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Newly Described Peptide Implicated In Pots - Discussion


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http://content.onlin...ticleID=1217866

Following on from Firewatchers earlier post. This novel vasoactive peptide has been found by the chinese team to be increased in some POTS patients. Perhaps paradoxically they believe its a marker that indicates benefit from midodrine.

here is a detailed discussion of this finding in an American Cardiology journal.

The peptide vasodilates via nitric oxide, promotes volume status reduction through increased extraction of salt via kidneys and also promotes leakage from capillories into the surrounding extravascular tissue.

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Hmmm, interesting ideas. Have to say though, midodrine was the WORST thing I've tried. Anything that does very much vasoconstriction is not the way for me to go. It spoke about vasodilation and edema. On one of the other forums I'm on we have been taking about edema. One lady is a nurse and has MCAS really bad. She stated that MCAS causes a release of histamines and the histamines contribute to the leaking out of the fluid in the veins. I guess the histamines can also cause organ swelling and create all sorts of problems. There are also other things released in regard to mast cell degranulation that can also cause these issues -heperan which becomes bradykin. She said that T-cells also activate mast cell degranulation. Lucotrines cause leaking over a longer period. Platlet A - activating factor encourages leaking out of the blood vessel. Progastroglins dilate the blood vessel. She said you can lose 2/5 of your total blood volume before you notice swelling. (Want to give her the credit for these observations - her name is Jose.) She is also diabetic and says that this has something to do with fluid loss. She says she takes antihistamines and drinks a lot of fluids and can usually pull herself back to better. She said normally the HPA axis would do the adjustment and make the corrections but because of the high histamines it doesn't work properly and she dehydrates very quickly - and has edema on top of it because of the other responses and fluid leaking out of the veins.(I wish I could put the conversation on here, but it is a private group that you have to join.) This was all new to me, I hadn't heard this before. Makes you wonder if mast cell degranulation has more to do with POTS than we realize.

Issie

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I know this article says that in thinking about using midodrine, it works best for those that have pooling vs. hyperPOTS. Well, what if you seem to have both??? I have hyperPOTS, but I definitely pool, as noted during my TTT and my hands swell so much when upright that I now have all these wrinkles on the base of my fingers(where they meet the hand). When I'm not swelling, the creases are so noticeable.

My endo had tested my vasoactive intestinal peptide last year, and it was almost double the upper limit. They checked my pancreas and didn't feel it was from there(usually a tumor, but usually really high in those cases).

Anyone with hyperPOTS try midodrine and find it "calmed" the hyperPOTS so that it didn't happen anymore? I would love to prevent the pooling, too.

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Sue, would have to say it was one of the worst things I've ever tried. It will definitely up your bp. If you have low bp and need to vasoconstrict - then it might be the way to go. But, not thinking us hypers with high bp's - not so good med. for us. I found that Butcher's Broom worked very similiar to midodrine - it also vasoconstricts. I had the same type of reaction with it ----but, it took longer for me to notice those particular side effects. Midodrine affected me emotionally too and I couldn't stop crying with it. It made me super sensitive to everything.

Issie

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Thanks, Issie. Ugh, I wouldn't want to start uncontrollable crying! There's something "wrong" with me already, but in a GOOD way, in that I am too upbeat if that makes any sense. It's like I have too much serotonin or dopamine or whatever is the "feel good" hormone. Even though I have these awful circumstances of staying home all the time, alone alot, etc., I am the most upbeat person I know. And, that's not normal. But, I'll take it over the alternative. Anyway, I think it is a clue to what is wrong with me, just I can't figure it out.

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Thanks, Issie. Ugh, I wouldn't want to start uncontrollable crying! There's something "wrong" with me already, but in a GOOD way, in that I am too upbeat if that makes any sense. It's like I have too much serotonin or dopamine or whatever is the "feel good" hormone. Even though I have these awful circumstances of staying home all the time, alone alot, etc., I am the most upbeat person I know. And, that's not normal. But, I'll take it over the alternative. Anyway, I think it is a clue to what is wrong with me, just I can't figure it out.

Which one is the "upbeat hormone"? I need more of that one!

Edited to add what I meant to post! :unsure: I hadn't taken any medicine this AM and took my HR. It was 110 resting for some crazy reason. I took only 2.5 mg of Midodrine and now my HR is 81 and my BP is 114/84..

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