Anyone resolved blood pooling?

[Pyrrhus]

Does anyone else have both bulging feet veins and cold feet? I typically associate vasoconstriction with cold appendages.

It's unfortunately not that simple. Both excessive vasodilation as well as excessive vasoconstriction can lead to poor circulation.

Excessive vasodilation can lead to blood pooling in the legs and feet, which is a sign of poor circulation.

Basically, the diameter of the blood vessels must be sized to ensure proper regional blood pressure in order to ensure optimal blood flow. There are other factors at play, too.

Hope this helps.

 

[Lolinda]

No, I didn't try IVIG because I didn't test positive for any anti-adrenergic antibodies.
Or any of the auto-antibodies my doctor tested for.

I did try IVIG for my POTS in spite of testing negative for adrenergic antibodies (test panel offered by celltrend lab, Germany). The result was zero in spite of receiving these super expensive infusions over more than half a year. I did not feel better and I performed the 15 min standing test for POTS repeatedly and that did not improve either. The antibodies I did have elevated in the past before IVIG, that was actually one of the reasons what made the insurance pay for the IVIG. however, I have resolved them before I received the IVIG treatment using simple vitamin D supplementation. bringing my elevated antibodies back to normal using vitamin D did not improve anything at all in my POTS either, neither symptoms nor the heart rate in the standing test.

The only real effect of all this was that I learned some French talking to the very nice nurse... :-D

 

[Violeta]

Test for phospholipid antibodies.

Anti-cardiolipin antibodies were found in 95% of ME/CFS patients.

Test for beta-2 glycoprotein 1 antibodies as well, and probably phosphatidylserine antibodies, and lupus coagulant.

Anyone w/ ME/CFS that has blood pooling, and/or POTS, hypotension, numbness, vision issues, or cold feet should test for these.

Would also be good to check out Annexin V antibodies, and platelet antibodies.

What are the vision issues that POTS or orthostatic hypotension cause? I have some vision issues and am wondering if they are related to orthostatic hypotension.

 

[Shanti1]

What are the vision issues that POTS or orthostatic hypotension cause? I have some vision issues and am wondering if they are related to orthostatic hypotension.

I can only speak for myself, but the vision issue I experience with hypotension only happen with an active episode and resolve once my blood pressure is normalized. I attribute the vision issues to lack of profusion to the eyes and visual lobes of the brain. The changes I get are blurry vision and patchy vision. It resolves lying down and also with compression and medication to increase BP.

 

[Violeta]

I can only speak for myself, but the vision issue I experience with hypotension only happen with an active episode and resolve once my blood pressure is normalized. I attribute the vision issues to lack of profusion to the eyes and visual lobes of the brain. The changes I get are blurry vision and patchy vision. It resolves lying down and also with compression and medication to increase BP.

Ah, those are the vision issues I have. They are intermittent, but I have never figured out why!

 

[Shanti1]

Other symptoms I get when my BP drops are sharp decrease in cognitive processing, numbness in my face, and changes in middle ear pressure, leading to ear pain.

Ah, those are the vision issues I have. They are intermittent, but I have never figured out why!

I hope this ends up being one of your puzzle pieces. There are lots of things to try for hypotension.

 

[Violeta]

Other symptoms I get when my BP drops are sharp decrease in cognitive processing, numbness in my face, and changes in middle ear pressure, leading to ear pain.


I hope this ends up being one of your puzzle pieces. There are lots of things to try for hypotension.

Yes, it will be a clue for when I have to do more positive stuff and also for helping me pinpoint negative stuff.

 

[Violeta]

I can only speak for myself, but the vision issue I experience with hypotension only happen with an active episode and resolve once my blood pressure is normalized. I attribute the vision issues to lack of profusion to the eyes and visual lobes of the brain. The changes I get are blurry vision and patchy vision. It resolves lying down and also with compression and medication to increase BP.

So this might indicate hypoxia? One really important and negative result from the hypotension could be hypoxia?

 

[Shanti1]

So this might indicate hypoxia? One really important and negative result from the hypotension could be hypoxia?

Yes, exactly.

 

[Violeta]

I once reviewed all of my peripheral dysautonomic symptoms and found that they all involved beta-2 (β2) adrenergic receptors acted on by nerve endings that used norepinephrine.

So, instead of Mestinon, I tried Atomoxetine because Atomoxetine is a selective Norepinephrine booster. It was amazing. For a couple hours, all my blood pooling and exercise intolerance disappeared and I felt great.

Two days later, the crash came. And it was a big one.

I still keep the Atomoxetine on hand in case of emergencies, but the crashes mean I can't use it regularly.



When I was mild, I went Scuba diving. Afterwards, I felt so miserable for a day or so. This might have been the same effect as a G-suit...

@Pyrrhus, have you had your neurotransmitter levels checked?

 

[Shanti1]

So this might indicate hypoxia? One really important and negative result from the hypotension could be hypoxia?

As I'm sure you figured, the hypoxia is the result of decreased blood flow to the head/brain as there is not enough vascular constriction in the extremities/pelvis/abdomen (this manifests as low blood pressure) to return blood to the heart. Ultimately, this results in poor cardiac output of oxygenated blood and insufficient blood being pumped to the brain. In the extremities, you get blood pooling, which creates a different sort of hypoxia from congestion and stagnation of blood. I know that if I don't use compression stockings my neuropathy gets much worse. This is probably because the blood is pooling and my nerves are not getting needed oxygen or waste removal provided by good circulation.

 

[sometexan84]

What are the vision issues that POTS or orthostatic hypotension cause? I have some vision issues and am wondering if they are related to orthostatic hypotension.

I'm not so sure POTS and orthostatic hypotension (OI) cause vision probs necessarily. I think they can just go hand-in-hand.

I believe the antiphospholipid antibodies and vision issues are largely caused by gut dysbiosis and leaky gut, where bacteria microbes leak out into bloodstream.

Weakened peripheral tolerance will allow for autoimmunity to develop so that when immune system attacks the stuff that's leaked out of the gut, it ends up attacking things it should not.

For example, some of the bacteria that has been known to leak out of our gut includes Streptococcus. Some Streptococcal bacteria can lead to Heat Shock Protein 60 (HSP 60) antibodies. HSP 60 antibodies can cause inflammatory damage in your eyes, leading to vision problems.

You often see this in Uveitis and Behcet's disease. So, while there's likely no pathogen in the eye, HSPs that reside in the eye are under attack, causing inflammation and damage, leading to vision problems. Antibiotics have been known to help this. But really you have to fix your gut barrier and gut microbiome.

Another helpful thing is to up your hygiene, especially oral hygiene.

 

[Violeta]

I'm not so sure POTS and orthostatic hypotension (OI) cause vision probs necessarily. I think they can just go hand-in-hand.

I believe the antiphospholipid antibodies and vision issues are largely caused by gut dysbiosis and leaky gut, where bacteria microbes leak out into bloodstream.

Weakened peripheral tolerance will allow for autoimmunity to develop so that when immune system attacks the stuff that's leaked out of the gut, it ends up attacking things it should not.

For example, some of the bacteria that has been known to leak out of our gut includes Streptococcus. Some Streptococcal bacteria can lead to Heat Shock Protein 60 (HSP 60) antibodies. HSP 60 antibodies can cause inflammatory damage in your eyes, leading to vision problems.

You often see this in Uveitis and Behcet's disease. So, while there's likely no pathogen in the eye, HSPs that reside in the eye are under attack, causing inflammation and damage, leading to vision problems. Antibiotics have been known to help this. But really you have to fix your gut barrier and gut microbiome.

Another helpful thing is to up your hygiene, especially oral hygiene.

Thank you for the helpful information.