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.

@gabe79 You may wish to follow the Post-COVID Recovery expert blog here on Mayo Clinic Connect to read the latest research, videos and more from Mayo clinicians dedicated to post-COVID recovery

– Post-COVID Recovery blog https://connect.mayoclinic.org/blog/post-covid-recovery/

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@gabe79

Thank you Otter2154 for your response and your advice regarding CT scan. You mentioned how the treatment has been successful which is amazing news. Do you mind sharing what the treatment entailed?

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Otter2154, the only difference in our symptoms is that I do not produce phlegm.

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@amandajro

@gabe79 You may wish to follow the Post-COVID Recovery expert blog here on Mayo Clinic Connect to read the latest research, videos and more from Mayo clinicians dedicated to post-COVID recovery

– Post-COVID Recovery blog https://connect.mayoclinic.org/blog/post-covid-recovery/

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Thank you Amanda. I am going to check out the blog.

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@amandajro

Hello @rak and welcome to Mayo Clinic Connect, a community of members who get and give support. It sounds as if you have been doing extensive research to identify what may be behind your symptoms. You mentioned the timing of your symptoms starting and I wonder if you think it was a result of COVID?

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Hi @amandajro . the syntpoms of SOB occurred in early April. I am a ft single father and the ER said i could not come in with her. My backup caretaker is my 77 year old father and at time i thought it was covid. But i was never able to get tested. Later on i took serology for antibodies and it was negative. It is year now and i still have daily problems. I wish i knew if it was Covid. But unforrunately i do not think i will know. So having to explore other issues and rule them out. Gerd and HH are diagnosed. But i never had any problems prior to Mar.

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@gabe79

Thank you Otter2154 for your response and your advice regarding CT scan. You mentioned how the treatment has been successful which is amazing news. Do you mind sharing what the treatment entailed?

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Sure. Pulmo put me on Symbicort (2 puffs, twice daily), and Singulair (one pill before bed). Additionally, I’ve been doing my own deep breathing exercises with a 40lb. resistance band ... plus lots of stretching ... these have helped me greatly. And I’ve been riding my bike and getting much general exercise. As the moderator also mentioned, I’m not ruling out having had a bad run with Covid back in Nov/Dec that has resulted in some slow-to-heal lung damage. I was miserable back then; SOB, soaking night sweats, the coughing, debilitating fatigue, horrible tinnitus ... I could barely do anything! Every day though, things seemingly and slowly get better. I’d say I’m 85-90% back to being myself, save for this lingering vicious phlegm issue. I’m a fit, healthy 56 y/o male who has never experienced anything like this before.

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@otter2154

Sure. Pulmo put me on Symbicort (2 puffs, twice daily), and Singulair (one pill before bed). Additionally, I’ve been doing my own deep breathing exercises with a 40lb. resistance band ... plus lots of stretching ... these have helped me greatly. And I’ve been riding my bike and getting much general exercise. As the moderator also mentioned, I’m not ruling out having had a bad run with Covid back in Nov/Dec that has resulted in some slow-to-heal lung damage. I was miserable back then; SOB, soaking night sweats, the coughing, debilitating fatigue, horrible tinnitus ... I could barely do anything! Every day though, things seemingly and slowly get better. I’d say I’m 85-90% back to being myself, save for this lingering vicious phlegm issue. I’m a fit, healthy 56 y/o male who has never experienced anything like this before.

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Also - we did a strong course of prednisone with a long taper to reduce any inflammation (this helped a lot) and then a course of doxycycline to address any lingering infection.

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@otter2154

Sure. Pulmo put me on Symbicort (2 puffs, twice daily), and Singulair (one pill before bed). Additionally, I’ve been doing my own deep breathing exercises with a 40lb. resistance band ... plus lots of stretching ... these have helped me greatly. And I’ve been riding my bike and getting much general exercise. As the moderator also mentioned, I’m not ruling out having had a bad run with Covid back in Nov/Dec that has resulted in some slow-to-heal lung damage. I was miserable back then; SOB, soaking night sweats, the coughing, debilitating fatigue, horrible tinnitus ... I could barely do anything! Every day though, things seemingly and slowly get better. I’d say I’m 85-90% back to being myself, save for this lingering vicious phlegm issue. I’m a fit, healthy 56 y/o male who has never experienced anything like this before.

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Yea I am sorry to hear your story, but at least it looks like things are getting better, which is great news. Do you mind sharing more about the breathing exercises with the resistance band?
What is interesting about my case is that I mostly have my symptoms in the late afternoon/in the evening especially when I rest. I typically have no or less severe symptoms when I am physically active e.g. hiking, snowboarding, and walking.
Thank you

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Writing this as I struggle with SOB, which has occurred almost daily since December.

Relieved I am not the only one struggling to find a diagnosis/solution but also horrified that perhaps there are none.

Same story as most...

I’m in my thirties, in shape, active...

• Not COVID (negative antibody test, though maybe I should take one again)
• Worse at night (sometimes in morning or during day too though) and have multiple bouts; sometimes accompanied by chest pain or stuff nose
• Overall cardio (heart) OK but some arrhythmia and weak heart wall
• Not bronchitis (though treated for this)
• X-Ray and CT good
• Not asthma (inhalers don’t make a difference)
• Not Valley Fever (negative for antibodies)
• Comes on out of nowhere usually in evening (at rest but sometimes when active); nothing I can tell triggers it
• Quit smoking and drinking alcohol and caffeine and also exercised more and no improvement/change
• Yawn constantly to get deep breath, only thing that works...though when very consumed with work I normally don’t get SOB
• Interestingly I have this weird dry cough that comes and goes randomly (very rare but still lingers and I might hear it one time every couple weeks)
• Really don’t think I got COVID, we quarantined hardcore and not noticeably sick aside from this in past year

My cardio, pulmonary and nurse say anxiety. Doesn’t feel like normally anxiety, which I’ve had in past. Cut work hours significantly and less to worry about this year so not sure why triggered...daily, multiple times a day.

Anyone else experience SOB multiple times a day? It’s EXHAUSTING. Like clockwork at night usually.

Noticed someone posted high bilirubin. I too have this. I also have high iron. Anyone else have high iron or high bilirubin?

Anyone else have stuffy nose accompanying SOB?

Anyone else have sinus arrhythmia? Cardio said I had that so maybe connected?

Would love to learn about breathing exercises, etc. - anything at all that works.

Will report back if I learn anything new. Getting more blood tests and allergy test.

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@gabe79

Yea I am sorry to hear your story, but at least it looks like things are getting better, which is great news. Do you mind sharing more about the breathing exercises with the resistance band?
What is interesting about my case is that I mostly have my symptoms in the late afternoon/in the evening especially when I rest. I typically have no or less severe symptoms when I am physically active e.g. hiking, snowboarding, and walking.
Thank you

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My symptoms are almost always in afternoon/evening too. Like clockwork daily. Then I get SOB a minimum of 5 times a night. It’s crazy.

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@gabe79

Hi everyone,

My SOB started on January 31, 2021. It pretty much started out of the blue and it has been on since then with varying intensity and with a bunch of other symptoms such as general shallow breathing (this does not happen all the time), the inability to sigh or yawn completely (frequent), tightness of chest, general discomfort in chest (this is really hard to describe. I just have that "sicky" sensation in my chest as if I had bugs living inside...). I do not cough though.

I have seen doctors (family doctor and lung specialist), my chest x-ray test came back negative, lung function test is normal, blood test is normal. Since I did experience a little bit of heart burn initially as well, my doctor prescribed me Pantoprazole (40Mg, twice a day). Although this helped me with the heartburn, it did not really help with SOB and all the other symptoms.
I also use inhalers, Flovent once or twice a day and Ventolin occasionally. They seem to help a little but not completely and not consistently. Besides, I also use a peak flow meter regularly and the values I blow are quite normal and consistent (average 650). So given that the chest test and lung function test are normal, my doctors do not believe I have an asthma. They do not think it is beneficial for me to get a CT scan either because they do not believe I have any lung issue due to the negative test results described above.
My doctor suspects that my symptoms are related to anxiety. While I have had generalized anxiety disorder for a long time, I simply cannot see how my anxiety can all of a sudden cause me to have SOB constantly and so persistently for over two months now. Basically, what my doctor suggested that I try to take Cipralex (antidepressant) and if that does not help, he would consider referring me to an ENT and gastroenterologist.
Do you guys think it would be still a good idea to insist on having a CT scan to completely rule out any lung issue? Or would you say there is no point getting exposed to radiation given that all my other results are negative?
I would appreciate your thoughts and comments regarding my situation.

thank you

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Not sure if you got a CT scan but I did recently (super expensive even with insurance) and it came back clear. Probably a good idea to rule stuff out but for me nothing eye-opening came of it sadly.

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