Hi IsItMCAD,
I am probably not the best person to ask about specific meds and what exactly to take to help you try to be "covered" in the best possible way. I have yet to establish an H1 blocker.
Did you look on the forum to see what most patients take on a regular basis? Are you taking enough blockers? I know some alternate allegra and zytec and that seems to work better. Do you use benedryl when your symptoms start to worsen? that will usually shut down a reaction before it gets too bad.
I used to think that I would "wait it out" so I didn't have to take so many meds. Now I know that at the first sign of trouble, I add extra dose of a med. So if I am getting dizzy or have a stomach ache, I will add an extra dose of Pepcid. If that doesn't shut down the reaction, then I will add another dose of medication that is in my regiment.
Some of us need mast cell stabilizers as well as H1 and H2 blockers because we seem to be more hypersensitive. You may fall into this category. I take both cromolyn and Ketotifen which are both stabilizers. Unfortunately they both require a prescription. But they surround the mast cell and prevent the release of many of the chemicals.....unlike the H1 and H2 where the chemicals are still being released but are being blocked from attaching to the receptors that cause us to react. so the chemicals are still being released only the symptoms are controlled.
If I were you, I would call Dr. Gotlieb's office back and tell them what you are experiencing....in detail! Write everything down and ask to talk to a triage nurse. Ask her what she recommends you do at this point. Be persistent! I know it is really hard when you feel so lousy, but it is critical to be your own best advocate. It is sad that that is the way it is, but we all seem to go through that until we get established somehow and somewhere!
Were you symptomatic when you were tested? I know my tests were normal the first time except for my heparin level (which some don't consider a marker). The second time I was tested, it was just for two things and they both came back normal. The third time was "the charm".... IMO it seems like elevated prostaglandins or histamines are important (like the N-methylhistamine test or the prostaglandin F2). Yet, I was diagnosed with just elevated heparin, a complete medical history and dermagraphism. The third time I had elevated prostaglandins, chromagranin A, heparin and also other irregular blood levels (like basophils and reactive lymps, etc.) If you could get a local doctor to test you when you feel you are at your "worst" maybe that would help. Or if you are in a crisis, have the ER do a tryptase and an N-methylhistamine test. Be sure and read when these should be done as the timing is important. It is within a specific period of time of when your reaction took place. It's just really hard to get a hospital to do these unless you have an order in place. That's because a local doctor has to be responsible for the test and results and reporting if something is positive. Do you have a local doctor that would help you?
What do you do when you are in a consistent pattern of symptoms? Are you sleeping and resting enough? what are you eating? Have you tried an Epsom salt bath? (no longer than 20 minutes!) Sometimes drinking warm water helps me and LOTS of it. Or sometimes I puree my food so my digestive system doesn't have to work so hard. For some of us, just digesting food stirs up our mast cells. ugh......it is sometimes difficult to figure out! Make sure you don't get too warm or too cold...this can set things off as well. Hope some of these suggestion might help.
Let me know how you are and I will try and answer any other questions you might have...and if I can't we will both holler for help from someone more experienced! OK?
take care......keep us posted. Hugs, Lynda