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.

@codygirl

Hi team
I am kind of relieved to have found this thread because I thought I was going mad. Then of course the medical gaslighting..
Mine has been on & off for a year. It is like a valve closes when I take a few breaths & I just can’t seem to get air all the way in. It only opens when I yawn or force a yawn to get a deep breath in. Sometimes I can’t trick it with a forced yawn & that causes some distress.
I also have had GERD & really thought this was linked as I can kinda feel the inflammation via the restriction in my airway when I can’t breathe deep enough.
I’m clearly breathing but it’s almost like suffocation to an extent because you have to just wait it out for that big relieving breath!
It’s not anxiety.
Might be stress, but would be literal life stress nothing major.
Staying on this thread & grateful you guys are here.

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Glad you found this thread too @codygirl! Are you getting treated for the GERD? I know many people in this forum who are also dealing with GERD among the breathing symptoms. Though mine is controlled with PPIs, my air hunger more correlates to inflamed sinuses more than anything. Have you talked to a doctor about this yet?

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@budisnothome

Good morning . Had all of the above. PFT was normal. Eosinaphil esophagus. Also discovered I gave vocal cord disfunction. Long technical word. Started taking Fasenra. Stopped my sinus problems and got rid of many yeats ling cough. Vocal cords would close up on sucking in. I could blow but not suck. ENT pt doc helped me with breathing exercises to be a better sucker. May need to look into vocal cord problems. Mayo Rochester has great team just for this. Good luck.

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I'm glad that you found something that sounds like could be the cause. I also considered and was tested for VCD some years back. Always worth a check VCD can definitely be treated and managed through breathing exercises. Let me know how it goes with the VCD treatment, I'm sure others here who have or who might have VCD would benefit from treatment ideas.

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@nathank

There haven't been any replies for a while but I am going through this same exact thing and it is killing me. I am 17 years old and I have been vaping for 2.5 years. I quit about 3 weeks ago and am still having the issue. I have had chest x-rays, checked for asthma but it has gotten worse throughout the past few days. Maybe this has to do with anxiety and its withdrawals but I am not sure. I have been reading the replies and everything for the past hour trying to find something out. I had seen someone with a very similar situation that I have currently. @rigenadaku
was one of them and the other I found was almost exactly how I have been feeling was @katgts. I have been on the hunt trying to find out what this is because it's gotten worse and worse. I saw some people talking about their doctor putting them on an inhaler, I am getting one today and will see how/if it helps. The situation I am in to save people time trying to find it is when I try to breathe I can't take deep breaths. I get so close to getting that full breath in but I just can't get it. The only times I can is when I change how I am sitting which quickly stops working after that and also most of the time yawning will help as well. I have also seen things about allergies and their throat closing up which could cause this. After seeing that, I need to get an allergy test done. I will keep everyone updated I hope that someone finds something about this and helps everyone.

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Hi @nathank, do keep us updated on your progress! Besides the vaping, do you recall any instances of doing something that could correlate with the start of your air hunger?

It sounds like it's in the beginning stages for you so you probably are looking into what tests you can get done. Hopefully you're starting to work closely with you primary care physician who can help refer you to specialists to get tests done to start ruling things out.

I've not heard or read much about vaping and withdrawl symptoms, but if withdrawl symptoms last a few weeks, there's a chance the breathing issue will go away or improve slowly over time.

Not knowing what's going on can certainly exacerbate any anxiety from either withdrawls or the air hunger itself, so working on the mental aspect while you're going through this will definitely help. I suggest calming breathing exercises and ways to deal with the anxiety which in turn, you might find that your breathing improves. They Buteyko Breathing Method is what has helped me deal with the various symptoms, but starting with any kind of calming breathing exercises would give you a good start. Keep us updated on your progress!

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@whitneymay20224

I want to cry because this is my story. I want to try this breathing method. My quality of life feels so poor even though I have beautiful children and love my life. I often think that there is no way I can live without feeling like I’m suffocating every single day. Nothing helps me andit has become so constant that people ask me all the time if I’m ok . I’m sorry you suffer with this. It’s ruining my life and has been for the last couple years. Prayers to you ash thank you for sharing something that has helped! ♥️

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Hi @whitneymay20224, I'm happy that finding this has brought you some relief. As you can see, this thread is very active with many others dealing with the same thing. So hopefully that's at least some consolation that there's an active community dealing with this issue.

I know how it feels to have a lower quality of life due to this breathing issue. I too though that there's no way to live without this feeling, but if it's any further consolation I do believe that there are ways to at least manage the symptoms as I've done over the past few years to the point of being able to do most everything normal.

Have you seen a doctor about this and have you had any tests done to rule anything out?

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@gabrielm

Hi @nathank, do keep us updated on your progress! Besides the vaping, do you recall any instances of doing something that could correlate with the start of your air hunger?

It sounds like it's in the beginning stages for you so you probably are looking into what tests you can get done. Hopefully you're starting to work closely with you primary care physician who can help refer you to specialists to get tests done to start ruling things out.

I've not heard or read much about vaping and withdrawl symptoms, but if withdrawl symptoms last a few weeks, there's a chance the breathing issue will go away or improve slowly over time.

Not knowing what's going on can certainly exacerbate any anxiety from either withdrawls or the air hunger itself, so working on the mental aspect while you're going through this will definitely help. I suggest calming breathing exercises and ways to deal with the anxiety which in turn, you might find that your breathing improves. They Buteyko Breathing Method is what has helped me deal with the various symptoms, but starting with any kind of calming breathing exercises would give you a good start. Keep us updated on your progress!

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Thank you so much! The only other thing I can think of that would correlate with breathing was carpentry and the saw dust however I don’t see that being too much of an issue. I did it for 3 years. I’ll keep you updated on what I find out!

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@gabrielm

Glad you found this thread too @codygirl! Are you getting treated for the GERD? I know many people in this forum who are also dealing with GERD among the breathing symptoms. Though mine is controlled with PPIs, my air hunger more correlates to inflamed sinuses more than anything. Have you talked to a doctor about this yet?

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On meds for GERD. GERD comes & goes, but I feel more inflammation than reflux.
My doctor was clueless on my symptoms & told me to breath into my diaphragm more. It’s almost like a door is being shut in my airways. Like my throat is closing in.. Not my diaphragm!

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@codygirl

Hi team
I am kind of relieved to have found this thread because I thought I was going mad. Then of course the medical gaslighting..
Mine has been on & off for a year. It is like a valve closes when I take a few breaths & I just can’t seem to get air all the way in. It only opens when I yawn or force a yawn to get a deep breath in. Sometimes I can’t trick it with a forced yawn & that causes some distress.
I also have had GERD & really thought this was linked as I can kinda feel the inflammation via the restriction in my airway when I can’t breathe deep enough.
I’m clearly breathing but it’s almost like suffocation to an extent because you have to just wait it out for that big relieving breath!
It’s not anxiety.
Might be stress, but would be literal life stress nothing major.
Staying on this thread & grateful you guys are here.

Jump to this post

You need to see a pulmonologist familiar with interstitial lung disease.

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@codygirl

On meds for GERD. GERD comes & goes, but I feel more inflammation than reflux.
My doctor was clueless on my symptoms & told me to breath into my diaphragm more. It’s almost like a door is being shut in my airways. Like my throat is closing in.. Not my diaphragm!

Jump to this post

Inflammation of the airways could be related to asthma. Have you gotten checked out for that or are you aware of other asthma symptoms? One way to test the inflammation is if you hold your breath for 20 seconds or so and then breathe normally, this will cause temporary vasodilation and temporary relief of inflammation in some areas where it's occurring. For example, I do this for clogged sinuses to get temporary relief and it opens them up after having held my breath a few times. If you do some breath holding and normal breathing cycles, this would test if there is indeed a lot of inflammation. Let me know what you find out.

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Check your spine. I had breathing problem caused by pinched nerve at C5/6. Report your success.

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Has anyone tried endoscopic sinus surgery? I am 8 weeks out of surgery and still not getting relief from the stupid air hunger. I was told because if my swelling I was trapping air so not releasing all of my air then trying to put more air on top of the trapped air. I prayed this surgery would help but I am not feeling any different yet. I’m so over this!!

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