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How much salt and water with Florinef?

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Ninan, Jan 23, 2014.

  1. Ninan

    Ninan Senior Member

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    I just started Florinef. Been upping the dose every other day and yesterday I reached 0,1 mg. And felt fantastic!

    Today though, I feel pretty crappy. Dizzy and really slow upstairs.

    Could it be that I take too small amounts of salt and water? I've looked for recommended amounts with no success. How much should I take?
    Last edited: Jan 23, 2014
  2. Ninan

    Ninan Senior Member

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    Two liters of water and some peanutbutter with extra salt on top later: Feeling better.
  3. SOC

    SOC Moderator and Senior Member

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    My cardio said 2-3 litres of electrolyte-balanced fluids daily. That much water without electrolytes can wash out necessary minerals, I was told. I use ElectroMix in water for my electrolyte-balanced fluid, but there are other options.
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Don't forget potassium. Florinef can deplete it. Potassium needs to be checked regularly while on Florinef.

    Best,
    Sushi
    ahimsa and SOC like this.
  5. Ninan

    Ninan Senior Member

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    Thanks SOC! So I need to drink one extra liter. It's just that there is so much sugar in those electrolyte drinks. I'm thinking of making my own with D-ribose in it instead. Just salt, water and D-ribose, maybe?
  6. SOC

    SOC Moderator and Senior Member

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    ElectroMix has no sugar. Not sweet at all. That's one of the reasons I like it.
  7. Ninan

    Ninan Senior Member

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    Thanks for the reminder, Sushi. I just started a few days ago so I don't think that could be it yet? Anyway, I've ordered potassium so I should have it soon. Do you know how much to take?
  8. Ninan

    Ninan Senior Member

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    I see. That's great. I'll look for something like it, guess we don't have it here.
  9. SOC

    SOC Moderator and Senior Member

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    iherb has it here. Perhaps they ship to Sweden?
  10. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I think it varies from person to person, but until you get test results maybe make sure you eat something like a banana each day and consider taking whatever the recommended dose of potassium is. You could probably find more information on the dinet forum: http://forums.dinet.org/index.php?/forum/4-dinet-forums/

    Sushi
    ahimsa likes this.
  11. Ninan

    Ninan Senior Member

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    Yes, they ship here. I'll look in to it, thanks! :thumbsup:
  12. Ninan

    Ninan Senior Member

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    Ok, thanks. I'm a huge banana fan so I should be okay for a few days, I guess.
  13. Ninan

    Ninan Senior Member

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    Btw: I feel soo much better! I'm surfing and watching TV at the same time! It's been years! Wonder how many percent of my ME that's really POTS.
  14. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I use this also, but I just add it to E-lyte for better taste, and don't feel nearly as dehydrated as I used to!

    You can get the Electromix for about $1 cheaper on Vitacost and Swanson. FYI And they often offer discounts, Swanson had 1 recently of $15 off of $75 purchase.

    http://elytesport.com/products/products.html

    GG

    PS I buy it from my Drs office, they are "only" 15.60 per bottle, and if I order more than $200, I get a 10% discount and shipping is free! I have not found it anywhere else for cheaper. FYI But if someone knows of a cheaper source, please share!
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  15. taniaaust1

    taniaaust1 Senior Member

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    As others said, those with POTS should be drinking 2-3L of water and increasing salt. A banana per day is recommended for potassium.
    ahimsa and Ninan like this.
  16. Ninan

    Ninan Senior Member

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    Great. Just discovered my first red stretch marks ever, on my side. :(

    Obviously an adverse effect. Anyone else got them? Wonder if I'll have more?

    Sigh. Guess I'll wear them like war wounds.
  17. SOC

    SOC Moderator and Senior Member

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    I didn't get any stretch marks as a result of taking Florinef. Pregnancy, now that's another matter. ;)

    I did gain a couple of pounds at first -- from the extra water, I assume. Shortly after, however, I lost that extra weight and more. I'm guessing that's because I can be upright more and that extra bit of activity is enough to burn off a little weight.
    Ninan likes this.
  18. Ninan

    Ninan Senior Member

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    :) Well, I know most people get them one way or another. (I just read about body builders getting them in the biceps area. Now THAT's one thing I can't see happening to me any time soon.) Still I kind of thought not having them was one of the few perks of not being able to have children. (I'm 33 and just too sick. :()

    Not worse today anyway and I'm on paleo (with the very non-paleo addition of D-ribose but I figured if they could have bananas and peanuts in Stockholm during stone age, why not? Anyway I seem to need it.) so I shouldn't gain too much, hopefully. I'm up one kilo but that's probably as you say, @SOC, water. And I'm up and around more so that should help.

    I guess ageing is just more bearable when you're able to, well, live. But I'm better. That's what matters.
  19. Ninan

    Ninan Senior Member

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    About two weeks now and I'm beginning to feel worse again. Still taking 0,1 and worrying that the effect was only temporary.

    It sucks to feel worse. Have less energy, am losing words and feel dizzy. My brain is obviously not getting enough oxygen. Trying 0,15.

    @SOC , I know you take more than 0,1, did you experience this loss of effect on a lower dose?

    @Sushi , do you know about this?
  20. SOC

    SOC Moderator and Senior Member

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    Yes, I did, although not as dramatically as you. Are you drinking lots (2-3 liters) of electrolyte fluids?

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