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’m glad I found this group. I’ve had insane air hunger since being hospitalised with a vaccine injury in August 2021. Currently exploring the possibility of endothelial dysfunction as I have found that red wine sometimes stops the worst of the sensation, and suspect it may be due to nitric oxide. Anyone else experienced SOB following a jab?

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@vaxsux

I’m glad I found this group. I’ve had insane air hunger since being hospitalised with a vaccine injury in August 2021. Currently exploring the possibility of endothelial dysfunction as I have found that red wine sometimes stops the worst of the sensation, and suspect it may be due to nitric oxide. Anyone else experienced SOB following a jab?

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Did you try anxiety medication ? You may try magnesium supplements first to see if it does anything . May take a few days before you see any results.

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@vaxsux

I’m glad I found this group. I’ve had insane air hunger since being hospitalised with a vaccine injury in August 2021. Currently exploring the possibility of endothelial dysfunction as I have found that red wine sometimes stops the worst of the sensation, and suspect it may be due to nitric oxide. Anyone else experienced SOB following a jab?

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Hi @vaxsux, I've never heard of that kind of reaction to a vaccine, but it's a possibility. Have you talked to any doctors about it?

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@vaxsux

I’m glad I found this group. I’ve had insane air hunger since being hospitalised with a vaccine injury in August 2021. Currently exploring the possibility of endothelial dysfunction as I have found that red wine sometimes stops the worst of the sensation, and suspect it may be due to nitric oxide. Anyone else experienced SOB following a jab?

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Has this happened with other vaccines? Is it a a confirmed vaccine injury? It could be nocebo.

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@gabrielm

@cookie2009, I'm glad to hear that there's some improvement. That's interesting about what he said about it being about the feeling. I've wondered that for a long time, because most people here, including myself, have always had normal O2 levels which means we're definitely getting enough oxygen. It just doesn't seem to "register" in the lungs as the normal feeling. A few years back when I started the breathing exercises, it was like things synced up again for a while and then the problem came back. It's manageable and tolerable now, but I can't help but wonder that there might be some sort of disconnect. Do you plan on seeing other specialists in the future? I did see a few specialists some years ago to have a bunch of tests done, all of which came back normal.

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@gabrielm yes I am seeing another doctor again soon. As I feel the same way. I just feel like it has to be because of something. I just can't get my self to believe it's just a feeling or whatever because all though I've been pasting my breathing and doing exercises I feel like this is not the normal me and something has to be the cause I feel like. It's so aggravating to keep getting bills, bills but no answers. I really hope the next specialist can help. I will let you know if they figure anything out.

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@cookie2009

@gabrielm yes I am seeing another doctor again soon. As I feel the same way. I just feel like it has to be because of something. I just can't get my self to believe it's just a feeling or whatever because all though I've been pasting my breathing and doing exercises I feel like this is not the normal me and something has to be the cause I feel like. It's so aggravating to keep getting bills, bills but no answers. I really hope the next specialist can help. I will let you know if they figure anything out.

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@gabrielm also do you take any medications daily at all if you don't mind me asking?

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@cookie2009

@gabrielm yes I am seeing another doctor again soon. As I feel the same way. I just feel like it has to be because of something. I just can't get my self to believe it's just a feeling or whatever because all though I've been pasting my breathing and doing exercises I feel like this is not the normal me and something has to be the cause I feel like. It's so aggravating to keep getting bills, bills but no answers. I really hope the next specialist can help. I will let you know if they figure anything out.

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Yes definitely let me know! It’s tough to have to do various tests that come back normal but at least it rules things out and confirms that you’re healthy in other areas.

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@cookie2009

@gabrielm also do you take any medications daily at all if you don't mind me asking?

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The only daily medication I take is omeperazole for my GERD. how about yourself, do you have other issues that may even be unrelated to the breathing problem?

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I just had a ct scan of my chest at Mayo. This was because my local medical system took an X-ray that showed I had hyperinflation of my lungs consistent with COPD. Now thanks to Mayo I know my lungs are normal. However I have had difficulty with shortness of breath. Late afternoons I have uncontrollable yawning, which isn’t good because it is irritating to my left jaw which is painful. My chiropractor suggested a sleep study, which was also endorsed by the Mayo pulmonologist. So I will do that. Thanks so much for the information on the breathing exercises.

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@amyann722

Hi Gabe! I am so glad I stumbled upon your article. You are the first person to describe exactly what I have been battling with for about 3 years. I have the constant feeling of needing to take a deep breath and about 90% of the time , it is not satisfying. Mine started out as an occasional dyspnea and gradually got worse. Now I feel this shortness of breath all day everyday , with very minimal periods of relief. I have tried breathing exercises and they do not help at all. But maybe I need to try for longer stretches. I started running a few days per week about 2 years ago and it is torture to run, but I try to do it because it makes me feel healthy afterwards. It doesn’t get any easier though . Which after sometime, it should . I have the normal levels of anxiety that comes with being a parent of two and working full time .. and sometimes I wonder if this could be anxiety related because everything else is Normal but I do not have any other symptoms of anxiety what so ever and usually anxiety is situational- doesn’t last all day everyday. I would do anything for an answer and solution to this problem! It’s gotten so bad that it’s starting to affect my daily life . Thank you for sharing your story.

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My SOB came on out of nowhere. I tested positive for Covid 6 days later. All of the symptoms went away in two weeks but the sob stayed. I'm on month 16 now. I have some very good days, almost feel cured. Then it comes back in a wave of bad days. I have had all lung and heart tests come out normal. I was referred to a pulmonolgist but they didn't even examine me. Just said the x rays and the ct scan were found. Nothing further they could do. I've tried red light therapy, acupuncture, exercise, vagus nerve exercise, breathing exercise (4-7-8, Winn Hof, Buteyko, diaphragm. I've had massages, I walk a large dog daily. It's recovery/relapse over and over. Every single of the 4 general prac. doctors have said it's anxiety. I don't have sweaty palms, don't feel nervous, nothing. They have all tried to put me on anti-anxiety meds. I've seen a naturopath. $$$ worth of supplements. Sometimes I've taken an antihistamine which has worked off and on. I've had an endoscopy, nothing. Finally I relented and my doc put me on Prozac 10 mg. Nothing. Then 20, 30 and now 40 mgs. I don't know if it's working because according to notations on my calendar, I have the same amount of bad days and good days since this all started. I recently started working with a respiratory physiologist. She is helping me to retrain my breathing to tummy only. I also am to try to suppress any yawn or sigh by swallowing or sipping water. It's so hard sometimes. I have a machine to train my diaphragm to get stronger. I get worse with minimal exertion and have to lie down and slow down. I am giving it a 100% try. The prozac may be tapered off. When I started 30 mgs I felt it was (maybe) helping but that didn't last. I want to be referred to another pulmonoligist to see if there are any other tests. I want to make sure I don't have a pulmonary embolism

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