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.

@robinson

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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Thanks for the response. I have had a x ray and CT scan of my lungs. The test all came back Normal. I’m sorry to hear you have pulmonary fibrosis. I have read about that it’s quite scary

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Hey guys I have a question for anyone with more experience or knowledge in this field. I’ve been thinking about my sleep apnea diagnosis and how I’ve had 200 episodes of hyperventilation recorded in my results and the centralised apnea. For the last few days my breathing felt good, relaxed. I could breathe normally while relaxing. But today it’s just been, like trying to breathe near space. I was wondering, if maybe my brain just randomly kicks my lungs into hyperventilation mode? That maybe it’s a brain function issue. If it does it while I sleep I don’t see why it won’t do it while i’m Awake, and I sure as hell feel it. I’m not very knowledgeable but it makes some sense to me. Also with the centralised sleep apnea it’s said to be caused by brain function issues or by strokes and so on but I’ve never experienced such things.

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@rub3n

Hey guys I have a question for anyone with more experience or knowledge in this field. I’ve been thinking about my sleep apnea diagnosis and how I’ve had 200 episodes of hyperventilation recorded in my results and the centralised apnea. For the last few days my breathing felt good, relaxed. I could breathe normally while relaxing. But today it’s just been, like trying to breathe near space. I was wondering, if maybe my brain just randomly kicks my lungs into hyperventilation mode? That maybe it’s a brain function issue. If it does it while I sleep I don’t see why it won’t do it while i’m Awake, and I sure as hell feel it. I’m not very knowledgeable but it makes some sense to me. Also with the centralised sleep apnea it’s said to be caused by brain function issues or by strokes and so on but I’ve never experienced such things.

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Good morning @rub3n- Welcome to Connect. I sympathize with you. I do not have sleep apnea however I have COPD and emphysema and am very familiar with SOB. I'm glad that you are going into trial. We are not doctors so we can't diagnose or prescribe treatments. We can only make suggestions based on our experiences and what we have learned. ll of our functions re brain related but that doesn't mean that we have something wrong with our brains. With any new medicine it takes time to build up in your system. also it could just simple thing like not using the inhaler correctly. after several years of using mine (I use three) I found out that I wasn't mine correctly.

Here's some help. https://www.youtube.com/watch?v=hCAsW7OM9Ns&t=13s Let me know

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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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I have had the same symptoms since June 2018. Have been to so many doctors (pulmonary, heart, GI, ER). They all believe it’s mental but I am positive there is an underlying health issue. Thank you for giving me the idea to visit an ENT. Will explore that option and keep you posted.

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@biso

I have had the same symptoms since June 2018. Have been to so many doctors (pulmonary, heart, GI, ER). They all believe it’s mental but I am positive there is an underlying health issue. Thank you for giving me the idea to visit an ENT. Will explore that option and keep you posted.

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@biso- Welcome to Connect. I have SOB too. I have it as result of smoking for many years. Have you done any breathing function tests? This test will tell if you re breathing the correct amount of air and exhaling the correct amount too. Scans and Xrays don't always pick up everything.

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@rub3n

Hey guys I have a question for anyone with more experience or knowledge in this field. I’ve been thinking about my sleep apnea diagnosis and how I’ve had 200 episodes of hyperventilation recorded in my results and the centralised apnea. For the last few days my breathing felt good, relaxed. I could breathe normally while relaxing. But today it’s just been, like trying to breathe near space. I was wondering, if maybe my brain just randomly kicks my lungs into hyperventilation mode? That maybe it’s a brain function issue. If it does it while I sleep I don’t see why it won’t do it while i’m Awake, and I sure as hell feel it. I’m not very knowledgeable but it makes some sense to me. Also with the centralised sleep apnea it’s said to be caused by brain function issues or by strokes and so on but I’ve never experienced such things.

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@rub3n I totally agree with you about your sleep apnea. If it is central meaning from the brain I believe your brain can cause your breathing to be out of sync. Just like someone that has had a stroke their respiration change. If your sleep apnea causes you to stop breathing at night. Why wouldn't it effect it in other ways as well?

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@tonyagregg

@rub3n I totally agree with you about your sleep apnea. If it is central meaning from the brain I believe your brain can cause your breathing to be out of sync. Just like someone that has had a stroke their respiration change. If your sleep apnea causes you to stop breathing at night. Why wouldn't it effect it in other ways as well?

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That is just my thought!

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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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@gabrielm how long did you do this breathing exercise before it went away for a year?

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@tonyagregg

@gabrielm how long did you do this breathing exercise before it went away for a year?

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@tonyagregg The first time I did the exercises, it only took a couple of days and then my breathing was completely normal for a year. The symptoms came back at the end of year, and the 2nd time it took about 3 weeks for my breathing to be normal again the 2nd time.

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@gabrielm

@tonyagregg The first time I did the exercises, it only took a couple of days and then my breathing was completely normal for a year. The symptoms came back at the end of year, and the 2nd time it took about 3 weeks for my breathing to be normal again the 2nd time.

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Can u pls tell me what these miracle exercises are. I’m in need of a solution

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