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Allergic reaction included insomnia, heart racing, jitters

Discussion in 'Mast Cell Disorders/Mastocytosis' started by xchocoholic, Sep 21, 2013.

  1. xchocoholic

    xchocoholic Senior Member

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    I recently had a minor biopsy and had to use a cream, Bactroban, to
    avoid infection. I'd used it previously successfully but this time
    I had what I consider a systematic reaction. I wasn't feeling well
    enough to take my bp and hr but I could tell it was up. My body
    temp dropped to 97.8 at one point tho. Low for me nowadays.

    Taking Benadryl, Klonopin and using hydrocortisone cream sparingly
    have helped. I took the Klonopin because my jitters feel just like my pre
    seizure feeling.

    This experience just reminded me of how I used to feel most
    of the time before getting my food and chemical intolerances
    under control. What a nightmare that was.

    Can't wait to feel my normal crappy self again.

    I posted this because I thought others might recognize these symptoms.
    tc ... x
    camas likes this.
  2. camas

    camas Senior Member

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    Sorry to hear that, X. Systemic reactions are not fun. Avoiding food and chemical triggers really does seem to help. I've had my best August/September in years. I'm thinking it may have been because I avoided all the seasonal high histamine produce I usually gorge on.
    xchocoholic likes this.
  3. xchocoholic

    xchocoholic Senior Member

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    Hi camas,

    Good to hear that you're doing well. Avoiding certain foods is tough but definitely worth
    it. Are you still taking mc meds ?

    I'm ready to stop finding new allergies. I'd used a lot of Bactroban before realizing
    I was reacting to it. Lol. My cfs brain just can't keep up with it all. The upside
    is the risk of infection is low.

    Aaaaaaaaagh ! x
  4. camas

    camas Senior Member

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    xchocoholic

    Yeah, you're kind of between a rock and a hard place when you react to an antibiotic that you really need. Good that you figured out what you were reacting to though, although it's always discouraging to have to add another allergy to the list.

    I had a couple of really bad days this summer to remind me of how much worse I can feel, too. Ha. Turned out I was reacting to what must have been a spider bite. Grew to the size of a quarter before it was finished and a potent cortisone cream didn't begin to calm the itch. Strange. One of the many hazards of gardening. :)

    I think I'm finding diet to be the most important part of calming my mast cells, but I'm still using low doses of klonopin, zyrtec, vitamin K2, feverfew, and antronex. I haven't done any experimenting since spring since I don't want to mess with my current plateau.

    Are you still taking any MC meds?
  5. xchocoholic

    xchocoholic Senior Member

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    camas,

    sorry to hear about your spider bite. Those can be painful. But I agree, I wouldn't stop
    gardening either.

    Do you find that you need all the supplements and meds you listed ? I take
    zyrtec and klonopin too but never tried the others.

    I stopped the mc meds about 2 months ago. I was feeling mentally sluggish and about that time
    I started having ruq pain with eating. My gi doc ordered an mri and everything was
    ok. So far I seem to reacting to meats so I'm limiting how much I eat.

    I'm taking children's dye free benadryl for now. As soon as this reaction is over
    I'll re-evaluate the mc meds. My strong reaction to the Bactroban makes me think I need
    to be on something regularly. I've seen repeatedly how my allergen bucket works.

    The upside is we know about mast cell meds now. : )

    tc ... x
  6. camas

    camas Senior Member

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    @xchocoholic

    Yeah, we sure have learned a lot about mast cell meds! I do think less is more when it comes to meds and supplements. I think this is probably the fewest number I've been on in years.

    I'm taking .5mg of klonopin daily and, every once in awhile, will take a tiny bit more if I'm feeling generally crappy. Dr. Afrin has his patients on three times this dose, but I just don't feel comfortable increasing my regular daily dose.

    I'm taking a tiny dose of Zyrtec -- just 2.5mg in the evening and then another 2.5mg during the day only if I'm flushing or burning which has been a pretty rare occurrence for the last few months.

    I've taken feverfew in the past to help prevent migraines, but hadn't made the connection that it was helping me generally feel better at the time. When I read that it had mast cell stabilizing properties, I started using it again and really feel that it has helped.

    The K2 helps move calcium out of the bloodstream where it can trigger mast cells, into the bone. I'm taking this just for good measure and also since I have osteopenia.

    My doctor had me add the Antronex because he said it helps the liver break down histamine. I don't know if it's made any difference, but will finish out the bottle and see how I feel.

    I'm just happy to be experiencing a plateau since it makes day-to-day planning so much easier. I'll see what the changing seasons brings though..
    xchocoholic likes this.
  7. xchocoholic

    xchocoholic Senior Member

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    thanks for explaining how these work. I have some googling to do.

    on the klonopin. have you tried the sublinguals ? I typically only need 1 .125 mg
    sublingual because they seem to work better than the others.

    So if Dr Afrin is recommending this does it affect mast cells ? I forgotteded. lol.

    I was only taking this for sleep at night but noticed a few times that it made
    me feel better less jittery, during the day too.

    Hmmmm, so these jitters I'm getting during the day at times could be allergies too.
    duh ... I was thinking it was a blood glucose, seizure or adrenal problem.

    I'm falling asleep here so I have to go. ttys. x
  8. camas

    camas Senior Member

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    I've never tried the sublinguals. Might be worth a try!

    Oh, yes. Klonopin and other benzodizepines are mast cell stabilizers. Here's what Dr. Afrin's has to say about them:

    The most inexpensive sustainable therapies for MCAS (and indolent SM) generally
    include histamine H1 and H2 receptor blockers (addressing such receptors on end organs as
    well as mast cells themselves) [48, 68], benzodiazepines (also addressing such receptors on
    end organs as well as mast cells themselves) [314, 315, 316, 317, 318], and non-steroidal antiinflammatory drugs (NSAIDs, including aspirin). [48, 68]

    Like antihistamines, benzodiazepines often are useful not only in chronic management of
    MCAS but also in emergency management of the disease. Although benzodiazepines with
    longer half-lives such as diazepam can be helpful, most MCAS patients who benefit from
    benzodiazepines use shorter half-life drugs such as lorazepam, clonazepam, or alprazolam,
    typically dosed every 8-12 hours. Although dose-finding experiments initially should use the
    same dose given at regular intervals, many patients report eventually discovering optimal
    benefit from benzodiazepines upon using slightly different doses at different times of the day
    possibly involving slightly irregular intervals; the shorter half-life benzodiazepines obviously
    are more amenable than the longer half-life benzodiazepines to such personalization of
    therapy. The author typically asks his patients to begin lorazepam, clonazepam or alprazolam at 0.25 mg every 12 hours, escalating weekly as tolerated in increments of 0.25 mg twice daily (e.g., 0.5 mg every 12 hours, 0.75 mg every 12 hours, etc.) until either maximal efficacy is achieved or it becomes apparent (typically at a total daily dose of about 4-8 mg) the drug will not be effective at a tolerable dose. Experimenting with increased frequency (e.g., every eight hours) can be pursued after the patient comes to understand the drug’s effects at twice daily dosing.

    I've attached the document from which I took these excerpts.

    Actually he's recommending way more klonopin (clonazepam) than I'd feel comfortable taking, but I have always felt better on any bezodiazepine. I think it's interesting that two of Dr. Cheney's most long-standing treatments for CFS are klonopin (mast cell stabilizer) and doxepine (H1 blocker).

    Attached Files:

    xchocoholic likes this.
  9. xchocoholic

    xchocoholic Senior Member

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    Thanks for that info. So I can tell when I need klonopin to stop feeling shakey.
    It works everytime. kow. I can typically get by with 1/2 or less of a .125 sublingual
    if it's not severe.

    But will it have an effect on say a runny nose or lip swelling ? I can't wait to try
    this.

    I found a new allergy med too. It.s called pyrilamine. Nowadays it's mainly being used
    in the US in pms relief meds. It's available per prescription too but I heard it was
    very expensive.

    It's first generation and really knocks me out. BUT
    I think it worked better than Benadryl on reducing swelling. I had some other
    medical problems and had to stop experimenting with this but I'm planning on
    trying it again for swelling. I wish I'd remembered it during this last allergic
    reaction. duh ... x
  10. camas

    camas Senior Member

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    I'm so glad you found an antihistamine that helps reduce your swelling. Scary. I don't know how well klonopin would work on swelling after it's started, but it sure doesn't seem like it would hurt! I think it's sometimes hard to know what to do during a reaction because brain fog kicks in. It didn't dawn on me to up my meds for several days after the spider bite because I just didn't make the connection. Had I been a little sharper, I probably would have. Kind of a Catch 22!
    xchocoholic likes this.
  11. xchocoholic

    xchocoholic Senior Member

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    Yep, brain dead syndrome. lol.

    The whole idea of pwcs fending for themselves against a medical profession
    who doesn't get it is a Catch 22. It's got to be frustrating to the people who've
    educated in health to be less informed about our illness than patients are.

    I have to experiment with pyrilamine again to see if I want to use it. I was such
    a zombie on it. But I only tried it a few times. I became interested in pms
    meds after seeing them advertised on tv for bloating. That when I found
    that some of the companies using this actually refer to it as a diuretic.

    Aaaah, if I only had a brain. lol. tc. x
    camas likes this.
  12. triffid113

    triffid113 Day of the Square Peg

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    xchocaholic, have you had these food allergies (dye, meat) all your life or just as you got older? Because I have a wheat allergy and I only have symptoms when I am low in zinc (which happens during allergy season - seasonal allergies, airborn, or when I work late hours and eat junk food). When I first attributed the problem (achy joints and depression) to wheat (which turns out years ago I was tested allergic to but never noticed any symptoms from) I gave up wheat (requires a celiac diet) but then I noticed I became hyper sensitive to the faintest shred ofwheat and at the same time I did not get enough carbohydrates such that I became brittle hypoglycemic. So instead I decided to eat wheat and take zinc, and the zinc cured the problem which was due to leaky gut caused by insufficient zinc to make the skin of the gut. (In which case the skin is made with larger pores, thus absorbing food before it is digested, and undigested wheat is a nasty allergen).

    So I was wondering if zinc helps you and especially if this is a problem that mostly cropped up as you got older because it might be harder to absorb zinc and copper when you don't make your hormones anymore. It is a theory of mine so I just wondered if it might apply to you?
  13. triffid113

    triffid113 Day of the Square Peg

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    What helped me with PMS (as much as I could be helped) was calcium citrate (with magnesium citrate) in a dose 2-3x a normal daily dose, There was a doctor who published a book that said his patients seem to do better like that and that certainly applied to me. magnesium is needed by the kidneys to excrete urine btw. I think the doctor credited calcium, but I always knew there is a cal/mag ratio and I never take them separately. So I can never tell which helps me, but once during PMS after a 3x dose I tested "somewhat" low in calcium! (I told the clinic doc didn't he think that incredible since I had a THREE times dose???! He did not care because it was not low enough to care and he really didn't care what I had to do to get it there. Now of course having had my genes plotted I know I have the VDR genetic defect ad I tested low in D despite always taking multis with D. So...? I don't know if cal/mag would help those without VDR but only that one doc said it helped all his patients who suffered PMS. I always wondered if all patients with PMS had the VDR defect. My sisters did not have PMS but they've never felt the need to map their genes either.
  14. triffid113

    triffid113 Day of the Square Peg

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    Of course I should add that menopause is PMS forever (if you had PMS to begin with). And aren't you the one I was reading recently getting high blood pressure from allergy reactions? cal/mag supplements drop my bp 30 points! There is NOTHING else that comes close.

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