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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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4-5 weeks of florinf

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by andybonse, Mar 26, 2014.

  1. andybonse

    andybonse

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    Hi All,

    I started on florinef about 4-5 weeks ago, quater of a pill and each week had postaiium sodium etc tested and moved up a quarter.

    I got to .1mg 4 days ago, now I have not noticed any change in BP or HR supine or standing, however I have had a lot better days and more clarity in my head until I crash lol.

    When did you notice a difference worth the drug and what dose? I am male, taller so probably need more than a female? Plus my aldosterone was low to start with?

    I was told I dont need potassium supplements until over .2mg, but im getting these tested weekly to ensure it anyways, I am not well enough to go to the doctors so a nurse comes which is so helpful.

    I am eating lots of potassium foods, a pint of milk a day, orange juice a banana, lots of carrots, veg etc nuts and potato foods.

    My doctor did give me 12 meQ tablets that dissolve in water, so I have one of them a day just to be safe. My last potassium reading was 3.6 but it keeps going up and down between 3.6-4.2, so not bad at all.

    Thanks!
     
  2. SOC

    SOC Senior Member

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    My daughter and I started at 0.1 mg of Florinef daily. That works pretty well for her, but I needed to go up to 0.25mg daily to have a significant effect.

    Our cardiologist told us that it is important to drink at least 2 L of electrolyte drink while taking Florinef. He said Florinef would not be as effective (and could be bad) without extra fluids and electrolytes. I have to drink at least 3 L of fluid daily, with 2 L of it being electrolyte fluid, to feel noticeably better.

    He also advised taking 500-750 ml of electrolyte drink before bed and another 500-750 ml as soon as we wake up because people with this kind of low blood volume tend to get very dehydrated overnight and so become poorly functioning in the morning. This "fluid loading" gets us closer to normal during the day. People who don't fluid load end up spending most of the day getting up to normal blood volume sipping fluid during the day and have the best fluid volume at night when they need it less.... or so he suggested.

    We use ElectroMix on the suggestion of our ME/CFS-knowledgeable exercise physiologist. Is has no sugar or sodium. We get enough sodium in our diet and don't want to have too much. Proper balance of electrolyte minerals is important. Some people prefer to mix their own, but we find ElectroMix well-balanced, inexpensive and convenient
     
  3. andybonse

    andybonse

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    Thanks, I drink powerades and am going to buy some sea salt and nunn tablets also.

    By 0.25mg do you mean 250mcg? I believe I will be one that needs more and have had no side effects from .1mg so am pretty happy with that at least I can tolerate something touch wood lol.

    Yeah I get dehydrated over night, I wake up needing to drink and pee quite dark!
     
  4. SOC

    SOC Senior Member

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    Powerades may have more sugar than is good for you, especially if you're activity-limited as so many of us are.

    Yes, 0.25 mg is 250 mcg. That's 2.5 of the 0.1 mg tablets. Actually, I've just been increased to 0.3 mg --- 0.1 mg 3x daily.

    If you are waking up dehydrated and peeing dark, I highly recommend the pre-bed and first-morning electrolyte fluid loading. It makes me feel much better. It might take a couple of weeks for you to feel the full effect.
     
  5. andybonse

    andybonse

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    Thanks SOC, sometimes ill wake up not bad stand up and its clear and not dizzy etc, then slowly over a hour or two my head will feel horrible, nausea and have to lay down its horrible. Hoping higher dose florinef and more salt will do the trick!

    Its horrible being 22 and having no life :/
     
    Grigor and ggingues like this.
  6. SOC

    SOC Senior Member

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    Yep, that sounds like overnight dehydration and resulting low blood volume. Try the fluid-loading too.

    My cardio suggests chugging at least 500 ml of electrolyte drink as soon as you wake up and then staying in bed for 30 minutes to let it take effect before you go about your day.
     
    ggingues likes this.

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