RaiinbowEyes
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RaiinbowEyes
@raiinboweyes.bsky.social
Chronically ill, disabled, cat mom, aspiring medical science communicator, witch, nerd. Still COVIDing. I follow spoonies back 🥄
Two?? What is anyone even doing?! Why is this not getting more attention and resources??
December 7, 2024 at 1:31 AM
Want to know what the difference is between a proper ORS and an electrolyte drink is? Check out my last thread for the details 🙂

bsky.app/profile/raii...
If you have #POTS and #MECFS and are affected by the #IVfluids shortage, this thread is for you.
Did you know a proper Oral Rehydration Solution is proven to be as hydrating as IV fluids? And even more beneficial for than IV fluids in some ways? Not regular electrolyte drinks. Let’s talk. #NEISvoid
December 6, 2024 at 6:48 PM
So I hope that this thread impresses just how much of a difference it can make to use an actual ORS, compared to trendy electrolyte drink product brands. Like #LiquidIV or #LMNT. It’s fine if you like them & they help you! But education & informed decisions are so important for managing illness 💗
December 6, 2024 at 6:48 PM
- distressing, and less risky treatment than IV fluids. Especially with regular occurring IV Fluid Therapy which has its own set of short & long term risks.

Some people with POTS have been able to avoid needing IV fluids, or have even been able to come off of IV Fluid Therapy by utilizing ORSs!
December 6, 2024 at 6:48 PM
Yes, this study has limitations. But in POTS research is still relativity pretty limited, so unfortunately limitations are part of what we have to take in stride for now.

These findings are still significant, especially with an oral ORS being such a safer, more accessible, more affordable, less -
December 6, 2024 at 6:48 PM
- in the US you can buy under the brands Trioral or Normalyte. Pedialyte is the old ORS formula, which is still as effective, it’s just higher osmolarity. You can make your own ORS for POTS with 2 ingredients.

(Sorry for lack of alt text for this image in the last post! This one has alt text.)
December 6, 2024 at 6:48 PM
Saline IVs were not effective, though, at increasing blood flows to the brain, increasing cardiac output & mean arterial pressure. ORS, on the other hand, improved all three- and normalized cerebral blood flows to the brain! Which is huge for POTS!

The subjects were given the WHO formula, which -
December 6, 2024 at 6:48 PM
In this study, both saline IVs and ORS were effective at maintaining blood pressure. Both significantly improved orthostatic intolerance- as measured by the orthostatic index- but with the ORS being a bit more effective!
This change was quick too, as measurements were taken 1 hour after.
December 6, 2024 at 6:48 PM
There’s a LOT of things I can get into more detail on here. But this is hecka long already. I think I’m going to be using the hashtag #ORSforPOTS in the future to make the related threads easier to find.
Stay hydrated, friends! 💗

#IVfluidShortage
#dysautonomia #chronicillness
December 4, 2024 at 6:40 PM
You can also make your own by ordering glucose/dextrose powder and table salt. It’s harder on the taste buds, but it’s just as effective. Using 3/4 tsp iodized salt and 14g or ~2 Tbsp glucose powder in 1 liter of water.
December 4, 2024 at 6:40 PM
But whenever there is a shortage like this, the best alternative is replacing all electrolytes with a proper ORS.
In the US ORS products include Trioral, Normalyte, and Pedialyte. I recommend Trioral as it has the least ingredients (for reactive people) and it’s 7.5x cheaper per 16oz serving.
December 4, 2024 at 6:40 PM
How long does it take for the RAAS to recover after coming off IV fluid therapy? It’s unknown as far as I know. Some can come off and others keep trying and are unsuccessful. We are in new territory here. Maybe some experts who deal with this have a time frame but we do not currently.
December 4, 2024 at 6:40 PM
This means that the body is able to absorb even less sodium and water orally than before. This can then cause a physical dependency on IV fluids for even just adequate hydration, backfiring for the patient.
This is part of why so many dysautonomia specialists don’t like to prescribe them anymore.
December 4, 2024 at 6:40 PM
- this causes a kind of malabsorption of sodium and water. Where the body does not absorb & retain them as it should.
This is part of why an ORS is so much more helpful here.

But when patients with this issue get IV fluids on a frequent reoccurring basis, the RAAS system becomes more suppressed.
December 4, 2024 at 6:40 PM
In POTS our autonomic nervous system (ANS) is dysfunctional, thus why it’s called dysautonomia. The ANS interacts with the RAAS, but because the ANS isn’t working like it should, the RAAS may be getting wrong signals from our dysfunctional ANS.

Long story short (as this thread is already long) -
December 4, 2024 at 6:40 PM
It’s been found that many with these conditions have a dysfunctional RAAS system. The renin-angiotensin-aldosterone system is the system of hormones, enzymes, proteins, and reactions that regulate your blood volume, fluid balance, electrolyte balance, and blood pressure on a long-term basis.
December 4, 2024 at 6:40 PM
There is a hitch here for those who are on regular fluid infusions- your dependency on IVs may mean it takes time for this to work properly.
To explain that, we need to talk about what often causes dependency on IV fluids in POTS and ME/CFS: it’s called the Renin-aldosterone Paradox.
December 4, 2024 at 6:40 PM
- people with POTS have been able to avoid needing IV fluids, and have been been able to come off of regular IV fluid Therapy.

It makes sense as the ORS was created to save lives from dehydration in places and situations where IV fluids are not accessible.
December 4, 2024 at 6:40 PM
Regular sugar, sucrose, cannot use this transport mechanism. The body has to break the sucrose down into fructose and glucose first. According to the WHO, more than x2 is needed - 40g sugar vs 13.5g glucose- per liter. But even then, sugar is still not as effective.

By switching to an ORS, many -
December 4, 2024 at 6:40 PM