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RichGotsPots

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  • Birthday 03/31/1978

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  1. I have Hyper Pots (high standing NE), IST and what is called delayed Orthostatic Hypotension. So my TTT looks like this, Laying 102 heart rate, laying 118/78 blood pressure, Head up tilt after 2 minutes 150 heart rate, 155/110 blood pressure, Head up tilt after 10 minutes heart rate 162, 88/57 blood pressure. The rise in BP is because I have an immediate rise in Norepinephrine head up or standing, then eventually I guess the NE runs out and my veins start to dilate and my blood pressure crashes. It's like tug-o-war. When my laying heart is really high during a flare my laying blood pressure is usually high especially if I load up on salt. Which meds do you use. I really could not tolerate any
  2. I think you could do it laying down as well even if that is not typical
  3. It’s an interesting paper, thanks for posting it. If you look back on when I used to hypothesis about the causes of dysautonomia and POTS in 2012/2013 I basically brought all of these points separately. It’s as if I had some genius thoughts about it, it’s just that the autonomic nervous system does not just lay in the autonomic nerves and back then we had zero research into the brainstem, or spine. I don’t think we have come a long way in 8+ years since then , to be honest. More needs to be done to example these other parts of the nervous system more closely. And it is not at all going to come through random research like we have now, it will come if we as a community push for better technology. I used to contact MRI technology schools to try to reach someone that would take an interest. We have the technology but the software needs to be fine tunes to visualize the autonomic nervous system. It’s not a priority for them because they don’t realize how much need there is for it. We wouldn’t need a QSART or a skin biopsy anymore to visualize autonomic nerve damage in our sweat glands but rather radiologist could see all our autonomic nerve branches. Unfortunately I became too ill to pursue this myself. Hopefully some doctor or research will wake up and push for this technology.
  4. Yes via and upright SPECT scan but it’s not easy to find someone who will do it. I also believe Cleveland Clinic in Ohio used to have some perfusion testing, not sure if brain was included
  5. 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%.
  6. @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 years ago. With that said I also looked on Mayo and Mayo shows it slightly different than the picture you posted. This is how Mayo shows the levels. Notice that for Epi and Dopamine there is a < (less than symbol), but for NorEpi there is only a range. If you are saying that by that range his NE is supine is normal than his 1,200 standing and you 800 standing and mine would all be normal because they are under 1,700 for standing. That would be strange. On the reference that I saw below 200 for supine and below 600 for standing. Reference Values NOREPINEPHRINE Supine: 70-750 pg/mL Standing: 200-1,700 pg/mL EPINEPHRINE Supine: < or =111 pg/mL Standing: < or =141 pg/mL DOPAMINE <30 pg/mL (no postural change)
  7. 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..
  8. 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 might as well have that done and shipped together. It’s better if the doctor is supervising this instead of a local blood lab who may not be as careful..
  9. 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 inventing the surgery you need, you could contact Doug since he has been through it. He says he helps me like him and sounds like you need a very similar thing, a new surgery, not yet available to humans. Maybe he can help with his experience? Worth a shot..
  10. 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.
  11. 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.
  12. 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.
  13. 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 is trying to motivate people and again I’m fine with that. He didn’t just figure out he had Diabetes and start taking insulin and get better. Or try a traditional POTS meds like Midodrine, florinef and a beta blocker and was cured. It took him 7 more year to be cured after he knew what he had.
  14. 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.
  15. 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 NeuroEndo they think more out of the box then just a neuro or just and endo. i will have to look into Moxonidine, thanks. Not sure I understand the Carbidopa because that actually raises Dopamine it doesn’t lower it like you suggest. On my catecholamines Testing I had no Dopamine at all. Not sure if Dopamine competes with NE, if it does I guess it would lower NE but I would be careful of rebound side effect if you stop it..
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