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RichGotsPots

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  1. Imaging findings of pelvic venous insufficiency in patients with postural orthostatic tachycardia syndrome “Conclusions Significant LCIV compression was noted in a majority of female POTS patients, suggesting that incidence of iliac venous obstruction may be higher than the general population. Patients with POTS and symptoms of PVI may benefit from assessment for venous outflow obstruction.” https://journals.sagepub.com/doi/abs/10.1177/0268355520947610
  2. Hey everyone, So it has been officially over 10 years since I have been diagnosed with Dysautonomia and I wanted to update this decade old theory somewhat. In the last 2 yearsI have become increasingly aware and have been researching vascular compression syndromes. And wouldn’t you know it, many people with these compressions have dysautonomia. A survey of MALS patients in a large MALS Fb group showed over 50% had some form of dysautonomia. Now back in 2011 I never heard of vascular compressions and when I heard of things like MALS, maybe around 2015, I read it caused a lot of pain so I brushed it off. Well come to find out not everyone with compressions has pain. What some compression experts theorize is that the compressed artery or vein eventually leads to inflammation and and that affects the surrounding nerves eventually and leads to a cascade of other symptoms like MCAS and even mental health issues. About 33% of MALS patient reports MCAS and mental health issues that range from ADHD to Bipolar to depression and more.. So in 2022 I can say my theory has updated since I learned that vascular compressions can be causing these localized blood pressure changes. Just to list some of those compression syndrome: May Thurners, Nutcracker Syndrome, MALS, SMAS, Pelvic Congestion Syndrome, Thoracic Outlet Syndrome, Carotid Artery Compression, and many more. Basically everywhere there is an artery there can be a compressions and this can severely limit blood flow to the heart, lungs or brain. Lastly there is a Pulmonary Vascular Group at Harvard that ran a study of Chronic Fatigue Syndrome and POTS patients using an Invasive Cardio Pulmonary Exercise Test where they run catheters into the neck artery and up the groin while patient bike. They take blood gas and measure other things. And from that study they have found what they term Pre-Load Failure, where blood is not returning to the heart properly. They have theories why that is but they believe it is causing POTS. And I believe compressions are the cause for Pre-Load Failure…
  3. 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
  4. I think you could do it laying down as well even if that is not typical
  5. 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.
  6. 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
  7. 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%.
  8. @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)
  9. 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..
  10. 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..
  11. 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..
  12. 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.
  13. 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.
  14. 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.
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