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.

@phinbar21

Hi. I’ve been experiencing SOB for a year now. It’s consoling to hear others going through this. My SOB is daily, occurring randomly throughout the day. It feels more like an inability to take a satisfying deep breath. If I yawn, it will abruptly cut off at about 80% of the full yawn. My inhale is more labored than my exhale. And it feels like a heavy weight is in my upper chest, below the bottom of my throat. That said I still run 4-6 miles daily and while the symptoms are present, I still run at the same pace as before.

I had a full cardio and pulmonary workup. Lung CT, pulmonary function tests, MRI of heart, etc. I check out completely healthy. My doctors just assume it will go away or it is anxiety, but I have no anxiety in my life.

It’s been a full year and it hasn’t gotten better or worse. It’s the same. Not sure if that is a good or bad thing.

I do have a mild hiatal hernia and also have some post nasal drip. I am wondering if it could be LPR, which I found by googling. I may see an ENT.

Anyway I can’t live like this, so I’m hoping to get an accurate diagnosis, but don’t know where to turn.

Any thoughts would be appreciated.

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Hi @phinbar21, I'm sorry you've been experiencing this breathing issue. But I'm glad you found this forum and as you can see, there are many people who are experiencing the same symptoms. So you're definitely not alone! I know what you mean about feeling like your lungs are empty and can't fill them. We've termed that "air hunger" vs the SOB which would be more like labored or heavy breathing due to certain conditions like asthma, COPD, or just exercising.

Have you thought about cutting back or cutting down the frequency of running? When this all began for me, I would still run and it would seems to help but I've since only been running (which is really a light jog) just as much as my breathing can handle without pushing too hard.

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@phinbar21

Interesting, thank you. I also have really bad neck pain on the left side of my neck (feels like a kink). Perhaps it is related and something for me to explore.

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Like many others here in this forum, I was healthy working out at the gym and walking daily. In retrospect, we believe that the workouts perhaps were a part of what caused the problem. Good luck and please let me know. I would love to help someone so they don’t have to suffer as many years as I did.

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@gabrielm

Hi @phinbar21, I'm sorry you've been experiencing this breathing issue. But I'm glad you found this forum and as you can see, there are many people who are experiencing the same symptoms. So you're definitely not alone! I know what you mean about feeling like your lungs are empty and can't fill them. We've termed that "air hunger" vs the SOB which would be more like labored or heavy breathing due to certain conditions like asthma, COPD, or just exercising.

Have you thought about cutting back or cutting down the frequency of running? When this all began for me, I would still run and it would seems to help but I've since only been running (which is really a light jog) just as much as my breathing can handle without pushing too hard.

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I’ve taken a week off here and there to see if things changed, but it didn’t seem to have an effect. This all started pretty abruptly - it came out of nowhere a year ago and just hasn’t gone away at all.

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I experience the same! I have off and on since 2008.
When I have it, it is worsened by excessive gas or inflammation in the bowels, meaning there is pressure on my diaphragm, but it comes on before that, so I don’t think it is the cause.
I have a couple theories going on, but I’m not entirely convinced on any. One is unilateral diaphragm paralysis, I recently received x-ray results of a C4 anterolisthesis, however it was mild. Potentially it is irritating the phrenic nerve? A unilateral diaphragm paralysis can be asymptomatic, but I wonder if this is a symptom? Sometimes it is found on x-ray, sometimes hypoventilation can occur at night and it’s found on a sleep study.

Another is a maladaptive breathing pattern that started following a L shoulder car impact and wrestling injury 2 weeks apart in 2008. I don’t know the specific injury, but I know that I had sharp pain in my chest and back on the left side at the point of deep inspiration. I managed the discomfort from that injury with mainly stretching my pectorals on the left side which even now, along with my trap and other shoulder muscles seem to constantly tighten.

I did and still do have a stressful job, but 2 years ago went through a particularly traumatic time. This “breathing discomfort” (I call it, but air hunger suits it too) has come back pretty badly in the last month along with an iron deficiency (not sure how long this has been going on). I now feel I have very little reserves to manage the breathing discomfort and all the other stressors I now have in life. I found myself balling in my physiotherapist’s office yesterday.

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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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Thank you for the detailed post. I also face the same shortness of breath issue for the past 6 months. A few times I woke up at night due to breathlessness (sleep apnea). I suffer from allergy issues for the past 20+ years. CBC, Chest x-ray, ECG, echo and chest CT are normal. I also have hand pain(pins and needles and numbness) whenever I work on my laptop that is charging. I suspect nerve issue.
Don't know if it is related to the shortness of breath issue.

Don't know what else to do to diagnose the reason.

Also thinking of trying some alternative medicines in ayurvedha.

Wanted to connect with you to share.

Thans again for sharing your experience.

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@shivak

Thank you for the detailed post. I also face the same shortness of breath issue for the past 6 months. A few times I woke up at night due to breathlessness (sleep apnea). I suffer from allergy issues for the past 20+ years. CBC, Chest x-ray, ECG, echo and chest CT are normal. I also have hand pain(pins and needles and numbness) whenever I work on my laptop that is charging. I suspect nerve issue.
Don't know if it is related to the shortness of breath issue.

Don't know what else to do to diagnose the reason.

Also thinking of trying some alternative medicines in ayurvedha.

Wanted to connect with you to share.

Thans again for sharing your experience.

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If you have pins, needles and numbness in your hand, I agree with it potentially being a nerve issue. The nerves for your hand run through your neck. The nerves for your diaphragm also run through your neck.
Not a doctor, but potentially you could get X-ray or MRI of your C-spine to rule out compression happening there, and/or EMG of those nerves.
Have you had a sleep study? It may help with pinpointing the reason of the sleep apnea.

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@holliehobbie

I experience the same! I have off and on since 2008.
When I have it, it is worsened by excessive gas or inflammation in the bowels, meaning there is pressure on my diaphragm, but it comes on before that, so I don’t think it is the cause.
I have a couple theories going on, but I’m not entirely convinced on any. One is unilateral diaphragm paralysis, I recently received x-ray results of a C4 anterolisthesis, however it was mild. Potentially it is irritating the phrenic nerve? A unilateral diaphragm paralysis can be asymptomatic, but I wonder if this is a symptom? Sometimes it is found on x-ray, sometimes hypoventilation can occur at night and it’s found on a sleep study.

Another is a maladaptive breathing pattern that started following a L shoulder car impact and wrestling injury 2 weeks apart in 2008. I don’t know the specific injury, but I know that I had sharp pain in my chest and back on the left side at the point of deep inspiration. I managed the discomfort from that injury with mainly stretching my pectorals on the left side which even now, along with my trap and other shoulder muscles seem to constantly tighten.

I did and still do have a stressful job, but 2 years ago went through a particularly traumatic time. This “breathing discomfort” (I call it, but air hunger suits it too) has come back pretty badly in the last month along with an iron deficiency (not sure how long this has been going on). I now feel I have very little reserves to manage the breathing discomfort and all the other stressors I now have in life. I found myself balling in my physiotherapist’s office yesterday.

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I had shortness of breath, and learned in March that I have paralysis of right diaphragm as well. Stairs absolutely about kill me. Walking not a problem. I have resorted to learning my “limitations” and adapting accordingly. Good luck.

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@kid2thdr

I had shortness of breath, and learned in March that I have paralysis of right diaphragm as well. Stairs absolutely about kill me. Walking not a problem. I have resorted to learning my “limitations” and adapting accordingly. Good luck.

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I’m so sorry to hear that. Does your shortness of breath feel like not being able to take a DEEP breath?
I read that the right sided paralysis is worse/more noticeable than the left. How do you think it started?

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@holliehobbie

I’m so sorry to hear that. Does your shortness of breath feel like not being able to take a DEEP breath?
I read that the right sided paralysis is worse/more noticeable than the left. How do you think it started?

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Yes. Unable to breathe deeply. Pulmonologist said could be a “post COVID” thing, but also said I could have had it for years and just now “manifesting” itself.

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@kid2thdr

Yes. Unable to breathe deeply. Pulmonologist said could be a “post COVID” thing, but also said I could have had it for years and just now “manifesting” itself.

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How did they come about the diagnosis? What diagnostic tests did they use? Sorry for all the questions, I only read about it but it felt like my physio and doctor thought I was nuts when I mentioned it.

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