable or have them take you seriously. I would discuss symptoms only, say something like your chest feels heavy, or you have weakness in your arms, or you feel very shaky upon standing etc.

And never tell them you have "neuroinflammation"!!! it's not a medical term, and they will assume you read this off the internet.

 

I've had this issue before ME and didn't have autonomic problems back then. It was worse when I didn't exercise or move around too much. My legs used to turn deep purple after a shower.

Did you have this before ME?

 

I just googled and couldn't find a trial (which isn't to say that there isn't one). Waist-high compression stockings (of the type used for OI) are so incredibly difficult to get on that I'd be amazed if anyone kept wearing them without being convinced that they were helping them keep upright. I had to give up on them because not only were they not doing any good but I hurt my back and my fingers trying to pull them on.

quote]I have not heard anything akbout splanchnic pooling. I doubt that would be affected by posture much. The problem with upright orbiting posture is the pooling in the legs. The abdomen is more or less in the middle whatever position you are in. I don't think abdominal binding wild much because you need your abdomen to be able to take up the volume when the diaphragm goes down when you breath in.

I would be interested if there are papers on this but I have a strong impression that a lot of this so-called physiology is hearsay.[/QUOTE]

IIRC I saw this stuff about splanchnic pooling on an ME/CFS conference livestream a few years ago and I wonder if I posted about it in the other
place (which I don't seem to be able to access today).