Since it's been almost a year since your original post - I'm curious - have you made any progress? I'll have to try the caffeine thing, although my caffeine intake is pretty consistent, so it wouldn't explain the whole good days / bad days thing. Like you, I have been journaling for about a month now and there is honestly no rhyme or reason to it that I can discern. I just went on vacation recently and completely changed almost everything. Diet, activity level, climate, etc. It was the same! I had some good days and some bad days.
It's definitely a really frustrating problem and my heart goes out to all of you in this thread. The only thing that I have found that makes ANY real difference is exercise. On days where my activity level is really high it seems to be a lot less. I'm not sure that it works that way for everyone else, but typically a lot of activity cures my SOB. The problem with this is that I'm a student and I have a desk job, so it's very difficult for me to get a lot of movement in. It can't be quick either, it has to be like 30 minutes of sustained movement. Usually on days where I'm very active, the SOB gives up at some point and I feel better. It doesn't give up without a fight though, it's usually there fighting for a while. On the weekend I jog on the treadmill for about 30 minutes. Sometimes the SOB is annoying during the entire workout, but it's usually better by the end. Other than that, I haven't found any magic pill. I should also note that I've been exercising for years so I doubt that it's just going to "go away" randomly because I was out of shape. I guess it just gets the blood pumping and opens my lungs giving me temporary reprieve.
Anyway, I'll keep trying things and keeping everyone posted. I was hoping the climate change, diet change, the vitamins I started taking, fish oil, meds from the doc, or SOMETHING would yield some serious results I could report back but I've got nothing.
Hi @alureon! I've pretty much eliminated most caffeine save for the occasional soda at a restaurant. Don't seem to notice a difference. But as far as progress- I feel like my breathing has stabilized to where it's manageable. I do still have the SOB and sometimes it's pretty bad but it's usually because of sinus inflammation, which I'm not sure the cause of; maybe allergies, but I've constant sinus inflammation for about a couple of years. Some days it's better than others. So I'm able to get a deep breath most of the time, but I still have that feeling quite frequently. But it is more stable than it was a year ago, so I guess I consider that progress though I'm by no means rid of it.
Exercise also helps me. I believe that is what is keeping it stable and not getting worse. I noticed a few years ago that when I stopped exercising for an extended period of time, SOB came back fierce! I believe exercise helps because of the Bohr effect (look it up), which is basically a better O2/CO2 exchange in your blood because of the CO2 being produced by exercise. That's the premise behind the Buteyko Breathing Method, the method that has also helped stabilize my breathing and improved it.
I took Vitamin B12 and Iron supplements back in 2012 when this all first started. For some reason, right after taking those the breathing problem completely went away but it was short-lived. I was a bit anemic at that time and maybe that's why the supplements helped, but not sure why it didn't make the breathing problem go away completely.
Do keep us posted! Everyone here has been real good about sharing what's worked for them. It's always worth a shot to try what other people are doing. Good luck to you and I pray and hope you find answers and a cure.