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Allergy / Mast cell treatments

Discussion in 'Mast Cell Disorders/Mastocytosis' started by xchocoholic, Aug 25, 2012.

  1. xchocoholic

    xchocoholic Senior Member

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    Thanks for the warning. I'll keep some Wal-zyr in me and just skip my morning dose and see how I feel.

    I had to salt load the other day to help my oi too. My hypoperfusion was bad and my fingers
    were all wrinkled. So I still need salt. I only take 3 mg daily tho. More and I feel pickled.

    Nac helps me temporarily too if I don't take it everyday. I'll look at dmsa thanks.

    Maybe these meds are improving my body's ability to sleep too so I need less help sleeping. I'm not
    sure how long these are suppose to stay in our bodies but I was knocked out for 3 days after taking 1 25 mg
    Vistaril.

    I'm waking up feeling mostly awake after reducing my sleep supplements and meds in the last couple of weeks.
    I was waking up in a daze that lasted for a few hours.
    The feeling does't last tho so I'm not sure if it's sleep supps or meds coming back on me or wal-zyr.

    Fwiw, I slowly completely tapered
    off 100 mg Theanine. I'm down from 100 mg of 5 HTP to 50. Melatonin is down to < 2.5 but I'm breaking a 5mg
    so I can't tell the dose. And I'm taking up to .125 mg of Klonopin as needed for jerking.

    Thanks again. It's great having other pwcs doing this.

    Hi dainty,

    Thanks for your info too. I'm glad you found something that's working. I have a freind on glutenfreeandbeyond
    who did that in conjunction with a gfcf diet for her dystonia. She said it helped but gluten caused her dystonia

    It may not be the same but I saw a chiro who was trained in
    several modalities for years and it never made a difference for me. However, giving up my food intolerances
    eliminated my ataxia, etc. I'm just overly sensitive to so many things that avoidance isn't enough.

    Tc .. X
  2. Adster

    Adster Senior Member

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    I think that after a period on the Zyrtec, and now stopping it, I feel worse than I did before starting it, as though there is some kind of rebound effect. I have more hives than I did before starting it.
  3. camas

    camas Senior Member

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    According to someone posting on one of the facebook masto sites, at the recent annual Mastocytosis Society conference, Dr. Theoharides said that antihistamines could inhibit DAO/HMT (the enzymes which break down histamine) enough to cause live histamine to travel through the organs. Antihistamines also block the receptors, but they don't break down the systemic histamine. It still circulates in your body until it is excreted. I'm assuming this is why Dr. Theo's focus is on stabilizing the mast cells themselves rather than trying to block the downwind effects?
    xchocoholic, Adster and nanonug like this.
  4. nanonug

    nanonug Senior Member

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    Currently, I am just taking famotidine, an H2 blocker. But I am also supplementing with SAMe to speed up histamine methylation via the HNMT pathway, and copper to hopefully keep DAO available. The following short document entitled "Metabolism of Histamine" explains these histamine elimination pathways.
    xchocoholic, camas and Adster like this.
  5. Adster

    Adster Senior Member

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    SAM-E gives me a boost in energy much like the zyrtec does, but interferes with my sleep and causes anxiety and depression. Perhaps it's effects on histamine are why it helps energy though. Thanks for the info guys :)
    xchocoholic and camas like this.
  6. xchocoholic

    xchocoholic Senior Member

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    Maybe we need to stop the mast cells party via antihistamines then move onto supplements that help
    regulate mast cells. Or use both. Until we find out why our mast cells keep having these raves, maybe we need drugs to
    calm them. Benadryl for swelling isn't optional for me right now.

    I'm saying this because I'm totally impressed right now with how much better Klonopin works for my
    insomnia than the supplements I was taking for about 5 years. Yes, they worked but my brain was still in gear. Klonopin
    shuts it down and I'm not as hung over as I was with the supplements. I think it's that seizure like problem dr cheney
    wrote about.

    I bought vit shoppe quercitin yesterday. I have no idea how good it is.

    Great info ... Tx .. X
    CJB and camas like this.
  7. Sallysblooms

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

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    Yes, supplements are great for Mast Cells. I don't use Quercitin by itself, I use Quercitin and Nettles. Works great.
  8. camas

    camas Senior Member

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    Despite it's bad reputation, I've found Klonopin to be helpful (and Temazepam before it). I assuming that in my case it's because benzos are mast cell stabilizers.

    I hope the quercetin works for you. If not I can sure recommend the Thorne Quercetone. I'm still having problems with bone pain from the NeuroProtek, so am not sure how to proceed. I have a question in to Dr. Theo on this.

    Anyone else who has questions for Dr. Theo can message Jan Marie Smith on facebook. She's with the Mastocytosis Society and is going to be meeting with him tomorrow.
    xchocoholic, nanonug and CJB like this.
  9. nanonug

    nanonug Senior Member

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    Scratch that! I had to go back on fexofenadine because I was feeling terrible (my damn sinusitis!)
  10. xchocoholic

    xchocoholic Senior Member

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    Hi nanonug,

    I learned that I need at least 20 mg of wal-zyr each day so I can breath thru my nose so I get this.

    I did my first diy pmttt today. So far it looks like my oh and pots are gone. Kow. I still feel weak
    but who wouldn't after 23 years of having oi. I'm going to try exercising to increase muscle tone.

    After making breakfast and before Wal-zyr had time to work - bp 90/73 hr 118
    After laying down for an hour - bp 105 / 72 hr 67 (I feel healthy at this bp and hr)
    Diy pmttt - After 3 minutes standing - bp 104/ 78 hr 90
    Diy pmttt - After 10 min and 13 min - bp 104/74 hr 90

    Previously my hr would've jumped up to 118 - 12? during the pots test. I'll need to replicate this a few more times
    of course but so far it confirms that my pots is related to allergies and taking meds works.

    Fwiw, a diy pmttt for pots used to make me feel horrible for hours because I'd get a strong petite mal and sob.
    So far so good. : )

    Tc .. X
    camas, globalpilot and nanonug like this.
  11. camas

    camas Senior Member

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    X, Great results on your poor man's tilt table test! I didn't fare as well. Thought I'd try it before and after taking my morning meds yesterday. Here were my 'before' results which left me too sick to take 'after' tests. My heart still aches a little today, but I'm otherwise okay.

    bp 107/75 hr 64 (after lying down for 1/2 an hour)
    bp 112/91 hr 105 (after 3 minutes standing)
    bp 125/101 hr 116 (after 10 minutes standing)

    This is why I'm mostly horizontal, or on the move when I am up. Standing is just misery. I sure hope mast cell stabilization will help.
  12. xchocoholic

    xchocoholic Senior Member

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    Bummer. I "think" based on my hr (118) prior to my Wal-zyr kicking in that I would've failed pre med too.

    Are you going to try it again post med ? Are your meds helping with your oi ? Did you try zyrtec yet ? That's the
    one helping my oi. Wal-zyr actually but I don't know if it makes a difference.

    I know what you mean about feeling like poo after a positive ttt but my reaction clears in a matter of hours.
    Sorry to hear your reaction takes so long to resolve. Hugs.

    Not to sound like a Debbie Downer but even tho I had a good ttt I'm still not physically able to be upright for long. I'm not sure what role exercise intolerance and pem plays in all this either.

    Good luck on your next ttt. Tc .. X
  13. camas

    camas Senior Member

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    Thanks, X. I'm not planning on repeating the test any time soon. I'm too much of a wuss! lol

    My most disabling symptoms are OI and muscle weakness. I am on zytrec 10mg in morning and 10mg at nite now (using your divided dose strategy). It definitely helps my itching and flushing, and I think it helps my muscle weakness a little too. Quercetone seems to be helping my mood, energy, and cools me down. So I'm assuming the Quercetone is doing something to help with autonomic issues.

    Masto patients sure complain about exercise intolerance and PEM. Although they don't have the term PEM. Exercise can trigger mast cell degranulation, so it all makes sense. The only exercise I see any of them attempting is yoga.

    I doesn't appear that there are any easy fixes for this, but at least I feel like I'm pointed in the right direction now. :)
  14. Sallysblooms

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

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    Quercitin and Nettles cools me also. You get very hot with POTS. I can sleep better also, not so hot. Even with the house very cool, I used to be so hot.
    camas likes this.
  15. xchocoholic

    xchocoholic Senior Member

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    Good to hear you're trying zyrtec. I read it was the h1 most likely to help with swelling. You may want
    to try Wal-zyr. Brand name zyrtec made me sleepier than Wal-zyr. Oh, are you in the states ? You could get this
    online anyways right ?

    I'm taking Wal-zyr throughout the day. Not just morning and night. I got the idea from the folks
    at the mast cell forum and dinet. The idea is to "nip it in the bud".
    Get the mast cells before they get you. Play offense not defense. ;

    I'm experimenting with how much to take when to avoid feeling groggy. I can't seem to avoid this. And since my hr was 118 the
    other day after bkfst and before the Wal-zyr had time to work, I think I need at least 5 mg upon rising.
    No need to let my hr get that high.

    Taking 10 mg zyrtec (wal-zyr) at one time makes me feel weird sometimes so I'm
    testing taking 5 at a time but still getting 25 - 30 a day. I'm getting nasal and throat symptoms if I
    don't get enough in me. Now that I know I can breath thru my nose on this I don't want to give it up.

    Good to know you're seeing benefit from the quercitone. I'm still waiting to try the quercitin I bought.
    I went in to buy the nadh you told me about and came out with no flush niacin and quercitin. lol. So I'm experimenting with
    the niacin for now.

    fwiw, I've never been hot except when having a hotflash. I guess that's why I like being out in the sun so much.

    Tc .. X
    camas likes this.
  16. Sallysblooms

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

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    Xchoc, you have POTS and no temp. regulation problem?
  17. camas

    camas Senior Member

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    Funny that I had trouble with brand name Zyrtec, too. I'm taking Kirkland's cetirizine syrup for kids and by some miracle am not reacting to all the crap in it. I think I'll try breaking it down into even smaller doses like you've done.

    Next thing I'm going to try to add is holy basil as a natural H2 blocker, since I haven't been able to tolerate any of the H2 drugs. Apparently it also helps to stabilize mast cells. The Low Histamine Chef has an interesting article on it with links to the scientific papers on its benefits.
  18. xchocoholic

    xchocoholic Senior Member

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    Hi sally,

    My problem is that I get cold easily. I carry jackets with me everywhere. I'm assuming it's from my
    Hashimoto's.

    I get hot feelings and sweat from time to time but it only lasts a few minutes. When I was perimenopausal
    I felt the same but I had severe relentless hot flashes with major sweating. Once these were over I went back to
    feeling cold.

    I have a circulation problem, maybe reynaud's. My hands hurt if I touch frozen foods.

    Tc .. X
  19. xchocoholic

    xchocoholic Senior Member

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    Hi camas,

    That's weird that you don't do well with brand name zyrtec either. If I had to guess I'd say it was too
    much on my liver.

    Thanks for the link. I'll check it out later.

    Taking 5 mg wal-zyr when I wake up appears to have stopped my hr from climbing. It was 82 prior
    to bkfst and a low 74 after breakfast. It was 118 yesterday. I still had hypoperfusion tho. I'm going to need to strengthen
    my muscles.

    Tc .. X
    camas likes this.
  20. camas

    camas Senior Member

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    X, I'm trying your method of smaller doses (like 1.25 or 5 mg) as needed throughout the day, and it does seem to be working better. Maybe I'll get a hip flask for my children's cetirizine syrup and just sip out of it all day. lol

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