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Anti-histamines: good thing, bad thing?

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by Sasha, Jun 21, 2015.

  1. Sasha

    Sasha Fine, thank you

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    I've managed to resolve my severe and frequent tyramine-induced migraines by severely restricting my diet but the result is that my diet is severely restricted! If I try to reintroduce any of the foods that I cut out, I'm pole-axed worse than before.

    Should I be asking my GP about anti-histamines?

    Are there dangers?
     
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  2. justy

    justy Donate Advocate Demonstrate

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    Hi Sasha not sure where the connection with ANTI H's is? are you saying you have a problem with both Histamines and Tyramines?

    As far as I know if you stick to second gen anti histamines it shouldn't be a problem - only the 1st gen ones like Piriton (drowsy types) are thought to cause problems if taken high dose long term. If Histamines are an issue you may need both H1 and H2 blockers. I take Loratidine and Zantac twice a day to control reactions, but this is still not quite enough and I may need to add something else...sometimes my throat swells a little but my GP isn't concerned about this despite my distress.

    You can try ant histamines yourself over the counter, but should of course check with the pharmacist with any other drugs you take...

    I am a member of a Mastocytosis and MCAS group and everyone on their takes high doses of multiple anti H's every day for many years. I have however heard of some rebound when you stop them, but as hey are the only thing standing between me and severe itching.

    I also am on Low H diet and it seems I react to other things also... the diet is a pain especially as I don't eat meat. I now eat a lot more fresh veggies and a bit more milk than I did.
     
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  3. Sasha

    Sasha Fine, thank you

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    Thanks, @justy - I cut tyramine out of my diet and stopped the migraines but there seems to be a huge overlap between tyramine-containing foods and histamine-containing ones so I don't know whether my problem is tyramine or histamine.
     
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  4. justy

    justy Donate Advocate Demonstrate

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    Sorry for the rambling post Sasha - I have noticed I keep leaving sections out - my thinking is quicker than my typing!
     
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  5. justy

    justy Donate Advocate Demonstrate

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    I am afraid that if it is Histamines you will need to stick to the diet anyway. If the diet alone is helping I wouldn't mess with antihistamines, unless you think that there are other issues they may be affecting - and this is quite possible!
     
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  6. Gingergrrl

    Gingergrrl Senior Member

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    I don't think they are "good" or "bad" but with severe MCAS or mastocytosis they are required in order to eat and stay alive without anaphylaxis. Of course people take them for other reasons, too, but I think if they bring symptoms relief they are doing something good. If I had not gotten IV Benadryl and then IM shots of Benadryl allowing me to eat, I am not sure that I would be alive today.

    I am now taking Zyrtec, Gastrchrom, Cromolyn by nebulizer, soon to add Ketotefin, plus several other meds and supplements (I think close to ten now) in order to eat just a limited number of foods. It sucks but it is necessary at least for now. They are only "bad" IMO if they cause a dangerous reaction (anti-cholinergic crisis in my case) which stopped my regime and switched it in a new direction so I could continue to eat something every day. But I don't think the meds themselves are good or bad. Not sure if this helps in any way?
     
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  7. Sasha

    Sasha Fine, thank you

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    Sorry things are sucking so badly for you at the moment, @Gingergrrl. I hope things improve for you!
     
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  8. Gingergrrl

    Gingergrrl Senior Member

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  9. ahmo

    ahmo Senior Member

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    My histamine issues have primarily been skin conditions, so possibly far less serious than your's. I found rutin to be as good as OTC antihistamines, acting within minutes. Royal jelly and mangosteen or quercetin helped with the mast cell component. With my MAO-A ++, the FMN form of B2 drastically reduced my need for these supps, and a month later, a 3-day water fast eliminated my need for all of them. I've been able to add back small amounts of fermented foods since these 2 interventions.
     
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  10. Vasha

    Vasha Senior Member

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    Hi @Sasha-
    I'm mostly echoing @justy and @Gingergrrl, but if it helps, MCAS medicines are what got me from daily horrible migraines and under100 lbs to a sustainable weight. Without medicine, I react badly to histamine, tyramine, and other biogenic amines- you may be reacting to more than tyramine without realizing it. I think that's very common.

    FWIW, I usually had reactions--terrible migraines, nausea, vomiting, dizziness--that didn't look like traditional anaphylaxis (to me) so I kept insisting that I didn't have any allergies. Only occasionally did I have hives, flushing, tongue swelling, etc. It was amazing when the medicines kicked in and I could eat a range of food again--I literally went years not being able to eat oh-so-many foods without getting terrible migraines. I just wrote to my neurologist to let him know that this approach has helped migraines more than anything else we've tried. Srsly.

    As Justy pointed out, you need both H1 and H2 blockers. Beyond that, I think people tolerate or respond to different things differently. If it helps at all (ie if this applies to you) I have low stomach acid, so Zantac wasn't a good idea for the H2 blocker for me. Instead I take Singulair, an asthma medicine that is prescription. Quite a few H1 and H2 blockers are over the counter, which helps, but some of the other medicines, like singulair, and the gastrochrom Gingergrrl mentioned-it stabilizes mast cells-are prescription. Currently I take zyrtec, singulair, gastrochrom and allegra, and also take diamine oxidase supplements before meals that have anything histamine-heavy or otherwise challenging in them. Quite a mix for someone who "doesn't have allergies" . o_O

    I haven't had side effects, but Gingergrrl's example would definitely be one reason to talk to your GP first. Hope this helps-Good luck figuring out what to do! I have a paper on mast cell issues somewhere that is really helpful. If you'd like it just let me know and I'll PM it to you.

    And @Gingergrrl, more hugs:hug:! I'm so sorry you've had such a hard time! And so glad the benadryl at least helped stabilize things enough to eat something.

    Vasha

    P.S. I had out-of-range levels of histamine in my blood, which is an unequivocal marker of MCAS, but often doesn't show up bc histamine's so volatile. So the researchers I read--e.g., Dr. Afrin- say it can be worth treating to see if it helps even without the blood markers.
    P.P.S I guess I'm saying for me anti-histamines have definitely been a Good Thing. YMMV. ;-)
     
    Last edited: Jun 22, 2015
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  11. IreneF

    IreneF Senior Member

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    I take loratidine (Claritin) to prevent sinus infections and ranitidine (Zantac) to prevent acid reflux. They work.
     
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  12. Sidereal

    Sidereal Senior Member

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    H1 antagonists were crucial in allowing me to transition from that state of not being able to eat almost anything without symptoms. I personally think H2 antagonists make this problem worse.

    Like Vasha I always viewed myself as a person with no allergies. The histamine problem is much weirder in ME/CFS than "allergies". You might wanna read up on MCAS to see if it fits you.

    You don't need a doctor's prescription for antihistamines btw.
     
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  13. justy

    justy Donate Advocate Demonstrate

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    @Sidereal - I think its very individual - I cant eat anything without severe reflux unless I take H2 blockers - 150mg Zantac twice a day in my case - plus H2 blockers help to reduce ALL gastrointestinal reactions such as throat and tongue swelling.
     
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  14. Sidereal

    Sidereal Senior Member

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    It is individual, I agree. Zantac makes all my symptoms worse and I know several others with the same problem. You just gotta play around with various meds until you stumble on the right combo for your individual situation.
     
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  15. Gingergrrl

    Gingergrrl Senior Member

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    Thanks @Vasha! Am not taking the Benadryl any more b/c of toxicity reaction but currently taking Zrytec and six other meds to eat and as of tomorrow I add Ketotefin. Zantac did nothing for me and no longer part of my protocol. I also saw a wonderful mold specialist today but cannot start any of the mold treatments until confirming with MCAS specialist that they are okay. It's all very complicated and overwhelming!
     
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  16. Sasha

    Sasha Fine, thank you

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    I've read up on MCAS but I don't recognise myself. I don't have any classic 'allergy' symptoms AFAIK.
     
  17. Vasha

    Vasha Senior Member

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    Hi @Sasha - just in case, I put below a paragraph and a link to an article that might help further if you haven't seen it. A lot of what I read at first really emphasized flushing, hives, and other traditional "allergy" symptoms. I had to read a couple of reviews by Maria Castells' group and Dr. Afrin to recognize myself, and even then, it was the bloodwork+the response to medicines that made it clear (to me anyway; Dr. Kaufman was sure) because even the researchers focused on IgE-like allergy symptoms for awhile (and many people do have those as a feature). I even had a series of IgE food-allergy tests (the skin prick) and came up with no allergies.

    This is all very nascent science, as well, so the articles tended to include more "allergic" symptoms at first--presumably, what they expected--and then broadened out.

    You could also try taking a diamine oxidase (DAO) supplement before meals with histamine or histamine activators. That is over the counter, though I find it kind of expensive. It does seem to work, though.

    Vasha

    "The diagnosis of nc-MCAS must include symptoms from at least two different organ systems. Examples of common organ systems with associated mast cell activation signs and symptoms are the skin (flushing, urticaria, pruritus, dermatographism), gastrointestinal (abdominal pain and diarrhea), pulmonary (wheezing and shortness of breath), upper respiratory (nasal congestion or pruritus, throat swelling), cardiac (tachycardia, syncope or near-syncope), neurologic (concentration difficulties, headache). In the clinical series of MCAS patients that have been analyzed to date (14, 30, 37, 38), the most prominent symptoms consistently described are flushing, abdominal pain, diarrhea, headache, and memory and concentration difficulties."

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3545645/
     
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  18. Vasha

    Vasha Senior Member

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    @Gingergrrl, I am so glad you at least have been able to access these specialists. Fingers crossed you can start the mold treatments without trouble, and that they work well!

    Vasha
     
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