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.

@gabrielm

Thanks for sharing @dampiera, that's an interesting comparison between GERD and sleep apnea/CPAP usage. I've done some research on silent reflux and is also an interesting possible correlation. I think the irritation of the reflux can cause inflammation of airways and other things which could cause some of the breathing experience many people experience.

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Yes, I thought it was interesting too! When I started waking up with air in my belly after getting a CPAP I asked my dr if it could have a long term effect on my esophageal sphincter. They told me no. So did every dr since. That has me pretty ticked off, because it is common sense!!!!

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@gabrielm

I've looked into this myself and find it interesting. I think it may be related to dyspnea in general or air hunger all of which are different terms for a similar thing. I think it does accurately describe what many are experiencing. The mental reassurance that I'm not in danger plus the breathing exercises, and a good diet and controlled exercise have helped me greatly over the years. I can tell you're very invested in finding correlations and information on a variety of causes and possibilities. It's certainly a journey of looking at various things, implementing some strategies, and tweaking along the way. Have you developed any strategies or solutions that have helped you along?

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I haven’t. Not since my inhaler stopped working several years ago. It disappears for a few weeks to a couple of months, then returns for anywhere between a few hours and a week. I am going to see an ENT doctor to find out if there is any damage to my esophagus that would point to “silent reflux”. I’ve been taking Omeprazole but it isn’t helping really.

I’ve never spoken with anyone who has had similar symptoms and I’m so excited to have found even one person who can relate to it, let alone several!

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@dampiera

I came upon a study today in which they described “sighing dyspnea”. That’s an interesting, and incredibly accurate, description of mine.

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look up sighing dyspnea and psuedo dyspnea, or anxiety. im trying to help call me biased whatever, i understand some of you have real comditions but some dont and its false and your lives are there for the living if you treat this sensation as unimportant. good luck guys

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I’ve never been opposed to the idea that it could be anxiety. I’ve just already addressed it with my psychiatrist, we tried a couple of meds, and he agrees with me that it doesn’t appear to be anxiety. I’ve had the issue be absent during extreme anxiety and present when I felt no anxiety as well. I’m leaning more toward the possibility of silent reflux for myself. It’s only an insult to be told by a doctor that it must be anxiety if they haven’t done anything beyond one test. In my case the pulmonologist literally did one test and proclaimed it anxiety. No recommendation to see any other type of doctor, just “it must be anxiety.”

That is not good medical care.

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@dampiera

I’ve never been opposed to the idea that it could be anxiety. I’ve just already addressed it with my psychiatrist, we tried a couple of meds, and he agrees with me that it doesn’t appear to be anxiety. I’ve had the issue be absent during extreme anxiety and present when I felt no anxiety as well. I’m leaning more toward the possibility of silent reflux for myself. It’s only an insult to be told by a doctor that it must be anxiety if they haven’t done anything beyond one test. In my case the pulmonologist literally did one test and proclaimed it anxiety. No recommendation to see any other type of doctor, just “it must be anxiety.”

That is not good medical care.

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Roemheld syndrome

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@yessir321

look up sighing dyspnea and psuedo dyspnea, or anxiety. im trying to help call me biased whatever, i understand some of you have real comditions but some dont and its false and your lives are there for the living if you treat this sensation as unimportant. good luck guys

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bro shut your mouth!!! because of people like you these poor people think they have anxiety when their problem is due to an accumulation of air in the stomach and intestine, due to esophagitis and hiatal hernia.

they have a syndrome called roemheld syndrome, what is happening is that the excess air in the stomach or sometimes it is not the excess but with a little amount of air in the stomach it can already trigger constant sighs and yawning.

the stomach is compressing the vagus nerve and elevating the diaphragm.

what started this cycle of sighs and yawns in most is gastroesophageal reflux that causes the esophagus to become irritated by the esophagus is the vagus nerve when this nerve is irritated by reflux or eosinophilic esophagitis gives this symptom of continuous sighing and yawning.

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@gabrielm

I've looked into this myself and find it interesting. I think it may be related to dyspnea in general or air hunger all of which are different terms for a similar thing. I think it does accurately describe what many are experiencing. The mental reassurance that I'm not in danger plus the breathing exercises, and a good diet and controlled exercise have helped me greatly over the years. I can tell you're very invested in finding correlations and information on a variety of causes and possibilities. It's certainly a journey of looking at various things, implementing some strategies, and tweaking along the way. Have you developed any strategies or solutions that have helped you along?

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Bro u literally have an hiatal hernia what's wrong with you...

what is happening is that the reflux and the air from the stomach is triggering a response in the vagus nerve, any condition that causes inflammation can trigger it

there is a neural connection between the esophagus and the brain in the esophagus is the vagus nerve this nerve if it becomes irritated or compressed it no longer sends the correct signals to the brain this is the cause of this "mysterious shortness of breath"
It's not even mysterious, don't you realize that you sigh all the time? part of this air accumulates in the stomach and the stomach full of air compresses the vagus nerve and collides with the diaphragm.

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@dampiera

I’ve never been opposed to the idea that it could be anxiety. I’ve just already addressed it with my psychiatrist, we tried a couple of meds, and he agrees with me that it doesn’t appear to be anxiety. I’ve had the issue be absent during extreme anxiety and present when I felt no anxiety as well. I’m leaning more toward the possibility of silent reflux for myself. It’s only an insult to be told by a doctor that it must be anxiety if they haven’t done anything beyond one test. In my case the pulmonologist literally did one test and proclaimed it anxiety. No recommendation to see any other type of doctor, just “it must be anxiety.”

That is not good medical care.

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It's not anxiety, these people say they read all the comments but they still don't understand what they have... it's the excess air in the stomach and the inflammation of the esophagus that is making these people need to yawn and sigh!

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@sofia80

Roemheld syndrome

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This is FASCINATING! I don’t have all of these symptoms, BUT I was never able to burp until a little while after I started using a CPAP machine around 13 years ago. Then I started experiencing increasingly frequent aerophasia from the CPAP. Over the years my symptoms have also increased.

When I was a kid I had recurring stomach issues. I had upper and lower GI tests done. It was eventually attributed to anxiety, and I believe it was an accurate diagnosis. My childhood involved a lot of verbal and some physical abuse as well as mistreatment bu several teachers.

However, the earliest I recall the sighing was high school, and I had no image testing done at that point.

Again, fascinating stuff! I really appreciate your sharing this!

I’m still open to it being anxiety. The mind is very powerful. I just feel that anxiety as a cause has been properly explored in my case. Anxiety seems to be a blanket diagnosis for anything that a doctor can’t figure out and it is so frustrating.

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@sofia80

It's not anxiety, these people say they read all the comments but they still don't understand what they have... it's the excess air in the stomach and the inflammation of the esophagus that is making these people need to yawn and sigh!

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I agree with you; you know your own body better than anyone else. The average 'lazy doctors' medical contention that you start by ruling out psychological causes of health issues before you investigate physical health issues annoys the hell out of me. There is a medical term called 'secondary to' referring to something having been caused by another thing. If you have real health problems then you will psychological issues 'secondary to' the health problems. After I collapsed at work I began to experience issues with dysfunction of the upper oesophageal sphincter, as a consequence affecting the function of my epiglottis. This resulted in both aerophagia and aspiration in my own case.

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