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Weird Breathing Issues


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So a lot of you know I have the mast cell disease. One problem that I can't seem to wrap my head around that kinda scares me is these weird breathing issues I have. With any kind of physical activity, I get shortness of breath. No wheezing, no panting, it's just a heaviness in my chest almost like I'm not getting enough oxygen when I breathe in. It's nothing anyone can hear, it's something I feel. Maybe even a heaviness with a little burning in my lungs. It definitely get's worse if I run into something that triggers me (chemicals, fragrances, smells, etc.) But I get it just randomly too. And singing or reading books to my son is definitely problematic and it aggravates it. Now the real clencher for me is that I take Singulair 10 mg twice a day and I feel like that should be taking this away. But nope. I still have it. Perhaps not as bad as I used to have it but I definitely still have it too much for taking that amount of medicine.

What's the deal?

Am I taking the wrong meds? I have had 3 chest x-rays and a breathing function test. Nothing showed up.

I asked Dr. Afrin about Churg strauss and he said I didn't have it......now he is an incredibly smart doctor but I just worry about it which I should not be doing.

Any thoughts?

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Hi Jared-

Yes, I have this too from MCAD. Singulair helps dramatically, BUT when I get flare-ups, like you describe, I use atrovent via a nebulizer. Have you ever tried one? Most docs will start you with albueterol. That didn't help me at all, neither did Xopenex, Both caused my HR to beat much faster & I felt shaky. The atrovent takes the heaviness away & normalizes things for me. During rough periods, I have to use it daily.

Hope it helps!


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Hey Jared -

I just wanted to add that last summer, fall and winter I had a lot of trouble breathing like you describe. After many months on MCAD meds and midodrine (and after fighting hard to increase my ability to exercise), my breathing is much better. I think that over time Nalcrom/Gastrocrom may have helped stabilize me on top of just taking the anti-histamines, but I'm not sure. I was just so sick I didn't have the patience or ability to start really slowly on each med and see what happened. I hope that maybe with some time on the meds yours might improve too.

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