Hey @jwiegers17. Still searching!
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Hi @altius1300. I too have a hiatal hernia. I've noticed that many people who have this SOB/air hunger also have GI issues. Not sure of the relationship, but there could be something there. My breathing has improved a bit through daily breathing Buteyko exercises (minimal) and moderate weight lifting and a daily walk. Definitely not 100%, and I do struggle with it at times, also due to constant sinus inflammation, but it is quite a bit better over the last couple of years. Still trying to get it better, but it seems to be stagnant at this point; manageable but still there.
Here is the link with cost info: https://www.learnbuteykoonline.net/beginner-workshops
Hi @jwiegers17. First, sorry to hear that you’re going through this. I did Buteyko breathing exercises just online and it was very effective. I didn’t keep up with it when I got better, and so it go worse again about 2 years ago. So while it’s not 100% better, it is greatly improved and I can function pretty normally. I would suggest you try it.
Hey @metonya, interesting that you too have GERD and a hiatal hernia. It may not be the hernia pushing against the lungs but could be acid. There are quite a few people who have the same gastro issues so there has to be some correlation or cause that isn’t quite apparent.
@steveso Thanks for sharing your experience. It's very difficult, but one thing I wanted to to discourage you from is saying that 'nothing will help.' Though we haven't found a cure yet, I'm confident that there's an answer out there somewhere, we just haven't found it yet. 🙂 It's difficult to have the positive mentality when we've been suffering for so long, but I feel like having hope and knowing that there is an answer keeps us going and always gives us hope. So don't lose hope my friend! There is an answer. I think being positive about it contributes to feeling a bit better and eases the suffering a bit; we just have to be persistent!
@fourof5zs Thanks for the post and letting us know your cause. I have always suspected my hiatal hernia to be the direct cause of my SOB, but have never had that medically confirmed. Back in 2012 it was a "slight" hiatal hernia, so doctors couldn't conclude that it caused it, but I still have a sneaking suspicious it has something to do with it.
Hi @criley2k. First of all, I'm so sorry that you have been dealing with this for so long. I know how you feel! It's been 7 years for me since it all began. I find it strange that your muscles are weak from the breathing condition. I wonder if there is something else going on that's causing all of this (breathing + muscle weakness). With all of the doctors you've seen, I assume they've done a bunch of tests that show everything normal.
My respiration has not reset to normal, but it has been somewhat stable for the past 2 years or so. I still struggle with the air hunger, but it's not as bad it was when it started. I do moderate daily exercise which includes about a 2 mile walk and then moderate weight lifting. These seem to help keep it stable. I also do "maintenance" Buteyko exercises about every other day (I do Steps in the morning). I have stopped measuring my CP because, like you, I couldn't really get it up and keep it that way. So I just make sure I can do 90 – 100 steps and if it gets to where I can do 90 and no more, I increase frequency to daily and that seems to get the Steps score up to around 100 after a few days. So that's how I maintain Buteyko. It doesn't help enough for me to do it daily or more than once per day. It provided great relief in the beginning, but like you experienced, it has since provided diminishing returns.
I am able to do pretty much everything normal – I can function at work just fine with not much thought to my breathing. Sleeping is hit or miss; some nights I can sleep just fine in my bed and others I struggle to breathe so I have to sleep sitting up on the couch. I can do my walking just fine, but weightlifting I'm limited by my air hunger. The harder I push, the stronger the air hunger so I can't push too hard when I do exercise. Cardio is pretty much out. Every now and then I'll do a very light jog if I can handle it, but I use my breathing as a gauge. I don't push it too hard like I used to. That seems to make it worse.
So now, I'm not even sure that it's "hyperventilation". I really feel like I don't hyperventilate. In observing my own breathing, it is very normal. It's just that the air hunger starts to creep in after a few breaths, regardless of how fast or slow I'm breathing. So something, in my opinion, is causing this feeling of persistent air hunger that nobody can put their finger on. My hunch is that it could be gastro related. Many of us on this forum seem to have some sort of GI issues. Though correlation does not equal causation, I can't ignore the number of people that have what we have also have GI issues.
So that's where I am today. It's tolerable and stable, but still a bit uncomfortable. It's been this way for a couple of years. Your natural remedies are very interesting. Same thing happened to me when I took vitamin B12 and iron, as I'm sure you read in the OP. Don't know why it would've helped for a short while, then come right back.
Keep in touch, I'd like to know of any progress and I'll share any of mine as I continue to search for answers.