Hi Susan!!!

Gosh, I'm sorry you're hurting!  Sue, it sounds like masto to me and it sounds like several things.  I know that on good days I could probably eat everything you've had there, but if it's a "full bucket" day then I'd be reacting to the cheese, the tomatoes, the tuna...   Especially the three together.  Cottage cheese and farm cheeses are the best because the aging process is what raises the histamines, but when I've been on bad days, then even that will trigger me.  

Have you been overly stressed at work or home?  Getting enough sleep?  What about meds, you're not running low are you - you know what I mean - over time it seems that our levels seem to rise and so the need for more meds goes with it.  Perhaps this is what's happening.  Yet, here's another thought - it is flu season for your guys up there and none of us are immune to it.  I got a stomach bug 2 years ago that just turned my insides to pure liquid and I lost about 10-12  pounds in a week!  It was awful!  The two, masto and the bug, kicked in and had a royal party together!!!   This could also be a possibility and you had the bad timing of eating fish to coincide.  I didn't have any vomiting, but just horrendous diarrhea.     So, perhaps this is the situation that has you doubled over.

So, what to do - Increase your H2 blocker!!!  Take an extra right now and see if this helps.  It certainly won't hurt and if it doesn't resolve the situation, then you'll know, it's not the masto and you need to consider what the next step is from there.

I hope this helps and I hope you feel better quickly!!!

Hugs!!

Lisa

Thanks Deb and Lisa -

I don't usually eat tuna - I used to, haven't in a while so I thought I would try it for lunch.  Big no no.  I don't remember reacting to it before but that doesn't mean anything with this disease.  

I have some pain still, lower torso, but its moved down and isn't constant so I guess that is good  

I have been under a lot of stress - I am almost constantly for different reasons at work and home.  For about the last 3 weeks I have noticed my H2 wearing off much earlier than usual - waking up in the middle of the night, having problems right after lunch.  I take 300mg of Ranitidine in the morning - and a Prevacid in the evening.  I am not quite sure how to increase those.

My follow up visit to the NIH is Feb 16-18th - I don't want to wait that long to get relief but maybe they can tell me how much or what to increase.  In lieu of that visit, I suppose I need to be EXTRA careful on what I eat and in what combination. Thanks ladies -

Susan

Susan,

You are only on Ranitidine and Prevacid?  My goodness, you are way, way undermedicated dear!!!  You don't have any kind of mast cell stabilizer?  or H1 blocker?   And you are making it only on the Ranitidine 300mg in the morning?   It's no wonder you're suffering!  

Sue, antihistamines have only a 12 hr lifespan!  By the time evening comes, you're needing another dose!  This is why you're not getting through the night!   But you're also not on an H1 blocker and you should be.  

I suggest that you get some OTC zyrtec  and take 10mg in the morning and evening and I'd take the Ranitidine 300 mg at night too and see if this gives you some relief.   I think that you'll find that everything is immediately resolved and that you'll feel better right away.  

You may be thinking - ooh, take this without my doctors at the NIH telling me to?   Think about it Sue, if this gives you relief, then you were needing it.  If they find that it's not good for you, then they can change it once you see them.  Talk to them about adding Singulair and Chromolyn as well.   But remember, these meds are over the counter now and you are free to work with these as you please.  They are not going to present any problems to you and we masto patients take loads of antihistamines.  These doses are what the great majority of us take, so I'm not putting you into danger by suggesting this.  But, it's up to you.  Yet remember, you're right on the edge of anaphylaxis and this poses a far greater risk to you than these meds do.  So, please consider what I'm saying.  

I hope you feel better soon!

Lisa

Sorry - I still have a bit of brain fog - you should have seen me at work today.  I went in late but still-

I am currently taking

Morning -
300mg Ranitidine
10mg Zyrtec
10mg Prozac

Evening
10mg Zyrtec
Prevacid
Daily vitamin
Calcium
Fish Oil - I cut back on that at someones rec about 4 months ago and i don't have a problem with it now -

I take Benadryl if I trigger a little bit - I don't do well mentally if I have to take Claritin or something like that on top of the Zyrtec -

Does anyone take the Prevacid and the Ranitidine at the same time?

Just fyi: Dr. Akin has me take an extra allegra or zyrtec for my breakthrough flares....So, basically if needed, I could take an allegra and zyrtec in the morning and allegra and zyrtec in the evening.

Sorry - I meant to say "assuming what you have is issues with mast cell degranulation".......

Re: the Benadryl - that was something i learned from others on this site. I would love to hear what the folks say at the NIH - I plan to ask the Brigham & Women folks in a couple of weeks, too, so let's compare notes then.

I did speak to Dr. Greenberger at Brigham & Women's today as I had a massive flare last night - tingling mouth that then morphed into massive tongue swelling, flushing, and diarrhea which continued through the night). Dr. Greenberger suggested taking Claritin redi-tabs instead of the Benadryl b/c it is not as sedating. I was  not able to pin him down on how much Benadryl I can take if I find it more effective and don't mind the sedation (at this point, i can deal with sedation - what i can't deal with is the other stuff!) so for now i will try to minimize usage and see if the Claritin works. He also suggested I add low dose aspiring daily (start at 81 mg / day in the a.m.) which I began this morning. I believe if I'm still having issues in a couple of weeks, he'll consider one or more of the following: 1) additional low-dose aspirin daily 2) doxepin 3) atarax or another histamine blocker to replace or add to my current regimen......

Hope that helps!