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DoozlyGirl

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About DoozlyGirl

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  • Birthday 03/20/1967

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    Female
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    Wisconsin

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  1. Just found this in a internet search. It is from an email between and mast cell patient and Dr Afrin regarding benzodiazepines: Since it's just been discovered that mast cells also express benzodiazepine receptors, and since both Dr. Molderings and I have now had some patients (though certainly far from all) respond very well to benzodiazepines, you should definitely get around at some point to trying something in the benzodiazepine class, likely either lorazepam or flunitrazepam. Lorazepam will probably be the more easily accessed drug, and I have taken to starting it in my patients at 0.
  2. Bren, I am so glad benzos are helping you. Just another clinical story pointing to complexity of all this. Nice to know there is another class of meds out there to possibly try. Before I learned of mast cells, I felt defeated because it seemed I couldn't tolerate ANY meds, when in fact I can't tolerate meds where the active ingredient is a known degranulater (such as beta blockers, opoids, anesthesia), contain sulfa or crossreact with sulfa (antibiotics, certain migraine meds, lasix, HCTZ) or contain FD&C dyes, especially yellow (specific doses of meds, like Synthroid, Levoxyl, where I
  3. I've never taken benzodiazepines, but I've been reading how it can be helpful in taming mast cells. I know of mast cell patients who can't tolerate any H1s and will take a benzodiazepine and H2 to thwart off degranulation, in place of a H1/H2 combo. Dr Afrin mentioned he has several patients where benzodiazepines have been very helpful.
  4. hippy, I also was bedridden for 6 months then housebound for several additional months. By the time I was diagnosed with signficant orthostatic hypotension and autonomic neuropathy, a miniscule amount of a betablocker sent me spiralling even lower and causing a resting HR in the low 40s for about six weeks. I would sleep 18-22 hours a day in the beginning. I have worked my way back to about 40 percent of what I was able to do before. Although I am unable to work, I am able to leave my house several times a week, go shopping and meet up with friends. I still sleep 10-13 hours a night. Hea
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