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.

@stlsampsondev

Just curious - you said they ruled out asthma, but did they do a Methacholine Challenge Test to double check? For years they told me I just had GERD even though I coughed all the time. After years a doctor finally did that test and turns out I have severe asthma - that might not be your case but worth asking your doctor about if you have not done one.

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Hi @stlsampsondev. No I have not had that particular test done. Never heard of it until now that you brought it up but something to look into! Thank you for the suggestion.

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Ive been getting shortness of breath randomly usually every day for 4 months now that also gets relieved briefly with a long deep breath. Its also accompanied by usually dull pressure like pain on my chest in different places but can sometimes be sharp pain. Its never there when im sleeping and if I wake up during the night it seems to only arrive in the morning either after I wake up or after breakfast. I went to my GP a few weeks ago about it and he checked my chest and lungs and said they seemed fine and thinks its GERD. Im still not sure about it but probably going to get tests done to be sure about it but any thoughts?

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@tysuuuu

Ive been getting shortness of breath randomly usually every day for 4 months now that also gets relieved briefly with a long deep breath. Its also accompanied by usually dull pressure like pain on my chest in different places but can sometimes be sharp pain. Its never there when im sleeping and if I wake up during the night it seems to only arrive in the morning either after I wake up or after breakfast. I went to my GP a few weeks ago about it and he checked my chest and lungs and said they seemed fine and thinks its GERD. Im still not sure about it but probably going to get tests done to be sure about it but any thoughts?

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I would definitely recommend further testing, did your Doctor do a Chest Scan? I was experiencing shortness of breath and my Doctor ordered a Chest Scan which showed that I had scarring on my lungs. Once you have scarring of the lungs, the damage can’t be reversed, and you need to stop the progression. After further testing I was diagnosed with Dermatomyositis and interstitial lung disease. So please get more testing, I was having shortness of breath for about four month before I went to my doctor. I wished I hadn’t waited so long. Good luck! Kathryn

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@kathrynmc

I would definitely recommend further testing, did your Doctor do a Chest Scan? I was experiencing shortness of breath and my Doctor ordered a Chest Scan which showed that I had scarring on my lungs. Once you have scarring of the lungs, the damage can’t be reversed, and you need to stop the progression. After further testing I was diagnosed with Dermatomyositis and interstitial lung disease. So please get more testing, I was having shortness of breath for about four month before I went to my doctor. I wished I hadn’t waited so long. Good luck! Kathryn

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No chest scan, just a quick look over with the stethoscope. I'm definitely going to get more scans though, just to put my mind at ease at least. Regarding the shortness of breath, did yours occur even during exercise? For me it seems like mine only is there while im sitting around or at rest and when I exercise its pretty much fine. Did you have any other symptoms too?

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@tysuuuu

No chest scan, just a quick look over with the stethoscope. I'm definitely going to get more scans though, just to put my mind at ease at least. Regarding the shortness of breath, did yours occur even during exercise? For me it seems like mine only is there while im sitting around or at rest and when I exercise its pretty much fine. Did you have any other symptoms too?

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My shortness of breath occurred only with exertion such as exercise, walking uphill, going up stairs. It did not happen while I was resting. I had all the classic symptoms of Dermatomyositis, skin rash, muscle weakness, and ILD. Hopefully you don’t have Dermatomyositis, there are so many things that can cause shortness of breath. I would just continue to look for answers so you can get the proper diagnosis. Kathryn

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@kathrynmc

My shortness of breath occurred only with exertion such as exercise, walking uphill, going up stairs. It did not happen while I was resting. I had all the classic symptoms of Dermatomyositis, skin rash, muscle weakness, and ILD. Hopefully you don’t have Dermatomyositis, there are so many things that can cause shortness of breath. I would just continue to look for answers so you can get the proper diagnosis. Kathryn

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Yeh mine seems to be the opposite to you there, I don't have a rash or muscle weakness either so doubt its that. Thank you though for replying, appreciate it. Hope you are well.

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@gabrielm

Hi @stlsampsondev. No I have not had that particular test done. Never heard of it until now that you brought it up but something to look into! Thank you for the suggestion.

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Hi Gabriel, have you had new test for your larynx, stomach and nerves?

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Hi, I stumbled upon your post while searching for an explanation to my own breathing problems, which sound very similar to yours.
Nevertheless, in the past three years I have had almost no problems with breathing (until now, which is why I'm out here scouring the web for answers).

I am super fed up with this, and I don't want to have to go through this forever, so would love to compare and see if we can find similarities and share our findings and hopefully figure out how to make it better.

I have had them periodically since I was about 13, and I am 26 now. For most of this time they have come for a period of 1-4 weeks, about 3 times a year, but it varies, and the past three years they have been almost gone.

I was always told that it had to be something psychological, since the doctors could not find any answers when testing lungs, blood, etc. But I have never really known what to do with that information, as I can't really figure out how I am stressed, or see any correlation with my breathing problems and levels of stress, after having mapped the occurrences of breathing problems and my level of stress etc over many years. I feel psychologically pretty fine and robust really.

I have tried mapping out what has changed in my life, to see what made it change. Here are what has changed in the period with almost no breathing problems:
-I have started rock climbing a lot, and gotten pretty strong, and not long after I began climbing and strength training regularly the breathing problems got a lot less frequent, to the point where I almost forgot how much I struggled with it earlier.
-I used to suffer from a lot of backpain, since I have scoliosis (s shaped spine). This also got a lot better when I started climbing. The shape/degree of bent is still the same, but it hurts so much less now.
- I also went through architecture school, which was crazy stressful, but fun.

All of this has made me suspect that the way my back/ribcage/shoulders are doing could affect my breathing, since it all got better when I started getting strong and moving a lot in different ways.
It also got me even more confused about the idea that there is a psychological explanation, as it has been better than ever during a super stressful period in my life.

Has any of you had any problems with your back/ribs/scelet/muscles that correlates with your breathing?

It's just the best theory I have right now to explain my excessive gasping for air, but I am super open to other ideas 🙂

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Hi! Your theory about the breathing issues being related to back or rib problems is interesting. I say this because I deal with upper back pain on a daily basis, and when the pain is worse, so is my breathing. Today, for example, I feel so much pain and tension from sleeping poorly, and I’m having a much more difficult time with my breathing than usual. I am in physical therapy for back and shoulder pain, and although the pain hasn't changed much, I do feel that stretching and strengthening the muscles help the breathing a little. It’s also worth mentioning that I’ve been to two chiropractors, but the breathing issue persisted despite several visits.
Also, I sometimes feel some crunching in the area of my ribcage when I move a particular way. This seems strange to me, but my physical therapist didn’t seem too concerned about it, so I’m not quite too sure what to make of that.
Like you, all blood tests and lung function tests came back normal. I also visited a cardiologist and have a follow-up appointment this Wednesday (EKG and stress test were performed). SOB is worse upon exertion, but it’s generally present all the time (even at rest), and some days are better than others.
Because all medical exams have been normal thus far, doctors attribute the SOB to anxiety. To be fair, I am in grad school trying to finish my dissertation, but this breathing issue was present prior to beginning the dissertation process. And back then, the SOB would appear only occasionally (every couple of months or so) and would only get worse when I would go on runs.

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@bodil

Hi, I stumbled upon your post while searching for an explanation to my own breathing problems, which sound very similar to yours.
Nevertheless, in the past three years I have had almost no problems with breathing (until now, which is why I'm out here scouring the web for answers).

I am super fed up with this, and I don't want to have to go through this forever, so would love to compare and see if we can find similarities and share our findings and hopefully figure out how to make it better.

I have had them periodically since I was about 13, and I am 26 now. For most of this time they have come for a period of 1-4 weeks, about 3 times a year, but it varies, and the past three years they have been almost gone.

I was always told that it had to be something psychological, since the doctors could not find any answers when testing lungs, blood, etc. But I have never really known what to do with that information, as I can't really figure out how I am stressed, or see any correlation with my breathing problems and levels of stress, after having mapped the occurrences of breathing problems and my level of stress etc over many years. I feel psychologically pretty fine and robust really.

I have tried mapping out what has changed in my life, to see what made it change. Here are what has changed in the period with almost no breathing problems:
-I have started rock climbing a lot, and gotten pretty strong, and not long after I began climbing and strength training regularly the breathing problems got a lot less frequent, to the point where I almost forgot how much I struggled with it earlier.
-I used to suffer from a lot of backpain, since I have scoliosis (s shaped spine). This also got a lot better when I started climbing. The shape/degree of bent is still the same, but it hurts so much less now.
- I also went through architecture school, which was crazy stressful, but fun.

All of this has made me suspect that the way my back/ribcage/shoulders are doing could affect my breathing, since it all got better when I started getting strong and moving a lot in different ways.
It also got me even more confused about the idea that there is a psychological explanation, as it has been better than ever during a super stressful period in my life.

Has any of you had any problems with your back/ribs/scelet/muscles that correlates with your breathing?

It's just the best theory I have right now to explain my excessive gasping for air, but I am super open to other ideas 🙂

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Hi! I meant to reply to your comment but not sure if I did. If not, the most recent comment right above yours was meant for you!

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