Mysterious shortness of breath: What has helped you?

Posted by Gabe, Volunteer Mentor @gabrielm, May 31, 2018

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.

Interested in more discussions like this? Go to the Lung Health Support Group.

@seniordon09

My shortness of breath happened after the left side of my diaphragm paralyzed !
My breathing is becoming worse and worse every day !
My lungs and heart is OK according to my doctors !
Does anyone know of a doctor in Oklahoma that specializes in the function of the diaphragm ?
Thanks

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Hi @seniordon09, I'm sorry you've been going through this. Are you aware of anything that caused part of your diaphragm to become paralyzed?

While you're searching for a doctor where you are, I think it might be worth it to do some diaphragm strengthening exercises, as shown here; https://www.youtube.com/watch?v=L4YhrMgUzqc

Of course, do them to your own pace and ability, but at least starting to strengthen it and get it moving may help expand your breathing

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@sharkparty

Has anyone had the unfulfilling breaths and feel like you're waiting for the episode to 'shake' out? I have episodes that last anywhere from a few seconds to several minutes and trying to catch that real breath. I have to stand and block out all external stimuli to focus. My head sometimes needs to go side to side and the episodes always conclude with my head shaking rapidly as if I had just shivered-but only my head. The episodes Never resolve without the shaking.

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@sharkparty, I think many here are experiencing something similar to what you're describing. Are you able to catch the deep breath every so often? I haven't heard what you're describing with the head movements, but maybe that might be something else. Does it happening when yawning, or just in general? Is the shaking involuntary?

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@gabrielm

@sharkparty, I think many here are experiencing something similar to what you're describing. Are you able to catch the deep breath every so often? I haven't heard what you're describing with the head movements, but maybe that might be something else. Does it happening when yawning, or just in general? Is the shaking involuntary?

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Hi Gabe.

I’m sure you’ve shared this in the past, but would you mind re-posting where I can find a good Buteyko breathing exercise? Thank you!

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@phinbar21

Hi Gabe.

I’m sure you’ve shared this in the past, but would you mind re-posting where I can find a good Buteyko breathing exercise? Thank you!

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Sure! There are a few different resources. There are books written by Patrick McKeown that go into detail on how to implement aspects of the Buteyko method.

You can also take a look at learnbuteykoonline.net. That's where I learned the method.

Here's an intro video by Patrick McKeown on the method as well; https://www.youtube.com/watch?v=W2-40vaODrw

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@phinbar21

This is hopeful. I always check this thread to see if there have been any convincing cures to this issue. I recently saw the ENT for LPR, but it doesn’t seem to be going anywhere. I have chronic air hunger now for 15 months. It started out of nowhere and just persists. I am 43 and otherwise in excellent health.

I do have a question though: what type of workup did the cardiologist do? And how did (s)he find ulcers? I would have thought an ulcer is something that a gastroenterologist would find since it’s in the GI system.

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The cardiologist did a full work up on my heart to include a nuclear stress test, CAT scan, and sonogram. But at the first visit, based on all of my symptoms (to include the breathing issues) he suspected an ulcer and told me to start taking the sucralfate immediately. He said that an ulcer in the "right" place will make it feel just like your heart is fluttering...

And yes, before I ended going to the cardiologist, I went to a gastrologist and scheduled an endoscopy and colonoscopy. I did explain my symptoms to the Dr., and he said "an ulcer can cause that"... then he got called out of the room and I didn't see him again... he didn't give me any medicine. I was scheduled for the procedures 6 weeks later. two days before, the procedure it got canceled due to lack of nurses due to covid. When I did finally get the endoscopy, I had been on the sucralfate for a month and was feeling great. The gastrologist did see a couple suspect spots and did biopsies and they came back fine...

So to your point, yes... My GI Dr. suspected, and even stated that my symptoms could be caused by an ulcer, but wasn't thorough enough to follow through with treatment. The nurse practitioner came in after he left and gave me the standard ulcer speech... "if you see dark tar like stool... get to the hospital immediately", but gave me nothing to treat it.

The main point that I want to communicate here is that I have experienced "air hunger"/false dyspnea, on-and-off for years.... at times it has been severe. I now suspect that I have had ulcers that came and went with the symptoms. This last bout was just worse than I had ever had before and luckily it landed me in a good cardiologist's office that was interested in looking at the whole picture.... and I am in no way saying that ulcers are causing your breathing problems... I just note that there are articles/discussions here on this mayo site that link false dyspnea (i.e. air hunger) with GI problems, and so far that seems to have been the case with me. Good Luck

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i’ve dealt with this now for two years off and on, anyone with ideas?

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Hi Gabrielm. I was so happy I stumbled upon your post , because I have the exact same symptoms and have for years. I was beginning to think I was losing my mind! Anyone who has not experienced air hunger like this can't truly imagine how awful it is. I will say that I do have GERD, however the last doctor I saw related it somehow to taking adderall and not getting enough sleep while taking it. I am not sure how he came up with that, but said the alveoli were collapsing before refilling , or something like that . I will continue to follow the posts to see if anyone else has any similar experiences.

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Hey. I wanted to ask how you’ve been doing. I have the same problem. It started in 2021.. around the time I got my vaccine so I thought maybe it’s somehow related but I don’t think it is. I have tested my heart and took an xray of lungs.. there was nothing. What I have in common with you is that I also have GERD (who doesn’t these days) and I was also diagnosed with fatty liver a while back. Now I’m left with this mysterious sob.. I don’t know how to fix it and honestly it’s effecting my mental health as well. Please tell me you’ve found a solution to this. You are way ahead of me

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I read somewhere recently that it might help to avoid worrying so much about how we breath. I was diagnosed a year ago with pulmonary fibrosis (scarring of the lungs) and since then have read several books about breathing. My biggest problem has been coughing. I was coughing almost all the time for a long time but my coughing has dropped off a lot thanks, I think, to taking antibiotics when I came down twice with bronchetes in the past year. With chronic coughing I sometimes felt like I was running out of breath and got panicky, especially at night when I lay down to sleep. I did find that occupying my mind with reading, TV, walking and playing golf helped take my mind off my breathing and even coughing. Hope this helps.

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@marjz

Hey. I wanted to ask how you’ve been doing. I have the same problem. It started in 2021.. around the time I got my vaccine so I thought maybe it’s somehow related but I don’t think it is. I have tested my heart and took an xray of lungs.. there was nothing. What I have in common with you is that I also have GERD (who doesn’t these days) and I was also diagnosed with fatty liver a while back. Now I’m left with this mysterious sob.. I don’t know how to fix it and honestly it’s effecting my mental health as well. Please tell me you’ve found a solution to this. You are way ahead of me

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Hi marzj.

I’ve been reluctant to share that my air hunger issue started a week after my vaccine. When I saw your post, I figured I’d throw it out there. Coincidentally I also got the shingles, so I’m not sure if any of these things were related.

I have GERD (or LPR, not fully sure) and what has helped for me has been first learning that I have low stomach acid, and then taking Betaine HCL. It’s reduced my air hunger issue a bit.

I’ve also found the Buteyko breathing helpful for managing the symptoms. I am thankful Gabe recommended this.

So, it’s not gone away for me, but it’s becoming less distracting and more manageable.

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