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.

@tiss

I know this is an older post and I've not read through all the comments, but I'm curious if you have had a cardiopulmonary stress test? Different than your usual stress test.

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Is that the same as an electrocardiogram stress test?

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@laylabug

Is that the same as an electrocardiogram stress test?

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No. This is a test that tests for cardio and pulmonary response to exercise. They use this on elite athletes and people like me who have chronic fatigue, shortness of breath (extreme) intolerance to exercise with exhausting every other lung and heart test out there. I also have intermittent bouts of hypoxia. I've had more tests than I can count over 3 years and finally had to give up tennis due to so much trouble with breathing. The last test that was run, just last week, was a cardiopulmonary test. Everything showed excellent and 10% better than women my age-- 63. But, one thing was not normal. I could not reach my peak heart rate during exercise. Blood pressure and heart rate were flat in response to exercise. So something called chronotopic incompetence is suspected. You will have to google it. I'm just now trying to understand it. One of the causes can be a congenital hole in the heart that didn't close up properly after birth. Cardiologist said if that's what it is, it is probably not large since I've made it this far. Apparently hole can be patched but I'm waiting to hear back to see what the plan is. If it's not that, then I don't have a clue. Hope I get to feel better and play tennis and exercise like I want again.

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@gabrielm

@laurasue I think it was still good that you got checked out. If anything you ruled out a bunch of things and you know that you're in good health otherwise. I'm going to try CrowdMed soon to see if they might find something hidden that's not well known, and even tip them off to this forum so they can research what others are going through as well.

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Gabrielm... Have they wandered into the area of PAH acronym for Pulmonary Arterial Hypertension? There’s 2 parts Primary & Secondary. It has to be found only by a Cardiologist who ALSO specializes in Pulmonary Care. I took, get this... Viagra prescribed by a specialized Pulmonologist in Phoenix at St Joseph’s Hospital now owned by Dignity Healthcare.
As it turned out after we moved to the Ozarks in Missouri we’d go up to Barnes Hospital in St Louis for tests every 3 months. The first time I had a total of 9-1/2 hours of testing and then finally saw a team of 7 doctors and the lead was the doctor Cardiopulmonary who thankfully said that I had, yes had, secondary PAH. Unfortunately primary PAH, unless something new has come on the scene, there’s no cure as of yet.
At that time I was upwards of 385 pounds with only 17% lung capacity due to my weight.
The panel said you MUST loose the weight FAST if you want to live and recommended a Gastric Bypass.
Before you say it, PAH doesn’t just happen to fat overweight people. It can happen to anyone at anytime.
The viagra would dilate the heart arteries down by the lungs and therefore help one to breathe easier.
It’d be worth asking about if You haven’t already!!

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I might have the beginnings of an answer for me. I had a right heart cath done Friday. The pulmonary hypertention I supposedly have (3 echocardiograms) did not ring true. However I had a step up in oxygen saturation where oxygen should be lower indicating a left to right shunt. Oxygenated blood is going back to lungs instead of out to body. Doc said this can definitely cause my symptoms. We know "what" is going on, I am waiting to learn "how"/"where" in the heart-lung path it is occurring.
Once that is determined I will know what comes next.

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@laylabug

Gabrielm... Have they wandered into the area of PAH acronym for Pulmonary Arterial Hypertension? There’s 2 parts Primary & Secondary. It has to be found only by a Cardiologist who ALSO specializes in Pulmonary Care. I took, get this... Viagra prescribed by a specialized Pulmonologist in Phoenix at St Joseph’s Hospital now owned by Dignity Healthcare.
As it turned out after we moved to the Ozarks in Missouri we’d go up to Barnes Hospital in St Louis for tests every 3 months. The first time I had a total of 9-1/2 hours of testing and then finally saw a team of 7 doctors and the lead was the doctor Cardiopulmonary who thankfully said that I had, yes had, secondary PAH. Unfortunately primary PAH, unless something new has come on the scene, there’s no cure as of yet.
At that time I was upwards of 385 pounds with only 17% lung capacity due to my weight.
The panel said you MUST loose the weight FAST if you want to live and recommended a Gastric Bypass.
Before you say it, PAH doesn’t just happen to fat overweight people. It can happen to anyone at anytime.
The viagra would dilate the heart arteries down by the lungs and therefore help one to breathe easier.
It’d be worth asking about if You haven’t already!!

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Hi @laylabug, Thanks for the suggestion! I was looked at for PAH. Tests came back negative, so nothing there but hadn't heard of the secondary PAH. Will have to look into that. Thank you!

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@kakas

I might have the beginnings of an answer for me. I had a right heart cath done Friday. The pulmonary hypertention I supposedly have (3 echocardiograms) did not ring true. However I had a step up in oxygen saturation where oxygen should be lower indicating a left to right shunt. Oxygenated blood is going back to lungs instead of out to body. Doc said this can definitely cause my symptoms. We know "what" is going on, I am waiting to learn "how"/"where" in the heart-lung path it is occurring.
Once that is determined I will know what comes next.

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@kakas, thanks for letting us know! Keep us updated on what else you find out.

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@gabrielm

Hi @laylabug, Thanks for the suggestion! I was looked at for PAH. Tests came back negative, so nothing there but hadn't heard of the secondary PAH. Will have to look into that. Thank you!

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@gabrielm do not give up with tests. My doc just said stress without even looking at my labs.... which were pretty normal but still.... also have been told it is all in my head in another group.... i will rule out everything before i settle with it is really a breathing problem.... something has to be there with so many of us struggling..... especially us not even diagnosed with anything but guesses. Its unfair because this problem can be soooo bad and nobody can do a darn thing but make you a guinea pig and wait.... if it is a hypervent issue there has to be another way to help this for good. Besides breathing exercises. Who wants to do those all day. There has to be something else. We have to find it. All kt takes is one result to be missed or not taken seriously or one doctor to mess up to overlook something to make us clueless. I really feel it is something othar than just over breathing... WHY?

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@aea1205

@gabrielm do not give up with tests. My doc just said stress without even looking at my labs.... which were pretty normal but still.... also have been told it is all in my head in another group.... i will rule out everything before i settle with it is really a breathing problem.... something has to be there with so many of us struggling..... especially us not even diagnosed with anything but guesses. Its unfair because this problem can be soooo bad and nobody can do a darn thing but make you a guinea pig and wait.... if it is a hypervent issue there has to be another way to help this for good. Besides breathing exercises. Who wants to do those all day. There has to be something else. We have to find it. All kt takes is one result to be missed or not taken seriously or one doctor to mess up to overlook something to make us clueless. I really feel it is something othar than just over breathing... WHY?

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My doctor told me stress too, until I begged for another exam and they saw pericarditis. For 3 weeks he ignored my pleading. Then I ended up getting hospitalized. I had to drop him. Don't let them throw that stress stuff at you first. They should consider that after everything is exhausted. I've heard countless patients here getting cut off by doctors this way.

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@helena4000

My doctor told me stress too, until I begged for another exam and they saw pericarditis. For 3 weeks he ignored my pleading. Then I ended up getting hospitalized. I had to drop him. Don't let them throw that stress stuff at you first. They should consider that after everything is exhausted. I've heard countless patients here getting cut off by doctors this way.

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@helena4000

It is the easiest way for them. It is so not right.... my doctor sucks. He literally asks me what do you want me to do.... well for one, if he dont know he should refer me to someone else. I referred myself to my endocrineologist. They thought that was weird. But aomeone has to push through. I aint settling for stress. This is nothing like a panic attack. This is terrible and comes on for no reason. I coukd be happy having a blast and 10 minutes later down and out from air hunger.

Makes no sense!

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@aea1205

@helena4000

It is the easiest way for them. It is so not right.... my doctor sucks. He literally asks me what do you want me to do.... well for one, if he dont know he should refer me to someone else. I referred myself to my endocrineologist. They thought that was weird. But aomeone has to push through. I aint settling for stress. This is nothing like a panic attack. This is terrible and comes on for no reason. I coukd be happy having a blast and 10 minutes later down and out from air hunger.

Makes no sense!

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Did they give you an ultrasound stress test yet?

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