Dr. Greenberger told me that the only safe pain medications are Tylenol, tramadol (Ultram), and dilaudid (in a crisis).  Personally, I can't use anything that thins my blood (aspirin, NSAIDs, turmeric, etc...), but other people on this board have reported that NSAIDs don't bother them.  You could try it and see how it goes, but don't do it when you're alone... have someone around in case you have a bad reaction.  Same if you try an opiate-derivative like hydrocodone or fentanyl.

I've been having problems with severe abdominal pain starting a few days before my period.  Tramadol takes care of the pain, but it also makes me reaaaallly sleepy.  Dr. Castells thinks I might be allergic to progesterone plus some foods that are not showing up on RAST.  She has me doing a strict elimination diet... all I'm eating is meat (chicken, turkey, buffalo, lamb), sweet potatoes, rice, and blueberries.  It seems to be working.  I've had some mild cramps, but nothing like usual... I haven't had to take any pain medication (!!).  The true test will be if I can get through the rest of the week without any serious pain... I'm expecting my period to start within the next 5-7 days.

Heather

I have a Mirena IUD, which for "most" people either makes your period very light or stops it completely.  Ha!  Not me.  I'm afraid to try any of the pills that contain estrogen because there's a history of breast cancer in my family.  So... although it sounds like a great idea to suppress your periods, it doesn't seem to work for me.  

Heather

The Mirena uses time-release progesterone.  It's a smaller dose than you would get with a pill, but if I really am allergic to progesterone (the next step is a skin prick test) then I'll probably need to have the Mirena taken out.  The problem is... I'm also allergic to latex, so that pretty much rules out every easy kind of birth control... pills, condoms, a diaphragm (unless I can find a brand made of silicone), an IUD... ugh!  I've only taken birth control pills once in my life.  They made me bleed non-stop for three months until I quit taking them.  There are some other drugs that can stop your periods by suppressing hormone production... Lupron, danazol, etc... but they have some side effects that might make you think twice.

I saw Dr. Castells and Dr. Greenberger in person in June!  I hope they can figure out how to control this abdominal pain without turning me into a zombie.  Otherwise, I'm doing really well!!  I feel so much better than I did two years ago... there's just no comparison.  

The main thing that led me to this diagnosis is repeated anaphylaxis in the absence of a known trigger (like a food allergy).  Looking back I had other signs... repeated "food poisoning," dizziness, flushing, mild kidney damage... but without the anaphylaxis I never would have put the pieces together.  The symptom that led me to my hematologist is swollen lymph nodes.  After ruling out malignancy and Castleman's disease he said it must be part of my (autoimmune) mast cell disorder.

I hope you find the answers you need very soon

Heather

The really bad attacks are classic... hives from head to toe (OMG does that itch), vomiting, diarrhea, tachycardia, intense dizziness, a feeling of doom, etc...  I haven't had one like that for a while.  Thank God!  Now my attacks are more subtle.  For example, the last one happened when my daughter was playing with a "koosh" toy.  She was blowing it up like a balloon and then letting it fly around the room.  My throat got itchy and I started feeling dizzy.  I told her to stop playing with the toy, but I spent the rest of the night with a headache and a "heavy" feeling in my chest (even after taking some Benadryl).  NOT GOOD.  I didn't have to use an EpiPen or go to the ER... this time... but a bad attack like that could be fatal.

I think being on a mast cell stabilizer (Gastrocrom) has really helped to slow down my reactions.  I've also become a lot better at avoiding my triggers and treating myself at the first sign of symptoms... not waiting to see how bad it gets.

Not everybody experiences anaphylaxis exactly the same way.  My son, for example, is allergic to peanuts.  Even a small exposure gives him hives and makes him throw up.  One of my daughter's classmates, on the other hand, is also allergic to peanuts... only his reactions are primarily respiratory (no hives).  It would be easy to get the wrong impression that he's having an asthma attack instead of anaphylaxis.

Heather