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.

@tatianar

Thank you, and yes I will be combing through these responses and see what I can apply. That would be amazing if someone found a cure that could be the answer no one has tried yet. Could there possibly be something going on that is rare and undiscovered by the medical community as of yet? That thought has crossed my mind. Could be why there is no way to detect it yet through any testing available.
Thank you very much for welcoming me.

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@tatianar- Good morning. Not everyone has SOB for the same reason. As you will read, some people are overweight, some people have GERD, some heart problems, some have organs that aren't normal, lung disease or cancer, sometimes over-exercising. and some have a combo of these or more. Since there are so many possible causes for this I don't see how there can be one reason. I certainly wish that I had an answer!

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@qbug

One of my fears with this "disorder" is going under anesthesia. Did you find there was any issue with that?

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Me too!!!! Going under anestesia is actually one of my delimmas at the moment. I have a surgery that I keep rescheduling, because I'm trying to wait until I can breathe. Because the risks of breathing problems and anestesia are well known. My doctor thats been running all these tests for me that come back normal, is insisting that I'm fine and can be cleared for surgery, but he doesn't actually believe that I'm having the struggle that I am with my breathing simply because of my tests all being normal. Its a scary thought to think, it I follow his advice and go ahead with the surgery, and then some complication arise such as respiratory failure. Its not an absolutely necessary surgery, it can be put off for a while longer, and im hoping to find some relief for my breathing or at least some answers, before I go ahead and schedule a date for surgery... which I hope can happen sometime..

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@merpreb

@qbink - I think that you might be looking at all of the "what ifs" and it's driving you to worry even more. I do this all the time and it drives everyone around me nuts. During surgery, you are intubated. A machine breathes for you. You are carefully monitored for the level of gas exchanges to make sure that your O2 level is high enough. Anesthesia is carefully monitored. I found this simple video. You probably are familiar with all of this. Please rest assured that an OR team does everything it can to make sure that you stay healthy during any operation. My second lung operation was very long. It was 7 1/2 hours. I had already lost my lower right lobe 10 years before. My second operation was on my other lung. Needless to say, I'm here to talk about it! What have you done prior to your SOB to handle problems so that you can come to a peaceful understanding?

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@qbink - Good morning. Are you feeling any better today?

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Hi Gabriel,
How are you doing?
Are there any updates yet on your condition?
I read your post and thought I register to share some thoughts with everyone.
This condition started with me few months back, probably before announcing Coronavirus as a global pandemic.
3 things happened with me that I suggest were the reason this thing started with me:
1. I was having cold, so my nose was close, and I was exhaling strongly to get my nose open, so this might have done something inside my lungs.
2. I was a smoker, and quite suddenly, whereas should have quitted gradually, so that might be a reason.
3. I had a strong massage, after which things started, so it might be some pressure points or when the guy were pushing my back (facing lungs) hard, otherwise I was almost 1 hour lying on my abdomen for the back massage, so I suspect when he was massaging me, and turning me left and right, up and down, probably some acid from my stomach went backwards to lungs side.

Those 3 points are the main reasons I suspect one of them or two is the reason this phenomenon started with me, because between each one probably a week or two, I remember exactly, so I suspect them.

I was diagnosed with acid reflux, so I am currently taking medicine called Nexium 40, If any improvement happens, I will let you guys know.
The reason doctor said Acid Reflux is this shortness of breath + too much saliva + other symptoms.

I have done all heart diagnosis, other diagnosis, exhaling in a machine, Helicobacter pylori test, all were ok no problem.

By the way, during that period I was eating very little to reduce weight, so I wonder if this has anything to do with that, maybe the abdomen shrinks and causes acid to reflux to something!!

Other people says it might be IBS related "irritable bowel syndrome"
God knows what causes it guys, will keep you posted.

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@merpreb

@qbink - Good morning. Are you feeling any better today?

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Hi, can you see my reply, I put some good findings

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@favilavir

Hi, can you see my reply, I put some good findings

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@favilavir- Welcome to Mayo Connect. Yes, we can see your complete post and there are very good things on it. I'm sure that Gabriel will be with you shortly. How long ago were you put on Nexium?

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@favilavir

Hi Gabriel,
How are you doing?
Are there any updates yet on your condition?
I read your post and thought I register to share some thoughts with everyone.
This condition started with me few months back, probably before announcing Coronavirus as a global pandemic.
3 things happened with me that I suggest were the reason this thing started with me:
1. I was having cold, so my nose was close, and I was exhaling strongly to get my nose open, so this might have done something inside my lungs.
2. I was a smoker, and quite suddenly, whereas should have quitted gradually, so that might be a reason.
3. I had a strong massage, after which things started, so it might be some pressure points or when the guy were pushing my back (facing lungs) hard, otherwise I was almost 1 hour lying on my abdomen for the back massage, so I suspect when he was massaging me, and turning me left and right, up and down, probably some acid from my stomach went backwards to lungs side.

Those 3 points are the main reasons I suspect one of them or two is the reason this phenomenon started with me, because between each one probably a week or two, I remember exactly, so I suspect them.

I was diagnosed with acid reflux, so I am currently taking medicine called Nexium 40, If any improvement happens, I will let you guys know.
The reason doctor said Acid Reflux is this shortness of breath + too much saliva + other symptoms.

I have done all heart diagnosis, other diagnosis, exhaling in a machine, Helicobacter pylori test, all were ok no problem.

By the way, during that period I was eating very little to reduce weight, so I wonder if this has anything to do with that, maybe the abdomen shrinks and causes acid to reflux to something!!

Other people says it might be IBS related "irritable bowel syndrome"
God knows what causes it guys, will keep you posted.

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Hi @favilavir, I have been able to at least manage this condition for a while now, some days worse than others, but mostly fairly stable.

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My SOB started during/ after a cold. There are a few of us here. I did end up in the ER where I was told my potassium was low. For me it's related to acidity. Once I got that under control the SOB disappeared. In the beginning it felt more mechanical...the breath would 'catch' or it felt like I was restricted / blocked from taking a deep breath. Toward the end I think it was just silent heartburn. My theory is it started with acidity, exacerbated by not being able to breathe with the cold ( breathing alkalizes the body), possibly dehydration too, then moved to alkalosis/ being too alkaline which is dangerous so my body blocked me from deep breathing for a while, then it resolved back into acidity which triggered intermittent SOB, which is what lots of people walk around with... dangerous but not life threatening. Acid rises up, burns lungs, creates pressure which feels like shortness of breath. It's just a theory though.

If it's related to acidity, nexium/ pepcid might not be enough...try otc tums which is calcium carbonate, mylanta, which is magnesium hydroxide or other mineral complexes ie coral calcium if you're not calcium sensitive. Sometimes the old ways are the best ways. Acidity happens when the body lacks sufficient bases...calcium, potassium, magnesium in alkaline forms or bicarbonates. The acidic forms of minerals make the problem worse. Learned that one the hard way. Try meditation or deep breathing for a few weeks and see if it helps. Deep breathing alkalizes the body. The lungs help the body regulate pH. If you hyperventilate you become too alkaline so you're told to breathe in a bag to raise CO2. The process works in reverse as well...if you are too acidic taking oxygen deep into the lungs buffers acidity.

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Hi Everyone, I'm just checking in to share some of my latest experiences. I feel better, though it's not 100% yet, I think I have a handle on this.

What really helps is breathing exercises. Breathing in the nose, and exhaling through pursed lips. I'm doing it just randomly during the day, and every time I cannot take a deep breath - then I usually can. Some stretching exercises are also great, like adjusting my position, put my hands in the air, and stretch my chest and sides.

3 days ago I visited a masseur, he eased all my breathing muscles, starting from my abs to my neck. It felt like torture, but now I feel relaxed muscle-wise. He also pointed out how stressed I am and how unnecessary it is.

I started meeting with friends in person (the first wave of COVID here is almost over, we're free to meet anyone). I managed to spend an entire weekend in the countryside, listening to birds chirping and having a wonderful company, talking about my work-problems and the things I'm stressed about. During the weekend my breathing was mostly okay, which made me even more relaxed.

I started cycling again longer distances. My legs are dying and I'm extremely slow, but during cycling, I can more easily regulate my breathing, because my belly can freely move.
Breathing exercises help a lot. While cycling I'm also inhaling through my nose, and when I cannot catch the necessary deep breath, I exhale with pursed lips. Then I can take a deep breath.
During my last ride yesterday, I had a conflict with a driver. Both of us were stupid, but he was twice the size of me and pretty aggressive, and if my boyfriend didn't tell him I was totally responsible and we're sorry, I would've been beaten badly... After it was over and he drove away, my boyfriend started scolding me, and knowing I was acting stupid and made another mistake, I started crying and couldn't breathe at all. Never happened this before. At that exact moment, I knew most of the things are due to anxiety and stress. I managed to calm down with the above breathing technique, but it was not easy. I'm telling this because I was so against the idea that it is caused by stress. But it seems my SOB is definitely stress-related. I'll have to work on these issues for sure.

One more thing I wanted to mention is related to PPIs. So many of you are taking PPIs for longer period. Please, be aware that PPIs cause significant magnesium deficiency. After the 3rd day, I had a terrible headache, low blood pressure, and almost fainting. I'm taking now 500mg magnesium-orotate, this one doesn't cause diarrhea and I felt much better from the day I started it. For my anemia, I'm also taking iron, and I take the magnesium with selenium, Vitamin E, B complex, Omega3, and D3. With the iron, I'm taking folic acid, zinc, and vitamin-C.
Another plus for magnesium is that it helps with stomach issues and helps to clear the lungs. I started coughing up some mucus which was probably there since my latest lung infection in March.

I hope it helps with at least one of you!

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@lidiaboglarka

Hi Everyone, I'm just checking in to share some of my latest experiences. I feel better, though it's not 100% yet, I think I have a handle on this.

What really helps is breathing exercises. Breathing in the nose, and exhaling through pursed lips. I'm doing it just randomly during the day, and every time I cannot take a deep breath - then I usually can. Some stretching exercises are also great, like adjusting my position, put my hands in the air, and stretch my chest and sides.

3 days ago I visited a masseur, he eased all my breathing muscles, starting from my abs to my neck. It felt like torture, but now I feel relaxed muscle-wise. He also pointed out how stressed I am and how unnecessary it is.

I started meeting with friends in person (the first wave of COVID here is almost over, we're free to meet anyone). I managed to spend an entire weekend in the countryside, listening to birds chirping and having a wonderful company, talking about my work-problems and the things I'm stressed about. During the weekend my breathing was mostly okay, which made me even more relaxed.

I started cycling again longer distances. My legs are dying and I'm extremely slow, but during cycling, I can more easily regulate my breathing, because my belly can freely move.
Breathing exercises help a lot. While cycling I'm also inhaling through my nose, and when I cannot catch the necessary deep breath, I exhale with pursed lips. Then I can take a deep breath.
During my last ride yesterday, I had a conflict with a driver. Both of us were stupid, but he was twice the size of me and pretty aggressive, and if my boyfriend didn't tell him I was totally responsible and we're sorry, I would've been beaten badly... After it was over and he drove away, my boyfriend started scolding me, and knowing I was acting stupid and made another mistake, I started crying and couldn't breathe at all. Never happened this before. At that exact moment, I knew most of the things are due to anxiety and stress. I managed to calm down with the above breathing technique, but it was not easy. I'm telling this because I was so against the idea that it is caused by stress. But it seems my SOB is definitely stress-related. I'll have to work on these issues for sure.

One more thing I wanted to mention is related to PPIs. So many of you are taking PPIs for longer period. Please, be aware that PPIs cause significant magnesium deficiency. After the 3rd day, I had a terrible headache, low blood pressure, and almost fainting. I'm taking now 500mg magnesium-orotate, this one doesn't cause diarrhea and I felt much better from the day I started it. For my anemia, I'm also taking iron, and I take the magnesium with selenium, Vitamin E, B complex, Omega3, and D3. With the iron, I'm taking folic acid, zinc, and vitamin-C.
Another plus for magnesium is that it helps with stomach issues and helps to clear the lungs. I started coughing up some mucus which was probably there since my latest lung infection in March.

I hope it helps with at least one of you!

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Years ago I was prescribed Nexium and it triggered magnesium deficiency for me as well. My throat seized up and I had difficulty getting food down. Very scary. Stopped the Nexium and started the magnesium and the issue resolved. Heartburn resolved too. Magnesium has been key to me getting rid of my SOB this time as well as well as lifestyle changes.

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