Hi @favilavir, I have been able to at least manage this condition for a while now, some days worse than others, but mostly fairly stable.
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Hi @tatianar. Terribly sorry that you're experiencing this, but I think that finding this forum and seeing all the other people who are experiencing similar issues hopefully will give you hope and a sense of community that you're not alone. Back before posting the original post, I thought I might be the only person experiencing this. There are many!
If you haven't already, dig through the comments (it will take time, there are a lot!). I think you will find many potential treatments and things that will at least help you manage this until you find an answer. We're all still searching and when we find one, I know it will be shared in this thread for the benefit of many.
Hi @abidaisl. Sorry you are experiencing this. Never lose hope! There is always hope and as with everyone here, it DOES get better mixed with bad bouts every so often. Hope is the very thing that kept me going when it was bad. If you haven’t already, consider learning the Buteyko breathing method which has helped me greatly. They have something called the “rescue exercise” when the feeling of panic comes on. This is a breath holding technique to help build up CO2 which helps facilitate the exchange of O2 with CO2 which in turn helps quell the panic feeling. This is just one of many tools to have at your disposal when things get bad. Many other people have different ways to dealing with it which also adds to the arsenal of tools. All these things are worth at least trying.
@lidiaboglarka When my dyspnea first started back in 2012, I did research on mineral/vitamin deficiencies as well. So I started taking vitamin B12, which strangely had an immediate effect of clearing the problem very quickly. I could breathe normal again. That went on for probably just a few weeks, maybe a couple of weeks, and then the dyspnea returned and so I started taking an iron supplement. Once again, that helped clear the problem for days, and then it returned. So I don't know why that happened, but any supplements I take now, including magnesium, don't help the problem.
@felicityr That's a good description of what this condition is- we call it shortness of breath, which in reality, I think is more like if you're out of breath or get out of breath quickly. I think probably the most accurate term might be "air hunger" where there's a constant hunger for air that only gets satisfied every few breaths.