"Drink more water"

[mango]

Why telling pwOI to just drink more water might not be as helpful as you'd think. I feel this Instagram post is worth a read, including the comments.

 

[Jonathan Edwards]

I cannot load that link.

 

[Trish]

I think you have to be signed up to Instagram. It's just a chat between people with POTS saying drinking lots more water doesn't help them and it's better to add electrolytes. I only read the first few messages

 

[ahimsa]

I cannot load that link.

Are you able to scroll through the 8 images in the embedded link?

On that first image there's a small arrow in a circle on the right side in the middle of the green area, under the word water, that lets you scroll to the next image. And there are small whitish dots at the bottom that show the total number (8) of images.

Here are screen shots (thumbnails) of the images that I took here on the forum. I didn't have to click and go to another tab or window.



(oops, screenshots are in reverse order, but I don't want to reload the files)

You should be able to scroll through these images without clicking on the Instagram link.

FYI, I'm not logged in to instagram (I have a very seldom used account) but for some reason it let me click on the link to look at the comments.

 

[mango]

I think you have to be signed up to Instagram. It's just a chat between people with POTS saying drinking lots more water doesn't help them and it's better to add electrolytes. I only read the first few messages

I'd say it's more than that, though. For example, they also share/discuss many different reasons why it's not always easy or possible to just drink more water (gastroparesis, nausea, urinary incontinence, etc), as well as ideas for how to make it easier if you for example often forget to drink enough, or if you don't like the taste of plain water, and how straws with different textures can make it more interesting etc.

In short, don't just tell people to drink more water but talk to them, ask them how much they are drinking already and find out why they aren't drinking more if they aren't already drinking enough.

 

[mango]

Here are screen shots (thumbnails) of the images that I took here on the forum.

Thank you so much for adding these

 

[Jonathan Edwards]

But do we even know that drinking more water is useful for OI? I think it is quite unlikely to be helpful for most causes of OI and there are several, so there is unlikely to be a general rule.

The images suggest there are people who think they know how to solver the problem of getting people to drink more water - but I don't see any evidence.

 

[mango]

But do we even know that drinking more water is useful for OI? I think it is quite unlikely to be helpful for most causes of OI and there are several, so there is unlikely to be a general rule.

The images suggest there are people who think they know how to solver the problem of getting people to drink more water - but I don't see any evidence.

Some evidence (for ORS) have been discussed earlier on the forum. I think a study by Medow et al for example, and something by Peter Rowe maybe? Unless I'm misremembering. (Sorry, too ill to search for and link posts.)

 

[ahimsa]

One small study (10 patients with POTS, 15 healthy controls) compared 3 groups - no fluids, ORS (oral rehydration solution), and IV saline.

That study found that both treatments increased orthostatic tolerance in patients by about the same amount (no improvement in healthy controls). This is good because IV has more risks and is less convenient than ORS.

Obviously ORS only works for a short time, just a temporary "bandaid" kind of treatment. But very useful for those who can get benefit from it (no idea who it helps and who it does not help).

Anyway, in the study they used a special tool - lower body negative pressure - to test what level of pressure made someone's blood pressure drop. This is a screen shot from one of the videos that discussed the study.



I know I'm biased. I starting drinking pedialyte and other brands of ORS (Normalyte is another brand - I like unflavored/no colors) right after my tilt table test showed problems. It has always helped reduce symptoms somewhat (not a cure!) for me. So I was not surprised by the study.

However, maybe it only works for a small percentage of patients with POTS or NMH, and maybe this study has lots of flaws (it is small), etc, etc.

EDIT: Found the link to the study - https://pubmed.ncbi.nlm.nih.gov/31405524/

I'm not sure why the title says "children." Quote from the study: "Healthy control subjects and patients with orthostatic intolerance, aged 15 to 29 years old were recruited."

 

[mango]

Thank you so much for adding this! Very helpful

It has always helped reduce symptoms somewhat (not a cure!) for me.

Same here. But only one particular kind of ORS (Swedish brand name is Resorb, contains glucose which the others usually don't).

 

[ahimsa]

Same here. But only one particular kind of ORS (Swedish brand name is Resorb, contains glucose which the others usually don't).

The two brands I mentioned (Pedialyte and Normalyte) both contain glucose (aka, dextrose). And the WHO recipe for ORS also includes glucose. Go to this link and scroll down to the formulation table:

https://rehydrate.org/ors/low-osmolarity-ors.htm​

By the way, I guess ORS stands for Oral Rehydration Salts? I keep thinking the S stands for solution.

 

[cassava7]

Worth noting is that sugar free electrolyte drinks are useless as sodium requires some glucose to be absorbed in the small intestine (sodium-glucose co-transport mechanism). This is why the WHO formula calls for a small amount of glucose. From the Wikipedia article on oral rehydration therapy:

Sodium absorption occurs in two stages. The first is via intestinal epithelial cells (enterocytes). Sodium passes into these cells by co-transport with glucose, via the SGLT1 protein. From the intestinal epithelial cells, sodium is pumped by active transport via the sodium-potassium pump through the basolateral cell membrane into the extracellular space. (…)

[…]

The co-transport of glucose into epithelial cells via the SGLT1 protein requires sodium. Two sodium ions and one molecule of glucose (or galactose) are transported together across the cell membrane via the SGLT1 protein. Without glucose, intestinal sodium is not absorbed. This is why oral rehydration salts include both sodium and glucose.

 

[Arvo]

Here are screen shots (thumbnails) of the images that I took here on the forum. I didn't have to click and go to another tab or window.

View attachment 19811 View attachment 19812 View attachment 19813 View attachment 19814 View attachment 19815 View attachment 19816 View attachment 19817 View attachment 19818

(oops, screenshots are in reverse order, but I don't want to reload the files)

Those thumbnails are wholesome - a hcw thinking along without being patronising. Plus those ideas can inspire people to make their own analysis and make adjustments by themselves.

 

[ahimsa]

Worth noting is that sugar free electrolyte drinks are useless as sodium requires some glucose to be absorbed in the small intestine (sodium-glucose co-transport mechanism). This is why the WHO formula calls for a small amount of glucose. From the Wikipedia article on oral rehydration therapy:

I'm not sure that sugar free electrolytes are completely worthless. It may be more complicated than that.

Oral rehydration therapy was developed mainly for people (especially children) who get dehydrated due to vomiting and diarrhea. So they definitely need the sugar along with the sodium and water.

Those of us who have other types of dehydration (or low blood volume) might get some benefit from solutions that don't have sugar. I don't know.

Several folks on this forum (and on the old forum) have said that people with orthostatic intolerance should not need any sugar (glucose/dextrose) in their electrolyte solutions unless they have not been able to eat recently. There should be enough in the bloodstream already.

All I know is that I've tried both, with and without sugar. And even though I have eaten food earlier in the day those solutions with glucose or dextrose (Pedialyte, Normalyte, or homemade mix with the same ingredients) work better for me. I may be biased but I'll stick to what works for me.

And I was happy to see that, at least in this one study, the ORS did improve orthostatic tolerance. It's interesting that they did not choose a solution that was just salt(s) and water.

Also, when I say ORS works for me, I mean a short term reduction in symptoms.

I never understood those scoffing comments that electrolyte solutions (or pain killers, or whatever) are "only short term solutions" or "only address the symptoms."

Yes! I want fewer symptoms! What's wrong with that?!

I'd love a cure! But until that happens I'm all in favor of reducing my symptoms.

EDIT: Fixed some typos.

 

[mango]

All I know is that I've tried both, with and without sugar. And even though I have eaten food earlier in the day those solutions with glucose or dextrose (Pedialyte, Normalyte, or homemade mix with the same ingredients) work better for me. I may be biased but I'll stick to what works for me.

[...]

Also, when I say ORS works for me, I mean a short term reduction in symptoms.

I never understood those scoffing comments that electrolyte solutions (or pain killers, or whatever) are "only short term solutions" or "only address the symptoms."

Yes! I want fewer symptoms! What's wrong with that?!

I'd love a cure! But until that happens I'm all in favor of reducing my symptoms.

Same. 100% agree!

Sometimes a big glass or two of Resorb can make the difference between being able to keep your body upright for long enough to use the toilet, or fainting on the way there... Doesn't have to be a cure or help long-term to be incredible valuable.