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.

@yessir321

GREENT CAN I JUST SAY, DOES IT GO AWAY WHEN YOU RUN DOES IT GET EASIER TO BREATHE WHEN EXERCISING FOR LETS SAY TEN MINUTES? IF IT DOES ITS FAKE AND IMO GONNA BE ANXIETY CAUSED IF YOU GET WORSED BY EXERTION THEN I WISH YOU LUCK IN FINDING THE MEDICAL REASON

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Sometimes better during a walk. Haven't tried a run. I do have fibromyagia overlap with autoimmune.

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I’ve revisited this thread periodically over the last few months because I’ve also been experiencing this same issue. It’s awful, you lay in bed at night freaking out because you feel like your lungs are the size of peanuts and your chest hurts from trying to breathe all day. I tried breathing exercises, no dice. I went to the ER because I couldn’t catch my breath, they said my oxygen levels were normal, I felt crazy
It’s anxiety. I received medicine for anxiety, the acid reflux, and an inhaler and I already feel like I can breathe normally again. Even if you don’t think you have anxiety, please look into that possibility. I’ve continued to do breathing exercises before bed, and with all of this combined I’m sure the symptoms will continue to subside. Use that diaphragm correctly as well everybody!!!!!! Tummy goes out when breathing, not chest.

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@melpomenea

I’ve revisited this thread periodically over the last few months because I’ve also been experiencing this same issue. It’s awful, you lay in bed at night freaking out because you feel like your lungs are the size of peanuts and your chest hurts from trying to breathe all day. I tried breathing exercises, no dice. I went to the ER because I couldn’t catch my breath, they said my oxygen levels were normal, I felt crazy
It’s anxiety. I received medicine for anxiety, the acid reflux, and an inhaler and I already feel like I can breathe normally again. Even if you don’t think you have anxiety, please look into that possibility. I’ve continued to do breathing exercises before bed, and with all of this combined I’m sure the symptoms will continue to subside. Use that diaphragm correctly as well everybody!!!!!! Tummy goes out when breathing, not chest.

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First @melpomenea, sorry you were dealing with it. Second, I'm glad. you were able to figure out what it was and that you can breathe normally again!

I like what you said about the diaphragmatic breathing. Definitely help with breathing normal and good to use the diaphragm as much as possible when breathing.

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@melpomenea

I’ve revisited this thread periodically over the last few months because I’ve also been experiencing this same issue. It’s awful, you lay in bed at night freaking out because you feel like your lungs are the size of peanuts and your chest hurts from trying to breathe all day. I tried breathing exercises, no dice. I went to the ER because I couldn’t catch my breath, they said my oxygen levels were normal, I felt crazy
It’s anxiety. I received medicine for anxiety, the acid reflux, and an inhaler and I already feel like I can breathe normally again. Even if you don’t think you have anxiety, please look into that possibility. I’ve continued to do breathing exercises before bed, and with all of this combined I’m sure the symptoms will continue to subside. Use that diaphragm correctly as well everybody!!!!!! Tummy goes out when breathing, not chest.

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Hello,
I Just red your response, How was your breathing during the day?
I have episodes when I wake up during the night from time to time to try to take a deep breath. Also I notice when I have that episode in the morning I feel so tired and want to yawn all the time. And it’s so weird because I can breath it takes a seconds to focus and take a deep breath. And I don’t know what can cause this. I also going to pulmonologist in June to check my lungs.
I do also think that this might be anxiety but I tried some pills in the past and I can’t stand it. My body reacts so opposite and I can’t do it.
Thank you for your response

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@melpomenea

I’ve revisited this thread periodically over the last few months because I’ve also been experiencing this same issue. It’s awful, you lay in bed at night freaking out because you feel like your lungs are the size of peanuts and your chest hurts from trying to breathe all day. I tried breathing exercises, no dice. I went to the ER because I couldn’t catch my breath, they said my oxygen levels were normal, I felt crazy
It’s anxiety. I received medicine for anxiety, the acid reflux, and an inhaler and I already feel like I can breathe normally again. Even if you don’t think you have anxiety, please look into that possibility. I’ve continued to do breathing exercises before bed, and with all of this combined I’m sure the symptoms will continue to subside. Use that diaphragm correctly as well everybody!!!!!! Tummy goes out when breathing, not chest.

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I spent years being advised my own breathing, similar to yours, was anxiety and yet it turned out to be my liver. I experienced liver failure while working and then years of gall stones resulting from the variety of consequences. My entire breathing is belly breathing.

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@barry98888

I spent years being advised my own breathing, similar to yours, was anxiety and yet it turned out to be my liver. I experienced liver failure while working and then years of gall stones resulting from the variety of consequences. My entire breathing is belly breathing.

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Can you tell me more about your liver and gall stones?

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I have found that keeping the CO2 level down near 425 ppm seems to be making a difference. When we close the house up at night the CO2 level is very high in the morning and I can feel my lungs struggling. We open doors and windows and within an hour I can take full breaths. It requires juggling open doors with the AC during the day. CO2 monitors are relatively inexpensive. I purchased an Aranet4 through Amazon.

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@magdalena81

Can you tell me more about your liver and gall stones?

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My situation was relatively unique, involving both toxic exposures and intense workload during extreme temperatures. I still don't feel as though I have a full picture yet but know that there was evidence of acute liver failure with resulting rhabdomyolysis (muscle damage). When that happens it can overload the kidneys, causing their temporary failure. I have long had a condition called nephrotic syndrome, losing protein in my urine, and this was exacerbated by the event. The primary protein lost is called albumin, a protein produced by the liver, so increased loss of albumin and reduced ability to produce it results in a condition called hypoalbuminemia. it's kind of funny that I had this condition from the time my health crashed and yet no physicians ever worried about it. Hypoalbuminemia causes inflammation of the gall bladder wall, resulting in scarring/adhesions to surrounding tissues. When they removed my gall bladder, because of gall stone induced jaundice, a few years ago this was what they found. The formation of gall stones was likely related to my high cholesterol levels and the impaired liver function as the liver is required to clear excess cholesterol from the body. My test results, in light of this, show that doctors had spent years ignoring intermittent evidence of gall stones associated with my experience of bouts of intense abdominal bloating and vomiting. Like I said, my situation was kind of unique (or at least I hope it was). Since the local hospital decided that it was for the best to cover up their role in the screw up the situation is only about to be investigated. Several respiratory conditions can result from liver problems and I currently suspect my own to involve both restriction of movement of the diaphragm, which sits just above the liver, and portopulmonary hypertension. Two primary conditions relate to liver problems; hepatopulmonary syndrome and portopulmonary hypertension. I ruled out hepatopulmonary syndrome because life expectancy doesn't seem to be particularly good with it, and I would likely be dead by now if I had it.

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I tracked down a breathing specialist and after 1 session my “air hunger” which is exactly as you have described, began to sharply decrease. Now, just 5 days into my breathing exercises, it’s nearly gone. This is after about 4 years of suffering. My son who has it way worse than I had is scheduled for next month. This guy is the real thing. Read his credentials. I am grateful to have found him. His name is Ciaran McKeown at breathamy.com. Please note that he is not the one that created the breathing method that he teaches, but he did use it to solve his own problem, exactly like ours, plus his asthma. This breath technique that he teaches is absolutely life-changing, and very easy to learn.

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@mabrams50

I tracked down a breathing specialist and after 1 session my “air hunger” which is exactly as you have described, began to sharply decrease. Now, just 5 days into my breathing exercises, it’s nearly gone. This is after about 4 years of suffering. My son who has it way worse than I had is scheduled for next month. This guy is the real thing. Read his credentials. I am grateful to have found him. His name is Ciaran McKeown at breathamy.com. Please note that he is not the one that created the breathing method that he teaches, but he did use it to solve his own problem, exactly like ours, plus his asthma. This breath technique that he teaches is absolutely life-changing, and very easy to learn.

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https://buteykoclinic.com/the-buteyko-method/ This is more info on the breathing technique I used. It is simple and it works.

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