Orthostatic Intolerance (OI) Basics: Dysautonomia of Blood Vessels, Low Blood Volume, and Baroreflexes

[Booble]

This drawing of that guy's head is perfect. The only difference in real life being that the person would be bending forward trying to get their head back to norm.

It was such revelation to learn that the heart rate doesn't rise dramatically in "regular" people. I assumed everyone's did.

Also, you can tell even those with minor POTS in that when sitting they like to have their legs up on their chair. My mom, sister and niece all do that. But I think I and maybe my niece are the only ones with the full on near loss of consciousness like that guy in the drawing.

 

[Pyrrhus]

Further reading about Orthostatic Intolerance, from the team of Linda van Campen, Frans Visser, and Peter Rowe:

Cerebral Blood Flow Is Reduced in Severe ME/CFS during a 20 degrees head up tilt test (Van Campen et al 2020)
https://forums.phoenixrising.me/thr...ead-up-tilt-test-van-campen-et-al-2020.80444/

Reductions in Cerebral Blood Flow Can Be Provoked by Sitting in Severe Myalgic Encephalomyelitis... (Van Campen et al. 2020)
https://forums.phoenixrising.me/thr...ncephalomyelitis-van-campen-et-al-2020.81574/

ME/CFS Patients with Joint Hypermobility Show Larger Cerebral Blood Flow Reductions during Orthostatic Stress Testing... (van Campen et al., 2021)
https://forums.phoenixrising.me/thr...c-stress-testing-van-campen-et-al-2021.84635/

Deconditioning does not explain orthostatic intolerance in ME/CFS (van Campen, Rowe, and Visser, 2021)
https://forums.phoenixrising.me/thr...me-cfs-van-campen-rowe-and-visser-2021.83831/

Orthostatic Symptoms and Reductions in Cerebral Blood Flow in Long-Haul COVID-19 Patients: Similarities with ME/CFS (van Campen, Rowe, and Visser, 2021)
https://forums.phoenixrising.me/thr...lgic-encephalomyelitis-chronic-fatigue.86508/

 

[Pyrrhus]

Also note that when there is insufficient constriction of the veins by the autonomic nervous system, gravity can cause noticeable bulging of the veins in the arms or legs when the arms or legs are hanging down. Here is a discussion with pictures:

Excessive Vein Dilation?
https://forums.phoenixrising.me/threads/excessive-vein-dilation.80046/

(If the veins are bulging regardless of whether the arms or legs are hanging down or raised up, it may be something else.)

 

[Violeta]

Also note that when there is insufficient constriction of the veins by the autonomic nervous system, gravity can cause noticeable bulging of the veins in the arms or legs. Here is a discussion with pictures:

Excessive Vein Dilation?
https://forums.phoenixrising.me/threads/excessive-vein-dilation.80046/

Thanks for this link.

 

[Rufous McKinney]

I seem to have high blood pressure yet exhibit some orthostatic intolerance (not officially diagnosed with the latter).

Its hard for me to entirely grasp whats going on or how both are possible. But it seems both are possible...and this article may include information that might explain that, if I could in fact read thru this and figure it out.

Wish me luck.

Anyone else dealing with this?

https://academic.oup.com/ajh/article/31/12/1255/5047643

Orthostatic Hypotension in the Hypertensive Patient
Italo Biaggioni
American Journal of Hypertension, Volume 31, Issue 12, December 2018, Pages 1255–1259, https://doi.org/10.1093/ajh/hpy089
Published:

02 July 2018

 

[Learner1]

I seem to have high blood pressure yet exhibit some orthostatic intolerance (not officially diagnosed with the latter).

Its hard for me to entirely grasp whats going on or how both are possible. But it seems both are possible...and this article may include information that might explain that, if I could in fact read thru this and figure it out.

Wish me luck.

Anyone else dealing with this?

https://academic.oup.com/ajh/article/31/12/1255/5047643

Orthostatic Hypotension in the Hypertensive Patient
Italo Biaggioni
American Journal of Hypertension, Volume 31, Issue 12, December 2018, Pages 1255–1259, https://doi.org/10.1093/ajh/hpy089
Published:

02 July 2018

ARBs we're ineffective. A calcium channel.blocker almost killed me. Alpha and beta blockers (clonidone and metoprolol extended release) have helped most

 

[Violeta]

I seem to have high blood pressure yet exhibit some orthostatic intolerance (not officially diagnosed with the latter).

Its hard for me to entirely grasp whats going on or how both are possible. But it seems both are possible...and this article may include information that might explain that, if I could in fact read thru this and figure it out.

Wish me luck.

Anyone else dealing with this?

https://academic.oup.com/ajh/article/31/12/1255/5047643

Orthostatic Hypotension in the Hypertensive Patient
Italo Biaggioni
American Journal of Hypertension, Volume 31, Issue 12, December 2018, Pages 1255–1259, https://doi.org/10.1093/ajh/hpy089
Published:

02 July 2018

That orthostatic intolerance can go either way baffles me, too. I have even seen people say that they have low blood pressure OI for years and then it switches to hypertension. I have OI with low blood pressure and raising norepinephrine with Butcher's Broom, tyrosine and vitamin c is helping. Have you found anything that helps with they hypertension and OI? I'll read that link, too.

Oh my goodness, I didn't realize you meant there are people that have both.

Have you read Pall's paper on peroxynitrite?
file:///home/chronos/u-42ae873a533d7fee4fe722a2e44efc2089ea38b1/MyFiles/Downloads/Pall%20ONOO%20cure%20(3).pdf

This one is easier to read and the information about hypertension is easier to find. When I was reading it I was surprised when I got to the part about hypertension and was actually wondering if it would apply to hypotension, too.

https://www.clinicaleducation.org/resources/reviews/how-can-we-cure-noonoo-cycle-diseases-a-review/

 

[Violeta]

Can people with hypertension wear compression clothing?

 

[VisualEffect]

Midodrine (or Butcher’s Broom) ONLY constricts veins so you have better peripheral circulation, and better blood flow to the brain?
Mestinon (or Huperzine A) ONLY raises acetylcholine, so our parasympathetic branch can kick in?
I’ve tried Huperzine A but it has little or no effect on my HR, blood pooling and strange vasoconstriction in my hands. I want to try Midodrine but unfortunately it’s hard to buy it in my country. And I can’t order Butcher’a Broom from iHerb too for some reason.

Can people with hypertension wear compression clothing?

I don’t know, have you tried L-Arginine?

 

[GlassCannonLife]

Huperzine doesn't seem to do anything for me, and butchers broom just made me feel a bit off and have a higher resting hr - only tried butchers broom once so far though.

Improving my OI would be greatly beneficial but it doesn't seem likely without my ME improving a lot first/at the same time.

 

[VisualEffect]

Huperzine doesn't seem to do anything for me, and butchers broom just made me feel a bit off and have a higher resting hr - only tried butchers broom once so far though.

Improving my OI would be greatly beneficial but it doesn't seem likely without my ME improving a lot first/at the same time.

First day my disease started, my only symptom was OI. My head was a little bit heavy and dizzy on standing. So I think every other major symptom I have is a consequence of OI. Maybe I’m wrong.
It seems there is a subset of people with OI which doesn’t improve with Mestinon and Midodrine? What can help in this case?

 

[Violeta]

Midodrine (or Butcher’s Broom) ONLY constricts veins so you have better peripheral circulation, and better blood flow to the brain?
Mestinon (or Huperzine A) ONLY raises acetylcholine, so our parasympathetic branch can kick in?
I’ve tried Huperzine A but it has little or no effect on my HR, blood pooling and strange vasoconstriction in my hands. I want to try Midodrine but unfortunately it’s hard to buy it in my country. And I can’t order Butcher’a Broom from iHerb too for some reason.


I don’t know, have you tried L-Arginine?

I have hypotension and it helps me. I was just curious if compression clothing helps those with hypertension, too.

 

[SuzieSam]

I'm new here, hello. This was very helpful, thank you @Pyrrhus. You've made a complicated subject very clear.

I hadn't absorbed what Orthostatic Hypotension actually was from all the stuff I'd read before.

Note that the drop in regional blood pressure is often not measurable using standard blood pressure monitors. If the drop in blood pressure is measurable and large enough, the orthostatic intolerance is referred to as orthostatic hypotension.)

Do you know what they should be using to measure it, when you go for a Tilt Table Test?

If I get myself referred to see a dysautonomia specialist, do you know what kind of testing they should be doing on me, an ME sufferer? Any blood tests that might be useful?

My heart rate rise is closer to the 30 bpm minimum, and it scares me to have a tilt table test and get gaslit to oblivion if it doesn't impress them. My resting rate is 76 bpm, and it goes to 115 bpm when I ignore my heart rate monitor to make a cup of tea. But the White Coat Factor could boost my resting heart rate and shrink the rise...

I absolutely hate seeing doctors, but...

Thanks for any advice.

 

[Pyrrhus]

Huperzine doesn't seem to do anything for me, and butchers broom just made me feel a bit off and have a higher resting hr - only tried butchers broom once so far though

It seems there is a subset of people with OI which doesn’t improve with Mestinon and Midodrine? What can help in this case?

One thing you might try - carefully - is Strattera/atomoxetine:

Strattera (atomoxetine)
https://forums.phoenixrising.me/threads/strattera-atomoxetine.19755/
Note that for most people, atomoxetine has a blood half-life of about 5 hours. However, some people are genetically poor metabolizers, and their blood half-life is more like 22 hours, which would interfere with sleep. For me, 10mg made me feel completely cured for 8 hours, and then I crashed for a month.

Do you know what they should be using to measure it, when you go for a Tilt Table Test?

If I get myself referred to see a dysautonomia specialist, do you know what kind of testing they should be doing on me, an ME sufferer? Any blood tests that might be useful?

I'm afraid I don't know, I'm sorry. There may be some information in this discussion:

NASA 10-minute lean test: Testing for orthostatic intolerance (OI) in ME/CFS patients (video)
https://forums.phoenixrising.me/thr...ntolerance-oi-in-me-cfs-patients-video.52312/

 

[GlassCannonLife]

One thing to try - carefully - is Strattera/atomoxetine:

Strattera (atomoxetine)
https://forums.phoenixrising.me/threads/strattera-atomoxetine.19755/
Note that for most people, atomoxetine has a blood half-life of about 5 hours. However, some people are genetically poor metabolizers, and their blood half-life is more like 22 hours, which would interfere with sleep.




I'm afraid I don't know, I'm sorry. There may be some information in this discussion:

NASA 10-minute lean test: Testing for orthostatic intolerance (OI) in ME/CFS patients (video)
https://forums.phoenixrising.me/thr...ntolerance-oi-in-me-cfs-patients-video.52312/

I thought you said elsewhere that when you tried this it worked great but then crashed you for a month - is that the same thing or did I misremember?

 

[Pyrrhus]

I thought you said elsewhere that when you tried this it worked great but then crashed you for a month - is that the same thing or did I misremember?

Yup, that's the same thing. Hence the caution...

 

[halcyon]

Do you know what they should be using to measure it, when you go for a Tilt Table Test?

The protocol in the US for Mayo and Stanford, for full autonomic battery testing, is that they monitor you with a multi-lead ECG and then a special beat-to-beat blood pressure cuff on your finger. These are running the entire time you are taken through both the tilt-table testing, as well as the autonomic reflex testing (slow respirations + valsava). I don't know for sure if beat-to-beat BP monitoring is done at the less sophisticated labs that only do the tilt table, but blood pressure definitely has to be determined during the test because if your BP drops sufficiently during the test, the diagnosis should be orthostatic hypotension, rather than POTS.

If I get myself referred to see a dysautonomia specialist, do you know what kind of testing they should be doing on me, an ME sufferer? Any blood tests that might be useful?

My heart rate rise is closer to the 30 bpm minimum, and it scares me to have a tilt table test and get gaslit to oblivion if it doesn't impress them. My resting rate is 76 bpm, and it goes to 115 bpm when I ignore my heart rate monitor to make a cup of tea. But the White Coat Factor could boost my resting heart rate and shrink the rise...

Fully battery testing would be good if you can get it, rather than just a standing or only tilt table test. This can also include sweat testing (QSART or TST) that can show the presence of autonomic neuropathy. I don't think every lab does this, but a blood draw while upright is sometimes used to determine if norepinephrine levels are significantly elevated (as seen in hyperadrenergic POTS).

I had tachycardia throughout my entire tilt-test, even while supine, and the POTS still showed up clear as day.

 

[keenly]

Butcher's Broom works well for it. Also, compression clothing can help a lot.

Any particular product?

 

[Violeta]

Any particular product?

I have used Nature's Way and right now I have Swanson's Butcher's Broom. Both seemed to work

 

[Bowser]

The defective vasoconstriction in POTS can be caused by Thoracic Outlet Syndrome induced Craniovascular Hyperperfusion phenomenon (TOS CVH)

https://www.facebook.com/mskneurolo...oJUYN4KFA7oh6Tbdu05kc2i4t0JRvtU&__tn__=,O,P-R

https://mskneurology.com/postural-o...d-its-relation-to-craniovascular-dysfunction/