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.

I've been having this problem for as long as I can remember. It has always come and went, and became worse with anxiety. I noticed it usually was the worst during hot weather. For reference I can remember this as young as 8/9 and now I am 23.

2 years ago I had a major cerebrospinal fluid leak after about a period of 2/3 years since my last SOB "outbreak". While this didn't make my SOB symptoms return, I noticed that a lot of the symptoms caused by this(Allergies, ear ringing, sleep and memory issues as well as ear pressure issues) I've had since young childhood.

About a year ago the SOB symptoms came back after my fluid leak got a lot worse in the summer. I was unable to fall asleep, went to ER due to panic attacks etc. Even as I'm reading this recollecting this makes that feeling go back. However after a few months of this outbreak, painfully analysing this thread and anything I could find(Watching all of House MD included lol) I made a breakthrough connection, which is that the deep breaths I was taking were actually going back into my skull due to the negative pressure across that barrier. I realised this as I actually felt it coming out every time I did a deep breath.

As soon as I came to this realisation, while my SOB symptoms didn't go away, I wasn't getting anxiety anymore. I believe my symptoms must have been always caused by a small fluid leak through my childhood and only recently I have been able to connect it due to it getting worse(Lucky eh). Still waiting for treatment thanks to the NHS being what it is right now, but I feel hopeful as I finally know what's wrong.

If anything of this sounds familiar please try and get yourself tested for this(Snot juice in a test tube). I've never seen anyone mention this as a reason in this thread and I believe as I have never noticed this for as long as I have lived, this could apply to some of you.

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I have similar symptoms to yourself with normal blood oxygen levels, etc, but extreme shortness of breath. After finally receiving appropriate medical investigations, including vq scans and pulmonary function tests (including the 6 minute walk test), I have finally had my condition diagnosed as chronic thromboembolic pulmonary hypertension. The walk test had to be cancelled half way through as it drove my heart rate up to dangerous levels. Vq scans will show movement of blood and air in the lungs, in my case showing patterns of blockage of blood vessels.

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@barry98888

I have similar symptoms to yourself with normal blood oxygen levels, etc, but extreme shortness of breath. After finally receiving appropriate medical investigations, including vq scans and pulmonary function tests (including the 6 minute walk test), I have finally had my condition diagnosed as chronic thromboembolic pulmonary hypertension. The walk test had to be cancelled half way through as it drove my heart rate up to dangerous levels. Vq scans will show movement of blood and air in the lungs, in my case showing patterns of blockage of blood vessels.

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Hi @barry98888, I'm glad you have a diagnosis for your symptoms. It's always a relief to have a diagnosis because now you know what it is and how to manage the condition and the symptoms.

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Hello @barry9888. Every time I read these type symptoms; it is me all over again. After many hospitalizations and near-death episodes from not being able to get enough air in, I found out my vocal cords were bilaterally paralyzed. A person can still talk, eat and drink with this condition. If you want to know more, just click my profile and it is all there. The vocal cords are like partition doors that work together letting air in and out. If they are partially or fully paralyzed, the symptoms you describe would be spot-on. Best wishes to you.

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Hello so I have having similar symptoms. I feel like I have to breathe in with my mouth and when I try I can’t seem to get full air or barely air at all. I have tightness in my chest and sometimes I can feel pain in my stomach area/diaphragm. I been to lung doctors, ent, and heart doctors. They all said everything seemed fine. Does anyone know if this may be gas or diaphragm related ? Has anyone had any solutions. Right now I can barely sleep and I can’t have this for the rest of my life because I look funny trying to take deep breaths with my mouth in public just to get some air

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@dainn

Hello so I have having similar symptoms. I feel like I have to breathe in with my mouth and when I try I can’t seem to get full air or barely air at all. I have tightness in my chest and sometimes I can feel pain in my stomach area/diaphragm. I been to lung doctors, ent, and heart doctors. They all said everything seemed fine. Does anyone know if this may be gas or diaphragm related ? Has anyone had any solutions. Right now I can barely sleep and I can’t have this for the rest of my life because I look funny trying to take deep breaths with my mouth in public just to get some air

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Have a simple X-ray of your spine … perhaps there’s a pinched nerve. I had a herniated disc cussing my problems and once it was removed and a spacer was put in, I was fine …( after 91/2 years of being near me and searching for an answer at major hospitals in eastern U.S. and lots and lots of tests with no results. Good luck.

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@grandma72

Have a simple X-ray of your spine … perhaps there’s a pinched nerve. I had a herniated disc cussing my problems and once it was removed and a spacer was put in, I was fine …( after 91/2 years of being near me and searching for an answer at major hospitals in eastern U.S. and lots and lots of tests with no results. Good luck.

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I’m only 20 and a few years ago I did have a herniated disc. How certain are you that your herniated disc was on he cause of the sob ? If that’s the case I can try physical therapy and see if that helps. Thank you for the reply!

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@dainn

I’m only 20 and a few years ago I did have a herniated disc. How certain are you that your herniated disc was on he cause of the sob ? If that’s the case I can try physical therapy and see if that helps. Thank you for the reply!

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100% certain that it was the cause of my shortness of breath. After 9 1/2 years of dozens of tests… my husband thought of it. Before it happened I had been working out at the gym weightlifting and since I was 60, perhaps more prone to this happening? But we never put two and two together… we thought one of the doctors would 🙂 my husband was the one suggesting the X-ray of my spine awhich led us to a neurologist. In addition to having shortness of breath, I had what we thought was angina or chest pain in the left side and went down my left arm and my thumb and through the years my thumb got worse and then I became off-balance and that was the key I guess? The nearest surgeon performed an anterior cervical disckectomy with fusion at C5/6, which relived all of the above symptoms. I went from walking up two steps and stopping to breath to doing 26 flights yesterday ( were moving from level to steps now that I’m healed 11/2 years out and 74) good luck … let me/us know.

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@grandma72

100% certain that it was the cause of my shortness of breath. After 9 1/2 years of dozens of tests… my husband thought of it. Before it happened I had been working out at the gym weightlifting and since I was 60, perhaps more prone to this happening? But we never put two and two together… we thought one of the doctors would 🙂 my husband was the one suggesting the X-ray of my spine awhich led us to a neurologist. In addition to having shortness of breath, I had what we thought was angina or chest pain in the left side and went down my left arm and my thumb and through the years my thumb got worse and then I became off-balance and that was the key I guess? The nearest surgeon performed an anterior cervical disckectomy with fusion at C5/6, which relived all of the above symptoms. I went from walking up two steps and stopping to breath to doing 26 flights yesterday ( were moving from level to steps now that I’m healed 11/2 years out and 74) good luck … let me/us know.

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Will check it out and update you! Thank you so much

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You are so welcome… hope it is the answer as I would’ve loved to have had help anywhere along the way during my 9 1/2 years til I was healed.

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