POTS: The Remarkable condition

[SWAlexander]

Those with orthostatic intolerance- I.e. symptoms that get worse on standing such as nausea, dizziness, headache- please be aware that a negative tilt test does not exclude #PoTS. Dr Gupta of
@YorkCardiology explains this beautifully and treats patients clinically- as all should.

 

[perrier]

Yes, thank you; the recommendations on Dr. Gupta's site as hydration, salt, lying down, heart meds and exercise. The latter is impossible for folks with ME.

 

[SWAlexander]

More help for POTS is coming.
Dysautonomia Intl.
Film producer Danielle Hinde, who has worked with everyone from Katy Perry to Childish Gambino, is working on a new film about #POTS, #dysautonomia & #LongCOVID. Here's a short clip from the upcoming film, featuring Danielle & Dr. Brent Goodman:

 

[SWAlexander]

I have genetic markers for Sjögren's syndrome (rs10488631/gene TNPO3).
https://www.sjogrens.org/

 

[keenly]

I have not found anything that helps orthostatic intolerance other than laying down. I have this bad,

 

[Violeta]

Compression clothing and Butcher's Broom are helping me.

 

[ChookityPop]

Compression clothing and Butcher's Broom are helping me.

What doseage of Butchers Broom do you take?

 

[Violeta]

What doseage of Butchers Broom do you take?

I take 2 X 500 in the morning. One night I took another 500mg because of restless leg syndrome.

Yesterday I started taking bacopa monnieri for a different reason and am going to see how much that can help.

Acetylcholine is what helps the situation. This is a good article about it. I also try to take B vitamins, B5 seeming to help the most.

Potatoes aren't good for it, but I'm trying to see if the remedies are strong enough to allow me to eat them; I don't have many food choices.

https://www.peirsoncenter.com/artic...-the-synthesis-of-this-vital-neurotransmitter

 

[ChookityPop]

I take 2 X 500 in the morning. One night I took another 500mg because of restless leg syndrome.

Yesterday I started taking bacopa monnieri for a different reason and am going to see how much that can help.

Acetylcholine is what helps the situation. This is a good article about it. I also try to take B vitamins, B5 seeming to help the most.

Potatoes aren't good for it, but I'm trying to see if the remedies are strong enough to allow me to eat them; I don't have many food choices.

https://www.peirsoncenter.com/artic...-the-synthesis-of-this-vital-neurotransmitter

Interesting, thanks for sharing!

 

[ChookityPop]

Is it possible to have POTS without dizziness? I have blood pooling and I have to use full body compression every waking hour but no dizziness. Without compression my function level decreases significantly.

 

[Learner1]

Huperzine A at 200mg per day is very helpful.

The latter is impossible for folks with ME.

Exercise is quite possible for many folks with ME. But not all, unfortunately.

 

[Violeta]

Is it possible to have POTS without dizziness? I have blood pooling and I have to use full body compression every waking hour but no dizziness. Without compression my function level decreases greatly.

I think so.

 

[Violeta]

Two days trying Brahmi (bacopa monnieri), and it works even better for me than the Butcher's Broom. I realize there is more than one possible cause for POTS, so it might not be the answer for everyone.

One of it's actions is it "appears to affect levels of several neuromodulators – chemical messengers that neurons release to signal to groups of other neurons (as well as other cells with certain receptors). Specifically, Bacopa Monnieri may activate choline acetyltransferase (an enzyme involved in acetylcholine synthesis) and inhibit acetylcholinesterase (an enzyme that breaks down acetylcholine) (1). Both of these actions raise brain levels of acetylcholine, a chemical with important roles in things like attention and memory."

https://pubmed.ncbi.nlm.nih.gov/23772955/

 

[SWAlexander]

Dysautonomia Intl

https://twitter.com/i/web/status/1548685014325514241

Initial lab testing for #POTS presented by Dr. Brent Goodman, autonomic lab director at Mayo Clinic, during the #DysConf2022 CME today. He also noted cytokine panels may become part of the standard POTS workup once we have some more research on this.

Dr. Goodman explains other testing he routinely does on #POTS patients at Mayo Clinic. This is in addition to autonomic function testing and lab work.

Importantly, Dr. Goodman also emphasized the need for annual follow up testing for patients still experiencing debilitating symptoms. Sjogren's may not be present on initial testing, but can show up years later.

 

[Rufous McKinney]

Potatoes aren't good for it,

Potatoes are my main diet food.... my system really craves and needs potatoes for grounding.

is this discusssed in any research studies?

 

[Rufous McKinney]

someday I dream of figuring this out...I have some odd version of POTS. Why am I lying down at Noon thirty?

I've got to move this equation forward somehow.

 

[Rufous McKinney]

Compression clothing

its too hot to wear all that in most of the places I find myself.

I wear short socks alot...but now its too hot for that. (the plantar fascitis compression socks my feet crave)

 

[SWAlexander]

my system really craves and needs potatoes

Could it be "potassium" you are graving?

 

[Violeta]

Potatoes are my main diet food.... my system really craves and needs potatoes for grounding.

is this discusssed in any research studies?

No, and actually potatoes have something in them that inhibit acetylcholinesterase, so they should be good for POTS. Unless there is something that makes extra acetylcholinesterase contradictory.

Interesting that you find them helpful. When I eat potatoes I have a hard time standing for any length of time and even difficulty keeping my eyes open. But then I have insomnia in the middle of the night.

I had a thought in the middle of the night that maybe it has something to do with calcium channels but am not feeling well enough to look into that right now.

I must have an extra problem that they bother me but not you. I am envious, I love potatoes.

 

[Violeta]

its too hot to wear all that in most of the places I find myself.

I wear short socks alot...but now its too hot for that. (the plantar fascitis compression socks my feet crave)

Too hot here right now to wear compression socks, which are very helpful.

I do wear the shorts, and they are helpful, too.