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Everything posted by RichGotsPots

  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..
  16. 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 of Hyperadrenergic POTS from what I understand him saying. With Hyperadrenergic POTS you want to reduce NE with alpha blockers like Clonidine. Since his was Adrenaline he wanted to have the low NE spike so that that it would compete with the adrenaline and low it. But that was tricky and not as effective as removing his medulla completely.
  17. 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 response to treatments. There is a lot to be learned from their Mito dysautonomia infection observations. For example they notice that because of dysautonomia their baseline body temperature is usually lower and also harder to read than general population. They also see that they get a SIRS which is Systemic Inflammatory Response Syndrome that among other things affects heart rate and blood pressure. They also use IVIG in many immune deficiency Mito patients with dysautonomia and they note that they need special care during infusions and usually recommend subcutaneous instead of IV style IG. After nearly a decade since I have been diagnosed with many Dysautonomias it is frustrating to see the best research for dysautonomia is coming from a small rare disease community like Mito and it is anecdotal in most cases. I know that the reason is because we still have a tremendous lack of awareness in the medical community about dysautonomia, who think it is a rare illness and nothing serious. It is took difficult, I guess, for these large Autonomic labs to observe things like infections in dysautonomia because people are not local to the clinics so if they end up in the hospital it’s local and not getting reported or handled by the clinics. A lot of Mito patients will move close to the clinics so maybe that accounts for the better observations. It is still frustration nonetheless because many dysautonomia patients symptoms start out from infections so you think by now there would be more research into that..
  18. 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 discovered he had Dysautonomia. He then got tested properly by Dr. Coghlan. Also before being tested properly while at a hospital stay they mentioned his adrenal dysfunction but gave him mixed messages about that. But he kind of focused on that. After Dr. Copland gave him a proper tilt table test with Catecholamines he discovered his Adrenaline was too high and his Noredrenaline was too low. The talk kind of makes it seem like he figured this out but it was mainly do to Dr. Coghlan. Next Dr. Coghlan tested for an Adrenal tumor and that came back negative so they were stumped by he was making so much adrenaline. So then after about a year they found a test (i’m Guessing a PET scan) that could look deeper into the adrenals an they found he had a lump inside the medulla of the Adrenal gland which was extremely rare. Dr. Coghlan eventually narrowed the diagnosis down. The problem at that point was there was no cure or surgery. This is where Doug was really his own hero. He research to prove there was surgery to remove the medula safely without damaging the rest of the gland. Once he found Veterinary surgeries from decades ago and then convinced human surgeons to try it on him one at a time. He went from being bed bound to walking a mile after a few months but I think he was on a ton of medications too at the time. Then it took him awhile to do the 2nd gland and that recovery was worse, but eventually he could travel and walk and stand and got much better. I do not think he is 100% but way better. So it is accurate but does not give all all the details.
  19. 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.
  20. I will probably do a follow up to see if people know how many beats it increases theirs on average.
  21. Over the decade I have had Dysautonomias I have always had at least a 30 beats increase in my heart rate and I have never once seen a study about it. I have Sjogren’s Syndrome but it is believed I also have Mitochondrial Disease. Around 38% of Mito patients have an autoimmune disease so it is not that uncommon and over 60% have dysautonomia. If you look at MitoAction website they doctors talk how their Mito Patients react to infections and their dysautonomia symptoms. It is common for Mito Patients to have a Systematic Inflammatory Response to infections where their heart rate and blood pressure either increase or decrease. Also they talk about how dysautonomia impairs being able to get an accurate body temperature. I almost never have a high temperature even with my worst proven infections.
  22. I saw people talking about Dr. Triviano. Have you have any experience with him? I might give him a try. He is near Tampa I think.
  23. How did that Dr. Pandit go? I’m looking for a doctor in south Florida myself. Going through a major crisis with my heart rate and breathing problems
  24. Hiya Shane, any updateds on your condition? Also did they tell you any details about your syautonomia besides pots?
  25. It sounds like what you are describing is Gastroparesis. You need to see a Gastroparesis specialist and not just a regular GI. You could have an inert colon which could lead to a bowel onbstruction. That needs to be monitored very carefully and I suggest to get a smart motility pill to test your whole digestive tract and not just your stomach emptying. i won't advice you what can help because this is a delicate situation that needs careful monitoring
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