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.

My COPD is a little tough with the Mask mandate. I cheat whenever possible as there is no conclusive evidence of usefulness. I also use a technique i learned on this site, to wit, breathing through pursed lips which puts breathing under pressure. A related problem is slowing pulse. I went as low as 30 sitting in Mass recently so I have started moving as much as I can manage. This site has definitely helped me!

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@gabrielm

Hi @jessep, this is indeed still a very active forum! New people like you come across this thread on a regular basis. I am the OP and while we don’t have a consensus or cure, we’ve gathered some coping techniques and continue to search for answers all the time.

My symptoms come and go. The air hunger is still there for me but is manageable and not severe like it was when I wrote this post.

Many people have other conditions, such as what you mentioned but also things like GERD, lung conditions, or something else. But many still experience the air hunger as pretty much the only symptom of anything.

I’ve considered Vocal Cord Dysfunction which I’ll be tested for later this month or possibly an issue with the diaphragm.

My method that has helped reduce symptoms for me is the Buteyko breathing method and moderate daily exercise. There may be something to what they teach regarding deficient CO2 levels but never came to a conclusion if that’s an issue. It could very well be a symptom however.

Did the blood work come back with any nutrient deficiencies?

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I hope you find the cause. Report the results to us

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It's obviously been a few years since this was posted. Is there any update? I've been in the ER twice since Aug (2021) with a mysterious onset of SOB in the form of air hunger and no tests so far figuring out what's causing it. All tests are normal.

I'm miserable and can't even drive anymore because I get so lightheaded from this.
I'm only 31

A friend of mine mentioned maybe it could be CIRS, has anyone ventured that route?

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@okfaith7

It's obviously been a few years since this was posted. Is there any update? I've been in the ER twice since Aug (2021) with a mysterious onset of SOB in the form of air hunger and no tests so far figuring out what's causing it. All tests are normal.

I'm miserable and can't even drive anymore because I get so lightheaded from this.
I'm only 31

A friend of mine mentioned maybe it could be CIRS, has anyone ventured that route?

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Hi @okfaith7, glad you found us. Though the original post hasn’t been updated, the comments section itself is very active, so people have updated in the form of comments.

Was asthma one of the things that was tested for with you? Also, did you get any bloodwork done to check for any nutrient deficiencies? These might be some quick checks to rule anything out.

In the meantime you could attempt to control your breathing as much as possible. Years ago when this started for me, I did controlled breathing through my nose and it helped a great deal.

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Many of the posts on this thread sound like vocal cord dysfunction/paradoxical vocal cord motion. I'm diagnosed with that and have the exact same experience with not being able to get a breath through and repeated yawning and deep breaths that a lot of people here are describing. I saw one post mention that VCD is caused by trauma to the throat that mechanically damages the vocal cords in some way--I don't think that is really the case, at least not for everyone. I've never heard that explanation before, and I recall any neck trauma that could have caused my own VCD. So I wouldn't rule it out based on that.

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I have been searching for the similar SOB problem for years and am glad to come across this post today. I first had this deep breath needing issue 20 years ago. No clear medical issues were found at that time. The issue was gone a few months later but came back in recent years. The issue is especially worse (have to take many deep breaths) after full meals so I suspect it is also related to acid reflux. Overall my symptom is not super bad so I didn't see a doctor for this recently. Two years ago my daughter (born in 2009) started to have this same issue. She needs deep breathing (sighing heavily) from time to time even without doing any exercise. She is a soccer player and the need to take many deep breaths in a game caused a big trouble to her. If some of the deep breaths didn't go through well, she started to get panic and struggle to get more deep breaths. We are very serious about her soccer but now the breathing issue is already affecting her performance badly. I recent took her to see a doctor (didn't do this earlier due to the pandemic) and so far all the tests are normal. She has excessive belching issue (but no severe heartburns) so I suspect the breathing issue was due to the acid reflux too. I gave her TUMS gas relief pills but it didn't seem helpful (did about one week). Probably I will try Prilosec and the Buteyko breathing exercise that Gabe mentioned in the post. If anyone has other suggestions please let me know. Very appreciate it.

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@ajfish98

Many of the posts on this thread sound like vocal cord dysfunction/paradoxical vocal cord motion. I'm diagnosed with that and have the exact same experience with not being able to get a breath through and repeated yawning and deep breaths that a lot of people here are describing. I saw one post mention that VCD is caused by trauma to the throat that mechanically damages the vocal cords in some way--I don't think that is really the case, at least not for everyone. I've never heard that explanation before, and I recall any neck trauma that could have caused my own VCD. So I wouldn't rule it out based on that.

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@ajfish98, you may be interested in joining this discussion on
- Vocal Cord Dysfunction https://connect.mayoclinic.org/discussion/vocal-cord-dysfunction/

Do you know what caused your vocal cord to dysfunction?

Hi @weiyuzhu, I hope that dealing with the acid reflux resolves the issue for you and your daughter. The breathing exercises will also be good to help that awful panicky feeling when she can't get her breath. I'd be interested to hear how things progress with the exercises and how they work for both you and her.

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@weiyuzhu

I have been searching for the similar SOB problem for years and am glad to come across this post today. I first had this deep breath needing issue 20 years ago. No clear medical issues were found at that time. The issue was gone a few months later but came back in recent years. The issue is especially worse (have to take many deep breaths) after full meals so I suspect it is also related to acid reflux. Overall my symptom is not super bad so I didn't see a doctor for this recently. Two years ago my daughter (born in 2009) started to have this same issue. She needs deep breathing (sighing heavily) from time to time even without doing any exercise. She is a soccer player and the need to take many deep breaths in a game caused a big trouble to her. If some of the deep breaths didn't go through well, she started to get panic and struggle to get more deep breaths. We are very serious about her soccer but now the breathing issue is already affecting her performance badly. I recent took her to see a doctor (didn't do this earlier due to the pandemic) and so far all the tests are normal. She has excessive belching issue (but no severe heartburns) so I suspect the breathing issue was due to the acid reflux too. I gave her TUMS gas relief pills but it didn't seem helpful (did about one week). Probably I will try Prilosec and the Buteyko breathing exercise that Gabe mentioned in the post. If anyone has other suggestions please let me know. Very appreciate it.

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Hi @weiyuzhu, welcome to the forum. How often does your daughter have the breathing issue- is it daily or less frequent? Did she get bloodwork done? I often suggest getting a full panel of blood work done as in some cases, there can be a nutrient deficiency that might either cause or exacerbate the SOB. How about lung function and asthma tests? We’re those done and did the doctors find anything unusual?

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Hoping someone can provide some insight. I am 54 healthy, run 15-20 miles per week. 2 years ago I developed double pneumonia and 1 year ago Covid. Just before I had covid I developed leg swelling; after Covid recovery I had an echo done which showed mild fluid. About 6 months ago I developed chronic feeling of having chest congestion with no cough. Repeat echo showed insignificant fluid, pulmonologist ran labs and a ct angiogram. The only thing that showed was a slightly high d dimer. I have a pulmonary function test in another week. I often feel chest pressure and SOB. When all the tests come back normal it’s a good thing but then I feel like maybe it’s all in my head. Any insights appreciated!

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@cbbmom

Hoping someone can provide some insight. I am 54 healthy, run 15-20 miles per week. 2 years ago I developed double pneumonia and 1 year ago Covid. Just before I had covid I developed leg swelling; after Covid recovery I had an echo done which showed mild fluid. About 6 months ago I developed chronic feeling of having chest congestion with no cough. Repeat echo showed insignificant fluid, pulmonologist ran labs and a ct angiogram. The only thing that showed was a slightly high d dimer. I have a pulmonary function test in another week. I often feel chest pressure and SOB. When all the tests come back normal it’s a good thing but then I feel like maybe it’s all in my head. Any insights appreciated!

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Hi @cbbmom, welcome to the Lung Health group. It is frustrating when dealing with a significant symptom that seems to have no known cause or explanation. You'll notice that I moved your message to this active discussion thread called "Mysterious shortness of breath". I did this so that you can connect with others, like @gabrielm @merpreb and others who are seeking and finding answers about the shortness of breath and ways to cope.

Having had pneumonia 2 years and COVID a year ago, does the pulmonologist think there may be a connection to post-COVID recovery? While normal test results are good, it makes it hard to find answers. What seems to trigger the feeling of chest pressure and/or the shortness of breath? What gives you relief when you experience these symptoms?

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