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.

@tamaracaitlin

Believe me, I totally understand how you feel. I find distracting myself helps. I'm back at work (after being off for the Ontario province shut down due to covid) and I find it's helps having other things to think about. I mean it's still there but my frustrations and anxiety about it are less when I'm distracted.

Some days it's worse than others, today actually has been kind of a bad day. I can't pinpoint the difference between good days and bad days, there's seems to be nothing actually causing the bad days so that's even more frustrating.

How long have you been having this shortness of breath?

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Oh god! It's truly such a frustrating feeling, especially being constantly told 'there's no abnormalities with your lungs, kidneys, oxygen levels, heartbeat, no infection in the blood.' I do have abdominal pain somewhat too, so I'm currently on medication for GERD. And I was REALLY optimistic that it was getting resolved, but after the initial improvement with the medication - it's deteriorated again.

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@alexm1994

Oh god! It's truly such a frustrating feeling, especially being constantly told 'there's no abnormalities with your lungs, kidneys, oxygen levels, heartbeat, no infection in the blood.' I do have abdominal pain somewhat too, so I'm currently on medication for GERD. And I was REALLY optimistic that it was getting resolved, but after the initial improvement with the medication - it's deteriorated again.

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I feel like I have read a few different comments about that happening (doctor prescribes meds for different things and the sob seems to resolve and then comes back) that would be terribly frustrating, you think it's gone and then it comes back.
When my sob first started, the only way I would get a good breath is through yawning. That went on for a couple weeks. My jaw was so sore. Eventually, that went away, I was able to get a deep breath by just taking a deep breath, again the breath wouldn't always "catch" and I would have to take a few deep breaths, but at least I wasn't yawning constantly. Now I feel I go back and forth, sometimes I only get it went I yawn, sometimes I can get away with just taking deep breaths.

It's crazy that we all have this bizzare sob but noone has any answers for us.
I'm surprised at how.many people on here have been referred to or have gone and seen a gastro specialist. I would not in a million years have thought my sob could be related to gastro issues and I'm surprised my doctor hasn't went that route yet. He's still looking at my lungs.

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That's exactly how I'm feeling! Incredibly frustrated - I'll call the doctors tomorrow. Yes, yawning is what I have to do!!! Even in the middle of the day, and I feel the need to prolong the breath when it connects, just so it lasts 'longer'.

Well, I did have stomach issues yesterday and I have it the past two days. No idea what's happening. I wish there was a simple solution for us all.

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@alexm1994

That's exactly how I'm feeling! Incredibly frustrated - I'll call the doctors tomorrow. Yes, yawning is what I have to do!!! Even in the middle of the day, and I feel the need to prolong the breath when it connects, just so it lasts 'longer'.

Well, I did have stomach issues yesterday and I have it the past two days. No idea what's happening. I wish there was a simple solution for us all.

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I do the same thing , I try to make it last longer!! It blows my mind that I've found people who know how I feel!! Honestly sometimes I think my doctor thinks I'm just being dramatic or faking it. But that is because all my tests come back fine, so I understand he is at a stand still as well. But maybe it's time I say goodbye to my lung specialist and talk to my doctor about going a different route. Ugh I don't know what to do.

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@emmylou89

Hello,
This sounds just like what I experience. I came across this while doing a search on constant need to yawn, as mine has recently flared up again.
Seven years ago, i began having weird breathing feelings. At first, holding my breaths for a few seconds seemed to get things back on track. It wasn’t long, however, before o was constantly feeling like I needed to yawn, or take a deep breath. Sometimes that deep breath would satisfy for a few minutes while other times it just didn’t feel like enough. In the beginning, I also experienced a lot of hyperventilation, tingling, dizziness. I believe that was all do to getting scared by the breathing. I went to DRs for a few years trying to figure it out, only to be told that I was making it up.

It was terrible for several months. I couldn’t sleep, or do many activities I normally would. Slowly, the constant need to yawn and breath deeply settled down, only bothering me once and a while. I had a couple of flare ups, but for the most part was fine. I began to realize that for me, if I thought about it to much, it would get worse. I found that if my mind was completely focused on something else it would be gone until I thought about it again. I was combined the issue was completely in my head; now I’m not so sure.

After about five years of only having minor encounters with this issue, it has returned almost as strong as in the beginning. It came back a month ago when I had a cold and hasn’t since left. It still gets better when my mind is focused on something else, but it never completely goes away. Do you find that it gets better for you when you are focused on something else? Do you wake up breathing normally, or is this present the moment you awake?
This has been driving me so crazy lately. Please let me know if you find anything that offers relief.

-Emma

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Hi, I’m 16 yrs old and have been experiencing shortness of breath off and on some days it’s better then others, but yes, it seems that when I am busy and not thinking about it as much it seems to kinda disappear but as soon as I start worrying about it it gets worse, and sometimes I experience dizziness, but I feel like I make it worse by worrying about it. I know I have allergies, asthma, GERD, and acid reflux, but I’ve never mentioned shortness of breath to my doctor, so I’m really wondering if it’s something I should be worried about and mention. I’ve been taking my omeprazole for almost 14 days now but I’m still experiencing it.

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@tamaracaitlin

I do the same thing , I try to make it last longer!! It blows my mind that I've found people who know how I feel!! Honestly sometimes I think my doctor thinks I'm just being dramatic or faking it. But that is because all my tests come back fine, so I understand he is at a stand still as well. But maybe it's time I say goodbye to my lung specialist and talk to my doctor about going a different route. Ugh I don't know what to do.

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I agree re being made to feel like you're being dramatic or faking it, when I went to A&E (I'm like 4 hours away from my registered GP) so that was the only option - the doctor gave me a patronising lesson in 'what it might feel like if we can't take a breath'. Almost categorically labelling me a hysterical anxious person lol. But the GP was far more understanding, I'll need to call again the next days. I'd definitely suggest you get yourself a new route of investigation!

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@kierenc

Hi, I’m 16 yrs old and have been experiencing shortness of breath off and on some days it’s better then others, but yes, it seems that when I am busy and not thinking about it as much it seems to kinda disappear but as soon as I start worrying about it it gets worse, and sometimes I experience dizziness, but I feel like I make it worse by worrying about it. I know I have allergies, asthma, GERD, and acid reflux, but I’ve never mentioned shortness of breath to my doctor, so I’m really wondering if it’s something I should be worried about and mention. I’ve been taking my omeprazole for almost 14 days now but I’m still experiencing it.

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But also when it gets really bad I as well feel the need to yawn or keep taking deep breaths but sometimes it’s like I can’t complete my yawn or deep breaths

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@merpreb

Welcome @tonyagregg. I'm also including @gabrielm in this post. I'm glad that you have spoken up. It's always disconcerting when something suddenly changes in our body, especially breathing! What kind of a doctor did you go to? It sounds like the doctor tested for the usual causes of shortness of breath. Did they also do any blood work? If you are planning to live with this than you at least should know what is causing it and how to manage it. I know that there are things in life that can't be explained, but a lot can. And there are a lot of things that you weren't tested for. If need be please make an appointment with a good Pulmonologist. They are the specialists.
Mayo has a great explanation of the usual explanations:https://www.mayoclinic.org/symptoms/shortness-of-breath/basics/causes/sym-20050890
I have exercise induced asthma. No tests shows that I have asthma.or Exercise-induced bronchoconstriction
https://www.mayoclinic.org/diseases-conditions/exercise-induced-asthma/symptoms-causes/syc-20372300
I wish you the best in trying to find the cause. Please let me know if you do!

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Hi, I’m 16 yrs old and have been experiencing shortness of breath that comes and goes suddenly. I have GERD, asthma, acid reflux, and allergies. I feel like some of it is in my head and me being paranoid makes it worse Bc I’ve noticed when I’m not thinking about it as much it seems to be better. Sometimes I experience dizziness but I think that’s just from maybe being worried. I’ve been taking omeprazole for about two weeks now but im still experiencing the sob, and I haven’t ever mentioned it to my doctor, but from reading all of this is doesn’t sound like it would do much good.

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@kierenc

Hi, I’m 16 yrs old and have been experiencing shortness of breath that comes and goes suddenly. I have GERD, asthma, acid reflux, and allergies. I feel like some of it is in my head and me being paranoid makes it worse Bc I’ve noticed when I’m not thinking about it as much it seems to be better. Sometimes I experience dizziness but I think that’s just from maybe being worried. I’ve been taking omeprazole for about two weeks now but im still experiencing the sob, and I haven’t ever mentioned it to my doctor, but from reading all of this is doesn’t sound like it would do much good.

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@kierenc- Good morning. Welcome to Mayo Clinic Connect. I understand how scary and frustrating SOB can be when all of a sudden you find it hard to catch your breath. I'm not surprised that you are worried. You have experienced so much in health problems for someone so young.

Are your parents aware that you have this problem and aware that you have posted on Mayo Connect? I definitely would mention everything that you feel is not right with your doctor.
https://www.mayoclinic.org/diseases-conditions/asthma/symptoms-causes/syc-20369653

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@kierenc

Hi, I’m 16 yrs old and have been experiencing shortness of breath that comes and goes suddenly. I have GERD, asthma, acid reflux, and allergies. I feel like some of it is in my head and me being paranoid makes it worse Bc I’ve noticed when I’m not thinking about it as much it seems to be better. Sometimes I experience dizziness but I think that’s just from maybe being worried. I’ve been taking omeprazole for about two weeks now but im still experiencing the sob, and I haven’t ever mentioned it to my doctor, but from reading all of this is doesn’t sound like it would do much good.

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Im so sorry! Mine started at 16, it seems to get easier with age. Yes freaking out about it makes it so much worse and sometimes you cant help it. Please when you can, get into a yoga class that works with breathing. Also affair helped me when I was your age, I cant take it now but it helped then (A low dose) Don't just settle on one doc and god forbid don't let them say you have anxiety and get on anxiety medicine (Stay away from this unless absolutely necessary! You can private message me anytime you have questions. I am 32 now, I have been through it. It gets better

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