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

@jarv, I'm glad you found others with a similar experience. I know it always helps when you don't feel so alone like I did back in 2012 when this started for me. Since then, this community has been developed hopefully as a good resources for anyone with similar symptoms who can sift through and find something that could help.

Just recently I've been focused on my health more, where I've started walking daily and slowly improving my eating habits. For the first time in years, I've been off of PPIs for an extended time for my GERD and while I've had some reflux symptoms, it comes and goes. Whereas when I've tried in years past to get off of PPIs, I would have constant heartburn and reflux. So I still think there is some connection because my air hunger has also slowly improved at the same time.

I'd definitely be interested in knowing what your doctor has to say about your symptoms especially if they discover reflux. Let me know!

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Hi Gabe,
I have struggled with this air hunger for two years now, i recently went through the testing for a hiatal hernia, although i did not experience any heartburn, and I do have one. Initial tests from chest x-ray and ultrasound did not spot the hernia, and so I really had to push to get further tests done. I really recommend that you do this.

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I honestly feel I wrote this myself. I have the exacts same thing. At the start it would come and go, but now its just always there. Its been a good 12 years. When I drink alcohol even just 1 drink it instantly feels better to the point I can even smoke, but the next day it comes back so much worse. For the last 2 or so years I have completely stopped drinking alcohol and smoking coggarets, but its still there all of the time. I have to be uo for work in 4 hours but am unable to sleep as I keep feeling like I'm running out of breath and need to take a deep breath for that relief that only lasts a few seconds. I hate it so much 🙁 I can't believe nobody jas figured out what it could be yet. I hope you're better

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Makes me sad as I understand. Please get your spine checked out for a pinched nerve causing this and report back with your success story. I had SOB on minimal exertion for 91/2 years… had surgery to replace herniated disc at C5/6 and now I’m great! Went from a couple steps panting to going up two flights now. Good luck checking this out and share your good news.

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@efarquharson

Hi Gabe,
I have struggled with this air hunger for two years now, i recently went through the testing for a hiatal hernia, although i did not experience any heartburn, and I do have one. Initial tests from chest x-ray and ultrasound did not spot the hernia, and so I really had to push to get further tests done. I really recommend that you do this.

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Yes indeed, I pushed to have more tests done early on, which helped in eliminating possible causes. Now that I've been able to maintain my breathing to near normal levels, I haven't had the need for further tests, but it's definitely turned into pushing myself to ensure I keep up my health and breathing exercises to keep the symptoms at bay.

Does the air hunger have varying degrees of severity or would you say it's pretty consistent throughout the day?

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@marketa88

I honestly feel I wrote this myself. I have the exacts same thing. At the start it would come and go, but now its just always there. Its been a good 12 years. When I drink alcohol even just 1 drink it instantly feels better to the point I can even smoke, but the next day it comes back so much worse. For the last 2 or so years I have completely stopped drinking alcohol and smoking coggarets, but its still there all of the time. I have to be uo for work in 4 hours but am unable to sleep as I keep feeling like I'm running out of breath and need to take a deep breath for that relief that only lasts a few seconds. I hate it so much 🙁 I can't believe nobody jas figured out what it could be yet. I hope you're better

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Hi @marketa88, Sorry you've been dealing with this for a while. It's definitely been a journey for me, but doing much better. Glad you were able to stop the smoking and alcohol. Sometimes it's necessary to eliminate certain things in order to find out what could be contributing.

How's your sleep overall? Do you have trouble sleeping sometimes, or is it every night? I would consider getting a sleep study done if you're at all able. I brought this up with my doctor many years ago, and had the test done. Though there was nothing abnormal for me, it put my mind at ease knowing that my sleep quality was pretty good.

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I think i am having similar problem. The only thing which relives my discomfort is by yawning otherwise I feel my lungs need air all the time

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Anyone with insulin resistance or diabetes?

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@mari015

Anyone with insulin resistance or diabetes?

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Hi @mari015, how have you been? Have your symptoms returned? I hope you're doing well and that your breathing is still improved.

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@kalerana

I think i am having similar problem. The only thing which relives my discomfort is by yawning otherwise I feel my lungs need air all the time

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Hi @kalerana. Do you know when this started up for you? Do you have the air hunger all day and night, or are there any times where your breathing is normal?

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@gabrielm

Thanks for the reply! I have explored the possibility of anxiety and stress, but I don't experience any of that, at least beyond the norm. I might have a stressed out day now and then, but I'm not a stressful person and am pretty easy-going. I don't have anxiety. The SOB is just always there. Always. Whether I'm at work, at home, stressed, not stressed, but stress for me is very uncommon. I have a low-stress job. So I'm not convinced it's that. So I still have no idea what it is; I'm looking into submitting my case to CrowdMed.

I'm doing alright, thank you for asking. I would say that over the past 6 months I have experienced periods of improvement from days to even weeks. Not 100%, but enough to where I didn't really notice it all day. Then I would have random bouts where it would get kind of bad, where I just can't get a deep breath, and when I do it doesn't last long before I'm desperately needing another. That would go on for a few days, and then it would get better again. So it's still up and down, and it's manageable but not normal at all. I still do exercise when I can, to an intensity that my breathing will allow- some weightlifting sessions allow me to lift a decent amount of weight with not as much rest in between, and other times I have to cut my sessions short after lifting light weights and having to rest for 5 minutes in between sets. So it all depends on the day I guess.

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Hello Gabe, I stumbled upon your post and find myself in a similar situation.

- Cardiac evaluation shows a normal heart ( I did have some PVC's but they 're gone).
- Pulmonary assessment indicates normal lung function
- Blood tests reveal mostly normal results, albeit consistently on the lower edge of hemoglobin, suggesting mild anemia

My shortness of breath (SOB/Air hunger) lacks a discernible pattern, except for exacerbations in dry air and sometimes stuffy humid conditions. During the day when I don't think about it it's not very noticeable but during sleep some I am often in a dreamy shallow sleep because of it. I know because when it's not there I sleep much more deeply and comfortably.

Intriguingly, my passion for running remains largely unaffected, except during high-intensity speed work (track workouts), where I notice an impact on my breathing.

While acknowledging my anxiety, which may contribute to the issue, the persistence of symptoms prompts further exploration. On occasion, I resort to using an asthma inhaler at night, despite lacking a formal asthma diagnosis and there's a subtle improvement, leading me to speculate that it might be related to airway relaxation.

I find myself at a crossroads, grappling with the uncertainty of whether this is simply a part of who we are or if there's an underlying and treatable cause. Your insights would be greatly appreciated. Please share your thoughts and experiences.

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