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Anything like florinef?

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by CallieAndToby, Jan 2, 2013.

  1. CallieAndToby

    CallieAndToby Senior Member

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    I definitely need something to help retain fluids. I have adrenaline all the time so it goes straight through me. Florinef helped at first but I started having adverse side effects. I take about 6 salt tablets a day, doesn't really help.

    I have very bad IC and recently went to shands medical center. They did a battery of tests with catheters and it showed that soon after I'd empty my bladder there'd me a lot more urine in it.

    Lithium seemed to help for a few months then stopped. Also, I can't seem to find a good electrolyte drink that doesn't have citric acid or all the sugar calories. Thanks.
     
  2. Sparrow

    Sparrow Senior Member

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    Not sure how much of this is new news for you, but I'll share it just in case it helps any.

    It will probably be tough to find a pre-made electrolyte drink without citric acid. They add the acid in part to shift the pH enough that botulism can't thrive in it (same with many other beverages).

    I've used Nuun tablets before. Some of the varieties don't have glucose in them, but they do still have sorbitol, etc. (wish they didn't).

    And just to confuse matters further, I read some research studies on hydration that seemed to be suggesting that glucose might be necessary for optimal absorption.

    Licorice root can be a bit dangerous in large quantities (particularly if you've had any low potassium issues or high blood pressure), but it should act like aldosterone in the body and help to increase fluid retention. Just keep an eye on your BP and potassium if taking it. I can't say whether it's made any significant difference for me, but I keep taking it just in case. Unfortunately in your case, it also reduces the breakdown of cortisol, so if you feel like you're full of adrenaline all the time, that might just make things worse overall.

    If you find you're peeing really a lot, you might want to consider being tested for diabetes insipidus if you haven't already been (it's the one caused by a lack of anti-diuretic hormone, not the one related to blood sugar or insulin).

    Good luck! I'm interested to see other suggestions, since I am always struggling to keep my BP and blood volume up as well.
     
    SOC and ahimsa like this.
  3. CallieAndToby

    CallieAndToby Senior Member

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    Great suggestions! Yea I think as far as the citric acid I'll just have to make sure and take my prelief which is an acidic neutralizer and elmiron. Sobi is now making an electrolyte drink sweetened with stevia and they taste quite good.
     
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Many of us do have or have had diabetes insipidus and that seems to come from HPA axis dysfunction, so another angle to check as that would be working on the causes. Rich thought that low glutathione was related to the HPA axis dysfuntion--hence methylation protocols should help. He has some good posts on this.

    I had DI, and no longer have it, but I can't say for sure what helped since I have done so many things, but I have worked a lot with methylation.

    Best,
    Sushi
     
  5. taniaaust1

    taniaaust1 Senior Member

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    I used to have to wake up during the night up to 6 times per night to pee. In my case homoeopathy fixed the night time issue... amazingly one or two days treatment and my nightly issue vanished .. I wouldnt have believed this if this hadnt happened to me. (I went to an exceptional homoepath who did the prescribing.. he had patients flying in to see him. Unfortunately that was the only thing homoeopathy was able to help in my case).
     
  6. Ema

    Ema Senior Member

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    I second the recommendation to test for diabetes insipidus if you find yourself urinating copiously. It does seem to be pretty common in HPA dysfunction.

    What side effects did you get with Florinef? 6 salt tabs is a really low amount, quite honestly. I know people that take 3-4x that to keep sodium up while on Florinef. Florinef is also a potassium wasting drug. Were you also taking slow release potassium with it? Since it helped at first, I wonder if some of the side effects could be managed by better electrolyte supplementation?

    There is also a bio-identical aldosterone that is available from a very few compounding pharmacies that might be an option for you.

    I think that there is a mast cell component to IC as well as a hormonal aspect. I know a few people have had good luck with the Algonot product Cystoprotek for IC.
     
    August59, taniaaust1, ahimsa and 2 others like this.
  7. xks201

    xks201 Senior Member

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    desmopressin is the big daddy...
     
  8. CallieAndToby

    CallieAndToby Senior Member

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    How have I not heard of this? I get up and down 40 + times in the night. I've been seeing specialists since I was 7 years old, WTF. I also went down to shands several times and they literally told me they had nothing to recommend and my insurance won't pay for botox. Thanks though. Good to know and write down in my little book.
     
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    maybe add hydrocort to flor, adrenaline surges can be a sign of low cortisol levels, better cortisol levels can help reduce adrenaline surgers in some plus it can help with retaining fluid some too but not as strong as flor
     
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  10. ahimsa

    ahimsa Senior Member

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    Wow, that's a lot of times! Back when I had to get up during the night to urinate it was only 1 or 2 times--3 at the most. Florinef made that symptom go away for me. I no longer have to get up during the night even though I drink 3 liters of water daily.

    I was curious about desmopressin (even though I don't think I have any need for it) so I did a search and found this blog entry from a patient:

    http://bobisdysautonomia.blogspot.com/2012/04/to-pee-or-not-to-pee-desmopressin.html

    Apparently she had no luck with midodrine (a drug that has been helpful for me) but she has had good luck with this drug.

    I hope it is useful for someone out there!
     
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  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    a saying in cfs/me is
    'drink like a fish and piss like a race horse'
    i think that describes alot of us
     
  12. taniaaust1

    taniaaust1 Senior Member

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    Wow.. that is crazy, I thought having to wake up to go 6-7 times per night was bad enough. I really hope you find someone to help. I dont know how you are surviving with your sleep with getting up that many times per night.

    Consider just wearing incontience pants to bed (at least then you wont have to keep gettign up and will have less disturbed sleep) till you can sort the huge issue out.
     
  13. CallieAndToby

    CallieAndToby Senior Member

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    It's because I have severe interstitial cystitis. We have false pain, frequency, and urgency. Maybe a tiny bit of urine feels like a full bladder. We can't empty correctly either b/c of spasming.

    I don't drink much which is a problem with POTS but I can't sleep. Also, I have to avoid anything acidic b/c it burns my bladder. Plus the tests I did at Shands I would fully empty (though still feel like I had to go) and within minutes there would be more urine in my bladder, probably the constant adrenaline. Boy o boy, talk about being stuck in a god awful loop, damned either way.

    It's getting to the point to where I'm too tired and exhausted to get up and a lot of times just lie awake in bed all night b/c I simply cannot get up. I am considering at least buying a bed pan. My friend also has IC but hers is mostly not being able to empty and having terrible pain, she can't sleep more than 2 hours a night.

    If you all are interested in learning more, this is also another neuro immune illness and is under funded and researched by the government. I've had this disorder since I was 7 and they haven't made any strides in research or treatment. Visit: http://www.ichelp.org/page.aspx?pid=327 or http://www.ic-network.com/ .
     
    ahimsa likes this.
  14. CallieAndToby

    CallieAndToby Senior Member

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    They are using botox for it now but it is an only FDA approved/insurance covered if you have MS.
     
  15. CallieAndToby

    CallieAndToby Senior Member

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    No actually most IC patients don't even drink much at all, at least I don't. I've heard of some patients taking a few sips a days but symptoms persisted, it's like phantom pain.
     
  16. ahimsa

    ahimsa Senior Member

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    I'm so sorry to hear this. It sounds like a terrible problem. :(

    Thanks for explaining a bit more. It's always annoying to have multiple problems to deal with. POTS patients often do better (not a cure, just better) by drinking more water and yet you have this other problem that's better if you drink less water. What a situation to be in.
     
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  17. ukxmrv

    ukxmrv Senior Member

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    Callie,

    This may be of little use to you because of the severe IC (poor you, sounds horrible!) but Dr Cheney had some earlier thoughts on blood volume etc in PWCFS. He was looking at a home brew version of drinks like Gookinaide

    http://www.dfwcfids.org/healing/gokhmbrw.htm

    There is also a version of the Blasi salts mentioned at the end in use in Europe and also by Dr Enlander (New York doc). Not sure what the current ingredients are now though.

    There was a thread on drinks here

    http://forums.phoenixrising.me/index.php?threads/electrolyte-rehydration-recipes-ingredients.3900/
     
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  18. CallieAndToby

    CallieAndToby Senior Member

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    Yes exactly! Quite the bind.

    Thanks all for the suggestions. I do have a phone consult with my dys. specialist and I hope to present many of these ideas. Your thoughtfulness on the matter is much appreciated.
     
  19. taniaaust1

    taniaaust1 Senior Member

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    If Im remembering correctly IC may of been listed as a coexisting ME/CFS condition in the canadian consesus document.

    My FM nanna .. also gets IC.
     
    CallieAndToby likes this.
  20. voner

    voner Senior Member

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