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.

That’s really good advice for an asthmatic that I for one tend to hyperventilate

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@peterson

That’s really good advice for an asthmatic that I for one tend to hyperventilate

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Sorry. I don't have asthma either. For some reason, it is the only thing that helps me.

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Looking into hemochromatosis. My iron levels have been elevated for years and more recently the symptoms of this disease align with what I’m experiencing. Second pulmonologist I went to seems to think this is a possible diagnosis otherwise he is perplexed. He did acknowledge there are patients that they can never figure out why they have SOB or a cough though does not think my symptoms are related to anxiety, unlike every other doctor I’ve been to that says it’s “probably” that.

Sharing so those of you don’t give up hope and keep searching for answers and a solution.

As someone who has lived with anxiety for years, and fairly certain these symptoms are not anxiety related, it’s quite frustrating and depressing to have to go to 5 doctors and spend tons of time and money. Four months later and I finally found one that looks at the bigger picture, my whole health history, and listens to me. So I suppose that’s good and some progress.

Will update soon, in the meantime reminder to get a full blood work up.

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@merpreb

@gabe79- Good morning, it's nice to meet you. I know that it's very difficult to think that our minds work so secretly behind our backs. I think that because the medical community really doesn't have a defined cause for SOB that it would benefit all of us to keep an open mind.

If you were to take an antidepressant or other similar medications to help your SOB how would that be a waste of time? WHy not exhaust all possibilities?

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Perhaps instead of suggesting pills we should encourage people to get more tests done first. Overprescribing people is not the answer IMO.

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Maybe antidepressants will work for you but last time I checked being depressed doesn’t directly cause anxiety. I also have had depression for 20+ years o and off and only started experiencing SOB 4 months ago. I’m not depressed at all right now and my SOB is horrible.

With that said, see my latest post about bloodwork and my possible diagnosis. Make a list of possible issues and start going to specialists and cross things off that it can’t be. I’ve been to 5 different specialist now, and about to visit a sixth for blood diseases.

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Hello...I have dealt with these same issues for almost 20 years now. For a while I was ok but then it started again. Now it's so frequent that I'm currently going to a cardiologist to rule out heart disease since it does run in my family. I have been told it's asthma, stress, and allergies but my oxygen is good, my labs are good, my ekg is always abnormal but my stress tests and echocardiogram is always normal. Next thing on the list will be the an ear, nose, and throat doctor

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Hello @lalaag, and welcome to Mayo Connect - I see that you are new here. We are a community of people living with a wide variety of conditions, coping and helping each other along the way. We are not medical professionals, so cannot provide medical advice, but we can and do share resources and what has worked for us.
Shortness of breath is a frequent symptom, which may or may not have an obvious cause or diagnosis. It has been an issue for me through many years, and my story sounds a lot like you - asthma, allergies, stress, heart disease... - yes, no, maybe. I was finally diagnosed with a lung condition called bronchiectasis during a massive lung infection, which means the bronchioles do not function properly, lungs tend to fill with mucus, and opportunistic infections occur. My brother had a similar experience, and ultimately received a different diagnosis - now we each have an appropriate treatment regimen, and life is better.
What has helped my shortness of breath is daily use of my meds, practicing deep breathing exercises and airway/lung clearance techniques and avoiding ill people because every cold develops into bronchitis or pneumonia.
You mentioned seeing a cardiologist, have you also been evaluated by a pulmonologist?
Sue

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Has anyone here checked out sighing dyspnea? Symptoms usually include the feeling like you aren't getting a "satisfying" breath of air usually followed by yawning or sighing attacks. Some people also experience it after eating a big meal or specific types of foods. This article explains it pretty well:
https://www.jacionline.org/article/S0021-8707(38)90466-6/pdf
However, that article is very old, published in November of 1938 I'm wondering if any further research has been done about this syndrome.

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@j178452

Looking into hemochromatosis. My iron levels have been elevated for years and more recently the symptoms of this disease align with what I’m experiencing. Second pulmonologist I went to seems to think this is a possible diagnosis otherwise he is perplexed. He did acknowledge there are patients that they can never figure out why they have SOB or a cough though does not think my symptoms are related to anxiety, unlike every other doctor I’ve been to that says it’s “probably” that.

Sharing so those of you don’t give up hope and keep searching for answers and a solution.

As someone who has lived with anxiety for years, and fairly certain these symptoms are not anxiety related, it’s quite frustrating and depressing to have to go to 5 doctors and spend tons of time and money. Four months later and I finally found one that looks at the bigger picture, my whole health history, and listens to me. So I suppose that’s good and some progress.

Will update soon, in the meantime reminder to get a full blood work up.

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Talk to pulmonologist about a bronchoscopy to culture for bacteria. My SOB got so bad I was almost an invalid.
Diagnosis was MAI

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@sueinmn

Hello @lalaag, and welcome to Mayo Connect - I see that you are new here. We are a community of people living with a wide variety of conditions, coping and helping each other along the way. We are not medical professionals, so cannot provide medical advice, but we can and do share resources and what has worked for us.
Shortness of breath is a frequent symptom, which may or may not have an obvious cause or diagnosis. It has been an issue for me through many years, and my story sounds a lot like you - asthma, allergies, stress, heart disease... - yes, no, maybe. I was finally diagnosed with a lung condition called bronchiectasis during a massive lung infection, which means the bronchioles do not function properly, lungs tend to fill with mucus, and opportunistic infections occur. My brother had a similar experience, and ultimately received a different diagnosis - now we each have an appropriate treatment regimen, and life is better.
What has helped my shortness of breath is daily use of my meds, practicing deep breathing exercises and airway/lung clearance techniques and avoiding ill people because every cold develops into bronchitis or pneumonia.
You mentioned seeing a cardiologist, have you also been evaluated by a pulmonologist?
Sue

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That was good advice. I have Bronchiectasis w/
tree in bud. and MAI. The flutter valve has made the biggest difference in my life.
I took the big 3 antibiotic treatment for 1 year. Not sure how I stand on the MAI as the Pandemic hit
and I'm hesitant to have another bronchoscopy at the present time. Sputum samples taken to any of the labs
are iffy.

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