Aimes Posted May 16, 2013 Report Share Posted May 16, 2013 Does anyone here have Mast Cell Activation Disorder but not Hyperadrenergic POTS? I've always been fine on my catecholamine tests, but have all the MCAD symptoms. Dr. Goodman at Mayo agrees so this weekend I'm starting the cocktail of Allegra, Pepcid, and Cromolyn. I just feel like I don't fit any of the POTS "molds" if there is such a thing! :-) I've only heard of people having MCAD if they have Hyper POTS and usually EDS. I do have hypermobility and extremely fragile skin that doesn't heal well, just no Hyper. I guess I'm just a mystery! Haha! Quote Link to comment Share on other sites More sharing options...
issie Posted May 16, 2013 Report Share Posted May 16, 2013 I have high NE levels with standing - and was classified as Hyper and also have EDS. But, Dr. G is treating some of us with the "cocktail" and most of us are having pretty good results with it. I started out with just one vial a day and worked up. I'm not using the full amount and find that 2 times a day - 2 vials each time - seems to be enough. Somedays when I'm really bad I'll take more - but, that seems to keep me somewhat okay. I found that Zantac seemed to work better for me then the Pepcid - but for sure the Allegra was better then Claritin. So, you may have to play around with it - to get it right for you. Hope it works well for you. Since the GastroCrom works on the immune system - that may be why it's helping us. Did he determine if you have any autoimmune issues going on? Issie Quote Link to comment Share on other sites More sharing options...
brethor9 Posted May 16, 2013 Report Share Posted May 16, 2013 I was never classified as "hyper" but have very high catecholamines on testing......I also have MCAS and just recently diagnosed through biopsy with EDS....was interesting to find out that my EDS specialist believes that it is the EDS causing most of my mast cell issues and autonomic dysfunction and not the other way around. Like Issie, I have also benefited some from the MCAS protocol but I am not completely recovered and I suspect that is where the EDS comes into play.... it is a real chicken and egg sort of thing.....good luck hope you find some relief Bren Quote Link to comment Share on other sites More sharing options...
Aimes Posted May 16, 2013 Author Report Share Posted May 16, 2013 Thanks for the replies ladies! I'm hoping these meds will give me some relief, especially from the nausea! I'm going to start them Saturday. Bren, I understand about the chicken and egg thing. When my POTS was really bad as a teen, my joints were terrible. They easily dislocated and were painful. Then everything calmed down and I had NO joint problems at all! Now, with this flare I'm having trouble with my knees and hips and arthritis in my hands. It's all connected somehow but I can't decide what causes what. My uneducated guess would be an autoimmune issue that impacts the connective tissue, but who knows? On the catecholamine test, my norepinephrine was 145 supine and 536 standing. Not even close to Hyper POTS criteria. That's why I'm a little baffled. I have all the symptoms with major adrenalin surges and high BP during episodes, but don't classify as Hyper. Quote Link to comment Share on other sites More sharing options...
Chaos Posted May 17, 2013 Report Share Posted May 17, 2013 Aimees- I see Dr. Goodman too and like you don't always feel like I quite fit into any one category, but kind of have symptoms from all categories. Ugh! Didn't test as hyper at Cleveland Clinic but did at Mayo. Tested as neuropathic both places and then Goodman added "with a possible hyper component". Also have the EDS thing thrown in there too. I have a lot of MCAS symptoms as well so have been doing the cocktail thing since last fall. Still not totally sure it's helping but have had enough symptom relief that it's been worth sticking with it for now. Hope it gives you some relief! Good luck! Quote Link to comment Share on other sites More sharing options...
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