Lizzorat

60d

Does anyone have any advice on dehydration with POTS? I am newly diagnosed with POTS and ever since it got cold I feel so thirsty that I want to cry. I keep drinking water and it just doesn’t get better. I do liquid iv and salt tablets. I feel like I can’t even concentrate on anything or function because of this.

Dehydration

Ehlers-Danlos Syndrome (EDS)

Postural Orthostatic Tachycardia Syndrome (POTS)

Sodium Zirconium Cyclosilicate

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  • Mira.P.Takki

    60d

    How much sodium are you taking in as your base?

    • Lizzorat

      60d

      I don’t really know…I haven’t been counting I was told it’s unlikely i would get too much so just do as much as I can. I know the salt pills have around 200mg

  • pepperpatch

    60d

    what i do to keep from being super dehydrated is i use koolaid powder and table salt in my water. drinking the water with both the sugar and salt in it seems to help me a lot! its also a lot cheaper than buying gatorade but if u want gatorade thats also a good option.

  • Mira.P.Takki

    60d

    I recently spoke with the specialist that manages my POTS… Prior to this provider, my POTS has been completely mismanaged, and I never knew how much sodium to take and when. Long story short, she says that a POTS patient should be taking in at least 4,000 mg of Sodium through electrolyte replacement sources such as Nuun, Liquid IV, Relyte. Try to steer clear of the ones that have sugar, mainly because you end up taking in a lot of extra sugar with the quantities that we need to take. I take the Re-kyte (hydration support) electrolyte caps from Real Salt. You can buy them on Amazon or re-lyte.com They have 880 mg of sodium for every two caps, and in my opinion, it’s a million times easier to swallow capsules and drink lots of fluids rather than drink a ton of salty and odd tasting mixes. I take them 3 times a day every day, and then add tons of salt to every meal, and add Nuun to sparkling water on the particularly bad days!

    • Lizzorat

      60d

      Okay I don’t think I am anywhere near 4,000. I haven’t gotten a whole lot of guidance on this. I just started seeing a rheumatologist but the main focus has been on muscular/tissue problems that need surgery and stuff but this is what’s making me most uncomfortable in the moment and concerns me most with getting back to work

    • Lizzorat

      60d

      thank you!

      • Mira.P.Takki

        60d

        yes, of course!!! Any time! The overall recommendation that I see on the pots pages says up to 10,000mg of sodium per day. Maybe try doing a search on YouTube for “Functional Neurology POTS”, I have found a lot great educational videos from different POTS specialists and treatment centers around the world. Also there is tons of information in the educational videos that the Ehler’s Danlos Society puts out. I usually check their videos and then look for content put out by the specialists that speak at their events.

  • Mira.P.Takki

    60d

    Re-Lyte not kyte

  • WLN

    60d

    My cardiologist prescribes IV saline through my port. Depending on the weather I get 2-3 litres on top of 2-4 litres orally

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