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.

@camomma

Exactly the same. Nothing at night. Just during the day. Today was extra bad. I had caffeine and that's not typical for me. I'm not sure if that made it worse. Doctor's still can't figure it out besides saying it is anxiety and prescribing medications.

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I've been having this since Dec. 2020. The problem I have with diagnosing it as Long Covid is the cause. My breathing issue started Dec. 14, 2020. I went to a dr. and was diagnosed with anxiety and prescribed Buspirone. I had only been taking it five days and did not get tested for covid, when I started getting symptoms of fever, sore throat, etc. Tested positive. If I had tested when the breathing started I would have a better assessment of whether it was Covid, anxiety, or just a breathing pattern disorder. I'm currently on Prozac 40 mg daily and I had a Zoom series of sessions with a breathing pattern disorder physiologist out of the UK. I practice the breathing twice a day. Every day since the onset I have written on a calendar whether it was "good" or "bad". That was just so I could see if I was improving. I have improved, quite a lot. But overall, it's recovery/relapse and about the same every month. In June I had 20 good days and 10 bad. That's pretty consistent lately but it's slowly getting better.
I still have two cups of coffee in the morning but now I do 1/2 caffeine, 1/2 decaf.

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@camomma

Exactly the same. Nothing at night. Just during the day. Today was extra bad. I had caffeine and that's not typical for me. I'm not sure if that made it worse. Doctor's still can't figure it out besides saying it is anxiety and prescribing medications.

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@sheebacat

You certainly have more power in your lungs than me! I take mine in the car with me to practice while sitting. I walk a big dog daily and I practice the diaphragm breathing without it. Most of the time I'm lying down with a slight recline. Good luck!

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Or maybe I’m just full of hot air. I don’t know. I get some resistance and by the time I’m don’t with my 30 deep breaths i’m ready to quit. I feel like I’m getting some results with my breathlessness. May just be wishful thinking but it feels like it. I try and do min sitting upright or walking like they showed in the video I watched.

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@dcm8299

Or maybe I’m just full of hot air. I don’t know. I get some resistance and by the time I’m don’t with my 30 deep breaths i’m ready to quit. I feel like I’m getting some results with my breathlessness. May just be wishful thinking but it feels like it. I try and do min sitting upright or walking like they showed in the video I watched.

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Keep it up. She told me at least 8 weeks daily to see an improvement. It's 9 weeks for me. I know my diaphragm is stronger. I think it's working.

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@gabrielm

@kevink, interesting that it doesn’t bother you at night. That’s how it was for me too. Bothered me during the day but I could sleep fine at night. So obviously there’s normal breathing at night but with the air hunger feeling during the day. Do you still have asthma or did it go away as you grew from childhood?

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I do not have asthma anymore, I grew out of it by the time I was in my 20s. I honestly think mine is related to gastrointestinal issues. Like I said I've had excessive belching in the last few years a little before the breathing issues started.

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@kevink

I do not have asthma anymore, I grew out of it by the time I was in my 20s. I honestly think mine is related to gastrointestinal issues. Like I said I've had excessive belching in the last few years a little before the breathing issues started.

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Did you get tested just to confirm you don’t have some form of it? I know some people
who have like an exercise induced asthma or something like that where it gets triggered by environmental factors or physical activity. But yeah it’s possible it could be GI related. I’m not sure how they tie together exactly but my hunch is that there is some sort of connection. Just hoping to find out what that is lol.

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Does anyone have any experience with acid reflux/Gerd and shortness of breath or asthma?? It seems to me that my shortness of breath coincides and is most noticeable with acid reflux after I eat my lunch or dinner.

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@dcm8299

Does anyone have any experience with acid reflux/Gerd and shortness of breath or asthma?? It seems to me that my shortness of breath coincides and is most noticeable with acid reflux after I eat my lunch or dinner.

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Hi @dcm8299, there has been some discussion on here about a possible link between GERD and air hunger. I’m not sure how they would link but it’s always a thought in my mind that there could be something there. I’ve read about acid “splash” into the lungs that could affect breathing. But it’s definitely something I’ve been thinking about and trying to research since a lot of people with this mysterious air hunger problem also have GI issues. Not everybody, but a lot of people

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FEV1/FVC .82 means no airway obstruction
RV/TLC 28 normal lung volume
DLCO 110% of predicted
No sleep apnea June 2022
CXR February 2022 no acute processes, lungs clear
CT scans in May and July 2021 no a cure processes, lungs clear
acid reflux bothers me pretty much daily especially after lunch. SOB, gasping for air seems to coincide. I don’t have a cough and minimal phlegm. May have some in the back of my throat. Asthma?!? I have 5 German shepherd dogs. Could they be triggering some daily reactions?!? But this air hunger, sigh breath, SOB seems to be occurring more frequently.

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@gabrielm

@shels, I'm so sorry you've started to experience this breathing issue and associated anxiety. I know how it feels! I am glad that you found this forum shortly after your started so that you can start searching for answers right away.

That's good that your pulmonologist didn't find anything- have you had your heart examined?

Do you recall any event or anything that happened that might have started this up, or did it start out of the blue?

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This started out of the blue, but since I posted last, I have found relief! The ENT said it would take about 10 days and I can finally breathe again! I was diagnosed with Laryngopharyngeal Reflux.
With 2 nose sprays, allergy meds,and Omeprazole, I’m feeling much better!
It’s also important to stay away from foods that trigger reflux (caffeine, spice, citrus,chocolate, tomatoes, and alcohol!
It’s been scary and very uncomfortable, but I’m so happy to be able to breathe!

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