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

[Replenished]

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.

You are completely right. That is a lot of salt and I won't have been taking that much. Although I do take salt on top of the electrolyte drinks.

If you or anyone knows of any Oral rehydration solution I can get in the UK that matches the composition of those recommended in the link you posted earlier, as the ones listed there don't deliver to the UK. There's tons of electrolyte products available but the article implies they need to be in that specific ratio.
https://www.healthrising.org/blog/2...al-rehydration-pots-chronic-fatigue-syndrome/

 

[wabi-sabi]

That is a lot of salt and I won't have been taking that much.

And sometimes you need medication on top of all the salt. But this is at least something you can work on at home if you don't a physician helping you with meds.

 

[Replenished]

And sometimes you need medication on top of all the salt. But this is at least something you can work on at home if you don't a physician helping you with meds.

Yeah, seems limited in terms of medication for helping retain fluid. I have demsopressin, it does near to nothing so I rarely take it. I have fludrocortisone which i'm trying again at the moment. It seems to help a tiny bit but it barely touches the sides.

 

[Husband of]

I have often heard people on here say pwme have insufficient potassium and that they shoild address that. But in this thread people are saying you should have very high quantities of sodium.

pottassium and sodium compete with each other right? So does this mean addressing pots by increasing sodium will lead to issues associated with low pottassium that cant be fixed without recausing pots issues?

 

[wabi-sabi]

I have often heard people on here say pwme have insufficient potassium and that they shoild address that. But in this thread people are saying you should have very high quantities of sodium.

Sodium is the one electrolyte that helps your body retain fluid. That's why it's so important for POTS.

Potassium levels are important too, of course. Your body uses both for lots of functions that I can't remember right now, but I can look up when I've had more sleep.

The in a nutshell version is like this: commercially prepared salt supplements like Vitassium or Normalyte have potassium in them in the right balance with sodium so you don't have to figure it out for yourself.

Also, when you add salt to your diet, it's important to do it in a healthy way. Americans in general don't get enough potassium, because typical American diets that are high in processed foods. Potassium comes in fruits and veggies which most Americans don't eat enough off.

So think of two salty meals: 1)walking tacos made with fritos and canned chili or 2)homemade chicken soup with lots of veggies and a salty tomato salad. You could make both meals with lots of sodium (good for POTS), but the frito meal is potassium deficient and the homemade soup and salad (esp tomatoes) has potassium.

Upshot: POTS people need more sodium than normal people. Standard American diets are potassium deficient because they are vegetable deficient. Everyone needs more veggies to get enough potassium. Answer: salt our veggies and get both sodium and potassium together! Don't use fritos and the like to up our sodium intake. Your doc should test your blood electrolyte levels periodically to make sure everything is in balance.

Potassium overdoses can be fatal, so be sure to talk to our doctor if you are getting potassium in supplement form to make sure you are not getting too much. You are not going to get a potassium overdose from whole wheat toast with cottage cheese and salted tomatoes ( a healthy high sodium and potassium snack).

 

[LINE]

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

I don't think I wrote that out with clarity, sorry about that.

Yes, related to POTS. The adrenals are central to homeostasis which includes quite a few things including secreting adequate cortisol. The orthostatic test (blood pressure while lying down then standing up) is really a measure of how strong the adrenals are. You could make a good argument that this is a homeostatic event.

Adrenal activity is always going to be strong when faced with stress which includes not only emotional stress but also immune activity (infections + toxins). If you keep the adrenals strong, this translates to increased resistance and better outcomes.

This post may be a little lengthy, but the synopsis is that certain nutrients help with adrenal function including vitamin b5, vitamin C etc. Ramblings: Adrenal Fatigue (patrickrambling-pb.blogspot.com)

That is my post, so if you have questions, just ping me here.

 

[LINE]

If sodium is needed more than potassium, then suspect the third stage of stress according to Hans Selye which is the exhaustion stage. (Selye is considered the grandfather of the adrenal models).

 

[Marylib]

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?

I lucked out and found a POTS doc. It was pure luck.

 

[Bansaw]

If you or anyone knows of any Oral rehydration solution I can get in the UK that matches the composition of those recommended in the link you posted earlier, as the ones listed there don't deliver to the UK. There's tons of electrolyte products available but the article implies they need to be in that specific ratio.
https://www.healthrising.org/blog/2...al-rehydration-pots-chronic-fatigue-syndrome/

I phoned Jinas Brothers. They are the least expensive but you have to buy 125 sachets minimum.
I went for Trioral which has the same ingredient I think. Just want to see if it has a positive impact on me before I buy in bulk!
https://www.amazon.com/TRIORAL-Rehy...9U2/ref=as_li_ss_tl?dchild=1&keywords=trioral

 

[Tammy]

- 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.

Also Ashwagandha and Licorice root

 

[Bansaw]

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.

In the past when I've tried to hydrate with just satly water, its been my experience that I urinate that out quite quickly. However, just trying these ORS now, my body seems to be retaining these fluids!

 

[Replenished]

In the past when I've tried to hydrate with just satly water, its been my experience that I urinate that out quite quickly. However, just trying these ORS now, my body seems to be retaining these fluids!

Good news! I'm still trying to find a suitable version of it in the UK. As the other electrolyte powders don't help.

 

[Bansaw]

I got some packets of ORS.
Just to add to the complexity, I do have type 2 diabetes.
ORS contains up to 20 grams of glucose anhydrous per liter. I'm researching whether that amount of glucose will negatively affect my blood sugar levels. My google searching so far has thrown up mixed opinions. (I'm drinking a liter in about 25 minutes)

 

[Graduate2023]

Looking for peer reviewed articles on benefits of IV saline for CFS patients. I could only find one that was related to POTS /CFS. I need something for CFS stand alone to give to my neuromuscular doctor so that I can get IV fluids.

 

[wabi-sabi]

I take vitassium and normalyte and find those helpful. Tried IV saline once. it gave me a boost and then quite a crash. I decided since it isn't practical to have an IV 24/7 that I would stick to the oral stuff.

Normalyte has the most salt and least sugar, so it works for me.

 

[Graduate2023]

Thank you very much for this information. For some reason, I do not get hydrated from oral water, I think it has to do with the cells.

 

[wabi-sabi]

I do not get hydrated from oral water,

Are you taking salt or just water?

 

[Graduate2023]

Salt water, electrolyte water

 

[linusbert]

Thank you very much for this information. For some reason, I do not get hydrated from oral water, I think it has to do with the cells.

have you dried "sipping" over the day? like taking just a little sip every 10-15minutes?