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POTS with Mast Cell Activation

Discussion in 'Mast Cell Disorders/Mastocytosis' started by Marco, May 7, 2012.

  1. Marco

    Marco Old blackguard

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    Near Cognac, France
    I thought this might be of interest given the prevalence of POTS and recent discussions about systemic mastocytosis and histamine :

    Hyperadrenergic Postural Tachycardia Syndrome in Mast Cell Activation Disorders

    Abstract

    http://hyper.ahajournals.org/content/45/3/385.full
  2. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    POTS is so awful. I flush terribly. RED hot,even though we keep our home very cool for me. My doc and I decided to try Claritin and my hands felt awful. I had no idea that and other antihistamines have so many awful reactions. Many people do ok with H1 and H2 blockers. Not me of course... I am on Quercitin & Nettles now. HistaEze is another supplement that is good. POTS is a very hard thing to deal with. I am improving greatly, but still flush. I have not been consistant with the supplements for the flushing so I hope to get a lot of relief.

    I have been concentrating on the healing of my nerves since I have Autonomic Neuropathy, most POTS is because of that. That has been great, but nerves heal slowly.
  3. Ema

    Ema Senior Member

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    I wish that I understood how all this fits together because it surely must!

    I have very high whole blood histamine levels and OI that is pretty well controlled with Florinef, no flushing though. I investigated systemic mastocytosis through a tryptase test but it was not out of range or even particularly high. My doctor doesn't understand systemic mastocytosis at all though and ordered the test basically just as a courtesy to me.

    I also have EDS and I've seen a website that discusses this condition along with POTS and systemic mastocytosis. I thought it was interesting.

    The Driscoll Theory: The Role of External Communicating Hydrocephalus, Mast Cell Disease and CCSVI as the Cause of POTS (Postural Orthostatic Tachycardia Syndrome) in Ehlers-Danlos Syndrome

    http://prettyill.com/videos/watch/why_eds_pots_patients_are_so_ill_relief_the_driscoll_theory
  4. adreno

    adreno 3% neanderthal

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    Tundras of Europa
    Mastocytosis and MCAD are not the same. The former is increased number of mast cells, the latter is excessive mast cell degranulation.
  5. Ema

    Ema Senior Member

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    It sounds like they can occur together.
  6. nanonug

    nanonug Senior Member

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    Have you measured your plasma histamine levels?
  7. nanonug

    nanonug Senior Member

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    Whole blood histamine is not useful, because most histamine is "bound" in basophils, for example. You need to know plasma histamine levels.
  8. Ema

    Ema Senior Member

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    Hmmm. That's interesting. Everything I've read on high histamine levels on the Internet deals with whole blood histamine and not plasma levels.

    Can you point me to anything to read more about it?

    Thanks!
  9. nanonug

    nanonug Senior Member

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    Are you talking about things such as histadelia? Doing a search on Pubmed for the condition reveals: "Showing results for cittadelia. Your search for histadelia retrieved no results" In my opinion, histadelia is crapola!

    Here's a real scientific article about histamine: Histamine and Histamine Intolerance. Look at Table 1.
  10. Ocean

    Ocean Senior Member

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    Sally,

    Do you your doctors do long-distance consultations? It seems you get a lot of good care from them and I'm interested in someone who knows supplements, especially because I'm having so much trouble tolerating so many of them.
  11. Ema

    Ema Senior Member

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    I requested a plasma histamine test but I got another whole blood result! Grrr. The good news is that it has dropped under 100 ng/mL for the first time since I started measuring it a year or so ago. Still too high which indicates undermethylation but improving which is encouraging!

    So I will try again at my next blood draw in about a month...
  12. nanonug

    nanonug Senior Member

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    Ema, actually a plasma histamine test will probably not be very useful either. The reason (unless you have a really big screw up going one - might be worth to test it once, I guess) is that histamine is rapidly converted to N-methylhistamine. N-methylhistamine stays in the body for hours and is eventually excreted in urine. Urinary N-methylhistamine is therefore the "useful" test.
  13. Ema

    Ema Senior Member

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    Never underestimate the power of my body for a "really big screw up"! LOL.

    Thanks for the info...I'll look into that test as well.

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