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Hyperadrenergic Postural Tachycardia Syndrome in Mast Cell Activation Disorders

Discussion in 'Mast Cell Disorders/Mastocytosis' started by Sherlock, Aug 20, 2012.

  1. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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

    It seems to me that it could be that many people with orthostatic conditions are misdiagnosed as having a neural origin. After all, what would make more sense than blood pooling in the legs being caused by excessive dilation?

    (Excess histamine being caused directly by a genetic defect in Mast Cells, or the MTHFR defect which causes excess histamine indirectly.)
    nanonug and camas like this.
  2. SOC

    SOC Moderator and Senior Member

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    Dang! Sounds like me. I think I've got hyperadrenergic POTS. I've been hypersensitive to vasodilators all my adult life, which would make sense if I've got a constantly circulating vasodilator, right?

    Don't have time to do more than skim the abstract this morning, but it sure looks like I should be looking into mast cell activation.

    If it's not one thing, it's another. Or, from a different POV, every little bit helps.
  3. xchocoholic

    xchocoholic Senior Member

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    I don't have flusing but I have other allergic reactions.

    Since I feel healthy after laying down for an hour I wonder if this applies to me. My oi starts
    when I'm upright and my hypoperfusion builds until I have to lay down.

    I'm going to try anti histamies tho, probably holistic first.

    Tc .. C
  4. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    Yes, if you know that you have a condition involving vasodilation, then it's prudent to first suspect that condition also causes any orthostatic effects - rather than assuming an unrelated neural cause for POTS.

    I think that the whole histamine approach is encouraging, because it means not being dragged inexorably down into some black hole mystery of CFS.
    ahimsa and SOC like this.
  5. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    I find that I have some allergic type effects and not others (which also means no hay fever), and that mix of symptoms also changes over time.

    One example: I took quercetin 500mg at 4am and at 8 am I didn't have the sore bottoms-of-feet that I'd have on the previous two mornings. The sore feet was such a puzzling symptom, until I made the connection that there are lots of mast cells (since hands and feet are more likely to get injured than other body parts.)

    What anti-histamines will you be trying? (And I hope you post back on how it worked for you :)
  6. SOC

    SOC Moderator and Senior Member

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    Agreed. But now I have a whole new area to research. :p
  7. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    I'm going to hit myself with most of the anti-histamine strategies I know of, in the coming days. That includes methionine, which supposedly helps with histamine breakdown. (I'd wondered why I had such a huge attraction to cheese since the spring, when my ferocious insomnia started. Cheese has methionine.)
  8. SOC

    SOC Moderator and Senior Member

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    Let me know how it goes. Maybe I'll follow in your footsteps. :)
  9. xchocoholic

    xchocoholic Senior Member

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    Hi,

    I've been taking 1/4 - 1/2 tsp of Target brand children's dye free benadryl at night for throat swelling
    and it's working so I may try taking it during the day. I've used this for about 5 years now as needed
    for severe allergic reactions. It's gf as far as I can tell. At least I don't react to it.

    I'm at a loss on which way to go with
    this so I'm going to have to research it. On the Dinet board, I see people using a wide variety of anti histimes.
    But the last time I tried allegra, claritin, etc they knocked me out. I didn't try the children's yet tho. I just saw
    that Allegra has a children's dye free.

    Fwiw, my strategy, per my doctor, has been to avoid allergens so I've modified my diet to the best of my abilities. I'm on the Wahls diet. I can't afford Alcat and I'm too tired to rotate foods or shop for healthier foods so now I'm looking for meds or supplements. I CAN'T eat certain foods (esp gluten, dairy, soy, coffee, chocolate, etc. ) but at least I have a good idea which ones those are now.

    Tc .. X
  10. SOC

    SOC Moderator and Senior Member

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    xchocoholic
    Have you tried Zyrtec? Daughter and I have taken it twice a day for years with no sedating effect. I also take Tylenol PM (has fast-acting Benadryl in it) at bedtime because it is sedating.
  11. xchocoholic

    xchocoholic Senior Member

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    Hi soc,

    Thanks. I "think" I did but I'm going to have to experiment with these again. It's been a few years ...

    I'll be looking at supplements too.

    Tc ... X
  12. taniaaust1

    taniaaust1 Senior Member

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    Interesting. Thanks. I have hyperadrenergic POTS (with also low blood volume POTS) and also have the MTHFR defect. So it was interesting me to find out these can be connected (I only got the POTS after Id had ME for a while).
  13. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    Orthostatic hypoT was my very 1st symptom (after the bad cold subsided). I was doing deadlifts with no problem. Then after the final rep, I let go of the bar, stood up and almost fell over. That repeated a few times afterwards. Also, once I ws standing still talking to someone and started getting nausea, as if from brain hypoxia. I said "I have to go" and as soon as I started walking I was okay. So apparently for me, the leg muscles activating keep the blood from pooling and my brain gets blood.
  14. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    And I've seen a youtube video of that very thing in a normal person - except he did fall, and hit his face on a nearby gym machine.
  15. Vincent

    Vincent Senior Member

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    I haven't read that article but I will at some point but when you mentioned feet. When my orthostatic issues are going I tend to get this weird feeling in my feet, it's like a buzzing; I also become very tired when I stand up. Now 15 years ago I would pass out but I don't anymore. When I lay down I 'wake up' and can think and function, my feet also then feel normal.
  16. Shell

    Shell Senior Member

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    I get the flushing. Hate it! It's so embarrassing.
    Buzzing achy feet and heavy achy calfs when I stand for any length of time. Then horrible cramps at times once I've sat down.
    I've wondered about taking antihists to see what would happen.
    I am awaiting a PoTS Cardio appt. I wonder what he'll come up with.
  17. taniaaust1

    taniaaust1 Senior Member

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    best luck with the POTS cardio appointment.
  18. xks201

    xks201 Senior Member

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    O ok so lets all take h1 or h2 receptor antagonists like the article says or a central central sympatholytic and get better.

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