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.

@glenjr

@gabrielm Thanks for replying! I'd say more of a softer restriction, almost like something is preventing it from expanding or something is blocking the air from getting in. I've been to the ER where everything (blood tests, oxygen levels, x-rays) came out normal. My doctor prescribed albuterol which didn't help. I did test for H Pylori recently and it came out positive. Just started antibiotic treatment for that so we'll see if that helps.

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Definitely let me know how the antibiotic treatment goes and if that improves your breathing.

Yeah I think most people who describe this issue also feel it's more of a softer restriction rather than a hard stop like a stitch or an airway restriction. But I've never heard of the sensation being on one side of the lungs.

How long have you been dealing with this? Do you have other issues like allergies, asthma, etc?

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@gabrielm

Interesting! I've not heard much about biofeedback but a quick Google search definitely makes me want to look into it more. I'd be very interested to see how that goes if you do end up deciding to do it.

Have you done or considered breathing exercises in the meantime as you're searching for answers?

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I have tried breathing exercises with mixed results. I have found them helpful on occasion, other times though, when my symptoms are really bad, I tend to think there is nothing that could control the symptoms. At times like this, sticking it out is my only choice.
But since I have read so many positive comments on the breathing exercises, I am considering giving them another shot. Can you recommend a good place to start?

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@gabe79

I have tried breathing exercises with mixed results. I have found them helpful on occasion, other times though, when my symptoms are really bad, I tend to think there is nothing that could control the symptoms. At times like this, sticking it out is my only choice.
But since I have read so many positive comments on the breathing exercises, I am considering giving them another shot. Can you recommend a good place to start?

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How long did you try them for? I know what you mean though. They can be helpful sometimes while at others not so much. They were very effective when this all started, and not as effective as the symptoms returned a 3rd time. But currently I find the breathing exercises keep the symptoms at by and give me something I can control which in turn makes me feel better about the whole thing. Although things are steady now, the breathing exercises helps me maintain good breathing. In the beginning I definitely had to persevere by doing them multiple times a day every day. And every person will respond to the exercises differently and some my work on some people and not others. But the method I used is the Buteyko Breathing method which I first learned from a Patrick Mckeown book and then from an online class through Learn Buteyko Online which is more of a wholistic approach where you incorporate breathing exercises throughout your day and making small changes in support of overall health.

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Hi, I have had all the symptoms of SOB that you have had for 30yrs.
I’ve gone from doctor to doctor to doctor with all of them saying nothing is wrong with me, also eventually telling me it was “all in my head” & to see a therapist about stress. I also don’t have a stressful life. I’m happily married & don’t work because I have financial security.
I do have acid reflux which I also treat with a ppi. I also have hypertension which was caused by lack of exercise because of the 30 years of SOB. I try to exercise as much as I can tolerate but it’s becoming less & less tolerable. Recently I was diagnosed with sleep apnea which isn’t surprising considering I have to yawn a lot to get a full breath. I’m suspicious that the sob is caused by an inefficient upper airway and that’s why we’re constantly yawning to get air in through the mouth since yawning opens the airway some. I started using a cpap machine for 4 hours every morning after waking. I’ve had good results. There’s some research showing how cpaps can help with SOB by strengthening the opening in the upper airway.
I’m also going to see an ENT to see if there’s some kind of narrowing in my upper airway that can be repaired. I have read some about how constantly yawning to get air Can weaken your upper airway making the sob worse. I definitely noticed the sob getting worse as I got older.
I Can relate to your frustration and would love to here about anything you discover that helps. I’ll follow up on here after my ENT appointment. Please let me know your thoughts if possible

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Oh my! I have been suffering with this for about 3 years. Came on suddenly
First started out with not getting a satisfying breath .
It's been getting worse and more frequent
I get this annoying sensation that feels like I need to take a deep breath but can't without yawning!!
Then I get it and a few minutes later it starts again.
I went to the e.r and tried explaining it to them and they diagnosed me with dysphonia..
I don't have that so now I don't want to go back because I don't want to get misdiagnosed wich causes anxiety

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@treesahni

Hi, I have had all the symptoms of SOB that you have had for 30yrs.
I’ve gone from doctor to doctor to doctor with all of them saying nothing is wrong with me, also eventually telling me it was “all in my head” & to see a therapist about stress. I also don’t have a stressful life. I’m happily married & don’t work because I have financial security.
I do have acid reflux which I also treat with a ppi. I also have hypertension which was caused by lack of exercise because of the 30 years of SOB. I try to exercise as much as I can tolerate but it’s becoming less & less tolerable. Recently I was diagnosed with sleep apnea which isn’t surprising considering I have to yawn a lot to get a full breath. I’m suspicious that the sob is caused by an inefficient upper airway and that’s why we’re constantly yawning to get air in through the mouth since yawning opens the airway some. I started using a cpap machine for 4 hours every morning after waking. I’ve had good results. There’s some research showing how cpaps can help with SOB by strengthening the opening in the upper airway.
I’m also going to see an ENT to see if there’s some kind of narrowing in my upper airway that can be repaired. I have read some about how constantly yawning to get air Can weaken your upper airway making the sob worse. I definitely noticed the sob getting worse as I got older.
I Can relate to your frustration and would love to here about anything you discover that helps. I’ll follow up on here after my ENT appointment. Please let me know your thoughts if possible

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Hi @treesahni, wow 30 years! That's great that you have such financial security. Definitely a big plus with a condition like this. It is certainly frustrating when faced with people who tell you it's in your head. I've learned to give doctors the benefit of the doubt in realizing that most are generalists who don't know quite know where to point you, but at least try to point you somewhere.

As for the acid reflux, how long have you been on PPIs? Have you ever had any 'breakthrough' symptoms, i.e., every now and then still have some heartburn despite being on PPIs?

What sort of exercise have you been doing? While I do some moderate to heavier exercise such as weightlifting as much as my breathing can tolerate, I've recently found that frequent walks (about 20-30 min twice a day) serves as adequate exercise while allowing my breathing to be maintained as normal. Have you considered mild exercise such as walking?

Seeing an ENT I think would be worthwhile; they may also check for Vocal Cord Dysfunction which can also possibly cause this air hunger sensation. Let me know how that appointment goes- I'd like to know if they end up finding any abnormalities.

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@lindatonkin1

Oh my! I have been suffering with this for about 3 years. Came on suddenly
First started out with not getting a satisfying breath .
It's been getting worse and more frequent
I get this annoying sensation that feels like I need to take a deep breath but can't without yawning!!
Then I get it and a few minutes later it starts again.
I went to the e.r and tried explaining it to them and they diagnosed me with dysphonia..
I don't have that so now I don't want to go back because I don't want to get misdiagnosed wich causes anxiety

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Ah I know how you feel @lindatonkin1! If my memory serves me right, I think mine came on suddenly as well. If I can offer you any quick advice and even a quick fix, that is, I would first tell you that you should slow and calm your breathing whenever and wherever possible throughout the day...I know, it's somewhat of a paradox. Mine got worse before I realized that breathing more likely caused my symptoms to get worse. When I began to slow down my breathing and breathe as much as possible through my nose and learn to control it, thats when my symptoms improved. It's worth a try.

Try, even for a week, to resist the deep breathing as much as possible until you absolutely need it and see if that reduces the occurrences of the need to take deep breaths.

That's interesting about the dysphonia diagnosis. Did you have a hoarse voice when you went to the ER? Have you gotten any tests done to try to get to the bottom of it?

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@gabrielm

Ah I know how you feel @lindatonkin1! If my memory serves me right, I think mine came on suddenly as well. If I can offer you any quick advice and even a quick fix, that is, I would first tell you that you should slow and calm your breathing whenever and wherever possible throughout the day...I know, it's somewhat of a paradox. Mine got worse before I realized that breathing more likely caused my symptoms to get worse. When I began to slow down my breathing and breathe as much as possible through my nose and learn to control it, thats when my symptoms improved. It's worth a try.

Try, even for a week, to resist the deep breathing as much as possible until you absolutely need it and see if that reduces the occurrences of the need to take deep breaths.

That's interesting about the dysphonia diagnosis. Did you have a hoarse voice when you went to the ER? Have you gotten any tests done to try to get to the bottom of it?

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Thankyou for the advice ,I'm definitely going to take it. As to the dysphonia I ment dyspnea.
I haven't gone back as I'm worried I'll get another misdiagnosis and cause more anxiety

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@gabrielm

Ah I know how you feel @lindatonkin1! If my memory serves me right, I think mine came on suddenly as well. If I can offer you any quick advice and even a quick fix, that is, I would first tell you that you should slow and calm your breathing whenever and wherever possible throughout the day...I know, it's somewhat of a paradox. Mine got worse before I realized that breathing more likely caused my symptoms to get worse. When I began to slow down my breathing and breathe as much as possible through my nose and learn to control it, thats when my symptoms improved. It's worth a try.

Try, even for a week, to resist the deep breathing as much as possible until you absolutely need it and see if that reduces the occurrences of the need to take deep breaths.

That's interesting about the dysphonia diagnosis. Did you have a hoarse voice when you went to the ER? Have you gotten any tests done to try to get to the bottom of it?

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It's also very annoying.
I'm not happy to have you experience it but I am happy to find others who are experiencing the same thing and for the support.

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@tonyagregg and @gabrielm I am experiencing the same thing. I am 22, fairly active and I used to run half marathons so im assuming my lungs and heart are fine. However, a few days ago, I began to not be able to catch my breath while just sitting at work. I didn't think anything of it, as I've had small bouts of not being able to get a real breath before. however, it lasted all day. the only relief I could get was by forcing myself to yawn. It lasted into the evening, and my fingers even began to tingle a bit. I went to bed afraid I might not wake up!!! lol. but I did wake up and now its day 3 of the inability to breath regularly. Still, the only way I get a satisfactory breath is by yawning. I was prescribed an inhaler when I was 16, but I only used it once or twice and now no longer have it. Would an asthma induced inability to breath cause 3 days of awful breathing? I feel everyones response to this post, because while I can continue to go about my day seemingly fine, I have a slight panic in my heart wondering if this will be the rest of my life. I guess I will continue to monitor the situation and if it gets very bad see a doctor. something unusual tho, the day before I started experiencing SOB, I had petechia on my upper thigh. could this correlate to anything? the petechia is still present but seems to be going away. This all seemed to happen so randomly and unexpected! has anyone found relief or any more ideas or advice? my heart rate is around 60-62 beats per minute, so that seems fine.

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