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Pulse way down, activity level way up


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I've started about six new interventions at once: Licorice tea, elevating the head of the bed with those things from Bed Bath and Beyond, taking a B-50 twice a day plus an additional 400 micrograms of folate twice a day, Feo-Sol iron supplement once a day, and midodrine. My vital signs are stabilizing. One morning, my pulse went from 63 to 78 bpm when I stood up (without my waist-high pressure stockings). Normally, it would go from 83 to 125 bpm.

As soon as my vital signs improved, I started being able to do things. I've gone on sort of a binge of organization. My husband had gone out on Saturday and came home to find that I'd cleaned out and reorganized the kitchen cabinets and put in new shelf paper. I'm starting on cleaning out the basement. I haven't had a migraine in weeks. Normally, a migraine would be my "punishment" for trying to stand on my feet for any length of time. They don't hurt me all that much, but I really can't afford the vomiting if I'm already hypovolemic.

Quite reasonably, my husband asked my why I don't use my newfound energy to do something fun instead. I told him that I'm afraid that this phase won't last. Maybe my body will compensate for the midodrine by decreasing my blood volume still further, and I'll end up crashing again. But at least I'll have things organized by then. If you can only spend a few minutes on your feet, you can't get anything done if you have to spend those minutes wandering around the house looking for the stuff you need.

So why am I feeling better? I hope that it's not just the midodrine, although I think the midodrine is helping. Maybe it's the extra thiamine. I already take 500 mg of thiamine in the mornings. When I stopped that to indulge the curiosity of my internist, I got serious brain fog within 2 days. I suspect that it might be the folate that's helping so much. I've never taken this much folate before. Both thiamine and folate, as well as vitamin B6, are used to treat mitochondrial disorders, which could explain my predicament. The other possibility is that my low blood volume is the result of some metabolic disorder related to B vitamins. I really wish I could find a physician who could solve this riddle.

In the meantime, I suggest that everyone who has fatigue and/or blood volume problems consider taking extra B vitamins and folate. Most of us urinate way too much, so we are probably washing the water-soluble vitamins out of our system. I don't know of any contraindication to taking extra thiamine and folate, but definitely ask your doctor and your pharmacist before you start it. Some people might have problems with vitamin B6 causing vasodilation, but that has obviously not been a problem for me.

If you are diabetic, I strongly recommend that you take extra thiamine, preferably in a lipid-soluble form (see www.thiasure.com). I've read numerous articles in the peer-reviewed medical literature about extra thiamine reversing diabetic neuropathy and preventing eye and kidney damage in diabetic rats and humans. Whenever someone tells me about someone in the hospital for complications related to diabetes, I print out these articles for the person's doctor. So far, no one has gotten any thiamine as a result of my efforts. I feel like I'm casting pearls before swine, but sooner or later, I'll prevail and prevent someone from going blind or having kidney failure.

Be careful about taking iron supplements. There is a genetic disorder called hemochromatosis (iron overload disease) that can cause anemia. Make sure that your iron stores really are low before you take iron supplements! And keep them out of the reach of children. Iron supplements are a major cause of fatal poisoning in children. Also, if you have a mitochondrial disease, the iron could cause more oxidative stress than you can handle.

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Wow! That's wonderful news! Thanks for sharing your story and information! I am so glad that you are feeling better. We don't get to hear that often enough. I will try out your vitamin suggestions. Great information. Thanks!! Laura

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