Every morning I wake up as if I had been hit by a baseball bat...I HATE mornings. I wake up like the hunchback of Notre Dame and then have to snap EVERYTHING into place. First, my back. I move side to side until my low back pops in. Then, my neck; it hasn't been sounding too good and it's starting to hurt like heck again. I stand up and my feet have to get into place; sometimes it happens right when I stand up, sometimes it takes a few steps, but by the time I get to the bathroom they're usually where they need to be. But, by the end of the day, everything hurts again, especially the neck and shoulder muscles. The pain management doctor prescribed this wonderful magical topical compound ointment that really helps. It has steroids, cyclobenzaprine (Flexeril) and gabapentin among other magical things and within 5 minutes or so it has really taken the edge off the pain. I still have to take the Robaxin and Flexeril (cyclobenzaprine) orally but the ointment helps a lot, especially at bedtime!
So I've gone to an allergist to get tested for Mast Cell Activation Syndrome. The best I can describe it is: the body can respond as if in an allergic reaction to anything pretty much all the time. That's the short answer. I constantly carry an EpiPen and liquid Benadryl all the time. I take Zyrtec and Zantac twice a day, everyday and on top of that need Benadryl for something or other everyday. An allergic reaction doesn't mean anaphylaxis, it can be a migraine, stomach pain or cramping, hives or itching, vomiting, flushing, broken capillaries in the eyes, frequent urination and many other things. For example, I had a simple salad at Panera the other day: antibiotic-free turkey, romaine lettuce, pears, cherries, gorgonzola cheese, walnuts (which I took out just in case) and balsamic vinagrette. I only got to 3 bites! I ran to the restroom and vomited the gorgonzola. I ate no more and threw the salad away :( An hour later the area around my eyes was flushed as if I were wearing a red mask and my eyes were bloodshot. I started taking Benadryl. After two doses the flushing and eyes went away but the capillaries all over my face were visible and my face was mildly swollen. Fabulous!
After Benadryl face swollen, flushed and capillaries visible.
There are way too many things that I have developed allergies, or sensitivities to, to write them all down here, but some examples are: rice, milk products (cheese, yogurt, etc), yams, bananas, apple peels (but I can eat the rest of the apple), wheat products, shellfish/fish, beans...all narcotics, 3 different antibiotics...and the list goes on and on. Right now I have no protein in my diet which is becoming a serious problem.
I went to see Dr. Bernstein, at the Bernstein Institute to be tested for Mast Cell Activation Syndrome (MCAS)/Mastocytosis, but he was focused on "food allergies" and asthma aspect. From the get-go he said "you don't want to have that, besides it very rare". Duh, of course I don't want to have that! I also don't want to have EDS, but guess what!!! However, he did order the testing: 24 hour urine collection testing for histamine and tryptase and another test which looks at carcinoid type. Histamine levels came back at 550, normal high range are 450, and that was while on Zyrtec and taking Benadryl through the day!!! That's a definite indication of allergic reactions and would be proof of MCAS. Tryptase came back normal, however that means nothing since tryptase needs to be take 2-4 hours after an allergic reaction and mine was not. I think/know that Dr. Bernstein would say that histamine is high because if seasonal allergies or some ridiculous thing like that. Through a support group I started visiting, I learned that Dr. Andrew Smith, from the same Institute, had been a speaker at the Mastocytosis Conference, so I decided that since I was already uncomfortable with Dr. Bernstein, I would give Dr. Smith a shot; he may be more open to the idea of MCAS. Unfortunately, the follow up appointment with Dr. Smith won't be until November 21st even though I'm an established patient. That STINKS!
In the meantime, I'll have to continue with the Zyrtec 10mg 2x day, Zantac 150mg 2x day, Benadryl as necessary and dosages according to the reaction, carrying my EpiPen and avoiding triggers as much as possible since even smells can be triggers. I don't want to think about the possibility, but my son may have had a migraine triggered by the smell of fish cooking. I know he has facial swelling and asthma-like symptoms triggered by the smell of shellfish.
Flushing triggered by the smell of vinyl flooring.
Well, let's see what tomorrow brings :)
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