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.

@catsmeow1959

My dr. says it’s anxiety. When my dr. put me on Zoloft, it went away completely. However, over a period of many years the sob would show back up so my dr. just increased the dosage and that would help. The sob came back again and my dr. decided to add klonopin. It has really helped. Still get sob some but it has significantly improved. Hope you find help as I know how awful this sob can be.

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Glad medication worked for you too. Mine was anxiety also but I didn’t use medication. If you ever feel it ( as you say sometimes) what worked for me and many is just show it no importance at all. Be indifferent to it. Refocus on your day. Like I went from not being able to leave my house for half a year to living 100 symptom free. It’s just total acceptance. Grab the feeling by the hand and live every day looking out and forward rather than back and inward. Doesn’t mean you should try distract yourself so you don’t feel it. You live your day to the fullest with or without the symptom. This is just what I did, I’m no therapist.
Good luck, thank you for sharing.

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I wish people would differentiate between dyspnea and pseudodyspnea. It’s very simple you get checked by a pulmonologist. And they will tell you if you are indeed short of breath or if it is pseudodyspnea. Doctors are very good at their jobs.

I had this suffocating breathing symptom for three years and in all my time online talking to people. I never met anyone who had that gerd sob which google says causes pseudo dyspnea, I myself got diagnosed with hiatal hernia but then got told that hernia has to be huge and I mean huge like an extremely overweight person might get to effect lungs.

Look I’m no doctor I’m no expert. But I see myself in a lot of these comments. I wasted 3 precious years of my life constantly trying to fix this feeling , resisting this feeling, could never stop thinking about it. I refused to believe it was anxiety. Well because I didn’t understand how anxiety worked. It didn’t mean that I was having this fear to symptom everytime I felt the symptom which was 24/7 at some periods. It’s your body’s alarm going off incorrectly. And it’s because when it first went off incorrectly, you get scared and don’t know what it is or if it’s real and you treated it very very IMPORTANT. And because your body wants to survive it told your alarm this feeling is DANGER and when you feel DANGER your alarm is going to pump you full of adrenaline and cortisol to keep you alert to danger. So your body then gets more energy to reproduce this feeling. And it goes on and on and on. How does it stop. Well it won’t happen instantaneously. Well it stops my learning something sufferers have forgotten how to do. DO NOTHING. Think about it if this sounds like you it’s probably the one thing you haven’t done. You’ve eaten foods thought really hard about how to fix, googled ten thousand times. Doing nothing is the one thing you haven’t done. See when you do nothing when this thing shows, your body goes huh that’s not danger okay, and it won’t add onto all that stress and nervous energy in you.
It is a paradox this thing. YOU WILL ONLY GET BETTER WHEN YOU STOP TRYING TO GET BETTER. Even doing the correct things doing nothing if you allow it to be and then check “oh well is it gone no it’s not gone well that didn’t work it’s not anxiety I knew it” that’s the opposite of what I’m saying. You allow it not for the sake of getting rid of it but for the sake that you can refocus and live your day/week/year as you want to. SYMPTOM FREE IS NOT THE GOAL(although it will come) LIFE IS THE GOAL. Those like me, aren’t you sick of thinking about it allllllll day long. So get out and live your life to the fullest. And eventually when you don’t even care if symptoms die down or go entirely that’s when it happens. Because you see that you can live your life with this present or without this present.

What I suggest for new people who want to try what I did, is it is key to get out and active. Make your days as active as possible don’t sit around all day so you get bored and get involved again in measuring your symptoms again and again and again. Focus on your day and remember you don’t fix this it fixes itself.

I’m not a doctor or therapist. Your doctor is in charge of your mental and physical health.

Good luck everyone even if this post wasn’t for you

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Oh my goodness, I have finally found a place where what I have been experiencing my entire life is discussed and talked about! I too have that feeling of oxygen starvation when so many breaths are not complete or full and that leave me feeling starved. And like all of you, it is totally random. Sometimes it disappears for weeks or months but then suddenly appears again and I have to force yawns to get that deep satisfying breath feeling. Sleeping is normal, I can exercise just fine, don't have asthma, have never had allergies, weight is good, sometimes slightly anaemic, not depressed and quite happy with life. So WHAT causes this? My chest gets sore from trying to expand enough to get air which must happen every few breaths. I can remember as a child laying on my bed and trying and trying to get that satisfying deep breath feeling. I will reread all the comments and wonder if the 'hyperventilating' one is one I should look into. Also, I'm interested in the breathing method of the first comment that helped for so long. Thank you all, and I hope this thread continues!

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@amzakhan

As our symptoms the same bro? deep breath restriction or cannot take statisfy deep breath and normal breathing is fine no issue with that. I checked on 6 doctors all say its allergy and anxiety. No medicne worked for me except one tablet ebaget(10mg) for allergy which fixed my deep breath for 2 days( but dont use this medicine i got deadly sideeffect from this medicine sore throat rapid swallowing and dry mouth and not eated food for almost 5 days i drinked only juices. If you guys also have this breathing problem so we are in the same train.

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Indeed, allergies and anxiety can certainly affect breathing in many ways. It sounds like you did your homework by seeing doctors and obtaining some help. I'm glad the allergy medicine helped. That's a good sign! Maybe there are other solutions you can try on top of that medicine. I take two different allergy medicines at times during allergy season and that does seem to help my allergies. Wonder if you can talk to your doctor about trying another one to see if that further helps the breathing issue.

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Try using H1 and H2 blockers together. Long covid can create similar symptoms of air hunger, anxiety, gerd, etc and one of the best treatments for long covid is the combination of H1 and H2 blockers. It's important to use both or else it doesn't work. Zyrtec (cetirizine) is one type of H1 blocker, Pepcid AC (famotidine) is an H2 blocker. Both can be used daily. This has helped reduce my air hunger and acid reflux significantly.

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@gabrielm

Indeed, allergies and anxiety can certainly affect breathing in many ways. It sounds like you did your homework by seeing doctors and obtaining some help. I'm glad the allergy medicine helped. That's a good sign! Maybe there are other solutions you can try on top of that medicine. I take two different allergy medicines at times during allergy season and that does seem to help my allergies. Wonder if you can talk to your doctor about trying another one to see if that further helps the breathing issue.

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Yeah bro i visited a pulmongist after that but they said its due to too much emotional feeling and give me anxiety and deep sleep medicine which did not worked for me and that problem is still with me no matter i think or not think about it i stopped seeing doctors and waiting for itself recovering . Any way how are u know as your breathing issue solved ? I watched your posts from start to last...

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@amzakhan

As our symptoms the same bro? deep breath restriction or cannot take statisfy deep breath and normal breathing is fine no issue with that. I checked on 6 doctors all say its allergy and anxiety. No medicne worked for me except one tablet ebaget(10mg) for allergy which fixed my deep breath for 2 days( but dont use this medicine i got deadly sideeffect from this medicine sore throat rapid swallowing and dry mouth and not eated food for almost 5 days i drinked only juices. If you guys also have this breathing problem so we are in the same train.

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Have you seen a lung specialist? I have Pulmonary fibrosis and went to a class to teach me how to breath and the 8 week class helped me greatly.Not sure if you have seen a dr that will refer you to this class if the diagnosis is like my lung problem.Good luck/

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@veritasamo

Oh my goodness, I have finally found a place where what I have been experiencing my entire life is discussed and talked about! I too have that feeling of oxygen starvation when so many breaths are not complete or full and that leave me feeling starved. And like all of you, it is totally random. Sometimes it disappears for weeks or months but then suddenly appears again and I have to force yawns to get that deep satisfying breath feeling. Sleeping is normal, I can exercise just fine, don't have asthma, have never had allergies, weight is good, sometimes slightly anaemic, not depressed and quite happy with life. So WHAT causes this? My chest gets sore from trying to expand enough to get air which must happen every few breaths. I can remember as a child laying on my bed and trying and trying to get that satisfying deep breath feeling. I will reread all the comments and wonder if the 'hyperventilating' one is one I should look into. Also, I'm interested in the breathing method of the first comment that helped for so long. Thank you all, and I hope this thread continues!

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Hi @veritasamo, glad you found us! You're definitely not alone. You mentioned about being slightly anaemic. Do you recall what type of anemia it is, like what nutrient(s) you're low on? I remember my breathing improving very quickly early on when I supplemented with iron since I was slightly low in iron.

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@fields123

Have you seen a lung specialist? I have Pulmonary fibrosis and went to a class to teach me how to breath and the 8 week class helped me greatly.Not sure if you have seen a dr that will refer you to this class if the diagnosis is like my lung problem.Good luck/

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O my bro thats bad news. I hope best for u . treat that fibrosis is soon as possible to not increase . Can i ask whats your feeling in fibrosis can u describe so i can know some symptoms and yes i vistited pulmonogist and he say everything fine . I dont have any other symptom like cough fever and other single symptom just discomfort and deep breathing issue . How is yours ?

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@amzakhan

O my bro thats bad news. I hope best for u . treat that fibrosis is soon as possible to not increase . Can i ask whats your feeling in fibrosis can u describe so i can know some symptoms and yes i vistited pulmonogist and he say everything fine . I dont have any other symptom like cough fever and other single symptom just discomfort and deep breathing issue . How is yours ?

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I went to the Emergency at the hospital feeling very badly X-ray of the lungs showed pneumonia.once home still felt poorly my Allergy dr listen my lungs and send me right away to get a lung scan and that is how I found out I had pulmonary fibrosis.I see the pulmonary dr often with ct scans every 6 months,breeding test and then see the dr to read the results to me.The dr wants me to try medication and in may will be reevaluated and results of the lates test to dicede what to do next, The class the dr referred me to has taught me how to breath when in discomfort

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