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.

@tahiristan

Hey guys, I just came across a link that you guys might find interesting:
Has anyone heard of the Alexander technique?
https://www.youtube.com/watch?v=JpxLTNMK2to

That's the video for it. I just purchased the $89 course and I am hoping it helps. Not a very big investment honestly. I have spent well over $1000-$2000 on doctor visits over the last year, mainly because I went to the Mayo Clinic in Az and National Jewish Health in Denver, and traveling isn't cheap.

Anyway, basically, the idea is we basically built poor breathing habits which led to this issue of "non-medical air hunger" and this program essentially tries to take your body back to its natural way of breathing. I remember someone saying something along the lines of "maybe we just forgot how to breath" and idk, maybe they are onto something. Let me know if anyone has heard about this or what you think about it. I am giving it a shot and can tell everyone how my experience is.

Tahir

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Very interesting! Thank you for sharing this. I've never seen this before and watched the first video and he definitely has some very interesting things to say that gives me a different perspective. I am confident that many people here will come across this video and may help a lot of people. I'll look into this further to learn more about this issue and be able to offer more suggestions to people who find this forum.

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@gabrielm

Very interesting! Thank you for sharing this. I've never seen this before and watched the first video and he definitely has some very interesting things to say that gives me a different perspective. I am confident that many people here will come across this video and may help a lot of people. I'll look into this further to learn more about this issue and be able to offer more suggestions to people who find this forum.

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I know! I was shocked too. I had done so, so so many Youtube searches and this had never came up. The algorithm knocked it to the bottom! I relate to most of the points as well, except some. I do get a lot of tension in my sternum and back when it gets back so yeah it makes sense. I am trying not to be too hopeful but yeah I think this could possible be a solution for some of us.

Then again, I was barking up the wrong tree for 10 years thinking I had Vocal Cord Dysfunction. so yeah.

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@gabrielm

@tahiristan, it's such a mystery isn't it? Even though we *feel* the lack of air in our lungs, there clearly is not an actual lack of air or oxygen since we are still functioning normally. But the feeling is so real. Sometimes I do wake up with it bothering me some, but otherwise am able to get a normal nights rest. So even though there is something physical there that is a mystery, there is also a mental aspect to it that perhaps our minds are making it out to be worse than it is somehow. Especially in the beginning for me it was a mental battle, but after I kept telling myself over time that I am fine and that this won't kill me, who knows- maybe that contributed to a lessening of the symptoms.

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Yeah it's very possible. Also my anxiety meds have helped a lot with falling asleep... but they also make me sleep in and not want to get up because I know the minute I get up, the cycle starts again. We'll keep fighting until we find a solution! that's why this thread exists. so we can help everyone be free of this condition.

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@gabrielm

Wow @brandelyncon, I'm sorry you've been dealing with this for so long. It's been about the same time amount of time for me.

Does the dosage increase of the omeperazole help? I get breakout reflux every now and then but so far have resisted going the higher dosage especially because at some point I would like to try to ween off of it and would be more difficult with a higher dosage.

I've thought for a while now that there may be a connection between the reflux and air hunger. Possibly inflammation of some sort, nerve damage, or something else. It's just a hunch but I do see many people in this thread with our similar breathing issue also having GI issues like reflux and reflux disease.

Have you explored breathing exercises or anything to help with the breathing?

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I do Buteyko breathing when I am having a particularly bad episode. It does seem to help some. Today is one week since my bad flare-up and I am feeling much better during the days. Nights are still rough because I am thinking about it more and not focused on other things. Reminding myself that I have gotten through it before and it will pass has helped. My GP is sending me for an ultrasound of my stomach to rule out gall bladder issues. The higher dose of omeprazole does seem to be helping so I am going to stay on that for now.

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Hey again guys
If you cab pls answer my question
When you are
Smoking
Eating
Watching movie
Daily activity
Or speaking with someone that you are very interesting

Do you feel better ? Or even completely forget your sob ?
I wanna see wich activity causes to forget aov for everyone

REPLY
@brandelyncon

I do Buteyko breathing when I am having a particularly bad episode. It does seem to help some. Today is one week since my bad flare-up and I am feeling much better during the days. Nights are still rough because I am thinking about it more and not focused on other things. Reminding myself that I have gotten through it before and it will pass has helped. My GP is sending me for an ultrasound of my stomach to rule out gall bladder issues. The higher dose of omeprazole does seem to be helping so I am going to stay on that for now.

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I'm glad you're doing better. It's such a relief when your symptoms diminish and you feel like you can live pretty normally again. At night, I would way try to have a nightly routine that gets your mind off the symptoms. It could be different things that you try, but I also would do Buteyko at night early on which dealt with the increase in symptoms at night for me. I'm glad the higher dose of omeperazole is helping. I would keep that up as long as it helps for sure.

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@mostafamahjoori

Hey again guys
If you cab pls answer my question
When you are
Smoking
Eating
Watching movie
Daily activity
Or speaking with someone that you are very interesting

Do you feel better ? Or even completely forget your sob ?
I wanna see wich activity causes to forget aov for everyone

Jump to this post

Hi @mostafamahjoori, I think it's different for everyone as far as what works to distract from symptoms. I would suggest healthy activities such as going for a walk, listening to music, reading, interacting with people etc. and would not recommend smoking, drinking, or eating as activities to distract from breathing issues. But I do seem to completely forget any symptoms I'm having when I'm deep in work or activities such as fishing, woodworking, playing guitar, spending time with my family, etc.

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@gabrielm

Hi @mostafamahjoori, I think it's different for everyone as far as what works to distract from symptoms. I would suggest healthy activities such as going for a walk, listening to music, reading, interacting with people etc. and would not recommend smoking, drinking, or eating as activities to distract from breathing issues. But I do seem to completely forget any symptoms I'm having when I'm deep in work or activities such as fishing, woodworking, playing guitar, spending time with my family, etc.

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Yes , some of these activity are harmful
I just wanna now and collect every activitis wich causes to forget sob
Thats why i asked from other

REPLY
@tahiristan

Hey guys, I just came across a link that you guys might find interesting:
Has anyone heard of the Alexander technique?
https://www.youtube.com/watch?v=JpxLTNMK2to

That's the video for it. I just purchased the $89 course and I am hoping it helps. Not a very big investment honestly. I have spent well over $1000-$2000 on doctor visits over the last year, mainly because I went to the Mayo Clinic in Az and National Jewish Health in Denver, and traveling isn't cheap.

Anyway, basically, the idea is we basically built poor breathing habits which led to this issue of "non-medical air hunger" and this program essentially tries to take your body back to its natural way of breathing. I remember someone saying something along the lines of "maybe we just forgot how to breath" and idk, maybe they are onto something. Let me know if anyone has heard about this or what you think about it. I am giving it a shot and can tell everyone how my experience is.

Tahir

Jump to this post

Have you started working through the course? I bought it as well and am on module 5. So far I like it.

REPLY
@brandelyncon

Have you started working through the course? I bought it as well and am on module 5. So far I like it.

Jump to this post

@brandelyncon, definitely keep us updated on your progress. I'm very interested to know how this works for you so that it can be added to the breathing toolbox to help others.

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