International ME/CFS and FM Awareness Day Is On May 12, 2018
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How does Thiamine help POTS?

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Peyt, Sep 24, 2017.

  1. bombsh3ll

    bombsh3ll Senior Member

    I'm drinking enough alright, I just pee it out as quick as it goes in :( I would love to know what the answer to this is! Tried fludrocortisone and desmopressin. Neither helped me stand but the latter allows me a full night's sleep.
    sb4 likes this.
  2. JasonUT

    JasonUT Senior Member


    I have seen significant progress in my POTS symptoms with 5 approaches:
    1. High dose B1 in the form of TTFD. B1 deficiency confirmed through testing.
    2. High dose B3 in the form of Niacin and niacinamide. B3 deficiency confirmed through testing.
    3. Licorice Root Extract and Tea. Acts much like fludrocortisone.
    4. Massive salt loading and fluids. Upwards of 10-15 grams per day of sea salt.
    5. Low carb / low glycemic diet.
    Results: Prior to the above, I started with supine, resting heart rate of 60 bpm and a standing heart rate of 100-110 bpm which would not abate. Nearly 3 months later, I now have a supine, resting heart rate around 50-60 bpm. My standing heart rate will jump to 85 bpm, but will quickly lower to 75 bpm. I can now stand, sit, walk for longer periods of time before my dyautonomia symptoms flare. It's not all roses. I have to be very diligent with above 5 treatments and stay within my energy envelope. Fluid retention and low blood pressure are still issues for me plus a laundry list of other things.

    Overall, it's still too early to understand how much healing or symptom management is truly happening. I am concerned this can all fall apart with the slightest mis-step.
    Hanna, lafarfelue and sb4 like this.
  3. Gondwanaland

    Gondwanaland Senior Member

    Dr. Lonsdale recommend to pair B1 with potassium-magnesium-aspartate and a B complex. I think B2 lowers HR and/or BP. Something to look into.
    keenly likes this.
  4. Learner1

    Learner1 Forum Support Assistant

    Pacific Northwest
    Hmmm... I'm taking 300mg riboflavin-5-phosphate, in addition to 500mg benfotiamine and can't say either has lowered my HR or BP at all. (I have POTS due to EBV-caused adrenergic antibodies.)

    These nutrients tend to be used in multiple pathways which need adequate cofactors to work. Taking a huge dose of one nutrient without upping other cofactors is a recipe for unwanted side effects. Testing nutrient status to assist in decision making is critical, on some regular basis.
    keenly, Hanna, sb4 and 1 other person like this.

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