POTS - has anyone found "slow salt" supplements helpful (or tried saline drip therapy) ?

[Bansaw]

I've been listening to a UK doctor on Youtube called Dr.Sanjay Gupta, and some of what he's saying is resonating with me.

I'll be attempting to hydrate well, e.g. with sole water,... Dr.Gupta mentioned "slow salt" - I guess this is a supplement that releases salt slowly to help retain water, but has anyone got any experience or supplement recommendations ?

Also, he's relating that saline dip therapy made a significant difference to a majority of his POTS patients. Although here in the US, sitting in a health facility for a 3hr drip treatment might be expensive (?)

I'm looking at Acetylcholine supplements too (POTS people have acetylcholine issues) and some nootropics. ALCAR has made a difference. Next I might try a better form of choline - Phosphatidylcholine.
I've tried not to be on ALCAR etc for more than 3 days in a row to deny my body the chance to develop tolerance.

 

[wabi-sabi]

I haven't heard of slow salt, but adding salt to our diet helps in general. It's hard to eat enough salt and still have food taste good, so supplements are helpful. You can check Dysautonomia International as a good source of salt info. The recommend things like Vitassium, Liquid IV, or Normalyte,

Also, check your food labels. Canned soup usually has tons of sodium in it, and of course there's always ramen. That's probably the cheapest source of salt around! My current favorite salt source is feta cheese.

The important thing to remember is that when we talk about salt for POTS, we are talking about sodium chloride. When you are evaluating a salt source (whether that's slow salt, sole water or Normalyte) you are evaluating how much sodium is in there. We POTS people need more sodium chloride than non-POTS people.

Find the salt source that fits your budget and energy levels. Do you want to mx your own sole water, buy a commercially prepared supplement, or open a packet of ramen? Sodium chloride is sodium chloride, wherever it comes from. There are a lot of price points for fancy, gourmet salts, but it is all just salt.


Here is their blog, listing salt sources and ways to increase your salt:

https://dysautonomiainternational.org/blog/wordpress/pleasepassthesalt/

 

[wabi-sabi]

Here's another resource on healthy salt sources from Dysautonomia International:

https://www.dysautonomiainternational.org/pdf/salt.pdf

 

[linusbert]

just wanted to add that vitamins control electrolyte balance in the body. i dont recall anymore what vitamin does what, but i think B1 is involved in potassium metabolism, increasing the capacity for cells to take in potassium and kick out sodium. for sodium and or magnesium i think B6 is important. so fixing any deficiencies might help with sodium issues. maybe its even possible to use higher dosis to get any therapeutical effect.
sadly i dont keep track of all sources so sorry for bad quality information.

one of my many doctors told me to control low salt he would give medications which raise Aldosterone which is produced by adrenal glands.
if one is low in potassium he would give something which lowers aldosterone.

 

[marcjf]

I've been listening to a UK doctor on Youtube called Dr.Sanjay Gupta, and some of what he's saying is resonating with me.

I'll be attempting to hydrate well, e.g. with sole water,... Dr.Gupta mentioned "slow salt" - I guess this is a supplement that releases salt slowly to help retain water, but has anyone got any experience or supplement recommendations ?

Also, he's relating that saline dip therapy made a significant difference to a majority of his POTS patients. Although here in the US, sitting in a health facility for a 3hr drip treatment might be expensive (?)

I'm looking at Acetylcholine supplements too (POTS people have acetylcholine issues) and some nootropics. ALCAR has made a difference. Next I might try a better form of choline - Phosphatidylcholine.
I've tried not to be on ALCAR etc for more than 3 days in a row to deny my body the chance to develop tolerance.

Dr. Gupta is British, so that is why the slow salt came up. Seems to be only available there. Not sure if it requires a prescription there or sold OTC. Unfortunately, I haven't found a company in the US and Canada that makes Slow Sodium.

 

[LINE]

IMO, this is all adrenal related. Adrenals become tired during period of stress which include immune system stress and handling toxins. Treating the adrenals with certain nutritionals seemed to solve any problem I have.

As a side note, sodium balance is related to adrenal function via the hormone mineralcorticoids. These also control potassium balance and likely the 3rd relevant mineral which is magnesium is also critical.

 

[Marylib]

I love IV saline. We should all get to try it to see if it helps.

 

[Husband of]

Treating the adrenals with certain nutritionals seemed to solve any problem I have.

Any problem? Do you mean in relation to Pots? MECFS? And what nutritionals? Thanks.

 

[Bansaw]

I love IV saline. We should all get to try it to see if it helps.

I'd like to try IV saline too. I do visit the UK sometimes - healthcare is cheap there - but I fear that IV therapy in the US where I reside might be costly. Did you get IV therapy in the US?

 

[Replenished]

I've been listening to a UK doctor on Youtube called Dr.Sanjay Gupta, and some of what he's saying is resonating with me.

I'll be attempting to hydrate well, e.g. with sole water,... Dr.Gupta mentioned "slow salt" - I guess this is a supplement that releases salt slowly to help retain water, but has anyone got any experience or supplement recommendations ?

Also, he's relating that saline dip therapy made a significant difference to a majority of his POTS patients. Although here in the US, sitting in a health facility for a 3hr drip treatment might be expensive (?)

I'm looking at Acetylcholine supplements too (POTS people have acetylcholine issues) and some nootropics. ALCAR has made a difference. Next I might try a better form of choline - Phosphatidylcholine.
I've tried not to be on ALCAR etc for more than 3 days in a row to deny my body the chance to develop tolerance.

Very interested in this as well. I literally just made a thread on the same sort of thing in an attempt to find solutions to low blood volume / POTS / dehydration.

I actually spoke to Dr Gupta a couple of days ago and by the sounds of it he is even now having trouble with the NHS allowing to issue saline IV and he advised me to look at some of the private clinics who may be able to offer this.

When you say ACLR has made a difference. In what way? I haven't heard of Acetylcholine for POTS so will look into this. I've also considering Clonidine as it seems as though it may help a number of the issues I feel are contributing to my ill health and could calm the nervous system, inhibit glutamate and also increase blood volume according to this post. Although it may lower blood pressure and mines already on the lower side so I'm not sure: https://www.healthrising.org/treati...drugs/clonidine-kataprex-nexiclone-duriclone/

I'm trying to compile all of this pots / blood volume stuff on a thread as a resource and for us hopefully to find a solution so feel free to chime in with things that help. https://forums.phoenixrising.me/thr...d-retention-hydration-and-blood-volume.89044/

I haven't tried slow salt but will try and get some now you mentioned it.

 

[linusbert]

Any problem? Do you mean in relation to Pots? MECFS? And what nutritionals? Thanks.

like LINE mentioned, you can take mineralcorticoids which is also aldosterone. probably a doctor needs to prescribe this. (and u definitely should talk with a doctor before taking this, we are talking steroid hormons here)

- adrenal supporting supplements i know are:
vitamin C, sodium, vitamin B5, probably vitamin D, anything-chloride like potassium chloride or magnesium chloride (citrats and other forms do not have that effect), its also rising blood pressure a bit.

- some eat bovine adrenal glands powder.

- red light therapy with NIR (near infrared light) shining on your adrenal glands might help as well.

- probably just warmth alone might help when you put a warming pillow in your back

 

[wabi-sabi]

If you don't have access to IV saline, fear not! Cort had an article a while back on how oral saline works just as well (if not better).

link here: https://www.healthrising.org/blog/2...al-rehydration-pots-chronic-fatigue-syndrome/

 

[Bansaw]

When you say ACLR has made a difference. In what way?

Mental sharpness and clarity. ALCAR encourages acetylcholine mechanisms in the brain. Needs to be taken with a choline supp and enough of the right dose. Also, I've heard of it helping with physical endurance.
But the body develops a tolerance for it, so I'm taking it 3 days on - 3 days off - to avoid that.
I just learned a few days ago that POTS sufferers have issues with acetylcholine.

 

[Bansaw]

If you don't have access to IV saline, fear not! Cort had an article a while back on how oral saline works just as well (if not better).

link here: https://www.healthrising.org/blog/2...al-rehydration-pots-chronic-fatigue-syndrome/

this is gold, thanks

 

[wabi-sabi]

this is gold, thanks

You're welcome!
Cort has a lot of good info and I check his site often to keep updated.

 

[Replenished]

If you don't have access to IV saline, fear not! Cort had an article a while back on how oral saline works just as well (if not better).

link here: https://www.healthrising.org/blog/2...al-rehydration-pots-chronic-fatigue-syndrome/

It sounds great but unfortunately it doesn't seem to be the case with some recent studies and many POTS specialists saying their patients get better and often feel normal with regular saline IV but get nowhere near that by drinking oral saline. Especially for those of us who don't retain fluids well/urinate constantly. You'd think oral hydration would work the same but for many in the POTS groups it's only IV that has made a difference. Oral solutions are definitely worth a try though for those who haven't tried that already.

 

[wabi-sabi]

with some recent studies

Can you send me these?

 

[Replenished]

Can you send me these?

https://pubmed.ncbi.nlm.nih.gov/28185102/

The rest is just me repeating what I've heard from a couple of the POTS specialists in the UK and looking on the POTS forums/FB groups where many rave about IV after getting nowhere with drinking every concoction of electrolytes. I've drunk every solution I can find and feel no difference so I hold out some faint hope saline IV might help me, even if it might be wishful thinking.

 

[wabi-sabi]

I've drunk every solution I can find and feel no difference so I hold out some faint hope saline IV might help me, even if it might be wishful thinking.

I feel you on that frustration!

Here are some thoughts:

1) I only read the abstract of the article (bad brain day), but the important thing to notice is that they didn't put IV head to head with oral fluids. They just gave people an IV and then asked if they felt better. Clearly people do feel better, but this study can't answer whether IV is better than oral, since they didn't test that.

2) The amount of sodium really, really matters. Recommendations for sodium in POTS vary from 6--10 grams daily. Some people say you need this amount in addition to your normal dietary intake. That's a lot of salt!

One liter of IV saline has 9 gm. That's like having 6 packets of ramen noodles mainlined into you. One pack of normaltye has 0.8 gm. So if you only have 1 or 2 a day, well you're right, that's not going to do anything, cause you're just not getting enough salt. I bet you're not eating 6 ramen packs a day either! Before you write off oral sodium, make sure you are getting a comparable amount. Otherwise you're testing apples to oranges. If you have a good doc, she can tell you how many gm sodium you need, which I can't.

3) I feel like a lot of these long COVID articles are reinventing the wheel in terms of POTS. It's good that it's getting airtime, but it's not always up with the history of ME/CFS research. ME/CFS researches that have studied POTS for years are not writing stuff about "What a surprise! An IV helps!" because they already know that. That's me being a little snarky so you can ignore this part if you want.

 

[wabi-sabi]

2) The amount of sodium really, really matters. Recommendations for sodium in POTS vary from 6--10 grams daily. Some people say you need this amount in addition to your normal dietary intake. That's a lot of salt!

I'm having a bad brain day- this is supposed to be gms of salt, not gms of sodium. Sigh.

At any rate, it's lots of salt.