DeborahW, Founder wrote on 12/31/12 at 03:46:45:The forum gets really quiet during holidays, so make sure to check back later for responses to your question! I would respond, but have to run out to the stores for New Year's Eve supplies for the family!
Can you list the meds you take, the dosage, and how often you take them for us? That will help us give you better responses. Daily meds are key to preventing mast cell symptoms if you have a disorder. The tricky part is figuring out which ones work best for YOU.
Also, make sure to read my tips in the Start Here category. That will help get you started. Lastly, if you find my own intro story, that should give you motivation! I was sooooooooooooooo sick that I could barely walk at one point! Now, I am good!!
Thanks Deborah,
I take lots of meds for other illnesses, but have tried to hold off on medicating myself with H1 and H2 blockers until I see the masto doctor at M.D. Anderson. Am concerned that if I'm self medicating it might throw off testing he'll do.
Have bought a few different H1 blockers, and an H2 blocker but haven't been using them for reasons above.
Have read of tramadol helping with mast cell issues, (don't understand yet why), and I do have a script for that for IC pain.
My masto issues may have an auto immune aspect, as I have Hashimoto's and other issues that have a suspected auto immune basis.
Am in a severe 'crash' after the holidays with POTS, CFS and I'm sure mast cells are an issue.
My norepinephrine (adrenaline) is over 1400 which is off the charts, so I don't sleep for more than one hour or two at the most at night.
So it's complicated. Usually a norepinephrine level that high indicatescan adrenal tumor, but in my case it's a very extreme case of hyperadrenergic POTS.
Have always tried to 'attack' IC, CFS, and POTS without addressing the mast cells, (except by following a protocol of injecting myself with heparin sub-q for IC) Yes, it works, but finding a doctor who is knowledgeable about it is difficult.
I could be self medicating with that, and as I write this, I think I might try 1 ml of heparin sub-cutaneaously just because I feel so lousy.
I have a lot to learn about the mast cell aspect...The doctor at MD Anderson is supposed to be an expert.
My immunologist is friends with Dr Theo at Tufts, and she's the one who suggested I have mastocytosis.
Thank you,
K