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.

Hi all,
I’m a new member and I’m just checking in to say hello. I have been dealing with SOB mainly at rest for many, many years. Since ‘04 in fact. I did have asthma as a child and foolishly smoked socially from the age of 17 to 32 or so. I have a “simple chronic bronchitis” which today had mostly burned out as I never cough or have much phlegm any more. My FEV1 is over 100% as in my FVC and I have a clear CT although further testing is being lined up. I have no gastro or heart issues. My tolerance for excercise is excellent but I do find myself with disabling breathlessness during those quiet periods in my life. There could obviously a significant anxiety element which I’m addressing with an SSRI and breathing techniques. I have tried the Buteyko excercises with limited success in the past so I’ll be revisiting. Anyway good luck all & nice to be here!

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@ck101

Hi all,
I’m a new member and I’m just checking in to say hello. I have been dealing with SOB mainly at rest for many, many years. Since ‘04 in fact. I did have asthma as a child and foolishly smoked socially from the age of 17 to 32 or so. I have a “simple chronic bronchitis” which today had mostly burned out as I never cough or have much phlegm any more. My FEV1 is over 100% as in my FVC and I have a clear CT although further testing is being lined up. I have no gastro or heart issues. My tolerance for excercise is excellent but I do find myself with disabling breathlessness during those quiet periods in my life. There could obviously a significant anxiety element which I’m addressing with an SSRI and breathing techniques. I have tried the Buteyko excercises with limited success in the past so I’ll be revisiting. Anyway good luck all & nice to be here!

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@ck101 , thanks for dropping in and saying hi. Is the SSRI helping? Let us know how it goes with the Buteyko exercises you’re revisiting. I’ve found it to help when I stick with it longer term

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Hi Gabe, i have a question for you.
Please give yourself the time to think about this for a few days as it has been a few years since you have experienced your first feeling of not having satisfaction taking deep breaths..
The question is, do you remember before you first had experienced this type of shortness of breath did you happened to fall on your back (at the hight of the shoulderblade)?
The fall could have even occurred months before you have experienced "SOB".
Think about it.

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Hi Gabe and everyone else suffering from the same type of breathing issues.
I wanted to add to my previous comment that it does not necessarily have to have been a fall on the shoulderblade/ribcage.
The cause could also have been reaching out too far with 1 of your arms.
Like me, sitting in the car while driving trying to get to something at the feet on the passenger seat. That last push to reach it, I felt something in my shoulder so pulled my arm back and everything was okay.
Months later, the SOB popped up.
It was like, when i needed to take a deep breath i did and the volume of air seemed normal and i had no pains or pressure anywhere, but still i couldn't get the satisfaction of a deep breath.
It was like taking half a yawn, so you have to wait consciously for the next yawn to give you that sense of satisfaction.
It came back more frequently until it became constantly.

When i got my first massage of the upper back, i instantly got satisfaction breathing deep while i was still getting massaged.
That's when i knew that all the time it was something as stupid as that.

I needed multiple massages for it and did cupping for the first time in my life and i feel like a newborn, and i hope you guys will too!

My advice is to find someone who has a talent in massaging and knows the human body.
They should focus on your shoulderblades / upper ribcage.
But a gifted masseuse will find it by themselves.
I have had this for months without backpain or anything, i did get some other weird symptoms every now and then.
After all types of tests, and the doctors trying to tell me it's in my head.
It turned out that i had a healer at home lol.

Goodluck, don't forget to let me know how it goes.

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@gabrielm

Hi @jmunderhi, I was diagnosed with GERD 9 years ago. I am treating it with PPIs, which helps with the reflux. Not sure what connection there might be to air hunger but it can be a possible connection as many others with this breathing issue has some sort of reflux issue. Have you gotten blood work done to see you may be deficient in any nutrients? Some nutrient deficiencies may play a part in air hunger.

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Thanks so much for the reply. Is your sob trouble worse with exertion?

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@jmunderhi

Thanks so much for the reply. Is your sob trouble worse with exertion?

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I would say that if I overdo it with exercise, yes it does get worse with that kind of exertion. So I just allow my body to tell me how far to push exertion.

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@gabrielm

Yes @tonyagregg, I'd like to keep in touch with you. Sounds like what you have is pretty similar to me. It's been much worse before, but it's stabled out. Still not gone by any means, but I can at least live with it. Let's stay in touch. Maybe we can tag team our research or let each other know if we find some kind of answers.

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Hey Gabriel! I have the same issue and lifestyle changes does help most time for me. Have you been diagnosed with vocal cord dysfunction? Bring up vocal cord dysfunction with your pulmonologist and see if they can get u in to see ent.

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Hello, I stumbled across your post and it sounds very similar to a problem I have, for which I haven't found a solution. Mine started after a laparoscopic surgery to fix 3 hernias (2 inguinal and 1 umbilical). For the first couple days after the surgery they said that breathing difficulties are normal because of the laparoscopy. But it's been 9 months and my issues have persisted off and on up until now. Chest x-rays and breathing tests have all come back normal. The pulmonologist is now wanting to do a chest CT scan. I too have the same sensation of not being able to get a full breath, as if my breathing is "stuck". I'm eager to find the issue, as I'm sure you all are too.

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@aguy

Hello, I stumbled across your post and it sounds very similar to a problem I have, for which I haven't found a solution. Mine started after a laparoscopic surgery to fix 3 hernias (2 inguinal and 1 umbilical). For the first couple days after the surgery they said that breathing difficulties are normal because of the laparoscopy. But it's been 9 months and my issues have persisted off and on up until now. Chest x-rays and breathing tests have all come back normal. The pulmonologist is now wanting to do a chest CT scan. I too have the same sensation of not being able to get a full breath, as if my breathing is "stuck". I'm eager to find the issue, as I'm sure you all are too.

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Good morning @aguy and welcome to Mayo Clinic Connect. I see that you have recently joined Connect. It's very jarring to expect to breathe easily and find that they can't. Firstly, you aren't in any danger if your lung tests show that your lungs are working properly, at least from your SOB. Shortness of breath—in some very large paraesophageal hernias, the stomach may push on the diaphragm or compress the lungs contributing to a sensation of shortness of breath. There are many other reasons for shortness of breath in addition to a paraesophageal hernia.

Swelling from surgery can last more than a year and cause secondary problems. There might be another cause. Please read this post:

https://connect.mayoclinic.org/discussion/mysterious-shortness-of-breath/?pg=132#comment-203387

Quite a few people in this group complained about this during the first, very scary times of COVID-19. Who wouldn't have been?

Please remember that I am not a medical professional and can only make suggestions, from my own education and experiences.

Does this all make sense to you?

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@ellamarie

Hey Gabriel! I have the same issue and lifestyle changes does help most time for me. Have you been diagnosed with vocal cord dysfunction? Bring up vocal cord dysfunction with your pulmonologist and see if they can get u in to see ent.

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Hi @ellamarie, you know, VCD has been in the back of my mind for a while as a possible thing to look into. It seems there are other symptoms that I don’t have but that doesn’t mean it isn’t a possibly so I’ll probably get tested for it to at least rule it out. Thanks for the reminder lol

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