julieph85 Posted February 8, 2012 Report Share Posted February 8, 2012 something else to think about. There is a group of us that present as hyper pots (increased bp upon standing) but have normal standing norepinephrine levels (i'm included in this group). So why do we look hyper pots but aren't by definition? Dr. G and I talked about it being hyper sensitivity to catecholamines upon standing, not increased catecholamines upon standing. Ang II is one of the hormones that regulates sensitivity to catecholamines. This also explains the dirunal pattern of POTS for me and some others. If my ang ii is causing me to be hypersensitive, I would mostly look this way in the morning because there is paraympathetic withdrawal till the evening. Your plasma curcuilating catecholamines are much higher in the morning, immeadiately upon waking, when stading, after eating carbohydrates (this is a big one for me), during movement, during the pressor response, when exposed to heat, and of coarse, during exercise. What i'm saying is that the group like myself, does not have abnormally high catecholamines during that time, instead we are HYPER sensitivie to normal amounts of catecholamines. The reason- increased ANG II. Million dollar question- why do I have increased ang II? Severe deconditioning? My pots started after 14 weeks of laying flat for 24 hours a day. Also, i feel great when I drink alcohol. I feel horrible as soon as I stop and for days afterwards- severe tachycardia, extreme thirst, high BP. Well guess what, ANG II dramatically increases after consuming alcohol. If i'm already high, i'm making it even higher after drinking and making myself even more sensitive to catecholamines. Quote Link to comment Share on other sites More sharing options...
issie Posted February 8, 2012 Report Share Posted February 8, 2012 Alchol also raises dopamine levels - maybe, your dopamine levels are low. It could be that when you raise the dopamine even if your raising the angiotension the benefits far out weigh the negatives. Quote Link to comment Share on other sites More sharing options...
jangle Posted February 8, 2012 Author Report Share Posted February 8, 2012 Julie I absolutely love you! That study explains the anomaly that was confusing me so much with POTS. Why would saline work but not drinking + salt intake?At this point we have a working model. Now we need to figure out how to treat it.And that goes back to what caused the high angiotensin ii like you mentioned. Could it be a compensatory mechanism to low aldosterone, is it an autoimmune attack to ACE2 enzymes, is it a genetic deficiency, is it a receptor abnormality?Any other theories as to what can cause high angiotensin ii in us?For me I think it was a genetic deficiency of ACE2 enzymes, because I distinctively remember having symptoms (though much milder) since I was a child. It could be that any of these causes can eventually lead to POTS in patients and that might explain the heterogeneity of presentations. However, the specific cause is most definitely going to have a dramatic impact on the type of treatment to lower angiotensin ii.For instance, one wouldn't want to give spironolactone to someone whose high angiotensin ii is caused by low aldosterone, that would be very dangerous and make it much worse. Quote Link to comment Share on other sites More sharing options...
roxie Posted February 8, 2012 Report Share Posted February 8, 2012 Goodness, it's to be you all cant be in NY with Dr Stewart working on this! Quote Link to comment Share on other sites More sharing options...
julieph85 Posted February 8, 2012 Report Share Posted February 8, 2012 Thanks! in my case I'm assuming it is related to deconditioning of my heart and my autoimmune disorders so I'm treating it with exercise, vitamin D, and immunosuppressant drug (plaquenil). I really think there is something to the vitamin D as a helper because I swear I feel the best when I've been tanning and you make thousands of IU's of vitamin d from just one hour of sun exposure Quote Link to comment Share on other sites More sharing options...
jangle Posted February 8, 2012 Author Report Share Posted February 8, 2012 I would give my entire net worth up to this point to just be able to spend a week with the POTS researchers and present all the research we've accumulated and ideas for treating angiotensin ii.If we can work together we can find a cure for POTS. Quote Link to comment Share on other sites More sharing options...
roxie Posted February 8, 2012 Report Share Posted February 8, 2012 You're in your early 20's right Jangle? When I went to see him he said he takes research patients till 28-29 Quote Link to comment Share on other sites More sharing options...
jangle Posted February 8, 2012 Author Report Share Posted February 8, 2012 Ya, but the thing is, is that it probably takes a few months to see him and he's over 1,500 miles away from where I live and I think I would have to get a specific referral to him and he's not currently doing any research studies on angiotensin ii. (At least not that I know of) Quote Link to comment Share on other sites More sharing options...
roxie Posted February 8, 2012 Report Share Posted February 8, 2012 Yes, all of the above is true. I'm not sure about his studies. But I know a 1500 mile trip isn't very fun. I did that last fall Quote Link to comment Share on other sites More sharing options...
issie Posted February 8, 2012 Report Share Posted February 8, 2012 Ya, but the thing is, is that it probably takes a few months to see him and he's over 1,500 miles away from where I live and I think I would have to get a specific referral to him and he's not currently doing any research studies on angiotensin ii. (At least not that I know of)Hey, as articulate as you are and in the age range that he accepts --you might could do allot of people a whole lot of good if you could go. You could advocate for all of us. Don't think defeat - until there is defeat.Issie Quote Link to comment Share on other sites More sharing options...
roxie Posted February 8, 2012 Report Share Posted February 8, 2012 Maybe he'd be willing to talk on the phone or skype?In that, he'd try to recruit you.When I saw him I thought he was easy to talk to, he likes to quote movies & crack jokes. Quote Link to comment Share on other sites More sharing options...
jangle Posted February 8, 2012 Author Report Share Posted February 8, 2012 Ya, but the thing is, is that it probably takes a few months to see him and he's over 1,500 miles away from where I live and I think I would have to get a specific referral to him and he's not currently doing any research studies on angiotensin ii. (At least not that I know of)Hey, as articulate as you are and in the age range that he accepts --you might could do allot of people a whole lot of good if you could go. You could advocate for all of us. Don't think defeat - until there is defeat.IssieOh no Issie, I'm not thinking defeat. I do have a referral to Dr. Levine, who also is very intelligent. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 8, 2012 Report Share Posted February 8, 2012 JS is a funny guy. I am for one glad that we have him on the case as he thinks outside the box. I would go and see him no matter what it took if I was in his age range. Dr levine will get you exercising. Quote Link to comment Share on other sites More sharing options...
roxie Posted February 9, 2012 Report Share Posted February 9, 2012 Some say Dr Levine has terrible bedside manner, though very intelligent. Just so you know. Quote Link to comment Share on other sites More sharing options...
issie Posted February 9, 2012 Report Share Posted February 9, 2012 Me too Jangle - I'd go see him if I were half my age. LOL I'd find a way.Issie Quote Link to comment Share on other sites More sharing options...
julieph85 Posted February 9, 2012 Report Share Posted February 9, 2012 I'll go! How do you contact him ? Quote Link to comment Share on other sites More sharing options...
janiedelite Posted February 9, 2012 Report Share Posted February 9, 2012 http://www.nymc.edu/fhp/centers/syncope/J_Stewart.htm Quote Link to comment Share on other sites More sharing options...
julieph85 Posted February 9, 2012 Report Share Posted February 9, 2012 Thank you thankful I've placed a call into his office. Quote Link to comment Share on other sites More sharing options...
issie Posted February 9, 2012 Report Share Posted February 9, 2012 Julie,If you do see him, put in a word for us 50 somethings that want to see him too. I wish he'd take the older ones - it would maybe help in long term assesment of POTS that has continued from childhood into adult life. (Sign me up.)Issie Quote Link to comment Share on other sites More sharing options...
julieph85 Posted February 9, 2012 Report Share Posted February 9, 2012 I absolutely will Issie! Quote Link to comment Share on other sites More sharing options...
julieph85 Posted February 9, 2012 Report Share Posted February 9, 2012 Jangle I was interested in this because of the estrogen part but read the entire discussion as it relates to NOShttp://www.sinoas.co...DF/2003/23%20(1)/Estrogen%20Reduces%20Angiotensin%20IIInduced%20Nitric%20Oxide%20Synthase%20and%20NAD(P)H%20Oxida.pdfP.S. - you can't just click on the link. You have to enter the whole shebang into your search bar Quote Link to comment Share on other sites More sharing options...
julieph85 Posted February 9, 2012 Report Share Posted February 9, 2012 Actually, it's not working. Google angiotensin and estrogen and you will see it as an option Quote Link to comment Share on other sites More sharing options...
Lenna Posted February 9, 2012 Report Share Posted February 9, 2012 I BEGGED Dr. Stewart to see my son. He said that he will only see patients that live within 2 hrs of his clinic. We live 3 hours and 8 minutes away, according to google maps. He said that's too far, unless Dan wanted to be part of one of his clinical studies. I asked him to just see Dan once, as a consult. The answer was no. I asked him to just have a phone conversation with me. NO. To be fair, he did respond very succinctly to an email. Personally, I think he was open to seeing Danny for a consult until he found out who Dan's Boston doctor is. Then he shut us down. Quote Link to comment Share on other sites More sharing options...
issie Posted February 9, 2012 Report Share Posted February 9, 2012 Lenna,So sorry. Would you son be up to being in one of the studies? Issie Quote Link to comment Share on other sites More sharing options...
issie Posted February 9, 2012 Report Share Posted February 9, 2012 Julie,That's so interesting that estrogen replacement ups Angiotension II levels. It also down regulates renin and aldoesterone. For some of us that have had hysterectomies due to endometrosis (which they think is caused by too much estrogen) - it makes you wonder. Replacement wasn't advised in one of the studies to post menapausal women because of possible high blood pressures and heart complications. They were talking about Estrodiol or the E2 type estrogen - which is the most potent of all the three that we produce. I was told to not use hormones - at all because of problems with my liver and they thought that it was connected to hormones. So, I opted for just using estriol - which is the mildest form and only use it a couple times a week externally. It is also supposed to prevent breast cancer.This could apply to guys too because men also produce estrogen. It'd be interesting to know if there is an imbalance in men's hormone levels. We get estrogens daily in the foods and plastics. The worst kinds of estrogens and hard to eliminate from our bodies. Thanks for the reference. I didn't find the chinese study that you listed - but, the ones I read were quite informative.IssieIt makes you wonder what the relationship is with POTS - most say that their cycles make their POTS so much worse. Quote Link to comment Share on other sites More sharing options...
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