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.

@gabrielm

Yes @tonyagregg, I'd like to keep in touch with you. Sounds like what you have is pretty similar to me. It's been much worse before, but it's stabled out. Still not gone by any means, but I can at least live with it. Let's stay in touch. Maybe we can tag team our research or let each other know if we find some kind of answers.

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Hi Gabrielm, I had the exact symptoms for 8 years now. Six months ago my dr suggested to take vitamin d2 supplements for another unrelated reason and since then my SOB is completely gone. I stopped the vitamin for 2 weeks and it came back! I am convinced my symptoms went away by taking vitamin d2.

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@tonyagregg

@gabrielm i tried 20 mg of prilosec and my doctor said she wanted me on something stronger and prescribed 40mg of protonix. The not only is it the strongest anti acid but it heals the esophagus. I hope you find an answe for yours. It doesnt hurt to try.

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Are you now fully recovered? Also for the PPI only 40mg daily ?

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@hoda2022

Hi Gabrielm, I had the exact symptoms for 8 years now. Six months ago my dr suggested to take vitamin d2 supplements for another unrelated reason and since then my SOB is completely gone. I stopped the vitamin for 2 weeks and it came back! I am convinced my symptoms went away by taking vitamin d2.

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Did you make test for Vit D? How long did u take it and at what dose? If you have the exact symptoms and recovered as u took VIT D then probably it was anxity

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@joey84s

Did you make test for Vit D? How long did u take it and at what dose? If you have the exact symptoms and recovered as u took VIT D then probably it was anxity

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I am pretty sure it was not anxiety. I am not a anxious person and I had the symptoms on and off for 8 years. I started seeing improvement after 1 week of getting the VIT D2. My lab work was normal for the past 3 years but the last one showed VIT D deficiency that is why my Dr gave me the supplements. It could be coincident but it worths talking to your Dr to see if VIT D2 supplements can help

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@hoda2022

I am pretty sure it was not anxiety. I am not a anxious person and I had the symptoms on and off for 8 years. I started seeing improvement after 1 week of getting the VIT D2. My lab work was normal for the past 3 years but the last one showed VIT D deficiency that is why my Dr gave me the supplements. It could be coincident but it worths talking to your Dr to see if VIT D2 supplements can help

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Great information , worth trying . By the way what was your VIT D test result?.
Am suffering VIT D deficiency, last time i checked it was 15 . But I ignored it

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@joey84s

Great information , worth trying . By the way what was your VIT D test result?.
Am suffering VIT D deficiency, last time i checked it was 15 . But I ignored it

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Mine was between 20-25 I do not remember the exact number. My dr prescribed me 50000 iu vitamin d2 for six months. One pill a week.

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I experienced shortness of breath about 6 mos after Moderna 1 vaccine, along with other really nasty symptoms, primarily bottomless fatigue, recurrence of old body infections. 3 old and one new, high ANa. No diagnosis, but group membership info has supported recrrence of very old EBV (mononuceosis) infection. A Mayo Connect member shared her protocol from Neuropath, and started taking 500 mg Lysine, plus 500 mg Olive leaf twice/day helped. I was simultaneusly taking a super prep of Monolaurin (Inspired Nutrition) twice/day. Two months later, no recrrence. Other EBV symptoms still ongoing, but glacially slow improvement with various treatments ongoing.

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@gillysmom

I experienced shortness of breath about 6 mos after Moderna 1 vaccine, along with other really nasty symptoms, primarily bottomless fatigue, recurrence of old body infections. 3 old and one new, high ANa. No diagnosis, but group membership info has supported recrrence of very old EBV (mononuceosis) infection. A Mayo Connect member shared her protocol from Neuropath, and started taking 500 mg Lysine, plus 500 mg Olive leaf twice/day helped. I was simultaneusly taking a super prep of Monolaurin (Inspired Nutrition) twice/day. Two months later, no recrrence. Other EBV symptoms still ongoing, but glacially slow improvement with various treatments ongoing.

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@gillysmom, thank you for sharing and I'm glad the protocol is helping you!

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I also have SOB. I have to yawn or sigh constantly to get a full breath of air. I feel tired all the time. I’ve been to many doctors but no one can figure it out. I will keep checking this thread to see if anyone figures out what causes this constant SOB

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Omg! I developed the EXACT same issue a few years ago and have been to many doctors as well. I get SOB, yawn constantly but not necessarily tired and have to sigh throughout day. Just recently I am exploring if this is a result of damage to the genitofemoral nerve attached to Psoas muscle during surgery. Search Psoas Syndrome and Shortness of Breath, very interesting!! Did you by any chance have any abdominal surgery ever? I also have bulging discs in neck and thought it might be because of that. I also have like a numbness on the right side of throat and dull pain in right upper chest right shoulder blade. Hopefully we can get to the bottom of it, I will keep checking this post and will keep updating.

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