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RichGotsPots

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Everything posted by RichGotsPots

  1. RichGotsPots
    how bad is your SOB? Did you get an Echo of the lung?
  2. RichGotsPots
    I found a new trick to show the kids. I stood on my scale a few time in the last few days and noticed it ticks with my pulse Anyone else try that lol
  3. RichGotsPots
    Right, all meds affect our whole system, but some are more selective then others is my point. The blood/brain barrier is an indicator of how non-selective a med is. The "non-selective beta blockers" are still still not safe for asthma people, but they have slightly less constriction on the lungs. Slightly less not really what I call selective to the heart.For example Invibradine affects the heart and has no noticeable constriction to the lungs. That's selective and we need more meds like that. People who have regular hypo-tension or regular hypertension as measured by the arm and who have no other issues would seem to need a medicine that handles they're whole body issue which you describe. But my theory is that, while some people have that, they may also have isolated hypo/hyper issues to local organs or areas of their body. Once you dive into the research you see that this diagnosis is becoming more prevalent in many regions of the body, Kidney's, Prostate, Brain, Lungs, Legs where the patient has perfectly regular BP systemically.
  4. RichGotsPots
    Can you please one beta blocker that is selective?
  5. RichGotsPots
    Great stuff Flop and everyone else. For anyone else adding, if your Diagnosis isn't stated on your profile can you add it? And try to add posts just like Flop, that's perfect!
  6. RichGotsPots
    I think it takes awhile to be weaned off, don't worry we are all praying for speed recovery, she is a fighter! May God rush her to a speed recovery!
  7. RichGotsPots
    I know you have said it and you said there is "probably about half a million published research studies on the endothelium and nitric oxide activity," but can you post a study that backs up what you are saying? My post has stated it from a source, if you disagree perhaps if you posted a study that contradicted my post that would be good support.. And again my question was how many of use have gotten their Endothellium and Vascular resistance tested?
  8. RichGotsPots
    Rama, do you have any type of list of other meds that reduce hypovolumia, that wouldnt be a bad list for all of us to have..
  9. RichGotsPots
    Mack's Mom, Good info
  10. RichGotsPots
    Thank you for trying to be open minded! Have you google the link btwn autoimmunity and mitochondrial dysfunction, see how much research comes up. Those both are what I think of as the middle causes. !st something triggers the cascade then a whole bunch of middle causes affect the end the symptoms. It's and avalanche and now we are stuck digging ourselves out of the snow..
  11. RichGotsPots
    Thanks everyone and Issie! I just want to point out while I am calling this a theory, it's not out of left field. If you go to the list of mechanisms http://dinet.org/what_are_the_mechanisms_of_POTS.htm you will see that almost every mechanism list related to Vascular issues and I'm merely pointing that vascular issues can and often do have an effect on BP. I'm not going through each mechanism one by one but this chaotic vaso regulation is being pointed to as the problem there. So just suggesting that if they are pointing to mechanisms of vascular issues in all different areas of the body, the legs, the brain, the stomach and not just systemically then I think it points to my theory... Since i can't and won't recommend any meds because I'm not a Dr I am just making sure when I ask my dr, how certain meds act on vaso regulation in different parts of the body. Again my example is BetaBlockers. They have a constricting affect in the lungs and a dilating affect in other areas. So I'm just knowing my trouble area and trying not disturb them..
  12. RichGotsPots
    Here is the best information I could find on the web about PH, they are considered the best authority by the American Lung Association http://www.phassocia...ge.aspx?pid=974. They also have the best Dr. list I could find.. Also the studied that Dr Stewart conducted very few patients, I believe less than 30. I can ask him he would agree further studying would need to be done to call that evidence conclusive... Just because no studies have been done, doesn't mean as patients we shouldn't leave any stone unturned. Should they not have checked for because there is no study showing the connection btwn lung disease and Dysautonomia. Personally I want to rule everything out with top specialists and don't see the harm in it.. SYMPTOMS The symptoms for all types of pulmonary hypertension may be similar, but the severity of the symptoms usually correlates with the progression of the disease. Breathlessness on exertion Chest pain (also called angina pectoris) Dizziness upon standing, climbing stairs, straightening up from a bent position, or even while just sitting Fainting (also called syncope) Loss of energy Swollen ankles and legs (also called edema) Depression Dry cough Raynaud’s Phenomenon (chalky white and/or dusky blue fingers that may be painful and can sometimes be provoked by the cold) In advanced stages of pulmonary hypertension, minimal activity may produce some or all of these symptoms. Patients in advanced stages may experience irregular heartbeat, a racing pulse, passing out, and difficulty breathing at rest. If a doctor can see no other obvious cause for these symptoms, pulmonary hypertension should be considered and diagnostic tests should be performed.
  13. RichGotsPots
    Issie, My oxygen levels are very normal and high. I tried hyperventilating for 2 minutes and feel lightheaded but my shortness of breathe is not affected at all. Anyone who hyperventilates should feel lightheaded. This might be a cause for a very small amount of SOB but definitely not mine. One the one hand they are dead on about NO levels. But No levels dictate BP. They are missing the the boat by starring at the anchor
  14. RichGotsPots
    I'm working on my own symptoms start googling, begin with this article http://www.nature.com/hr/journal/v33/n12/full/hr2010208a.html. No affects BP and yes on the local level not just systemically.. Baroreflex sensitivity is disturbed in many people with cardiovascular diseases such as hypertension. Brain deficiency of nitric oxide (NO), which is synthesized by NO synthase (NOS) in the citrulline–NO cycle (with argininosuccinate synthase (***) activity being the rate-limiting step), contributes to impaired baroreflex. We recently showed that a decapeptide isolated from Bothrops jararaca snake venom, denoted Bj-PRO-10c, exerts powerful and sustained antihypertensive activity. Bj-PRO-10c promoted vasodilatation dependent on the positive modulation of *** activity and NO production in the endothelium, and also acted on the central nervous system, inducing the release of GABA and glutamate, two important neurotransmitters in the regulation of autonomic systems. We evaluated baroreflex function using the regression line obtained by the best-fit points of measured heart rate (HR) and mean arterial pressure (MAP) data from spontaneously hypertensive rats (SHRs) treated with Bj-PRO-10c. We also investigated molecular mechanisms involved in this effect, both in vitro and in vivo. Bj-PRO-10c mediated an increase in baroreflex sensitivity and a decrease in MAP and HR. The effects exerted by the peptide include an increase in the gene expression of endothelial NOS and ***. Bj-PRO-10c-induced NO production depended on intracellular calcium fluxes and the activation..........
  15. RichGotsPots
    Trust me I've googled it to death, it all correlates. BP issues are the long tail end. All other things that have been mentioned, Mast Cell, NO levels, Endothelium, Mito, EDS, Immuno def, and many more.. are all the middle of the tail issues affecting BP locally. The stub of the tail/ the causes are multiple as well because they all activate the middle tail issues. Those stubs are Lyme, viruses, chemical, trauma and many many more. Great to know the stub, but most likely it's long gone and it's already activated the middle tail problems. The middle tail problems might still be creating choas and more damage so def good to find those and treat those issues at the very least to stop further damage. But the long tail is the damage already done and the issues it's causing. When someone gets a heart attack, it could be for 20 different reasons, but the the most effective thing is to check the blood. Check it for clots, check it for cholesterol and make sure that is good and maintain a health blood pressure. For right now I'm personally checking out all of my pressure issues, but unfortunately checking involves tilting because posture has a different affect on us than general populations...
  16. RichGotsPots
    Awesome Ruby, this is exactly what i was looking for! I hope we get more people to post like you!
  17. RichGotsPots
    Rama, if you list tests please list what doctors would one ask for to run such a test
  18. RichGotsPots
    I actually had a Lyme Tick bite with a huge bull's eye on my leg about 1 year (I need to check) before POTS. I went to an infectious specialist and he tested and my Lyme didnt show up in the blood. He gave me strong antibiotics for 6-8 weeks and that was it. I didnt have any symptoms. But then about 1 month before POTS I had food poisoning from chicken soup (ER visit) and a stomach virus back to back, lost a lot of weight. Then painted my basement with toxic chemical paint. Then POTS kicked in 2 weeks after painting........ The lack of immunity might open a door for damage, but one the damage is done I think you have to treat the damage and if possible prevent more damage..
  19. RichGotsPots
    Did one Dr do all those tests or was it at a POTS center like Mayo/Vandy?etc..
  20. RichGotsPots
    Katybug, What Docs did the autoimmune tests and the sweat test?
  21. RichGotsPots
    julieph85, Was the CT angio of the brain? For the psychologist- who wouldn't be anxious over having POTS but on the plus side some anxiety meds help autonomic regulation.. Stree is def. a trigger... It might be helpful to see a Pulmonary Hypertension Dr and a Pulmonologist who will get you a High resolution CT scan.
  22. RichGotsPots
    Ruby can you list all the doctors that tested for each? Thanks
  23. RichGotsPots
    Did you ever check out your max HR. Google HR max calculator, Mine is 187, so 200+ sounds scary... Fast HR just seems to be a single, fatigues and weakens like we ran a marathon
  24. RichGotsPots
    can you send me some, I'm just starting to dive deeper into circulatory research?
  25. RichGotsPots
    Rama, it all works together. Mitochonria is an energy source but not the light bulb. Unfortunately you can't get light with you're using to low of a wattage or whatever So I'm sure it's not the only factor just pointing out the linkage..
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