abnel Posted September 10, 2011 Report Share Posted September 10, 2011 I had a nasty infection that started 6 weeks ago and which lasted for 3 weeks with complications that landed me in hospital several times, triggering my latest breathing "crisis".Out of desperation I have been experimenting with small doses of over the counter Mast Cell meds to see if my breathing issues could somehow be linked to overactive mast cells, not simply "idiopathic" POTS. Previously nothing has worked, (ie, asthma inhalers), and all my pulmonory workups have been normal. I got tired of being sent away by doctors and being told I simply have a sensitive response to the "sensation" of shortness of breath, in other words, we can't find anything wrong with your lungs so it must be in your head.So I bought some over the counter stuff, Claratyne and Zantac. I did my research and I contacted a MCAD specialist who very kindly gave me some tips. I started taking these meds last Monday and I don't know if it's coincidence, but my breathing has definitely improved of late, although it's still not great. My respiratory specialist suprised me the other day by taking what I said about MCAD seriously and prescribing Intal Inhaler (Sodium Cromoglycate) which is a mast cell stabiliser. I took it today and it made my breathing much worse, almost back to square one again. I discovered that the inactive ingredients in this inhaler are providone, macrogol 600, and 1,1,1,2,3,3,3-heptafluoropropane; something that's used to extinguish fires! That kind of freaked me out.I have wondered whether I should perservere with it or whether I had an allergic reaction to it. I still don't understand my "POTS" body that well even after 2 years when symptoms keep changing on me so much. I think I read somewhere about mast cells sometimes being stirred up in the first few weeks of taking new meds, but then settling down after a while. Has this been the case for any of you? Has anyone ever taken Intal/Sodium Cromoglycate and had a bad reaction to it?Would love to hear your stories and/or advice. Quote Link to comment Share on other sites More sharing options...
juliegee Posted September 10, 2011 Report Share Posted September 10, 2011 Hey Lotusflower-Yeah, finding meds that work is tricky business. Cromolyn sodium is a mast cell stabilizer. The fact that it worsened your symptoms would lead me to believe it is not for you. I don't take a mast cell stabilizer as I can control symptoms without one. I also had (and sometimes still do) that ache in my chest- especially when I breath in. I have also had to experiment to find what works. Albuterol and Xopenex made it worse for me. But, Atrovent through an inhaled nebulizer seems to help. I find the most help with daily zyrtec, ranitidine, SINGULAIR, and atarax. Within 10 mins of taking the singulair, my chest automatically loosens up. Hope you find a regimen that works Julie Quote Link to comment Share on other sites More sharing options...
iheartcats Posted September 10, 2011 Report Share Posted September 10, 2011 In part to Mack's Mom, I am now on Singulair and it's really, really, really helping. I don't know if I have MCAD...but I do have horrible allergies to pollens, dust mites, etc. and you just can't avoid those unless you live in a bubble.My coughing has lessened about 90%, I can breath better, I feel better. I am so happy I tried that and I hate trying new meds. Thanks, Mack's Mom! Quote Link to comment Share on other sites More sharing options...
abnel Posted September 10, 2011 Author Report Share Posted September 10, 2011 Thanks for your responses. I mentioned Singulair to my pulmonory doctor but he told me it is only available to children in my country (Australia) and because it's not on the PBS scheme it costs $90, so he didn't want to prescribe it. But I've heard good things about it from you and on other forums so it sounds like it is worth a try, even at that cost. Quote Link to comment Share on other sites More sharing options...
abnel Posted September 10, 2011 Author Report Share Posted September 10, 2011 ...and Mack's Mom, it's really good to see you back! Sorry to hear about your ordeal over Summer but glad to hear things are going okay now. Quote Link to comment Share on other sites More sharing options...
cnm1 Posted September 11, 2011 Report Share Posted September 11, 2011 Hi I want to add a thank you Mack's mom as well. The information you provided, MD names, etc have all made a huge difference for my daughter. She got sick 10 yrs ago this month (right after 9/11). I can't believe how far she has come.Louise Quote Link to comment Share on other sites More sharing options...
juliegee Posted September 12, 2011 Report Share Posted September 12, 2011 I'm so pleased to hear that anything I've said has helped. In my tiny pea brain, I can find NO reason that God would strike my family with this awful illness- other than He want's me to share what little I've learned to help others similarly affected.I have learned so much from others here & am eternally grateful Hugs-Julie Quote Link to comment Share on other sites More sharing options...
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