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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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How does Thiamine help POTS?

B

bombsh3ll

Senior Member
Messages
287
Rooney said:
Dr. Nancy Klimas said that if our pulse is higher than the 70s sitting, we are not drinking enough water. My cardiologist said the heart needs something to press against re water.
Click to expand...

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.
 
J

JasonUT

Senior Member
Messages
303
Hello,

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.
 
Gondwanaland

Gondwanaland

Senior Member
Messages
5,094
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.
 
Learner1

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Gondwanaland said:
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.
Click to expand...
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.
 
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