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.

@jmunderhi

Curious if anyone has looked into constrictive bronchiolitis or diffuse aspiration bronchiolitis? Reflux and heartburn are different. Many with reflux do not get heartburn nor do they know they’re refluxing. Acid reflux meds do not stop reflux, they just mask issues by stopping heartburn. Food still comes up, microscopically when the LES is weak. Most with reflux have a weakened LES. Over time, it can damage the small airways. PFTs likely don’t pick up on these nuances and pulm docs will tell patients they’re fine, when they may not be. CT scans don’t likely show this either. Small airways are very complex. Not writing to alarm anyone, but if an ongoing issue, talk to your GI about a nissen fundoplication. May not be for you, but might be worth asking your doc. Docs are great at convincing patients they’re crazy or perceiving things. Don’t buy it.

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@jmunderhi- Good morning. I'm glad that you have joined us again with your feedback. Have you had bronchiolitis and needed the Nissen fundoplication to help stop your SOB or GERD?

You might be interested in others with pop-corn lungs and see what they did.

Will you tell me more about your symptoms and treatments?

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@merpreb

@jmunderhi- Good morning. I'm glad that you have joined us again with your feedback. Have you had bronchiolitis and needed the Nissen fundoplication to help stop your SOB or GERD?

You might be interested in others with pop-corn lungs and see what they did.

Will you tell me more about your symptoms and treatments?

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I have not been diagnosed. I have severe Gerd and had the fundoplication. I have sob that is worse with exertion. If you could point me to the others and what they’ve done, that would be awesome.

Also, if there are any forums or people discussing aspiration bronchiolitis, I’d love to join that discussion as well.

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@jmunderhi

I have not been diagnosed. I have severe Gerd and had the fundoplication. I have sob that is worse with exertion. If you could point me to the others and what they’ve done, that would be awesome.

Also, if there are any forums or people discussing aspiration bronchiolitis, I’d love to join that discussion as well.

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@jmunderhi- You are posting in the correct group. Are you suspecting that you might have bronchiolitis? What symptoms are you having?

Perhaps @trtrenck; @tonya1980; can discuss their stories with you

What is your diagnosis?

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I have no diagnosis. Just sob for 8 months that is worse with exertion. Never smoked or vaped. Did have some chemical exposure I have been concerned about. Pretty healthy and fit guy otherwise. Have Barrett’s. Had really bad reflux. Had a nissen with some early improvement but now I’m basically same as I have been. Looking for someone that has a diagnosis from reflux. It can cause aspiration related lung diseases. Haven’t found an answer yet. I’ve just done months of research.

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@rofpic

Hello, I see this post is a few yrs old but I think I am suffering from the same thing. Constantly feeling like I need to take a deep breath but can't (most of the time). Mine recently started a few weeks ago out of the blue. Went to the doctor and got diagnosed with asthma, but something about that doesn't seem right to me. Being that I have no other symptoms other than the need to take a deep breath but can't. Some moments are ok and tolerable while others I feel like I'm going to freak out if I can't get a deep breath.
It is disheartening to hear that you don't no the cause and still haven't found a cure.
I'm hoping that maybe you have found something that at least helps, or maybe even triggers. I plan in going back to the doctor soon.

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Hi @rofpic, I hear you. It can be disheartening when the cause is not known. While I haven’t found a direct known cause for mine, I have attributed it to a variety of factors and have taken a wholesome approach to treat it, including healthier eating, moderate exercise, and breathing exercises. I would suggest seeing if you can get further lung function tests to determine your lung capacity to see what those numbers are and a second opinion on asthma just be sure. But I find that too vigorous exercise and nasal inflammation can be triggers. How do you do with physical exertion?

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@jmunderhi

I have no diagnosis. Just sob for 8 months that is worse with exertion. Never smoked or vaped. Did have some chemical exposure I have been concerned about. Pretty healthy and fit guy otherwise. Have Barrett’s. Had really bad reflux. Had a nissen with some early improvement but now I’m basically same as I have been. Looking for someone that has a diagnosis from reflux. It can cause aspiration related lung diseases. Haven’t found an answer yet. I’ve just done months of research.

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@jmunderhi- I would certainly get your chemical exposure checked out. Was the exposure prior to your current symptoms?

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@kevintran

Thanks Merry and Sue for your responses.
I never heard of "exercise-induced bronchoconstriction" and no, my doctors (family, pulmonary, and cardiology doctors) haven't mentioned it but after reading Merrie's linkage to the Mayo Clinic's website I think it's a possibility since my issues matched most of the listed symptoms :
* Coughing (no) • Wheezing (no) • Noisy breathing (yes) • Shortness of breath (yes) • Chest tightness or pain (yes) • Fatigue during exercise (yes) • Poorer than expected athletic performance (yes).
I'll suggest my doctors to look into this possible cause the next time I see them.
BTW, as Sue has said "I always got it from exertion in high heat/humidity", my problem seems worse when I play tennis around noon time or during high heat. However, I had been playing tennis for 40 years, and did lots of swimming, running, cycling and never had this problem until 10 days after the second Covid vaccine shot. So I tend to agree with Merry : 'even though the vaccine does make us very sick, our immune reactions can go "behind our backs". Perhaps your immune system put some strain on your lungs'. Yes, my immune system could have over-reacted since I was sick for 4 days after the second shot. I had headache, high fever, high blood pressure, rapid heart rate, fatigue (something rarely happens to people in 65+ age group * I'm 65 year old).
My doctors will look into my lung system again by performing a "pulmonary function test" next, then my cardiology doctor will look into the heart by doing a "calcium score test" and a "echocardiogram".
Thanks so much for your insights. I'll let you know the progress.
Kevin Tran

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@kevintran, yes let us know how your test goes. I had a pulmonary function test done a few years back and was normal though they did find it on the lower side of normal. I also didn’t have many of those symptoms mentioned like wheezing or coughing or noisy breathing. Airway constriction may be a part of what’s going on with you but interesting to see what your doctor says.

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@jmunderhi

I have no diagnosis. Just sob for 8 months that is worse with exertion. Never smoked or vaped. Did have some chemical exposure I have been concerned about. Pretty healthy and fit guy otherwise. Have Barrett’s. Had really bad reflux. Had a nissen with some early improvement but now I’m basically same as I have been. Looking for someone that has a diagnosis from reflux. It can cause aspiration related lung diseases. Haven’t found an answer yet. I’ve just done months of research.

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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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@gabrielm

@kevintran, yes let us know how your test goes. I had a pulmonary function test done a few years back and was normal though they did find it on the lower side of normal. I also didn’t have many of those symptoms mentioned like wheezing or coughing or noisy breathing. Airway constriction may be a part of what’s going on with you but interesting to see what your doctor says.

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Hi Gabe,
I'll have a pulmonary function test on Aug 26 and a Echocardiogram on Aug 27. I'll let you know the results. BTW, they did a Calcium Score test for me on Aug 3 but I haven't received any word from my doctor yet. This test to study the calcium built-up in my heart veins/muscles.
Thanks,
Kevin

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@jmunderhi

I have no diagnosis. Just sob for 8 months that is worse with exertion. Never smoked or vaped. Did have some chemical exposure I have been concerned about. Pretty healthy and fit guy otherwise. Have Barrett’s. Had really bad reflux. Had a nissen with some early improvement but now I’m basically same as I have been. Looking for someone that has a diagnosis from reflux. It can cause aspiration related lung diseases. Haven’t found an answer yet. I’ve just done months of research.

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Just a couple more questions as you look for a reason -
As you mentioned that your sob is worse with exertion, have they stress tested you for exercise induced asthma? And have they done any imaging on your lungs? Sometimes that can reveal unusual changes that may lead to a diagnosis.
Sue

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