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.

@helena4000

My god, 20 years? I've been going through this for almost 3 months and I don't know how to cope. Doctors not really helpful. I too feel like this is a nightmare. Did they make sure to check that you don't have any kind of leaky valve regurgitation? Because it sounds like you have something that's reccurring. I started having this stuff almost three months ago right after I was running and got really overexerted, and then all of a sudden my chest kept hurting and my breathing isn't right. The doctors told me they suspected pericarditis, and have been treating me for that. On my scans they saw pericardial effusion, pleural effusion, and atelectasis. For me, it is like something in my chest locks up and I can't get a deep breath to go down. I also get this severe pain in the right side of my chest, but I swear I can feel a spot where it's more tender.... The doctors told me it was pleurisy, but I'm not so sure. My primary care doctor wants me to go for a mammogram. And then I still have cardiac scans coming up. Breathing issues are some of the worst things you can get because it is so hard to pinpoint the cause.

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I had an echo a year ago because of a murmur and it was ruled benign so I don’t think it’s a valve issue. Also, it’s not really worse with exertion. Thankfully I haven’t been suffering with this for 20 years nonstop — that is just the first time I noticed symptoms. (I was in early 20’s) I’m 41 now. Today it’s really bad again . I keep taking deep gulps of air but it doesn’t satisfy my need for air. My husband and family members think it’s all anxiety . I hope it is but don’t even know how to stop that. I can’t focus on my three kids (one is a baby) and just want to be able to live my life again.

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@nycmom

I had an echo a year ago because of a murmur and it was ruled benign so I don’t think it’s a valve issue. Also, it’s not really worse with exertion. Thankfully I haven’t been suffering with this for 20 years nonstop — that is just the first time I noticed symptoms. (I was in early 20’s) I’m 41 now. Today it’s really bad again . I keep taking deep gulps of air but it doesn’t satisfy my need for air. My husband and family members think it’s all anxiety . I hope it is but don’t even know how to stop that. I can’t focus on my three kids (one is a baby) and just want to be able to live my life again.

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Have the doctors already prescribed anxiety medication? Does it seem to help at all? My primary care doctor prescribed Xanax daily, but I'm still having issues where it feels like my chest is closing up, so I don't really think it's anxiety. Do you have any sharp back pains?

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@zeeal

You have been suffering unnecessarily for so many years my friend. Acid reflux sounds very simple and harmless but has some very very nasty side effects. I’ve been having the same shortness of breath and the same symptoms and believe me it will not go unless your acid stops seeping into your esophagus and throat causing your esophagus to narrow down and spasm. Moreover acid even gets into lungs. So please take a strong ppi like omeprazole and stay on it. Visit a gastro. Please don’t tak this advise lightly. I’ve been through it and I know how bad it is

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I am in this same awful boat. How many of those on this board got relief from getting the reflux under control? Also want to share that I have had some relief lately, but unsure if it is one of or a combination of these things: I'mtake 3 amino acids - Gaba, 5htp, and dlpa, as well as various supplements/vitamins (suggested in the book The Mood Cure) I have also been doing some exercises from Mike White breathing.com, and I have been eating a low carb diet, and I got a wedge pillow because apparently, sadly, I snore. I did Buteyko with a practitioner, paid a small fortune, and got relief at the outset, but found it torturous, and ultimately, the crappy sensations of not being able to get a deep breath, suffocation, etc, returned, and the exercises didnt really alleviate it. Like everyone else, I have been told its all in my mind - funny how all of our minds decided to make up the same horrid sensations

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Hi Im new here and I’m glad I stumbled on this post. Has anyone been told that this can be a Pulmonary Embolism? I’m suffering from the exact same symptoms. I do suffer from health anxiety so these kind of events make my anxiety 1000x worse. I was suffering from right side shoulder blade pain or a strain for about 2 weeks and with a massage and chiropractor it has pretty much returned to normal. However while having this upper back pain for about a week or so I found myself to be more anxious and having to take deep breaths to feel better. Those deep breaths were amazing. However, once the back pain went away it’s like it took the deep satisfying breaths with it. I tried to take a deep breath in the last few days and it almost feels like I only get one every 5-10 breaths that I take. When I lie down I am yawning feeling good and can take deep breaths. I go to the gym and work out without any problems. However once I’m walking or sitting and decide to try to take a deep breath I again find this void in my lungs.... ughhh has anyone come across a solution?

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@rigenadaku

Ok so I’ve been having the same exact symptoms as you. I read someone say it can be caused my anxiety, I was on anxiety medication that helped get rid of my anxiety BUT the SOB was ALWAYS there. For the past 2 years now, 24/7 a day I struggle with this. My relatives they had the problems to but I dont recall any of the taking deep breaths frequently or yawning to take a satisfying breath. They told me they had it sometimes. That was no help since mine is a part of my life now. The only time I dont feel the erge to take a deep breath is when I am super busy and am not aware of my breathing. As soon as I sit down, it starts. I’ve seen every doctor every specialist. Ive seen a natural doctor, ive even went to see a omish doctor. I feel like giving up! I live with pain everyday due to me trying to stop myself from taking a breath over and over just to get stuck. When I stop myself i feel so much pressure in my chest and throat. I used to drink vinegar in the morning for my GERD and it helped me with the lump and the pressure in my throat, i stopped when they went away, but the SOB never went away. I stopped my anxiety medication and am having withdrawals which sucks because I hate being on medication. There’s literally only ONE more hope for me and that’s going to see a therapist who ONLY specializes in a technique called “The Alexander Technique” this technique helps with the posture of your body, it helps you get rid of bad habits we have gotten used to and now our mind THINK we need to take a deep breath, when in reality we DONT! The more i take the deep breaths my body tells me to, the more exhausted and out of breath I am. The one I will be traveling to is in North Carolina and she knows exactly what I am going through because she has helped MANY with this issue. Her own husband had this issue before they knew eachother and he went to her for this issue and we personally spoke and he had the same story as me over 10 years ago. Everyone who is physically healthy and has this issue, let me reassure you, its ALL in our heads. Its a bad habit we have taught our bodies to want and NOT need! Mine started after a panic attack and my body got used to my panic attacks and hyperventilation to the point where this is apparently the new “norm” for my breathing. But it isnt! We DONT need to take these breaths, Our bodies, don’t need it.

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@rigenadaku - This is very interesting that you say this. From your start to end I’m starting to feel you are 100% right. I don’t think doctors (plural) would ALL just dismiss everyone with anxiety if they had some doubt this might be stemming from something more serious or easily treatable. Their reputations are on the line and also this is what they do. I feel like you are sooooo right when you say this may be in our heads. I found that mine started after a recent bout with a little anxiety. I don’t get panic attacks or big anxiety attacks either. However, I was under a pretty decent amount of work stress and I am also a borderline hypochondriac. I found myself for about a week having to take deep breaths every 5-10 minutes or so and they felt amazing! But, shortly after this anxiety started to simmer down I found the need to continuously try to take these deep breaths and falling short almost like I “broke” them. The more I focused that I wasn’t getting that breath, the more I tried and hence SOB feeling kicks in, anxiety starts to spike but that great feeling doesn’t return because now it seems that’s what we are focused on. It’s an evil and cruel cycle and I believe this is definitely a mind game for most of us in here. I feel like when I’m occupied with things, talking on the phone or whatever I breathe like a normal person should....involuntarily!!! Focusing on your breathing is actually an OCD disorder as well. Just relax your mind and try to not think about the breathing and everything seems fine. You’ll also find that when you really do need a deep breath and your body shoots for one that it’s actually there. But and the keyword here is BUT....let your body do it naturally. How did your appointment turn out in North Carolina?

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@janeh777

I am in this same awful boat. How many of those on this board got relief from getting the reflux under control? Also want to share that I have had some relief lately, but unsure if it is one of or a combination of these things: I'mtake 3 amino acids - Gaba, 5htp, and dlpa, as well as various supplements/vitamins (suggested in the book The Mood Cure) I have also been doing some exercises from Mike White breathing.com, and I have been eating a low carb diet, and I got a wedge pillow because apparently, sadly, I snore. I did Buteyko with a practitioner, paid a small fortune, and got relief at the outset, but found it torturous, and ultimately, the crappy sensations of not being able to get a deep breath, suffocation, etc, returned, and the exercises didnt really alleviate it. Like everyone else, I have been told its all in my mind - funny how all of our minds decided to make up the same horrid sensations

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hi @janeh777 I'm sorry that you have this. So many of us know exactly how you feel. I never got relief from getting the reflux under control. How is the Mike White breathing program? I once looked into it but chose the Buteyko method since I couldn't find much information on Mike White besides his website. Does it help? I did Buteyko pretty intense at first and it helped a great deal, but good thing is you don't need to be as intense with it when you feel better. I have tapered off since then and just do every other day Steps exercise (which is easiest for me) about every other day to manage my breathing. But like you, the method hasn't made it go away completely, just makes the SOB tolerable.

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Hello all there is something called sighing dyspnea.. it has same symptoms as SOB and excessive yawning. Check out the attachment. I will share some more info soon ..

Shared files

Sighing dyspnea chck (Sighing-dyspnea-chck.pdf)

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@ssgaurav2000

Hello all there is something called sighing dyspnea.. it has same symptoms as SOB and excessive yawning. Check out the attachment. I will share some more info soon ..

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I found this sighing dyspnea too. Very interesting in terms of overlap of symptoms. Sometimes I am 100% convinced there is something going on in my lungs and then other times I don’t know if it is stress related .i guess both could be true . I went out a few nights ago and had 2.5 drinks and during dinner /drinks and even after my breathing didn’t bother me at all. Even the next morning it was okay. But two days later it’s bad again .

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@ssgaurav2000

Hello all there is something called sighing dyspnea.. it has same symptoms as SOB and excessive yawning. Check out the attachment. I will share some more info soon ..

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@ssgaurav2000 Interesting read. I hadn't come across this in all my research. This seems to be the only thing on it; I haven't found anything else. There's no apparent cause or treatment other than just reassure patients. But very interesting read. It might be another name for hyperventilation syndrome.

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@gabrielm

@ssgaurav2000 Interesting read. I hadn't come across this in all my research. This seems to be the only thing on it; I haven't found anything else. There's no apparent cause or treatment other than just reassure patients. But very interesting read. It might be another name for hyperventilation syndrome.

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I asked my pulmonologist about sighing dyspnea and he had no idea what I was talking about....it could very well be an outdated term for something though

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