Mysterious shortness of breath: What has helped you?
I will try to make this as short as possible, but this has been going on for over 5 years, so it might be farily long.
Beginning in summer of 2012, I began having shortness of breath (SOB) with no other symptoms. I felt a constant need to yawn, and every few breaths wouldn't satisfy the SOB. I would take a deep breath, and felt like it would get "stuck" before satisfying the air hunger feeling. About every 3-5 deep breaths would satisfy it, only for it to return a minute later.
I got an endoscopy and other tests done, which revealed that I had some esophageal erosion due to acid reflux and a slight hiatal hernia and was diagnosed with GERD. I had always have bad heartburn, so I was prescribed with Prilosec, which I have been taking daily since them. I've tried stopping it a few times but the reflux always comes back a lot worse.
Lung tests and x-rays were normal. Heart tests normal. Blood test revealed a slight anemia but otherwise pretty normal.
I did some research reading forums where someone suggested taking vitamin B-12. Strangely, I took it and the SOB disappeared almost instantly. However, it only lasted a few days for it to return just as bad. I then started taking an iron supplement, which again made the SOB disappear quickly- same thing; symptom returned days later.
After further research, I came across a breathing exercise method called the Buteyko method. Essentially you do a lot of breath holding to build up CO2 and reduce breathing as the theory is that I had chronic hyperventilation causing too much CO2 to exit my body. After applying the method and reducing my breathing, the SOB disappeared after only 2 days and I felt completely normal. I continued the method a few more days then no longer felt the need to pursue the exercises. I was normal for a whole year when the SOB once again returned with some chest tightness. I applied the method again and the symptom went away, this time with a little more effort; after about 3 weeks. I included physical exercise which also helped with my breathing.
After that, I was normal for about 2 years. I mistakenly stopped or at least slowed down exercise and the SOB returned once again. I applied the method and began running for exercise but the SOB kept getting worse. It got so bad, I had multiple panic attacks and the feeling of completely empty lungs with the inability to satisfy it with deep breaths. I had to stop exercise altogether, apply the Buteyko method and do breathing exercises very carefully with very light and slow exercise. This helped, but it took many weeks for the SOB to improve. Then, it was almost normal when over a year ago as I was running, I couldn't get a deep breath to satisfy exercise-induced SOB. I have had SOB continuously since then (a year and a half).
I once again started doing breathing exercises and slowly building up physical exercise, but I can't do any prolonged cardio activity because the SOB gets to a point where deep breathing will not satisfy it. While the breathing exercises have helped, they have had very little effect compared to previous efforts. It seems that every time the symptom returned, greater effort yields few results.
I suspect there is something, some underlying cause that is causing the SOB that has alluded me this entire time.
So for the past few months to a year, the SOB is worse on some days, better on others, but never gone. There's no rhyme or reason or pattern for it. It's just there, sometimes affecting my sleep. I sometimes can't get a deep breath to satisfy it every now and then, but for the most part, a big gulp of air will satisfy it. But it returns seconds to minutes later. It's as though every breath doesn't deliver what it's supposed to, the SOB builds up, and then I have to take a big gulp of air to get rid of the feeling, pattern repeats. My breathing pattern is normal, however. I don't feel like anything physical is happening, but sometimes it feels like my airways and nostrils are slightly inflamed due to allergies, but when I don't feel inflammation the SOB is still there.
Recent lung function tests show normal- I don't have asthma, or any other problems with my lungs. Heart tests are normal though I did have about a two week bout of heart palpitations which came and went. Haven't had any for a while- it just mysteriously started happening then stopped. Blood tests are normal, though tests always show a slight elevation of biliruben which my doc thinks is Gilbert's disease.
I don't have sleep apnea (normal test), bloody oxygenation is normal, heart rate normal.
I recently saw local naturopath (since mainstream docs aren't able to help) who immediately suspected a liver problem when I described my SOB, possibly liver inflammation. He used an electrodermal testing machine to test his theory which did seem to show a problem with my liver and gallbladder. He gave me digestive enzymes and a gallbladder formula to help clear a bile duct clog, thus reducing liver inflammation. He also determined with the machine that I have an egg sensitivity so I've been avoiding eggs.
Been taking this and avoiding eggs for a couple of months, but there has been no noticeable improvement. Everything else is normal. Emotionally I'm normal- no anxiety, depression, etc. The SOB seems to be the only symptom of something, but always comes back worse, until a year and half ago when it came back and has remained since. I feel like I shouldn't have to do breath holding exercises every day just to maintain my breathing well enough to do every day things.
Does anyone have any idea of a possible underlying cause?
2021/2022 UPDATE:
Since my original post about 3-1/2 years ago, a lot has happened, so I’d like to update the post to share with others who come across this what I’ve done since then.
I have maintained a weekly Buteyko method breathing exercise regimen where I do a few of these breathing exercises 3-4 times a week in the morning. This, in combination with daily light to moderate exercise (specifically weight lifting, with 1 or 2 days a week of walking and light jogging), I feel has kept the air hunger symptoms tolerable and manageable. I have mostly good days with some not-so-good days, but doing a breathing exercise and knowing that it’ll get better again helps me get through those times.
I also have sinus inflammation which can exacerbate the symptoms, but I’ve also managed this, which in turn reduces the severity of the air hunger symptoms.
So, while I haven’t found a cure nor is the problem completely gone, I have been able to maintain normalcy in daily life and manage the symptoms through the strategies I described.
This discussion remains active, alive and well through the comments section where others who have similar symptoms have shared what has helped them as well as suggestions for possible solutions to explore.
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Sorry I just wanted to add also with my sleeping, it can be worse when I lye down (sometimes) I need to sit up and move my arms around, sort of stretch my arms out and this helps. It’s almost like I feel winded when I lye down!
Hmm that's interesting that it gets better when you're away from the city. While that fact alone might not give you the answer as to what might be going on, it can definitely be a clue, and clues are good! So you might be on to something, especially with regard to stress or pollution. I don't know much about London but if it's like any big city in America, there could be some degree of pollution and people have different sensitivities to the air around them.
Have you tried any remedies for possible stress, e.g. breathing exercises, taking walks, exercise, etc.?
I hear you. It's frustrating when you're hoping some remedy is the solution and it turns out not to be. Definitely frustrating!
I'm not sure how long you've stuck with the various things you've tried but I will say that for me, when I first did Buteyko, it made the symptoms completely disappear within a few days. However, I treated it like a bandaid and after a while the air hunger returned, so I did Buteyko breathing again and symptoms reduced once again. Through this, I learned that more than a quick fix or bandaid, it's a longer-term, habit changing solution. So that's how I treat it now- I maintain nasal breathing at all times, even during exercises, and still do some of the Buteyko exercises, and overall I think it's helped me better control my breathing and symptoms. So just something to consider- it might be worth it to give it more time and take a 'holistic' approach.
You might also want to ask your doctor about possible vocal cord dysfunction, which can also affect breathing.
Did you also look into any lung function tests, bloodwork to detect any nutrient deficiencies, etc.?
Yes all of the above. And yes this does help in general to manage these conditions. Maybe in years to come pollution will be identified as a contributing factor to a number of modern day conditions. In London efforts are being made to reduce vehicle pollution. Time will tell if this has some impact? For future generations I hope it will help.
I certainly hope so. Have you considered getting an air purifier/cleaner? I know those help people with allergies and might help any indoors impure air. Obviously outside is different, but at least having a break from that and being in clean air might help.
Hi. I wanted to reach out because I have experienced almost exactly the same thing for the last 7 months. Is there anyway you would be interested in connecting and talking about it with me? Thanks
Hi. I have the same symptoms as well. Just wondering how are you doing? Any changes? I would love to connect and talk about it if you are up for it.
I have the same issue. I was just diagnosed with Tracheobronchomalacia. It is where your trachea and bronchi collapses when you go through the expiration phase. It takes forever to rule out every thing else before they check that because it is so rare. May want to mention to your pulmonologist.
I am having same issue. Was told in 2018 that I was just below 50% trachea collapse and could not diagnose with tracheobroncholamachia yet. That was at National Jewish Health in 2018. Since then everyone I have asked about it just ignores me. My PFTs show a blockage slowly gettinb worse but because CT looks normal they just keep ignoring. My Rheumatologist said a CT is not the right test to see it and have to go in and actually look at it, but no one wants to acknowledge the problem could be trachea collapsing and order what needs to be done. Meanwhile my O2 levels on pulse ox now dip into high 80’s.
Hi @hlth, glad you reached out. Absolutely interested in talking about it. When did you notice this breathing issue start coming on?