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About spinner

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    Advanced Member
  • Birthday 04/10/1961

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    South Carolina
  • Interests
    Tennis (before POTS), theology, travel, reading,

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  1. Another thing about all this is that-----many of us here dont have traditional POTS. We may have dysautonomia and related chronic diseases. Ive never had uncontrolled heartbeat/BP upon standing, but only upon exertion. But i have EVERY other symptom, confirmed sweating issues, the entire lot of problems. Ive even got sleep apnea, and have been using klonopin for 2.5 years like so many people here. Seems to be the only drug that works in the various nervous systems during a flare. And like Rich im constantly doing research looking for these correlations that will lead to a final dx, and it
  2. Rich, you inspire us to all 1. be unendingly persistent in our research, diaries, etc 2. more of less become "our own doctors" in the sense that we are more likely to ultimately diagnose ourselves before they do since the battery of tests to determine an unending list of chronic illnesses is inumerable. Who knows who can be helped by something someone here posts? Ive been through rheumatology and been given the old "fibromyalgia" junk diagnosis that they give to so many people who DO NOT have that. My primary problems are breathing, heat, weakness. I dont have the traditional POTS. I ten
  3. Ok, so some of this stuff SOUNDS like a cheesy miracle cure for "chronic" illness. But I'm intrigued by the theories and in particular the holistic integrated approach of leaky gut syndrome. For one thing it addresses the hpa axis, and also the fact that these fungal bacteria or parasites can virtually take over parts of your circulation system. And we all know that much of our struggle comes from disregulation of our blood vessels etc. as well as blood pooling, etc. I want to try it because I believe that leaky gut is one of the most common, if not THE most common cause of chronic disease
  4. anyone know if licorice can cause a HOT feeling which doesnt show up in regular temperature checks
  5. Luckily i dont do syncope, pass out, but i come close. I dont use the inhalers, i pretty much have my own route, using 02 when needed and klonopin. I cant really imagine that passing out stuff---i hope you lay down before it comes on!
  6. It seems from reading hundreds of these threads that dyspnea (shortness of breath) in Dysautonomia is frequently the worst symptom if you suffer from it. And we all know that we each develop routines in dealing with sudden onset symptoms of any kind. I'll relate my own situation, please share yours in depth if you can. If theres one thing I've learned ----something you share can make a miraculous difference in another sufferer. EXPERIENCE It almost always happens suddenly. One second Im fine the next Im in serious air hunger. My first response is to hyperventilate but that only seems t
  7. At least we have dinet where there are people who can join minds and throw out ideas. I guess we've all figured out no one can really understand unless they've gone down the path.
  8. For sure we're different, we can be cold/heat sensitive or both. But Im wondering out loud, you feel good in the pool, but feel poor immediately after...... For one thing, usually an indoor pool is a hot area and highly humid. I get immediately out of there into the locker room for a cool shower or I'd be very weak quickly. Also, lactic acid may be building up in your muscles. ALSO, you might want to look into periodic paralysis with an endo. Its an emptying of all potassium into your bloodstream with exertion. I take potassium for this. I dont know much about vasodilation, but perhaps
  9. none of my business, but ive never heard of a POTS patient being helped by hot baths.
  10. NO. Swimming is miraculous for me. The anti gravity and cold/cool water is great. I highly suspect 89 is WAY WAY too high to cool your inner core. I think you may be overheating.----basically a heat illness with your internal organs making you sick. You might want to try a cold pool or lake and see if you notice an immediate difference.
  11. Dunno but it can make it unbearable. First time at Cleveland Clinic i caught a cold THREE times in a month. And I never catch colds, and i was using that hand stuff the whole time.
  12. would anyone add sudden onset of other chronic conditions such as food allergies, leaky gut, extreme reactions to excitotoxins such as msg, aspartame, etc.
  13. can you explain where you buy the cabbage, what kind, how you juice it, and whether you mix other things with it.
  14. Sounds good if it works for you. I have no idea how cops/firemen can stand the heat wearing all that stuff. As a guy, im probably too clumsy to deal with all that, although its probably easier to do than it looks.
  15. The damage to my various nervous systems was caused by low oximetry in sleep apnea. Now i cannot tolerate hardly any serious stress. When i have a flare my head feels like glass. Any sharp or rythmic noise and im in bed. And I have trouble working more than about 6 hours. Run down like the energizer bunny.
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