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.

Profile picture for Gabe, Volunteer Mentor @gabrielm

Hi @kka, how are your symptoms? I know you had Covid sometime last year and you also posited that your breathing issue could also be from acid reflux. Has your breathing improved since then?

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Hi @gabrielm

That's nice you remembered. I stopped taking the acid reflux meds ( didn't want to continue them for long term) and I started noticing the breathing issue again. However, even when I was taking the meds, I'm not sure if my breathing actually changed or if I just stopped noticing it because my acid reflux wasn't bothering me as much. That's why I'm wondering for those that say they have had this issue "on and off", do they mean that they just stopped noticing it for some time period (maybe distracted by something else) or did their breathing actually change? Here is an interesting article that claims that this issue could be psychological caused by a number of triggers:
https://www.frontiersin.org/articles/10.3389/fphys.2018.00782/full

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Profile picture for ayilmaz12358 @ayilmaz12358

Hello everyone, i hope you all are doing fine. I have had the same issue for a couple years now. I am hear to tell you that there is nothing wrong with you. The deep breaths we take, its completely normal. The only thing that makes it a issue for us, is that we are paying too much attention to it, because we think there is something wrong. Everybody takes a deep breath like every 5 minutes or so, because otherwise our lungs would collapse. The thing is, everybody does it unconsiously, we pay attention to it. What we do have is OCD. You need to go see a psychologist, and learn to let go of the feeling, and learn to breath shallow, so that nobody can hear your breathing. A healthy breathing is a quite breathing. And please remember you are fine, you just need a little help to learn to accept and control it.

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Hi @ayilmaz12358, thank you for stopping in and sharing. I think for many of us there certainly may be an element of paying too much attention to the breathing. There are a variety of causes and triggers for different people, and I think dealing with this sort of thing can lead to focusing on it too much. Or perhaps some people's breathing becomes "off" for whatever reason and so it's worth it to try various things like breathing exercises to get it back on track. It's also good to reassure others that we're going to be ok. Many people may start to think something is seriously wrong (like I did when it first started for me) and learning how to cope with it and manage symptoms helps with the mental aspect of it. Valuable insight, thanks again for sharing!

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Hello everyone, i hope you all are doing fine. I have had the same issue for a couple years now. I am hear to tell you that there is nothing wrong with you. The deep breaths we take, its completely normal. The only thing that makes it a issue for us, is that we are paying too much attention to it, because we think there is something wrong. Everybody takes a deep breath like every 5 minutes or so, because otherwise our lungs would collapse. The thing is, everybody does it unconsiously, we pay attention to it. What we do have is OCD. You need to go see a psychologist, and learn to let go of the feeling, and learn to breath shallow, so that nobody can hear your breathing. A healthy breathing is a quite breathing. And please remember you are fine, you just need a little help to learn to accept and control it.

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Does anyone find exercise / movement brings it on? Get your spine checked. I had a breathing problem caused by a pinched nerve. Good luck.

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Profile picture for kka @kka

For those that have said they had this condition "off and on", do you recall if in your off periods you just happened to forget about the breathing? Perhaps distracted by something else during that time? Or were you still aware of your breathing, but it actually felt normal?

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Hi @kka, how are your symptoms? I know you had Covid sometime last year and you also posited that your breathing issue could also be from acid reflux. Has your breathing improved since then?

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For those that have said they had this condition "off and on", do you recall if in your off periods you just happened to forget about the breathing? Perhaps distracted by something else during that time? Or were you still aware of your breathing, but it actually felt normal?

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Intentional breathing? I do a count of 8 in, hold for 4, exhale for 8. Not fast. Repeat a few times and may settle down. I also have fibro and find that I take half breaths often, so a morning walk helps loosen up my chest and I breathe more normally. Still, when I have sat awhile or am tired, lots of yawning. And, some issues when I first lie down at night.

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Profile picture for faithrabbiosi @faithrabbiosi

I have this. I'm 38, RN, and have had this happening for years on and off. For me, it's a psychological breathing disorder. I too would feel this uncomfortable sensation in my chest that begs for a deep, satisfying breath. But giving into that need only causes too much oxygen to enter the blood and in response: an increase of CO2 output. Low CO2 levels in the blood cause this to become a vicious cycle- we need this in the proper amounts. And the more deep breaths I allow myself to take, the faster the whole cycle can begin again, even after feeling normal for a time. More deep breaths cause more air hunger because your body knows exactly how it needs to breathe and you must let it autonomically do this or the blood gasses destabilize. Blood chemistries aren't alarming, but I wonder what your blood gasses would look like when you're really having a hard time. When I feel that need to take a deep breath, I do, but then I wait a few seconds before inhaling again to allow the CO2 levels to go back up. Then I tell myself, I'm not doing this, and distract myself so that my body can resume its natural breathing. And it leaves me alone for the most part. But it's there, sometimes flaring up yet I have control of it now that I understand it.

I'm really glad to see I'm not alone, thank you so much for your post! Let me know how you're doing and I hope this helps some.

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@faithrabbiosi, thank you for sharing your story. I know many others including myself have considered that focusing too much on our breathing can exacerbate the feeling and symptoms and being distracted helps with keeping the mind off the symptoms. It could be psychological more than physiological, and the good thing is that there are mental and breathing exercises to help with symptoms and help the breathing return to normal. Have you found specific ways to manage your symptoms, or just distracting yourself?

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Profile picture for jess26 @jess26

Hello
I know these comments are from 2019 but I recently came across them and I have the same symptoms! I am constantly hungry for air and feel the need to yawn or take very deep breath to satisfy my needs for air!
I went to the doctors and everything came back 100% okay and I do not have asthma.
I was wondering if everyone has found a solution to this?
Thanks in advance

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Hi @jess26, I'm glad you found the forum. It's definitely very active with new people discovering it at least weekly who have similar symptoms. I know there are tons of pages of comments, but if you have time, I would skim through as many comments as possible and just sort of skip through different pages to see what others have done. While some have found somewhat of a cause of their breathing issue, most others are finding ways to deal with it while we all search for answers.

How long have you been dealing with this? Is this something new for you or have you been dealing with the symptoms for some time?

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Profile picture for karlleyy1994 @karlleyy1994

I am 28 years old and I'm having the same problem. It happens on and off can last for weeks, couple days, a month. I would say it's been going on for probably at least six or seven years maybe even longer.
Like I read that someone said it's shortness of breath accompanied by yawning or sighing or even feeling the need to burp sometimes I guess to try to get air, I'm not sure.
When I try to take a deep breath it's like I can feel my chest getting really tight right before a deep breath would happen and then it doesn't happen. After a while of trying and not being able to get a deep breath it starts to really starts to become an issue. If I do any kind of work or physical activity while this is happening after like 10 minutes I feel exhausted and like I need to take a break and of course yawn and try to take a deep breath but I just feel completely wore out and of course, out of breath. I don't know how else to explain it. If I'm doing something physical then I feel like it kind of helps me keep my mind off of it so it's not as bad but it still continues to happen. But then if I like lay down or sit down for a long period of time I feel like I focus on it more and it makes it even worse and it makes me want to freak out. If I lay down it makes it even harder to try to believe because I feel like my chest is heavier or something. This it has happened continuously for long enough that I've went into full-blown panic attacks on multiple occasions.
I don't have allergies I don't have acid reflux I don't have gerd I don't have sinus problems or anything like that. And I do have depression and anxiety but I feel like for some reason it might not be the case. Cuz it happens even when I'm taking my medication. But I feel like even if it was the case it would only happen when I'm having an anxiety or panic attack or maybe hours prior to that or hours after.

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Hi @karlleyy1994, I'm sorry you're dealing with this. I know there are a lot of comments, but it would be worth it to go through at least a few pages to see what others have done to help their symptoms. For me, I do breathing exercises, physical exercise with controlled breathing and eating as healthy as I can.

Though you mentioned you don't have allergies or GERD, have you been tested for those by a doctor? Have you considered getting various tests done to rule anything out?

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