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About RichGotsPots

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  • Birthday 03/31/1978

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  1. Not a lot of people realize that about 99% of out digestive tract has a 2nd autonomic nervous system completely separate from the rest of the body. So someone can have Gastroparesis or intestinal motility problems without having any other form of Dysautonomia. If you join the some groups on Facebook for it you see it is actually pretty common. For POTS I believe about 25% have different levels of gastroparesis (Too slow stomach motility) And about 15% have dumping syndrome (which is too fast motility). So that’s about 40% but not 100%.
  2. @Pistol a few things here are misleading. Before I get into that first there has been a huge disagreement in the Autonomic medical community for the limits of diagnosing Hyperadrenergic POTS. It was originally 600 and over time it has crept higher and higher. But those higher than 600 levels are not accepted by everyone. As for the misleading part, I originally found a few other reference levels from other labs that were much lower. So I was basing my comments on that. I believe Mayo is one of the highest levels needed for a Hyperadrenergic POTS diagnosis from when I last was looking many ye
  3. I agree plus Vanderbilt is a 10 top hospital in America. They not only have top Autonomic specialists and lab all their other specialists are top notch. Try to see a bunch from Endo, to Rheumatologist to infectious disease. As many as you can..
  4. Sounds like you need to make calls and find a doctor who can do an accurate postural Catecholamines testing. It does not need to be done during a ttt you can do it in anyone’s office during a poor-man ttt. Just lay quiet for 10 minutes have blood drawn, then stand up slowly and stand for 15 minutes and have it drawn again. The key is for the drawn blood to be immediately put into a cooler after both draws and kept in a cooler and shipped to Mayo lab in a cool. And you should also have a separate vial to a G-Achr antibody because that also needs to be put in a cooler and sent in a cooler so mig
  5. Unfortunately and pet peeve of mine, are these “principles” taken as matter-of-facts in Dysautonomia without any studies to prove them. Just tilt your bed upright, I mean come on, I don’t know anyone who that ever helped and if it did then we do not know if it is placebo of it did anything to Renin Aldosterone ratios, as far as I am aware. And what % of Dysautonomias people have have abnormal levels. Mine have always been normal over the years. If normal we do not know if it is at all advisable to do that. But still like gospel that is repeated to ever patient. Smh As far as inve
  6. EMG is not for Dysautonomia but at least it rules out some neuromuscular things. I’ve had about 5 or 6. The comparable test in Dysautonomia is QSART but I prefer the the Sweat Gland Nerve Fiber Density Skin biopsy. Vanderbilt is definitely a good place to get proper testing.
  7. I still don’t understand why you think he didn’t invent the surgery? Just because you don’t believe him? Do you believe he had the surgery? Do you believe he has Bilateral Adrenal Medullary Hyperplasia? There are articles about his story that go back to 2010 where he is still homebound and he is trying to convince surgeons to do a surgery for it.
  8. But he did invent the surgery lol you think he didn’t? That part is not exaggerated. Can you show where they were doing it before him? I know what he has and that caused his dysautonomia. So yes he needed that surgery that he invented he did not just navigate through the system it’s a lot more than that.
  9. He should reword the part about inventing a category but he is telling it from his point of view at the time he gave the presentation in front of the Autonomic science community. At that time he did not know better. He knows now. But maybe he lest it in for some hyperbole. I think it’s fine. The part about him inventing the surgery is kind of true and amazing. I doubt you know someone who knew they needed a surgery that did not exist for humans and they figured out how to get one in America no less. I do see what you are saying because it comes off a little like bragging but I just think he i
  10. I was just reading about it. Looks interesting. Have you been tested for Hypovolemia? And are you sure you do not also have a delayed Orthostatic Hypotension? “In addition, moxonidine may also promote sodium excretion” this would be bad with Hyperadrenergic POTS with hypovolemia.
  11. A few things. Since your supine NE levels are so high that is not just Hyperadrenergic POTS. Hyperadrenergic POTS is only when upright levels are high. I have mild Hyperadrenergic POTS with 720 upright. That could point to a problem with your adrenals. Also NE is NorAdrenlaine not Adrenaline even though they are very similar they compete with each other to it is rare for both to be high at the same time. Do you know your Epi levels supine and upright? NE is what is causing your surges and at 400 laying it is not surprising that position doesn’t matter. If I were you I would see a
  12. The test for Hyperadrenergic POTS is not to scan your adrenals. You need to have your blood drawn during a tilt table test before and after upright for over 10 minutes. And that blood needs to be kept in a cooler and shipped that way to a lab like Mayo. Hyper pots is higher than normal Norepinephrine when upright. Nothing to do with adrenaline. Norepinephrine (NE) is Noradrenaline, a similar but different neurotransmitter. Doug had lower NE and higher Epinephrine, that is what what he had was very very extremely rare. That is why he treated it with low doses of NE via IV. He had the opposite
  13. I think that the Mitochondrial medical community is way ahead of the general Dysautonomia community in Dysautonomia research. Dysautonomia plays a major role in Mitochondrial Disease. It affect as much as 50% of patients even though there are over a hundred types of Mitochondrial disease. So they see a lot of patients with dysautonomia symptoms. Mito people also have a lot of immune problems both autoimmune and immune deficiency. The later causes them to get infections. So Mito doctors see their dysautonomia Mito Patients get infections and they see their responses to it. They also see their r
  14. In the articles about him and the Ted Talk he does not give the whole story, probably for saving time but if you search for him Youtube and google you can find out more details. I will try my best to fill in some blanks. For 4 years doctors did not diagnose him with dysautonomia and he had no computer only old medical textbooks from before he dropped out of a biology university program. He had one on Endocrinology and he read about the Autonomic nervous system and put it together himself that he had it. In the talk if kind of makes it sound like he discovered a new illness but in fact he just
  15. Another thing that is not talked about as much as it should be is baseline temperature readings in various dysautonomias especially with autonomic neuropathy. I believe many of us have lower baseline temperatures and we do not present with high fevers when we should and infection diagnosis is being delayed. At least that happens with me and I have seen it discussed in other illnesses where they have dysautonomia.
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