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.

@jaspurc75

Howdy!I am 43 year old male and I am suffering from the same exact symptoms. It happens off and on but lately seemed like it happens more often. I do have GERD and it seems like nothing works. I tried PPI's, Prilosec, Omeprazole, and the only thing that does work some what is Zantac 150mg every 10 hours. My sister is my doctor and she specializes in obesity and diabetic medicine and many of her patients has the same thing. So she says the above method works best for them. Its such an annoying feeling and it drives me nuts at times. I cant work out hard all the time because it seems like I can only get a deep breath every 8th breath or so. So far I have had every heart test and passed them all with flying colors. I have recently been to the pulmonologist and I did all the PFT testing and I am waiting the results, but the tech said it looks great. It does seem if I dwell on it that I have it more often, but its hard not to dwell on it. I have an appointment with a GI doctor and I am going to ask if he can do an upper scope and see whats going on with my esophagus. When im sleeping at night I do at times will lay in a certain position, like on my side and when I take a deep breath its like I can hear like gurgling deep in my lungs, but not all the time. That kinda worries me but I have had CTA of the chest for PE's and its all normal and recently had chest xrays and they all normal. kinda running out of options :O

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@jaspurc75 You're in good company my friend! Sorry that you're going through this. I know just how you feel, as do many others. Are you overweight? That might contribute to your shortness of breath, but I doubt losing weight will 'cure' it. If you've tried PPI's and those don't work, @tonyagregg did mention something she is taking called Protonix, 40mg and it seems to help when other forms of medication did not. Have your doc also check for a hiatal hernia. I'm curious if there's a link there, since that's what I have. GERD does seem to be very common with those of us with this SOB issue. Keep us updated.

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An update to my diagnosis search, went in for sleep apnea results and turns out I’ve got a severe case of complex sleep apnea. Going on a CPAP trial in 2 weeks so I guess i’ll See if that’s the root of my weird breathing symptoms. Should definitely help with my lack of energy and focus

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@rub3n

An update to my diagnosis search, went in for sleep apnea results and turns out I’ve got a severe case of complex sleep apnea. Going on a CPAP trial in 2 weeks so I guess i’ll See if that’s the root of my weird breathing symptoms. Should definitely help with my lack of energy and focus

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@rub3n Thanks a lot for updating us. I'm glad that you were able to find some answers. Let us know how the CPAP trial goes and if it helps!

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@gabrielm an update. My thyroid ultrasound showed that i have a 7mm nodule on my thyroid and in appearance seems begin. My doctor has now referred me to an ENT being that the protonix has helped tremendously. She is not concerned about the nodule and doesn't feel like that is what is causing my SOB. I can tell you this...she wanted me to stop the protonix until i see my ENT because they may want to measure the acid in my stomach and they would not be able to get an accurate measurement taking the medication because it stops the stomach acid. I can say I am back to square one and it came back with a vengeance, so I am almost positive LPR is my problem. As soon as I know something from my ENT I will let you know.

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I have had shortness of breath for over 7 months straight now. I have been to a pulmonologist and ENT, two cardiologist and my 2 primary care drs. I’ve had several test done and been to the ER around 15x. They all tell me I’m clear and after they couldn’t find anything they told me it appeared to be anxiety ( which I really wonder) I had a very peaceful, calm life before this. It all happened one early morning. I just woke up gasping for air and it never went away. How did this shortness of breath start for others ? Also has anyone found a solution ? One more thing recently I have been getting this head pressure every now and then.

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@laurasue

I have had shortness of breath for over 7 months straight now. I have been to a pulmonologist and ENT, two cardiologist and my 2 primary care drs. I’ve had several test done and been to the ER around 15x. They all tell me I’m clear and after they couldn’t find anything they told me it appeared to be anxiety ( which I really wonder) I had a very peaceful, calm life before this. It all happened one early morning. I just woke up gasping for air and it never went away. How did this shortness of breath start for others ? Also has anyone found a solution ? One more thing recently I have been getting this head pressure every now and then.

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laurasue, I have had something similar to what you describe for about 2 years now. It started with a cough and lots of phlegm. I had an xray of my lungs which didn't show much of anything. I went to a doctor that advised a cat-scan, that an xray will not do the job with the lungs. The cat-scan did reveal that I have IPF (idiopathic pulmonary fibrosis) similar to COPD. There is no cure but I'm on OFEV to slow the process of the lung scaring. I've had to slow down some but I am still active and coping with it. Hope this helps.

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@tonyagregg

@gabrielm an update. My thyroid ultrasound showed that i have a 7mm nodule on my thyroid and in appearance seems begin. My doctor has now referred me to an ENT being that the protonix has helped tremendously. She is not concerned about the nodule and doesn't feel like that is what is causing my SOB. I can tell you this...she wanted me to stop the protonix until i see my ENT because they may want to measure the acid in my stomach and they would not be able to get an accurate measurement taking the medication because it stops the stomach acid. I can say I am back to square one and it came back with a vengeance, so I am almost positive LPR is my problem. As soon as I know something from my ENT I will let you know.

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Thanks for the update @tonyagregg! Sorry that your SOB came back, but glad you have some answers.

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@laurasue

I have had shortness of breath for over 7 months straight now. I have been to a pulmonologist and ENT, two cardiologist and my 2 primary care drs. I’ve had several test done and been to the ER around 15x. They all tell me I’m clear and after they couldn’t find anything they told me it appeared to be anxiety ( which I really wonder) I had a very peaceful, calm life before this. It all happened one early morning. I just woke up gasping for air and it never went away. How did this shortness of breath start for others ? Also has anyone found a solution ? One more thing recently I have been getting this head pressure every now and then.

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@laurasue, sorry that you have been dealing with this. So many of us know just how you feel! It's not a fun thing to have. Do you have any gastro issues that you know of? GERD, heartburn, esophagus issues, hiatal hernia, etc? Any thyroid issues that you know of? Asthma, lung function tests- I'm sure you've been tested for those? Anxiety is pretty much the 'catch-all', 'make-you-go-away' answer from doctors when they have no answers. We've all gotten that response a few times, so we've convened here for answers!

Mine, if I remember, started fairly gradually but I just noticed one day that I couldn't catch a deep breath and it never went away. It just kept getting worse. I took vitamin B-12 and iron and it seemed to temporarily make it go away, but I have no explanation for that.

Something that has helped me greatly is the Buteyko breathing method; https://www.learnbuteykoonline.net. It likely won't cure the issue but it does help a lot of people, including me. It made my SOB go away from a good couple of years, but then it came back, but I applied the method again and it helps. At this point it makes it manageable while I still search for answers.

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The next thing I am considering doing is submitting my case to https://www.crowdmed.com/. It's a crowd medicine community where you submit your medical case details and medical history and they submit your case to multiple doctors and specialists who look at your case, then come up with what they think is the likely cause. If they get it right, they get a bonus. I haven't done it yet because it's a little expensive and they don't take insurance, but I'm thinking it will at least be worth it to have my case looked at by multiple medical professionals. So something to consider for everyone.

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@gabrielm

@laurasue, sorry that you have been dealing with this. So many of us know just how you feel! It's not a fun thing to have. Do you have any gastro issues that you know of? GERD, heartburn, esophagus issues, hiatal hernia, etc? Any thyroid issues that you know of? Asthma, lung function tests- I'm sure you've been tested for those? Anxiety is pretty much the 'catch-all', 'make-you-go-away' answer from doctors when they have no answers. We've all gotten that response a few times, so we've convened here for answers!

Mine, if I remember, started fairly gradually but I just noticed one day that I couldn't catch a deep breath and it never went away. It just kept getting worse. I took vitamin B-12 and iron and it seemed to temporarily make it go away, but I have no explanation for that.

Something that has helped me greatly is the Buteyko breathing method; https://www.learnbuteykoonline.net. It likely won't cure the issue but it does help a lot of people, including me. It made my SOB go away from a good couple of years, but then it came back, but I applied the method again and it helps. At this point it makes it manageable while I still search for answers.

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I have had a lung function test it came back clear. No asthma. Thyroid came back clear as well. Iam seeing a gastroenterologist on the 25th but she said it was unlikely that was the case because my ENT saw no sign when he scoped me.

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