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.

@merryvonne

I had an injection of Prolia about 2 weeks ago & within a couple days started having SOB (which I initially blamed on seasonal allergies). It has gotten progressively worse & resulted in increased hypertension. Is this something anyone with experience can address. I already wrote my oncologist & told him “no more”. And the scale today is 5# more than yesterday with no visible peripheral edema.

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I don't anything about Prolia, but it could be a side effect of the injection, possibly. Have you talked to your doctor about these symptoms and did he/she indicate that there could be side effects including SOB?

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@gabrielm

I don't anything about Prolia, but it could be a side effect of the injection, possibly. Have you talked to your doctor about these symptoms and did he/she indicate that there could be side effects including SOB?

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I’ve written him via My Chart & will speak with his nurse tomorrow.

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My first thought with my SOB was CHF, though I don’t have the peripheral edema that usually accompanies it. I’ve made an appt. with the NP in my cardiologist’s office. I’m wondering if I might need a cardiac Cath & another stent. I had a stent placed in 04, 08 & 12, so I’m overdue. I think the SOB is at least partially related to the injection of Prolia since it started at that time. I see my PMD Thu. & the NP 11/1, so hopefully I’ll find out something. You sound like you’ve researched your SOB well & found some procedures that help. Good for you.

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Use protonix and clidinium c for two weeks. It Make you better

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@merryvonne

My first thought with my SOB was CHF, though I don’t have the peripheral edema that usually accompanies it. I’ve made an appt. with the NP in my cardiologist’s office. I’m wondering if I might need a cardiac Cath & another stent. I had a stent placed in 04, 08 & 12, so I’m overdue. I think the SOB is at least partially related to the injection of Prolia since it started at that time. I see my PMD Thu. & the NP 11/1, so hopefully I’ll find out something. You sound like you’ve researched your SOB well & found some procedures that help. Good for you.

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Let us know how it goes! Curious to see what your PMD appointment goes and if they correlate this to your shortness of breath

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I, too, have been having SOB, sometimes severe which I had blamed on an injection of Prolia. I saw my Internist this morning - he does not think it's the Prolia. I told him I have an appt. with my cardiologist's PA and am hoping she recommends a cardiac cath to check for a coronary artery blockage. I've had 3 stents placed, each of them 4 years apart - it has now been 9 years since my last cath and I would be curious as to whether I need additional stent(s). i hope you find the source of your problem. You mention no problems with your heart or lungs, but have you had a stress test and/or cardiac cath - might be a good idea.

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@merryvonne

I, too, have been having SOB, sometimes severe which I had blamed on an injection of Prolia. I saw my Internist this morning - he does not think it's the Prolia. I told him I have an appt. with my cardiologist's PA and am hoping she recommends a cardiac cath to check for a coronary artery blockage. I've had 3 stents placed, each of them 4 years apart - it has now been 9 years since my last cath and I would be curious as to whether I need additional stent(s). i hope you find the source of your problem. You mention no problems with your heart or lungs, but have you had a stress test and/or cardiac cath - might be a good idea.

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Thanks for the update. It’s good to rule things out and narrow down the search for what it could be. I haven’t done the stress test but I’ve had heart tests done which came back normal. Hopefully you don’t have an artery blockage but that could have something to do with shortness of breath in your case since your heart would have to work harder

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This post is so old, I highly doubt the response will even be noticed, but you described my symptoms to the letter. It has apparently become more and more prominent among people and I have started to wonder if it is a product of something environmental.
I have to be honest, at the time it all started, I smoked and was sure it had something to do with that. The lung doctor tested me for everything under the sun though, and could find no cause, INCLUDING SMOKING! 🤔
Later, I found this to be an issue for some, even if they didn’t smoke so I have come to my own conclusion that the only way to figure this out, is to find some commonality among those that suffer with this problem.
Mine has been so bad that I struggle to breathe at night. It wakes me up often. In my case, I also started snoring! So now, I have sleep apnea, which I didn’t have before.
I also have GERD, but am on long term medication for it.
I am no longer able to exercise and gave up on it because not being able to get deal breathes was making exercise EXTREMELY uncomfortable. So, here we are, two people, same problem, with no answers.
I answered your post though because I was hoping to maybe find out if they ever discovered anything or if you found something that worked.
I’d love to know because after 8 years of no exercise, I am over weight and out of shape and growing exhausted with the issue.
If you happen to see this, I’d love to know.

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@jmsigmon

This post is so old, I highly doubt the response will even be noticed, but you described my symptoms to the letter. It has apparently become more and more prominent among people and I have started to wonder if it is a product of something environmental.
I have to be honest, at the time it all started, I smoked and was sure it had something to do with that. The lung doctor tested me for everything under the sun though, and could find no cause, INCLUDING SMOKING! 🤔
Later, I found this to be an issue for some, even if they didn’t smoke so I have come to my own conclusion that the only way to figure this out, is to find some commonality among those that suffer with this problem.
Mine has been so bad that I struggle to breathe at night. It wakes me up often. In my case, I also started snoring! So now, I have sleep apnea, which I didn’t have before.
I also have GERD, but am on long term medication for it.
I am no longer able to exercise and gave up on it because not being able to get deal breathes was making exercise EXTREMELY uncomfortable. So, here we are, two people, same problem, with no answers.
I answered your post though because I was hoping to maybe find out if they ever discovered anything or if you found something that worked.
I’d love to know because after 8 years of no exercise, I am over weight and out of shape and growing exhausted with the issue.
If you happen to see this, I’d love to know.

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Hi @jmsigmon, welcome to Connect. Don’t be concerned that the original post is old. There’s no shortage of current conversations in the shortness of breath discussion.
Hang tight and I’m sure you’ll be in contact with @gabrielm @merryvonne @amirreza @buffyjane or @angelarho89 as they’ve been recently active over the past few days and weeks.

I sure hope you can find some answers or at least feel that you’re not alone in this struggle. I know you’re not able to exercise because of your breathing but do you feel confident in starting to do a little walking around your neighborhood just to get the blood flowing?

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@jmsigmon

This post is so old, I highly doubt the response will even be noticed, but you described my symptoms to the letter. It has apparently become more and more prominent among people and I have started to wonder if it is a product of something environmental.
I have to be honest, at the time it all started, I smoked and was sure it had something to do with that. The lung doctor tested me for everything under the sun though, and could find no cause, INCLUDING SMOKING! 🤔
Later, I found this to be an issue for some, even if they didn’t smoke so I have come to my own conclusion that the only way to figure this out, is to find some commonality among those that suffer with this problem.
Mine has been so bad that I struggle to breathe at night. It wakes me up often. In my case, I also started snoring! So now, I have sleep apnea, which I didn’t have before.
I also have GERD, but am on long term medication for it.
I am no longer able to exercise and gave up on it because not being able to get deal breathes was making exercise EXTREMELY uncomfortable. So, here we are, two people, same problem, with no answers.
I answered your post though because I was hoping to maybe find out if they ever discovered anything or if you found something that worked.
I’d love to know because after 8 years of no exercise, I am over weight and out of shape and growing exhausted with the issue.
If you happen to see this, I’d love to know.

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Hi @jmsigmon, welcome to the group! Though the post is old, the forum is very active, so you’ve come to the right place!

I’m sorry that you’ve been dealing with this for so long. I have been too. You mentioned you struggle through the night. When it first started for me, I remember it affecting me less at night and more during the day. But every now and then it’ll wake me up at night until my breathing “resets”.

As far as finding something that has worked- I haven’t found a cure since I still deal with the air hunger but it is manageable and tolerable and it’s been this way for a few years. I manage it through breathing exercises using the Buteyko breathing method as well as light to moderate weight lifting and walking while doing only nasal breathing. This seems to keep it under control.

I have GERD as well but manage that through medication. I wonder if that contributes to the issue somehow, since many people here have commented that they have it. Vocal cord dysfunctional has come to mind and will be checked for that at some point so something you might want to look into.

Have you had other tests done besides lung tests? Have you had your heart checked, blood work, ekg, etc?

You mentioned not having exercised in 8 years. Now this is what I’ve noticed for me, but I believe lack of exercise is what lead to my second and third bouts of the air hunger a few years ago. Ever since then I’ve exercised at least 5 days a week for years. I would check with your doctor, but maybe doing very light exercise every day, and just do as much as your breathing allows, might help build up some cardiovascular tolerance and help your breathing. Even just very light weightlifting for 20 minutes with controlled breathing may help. And build up as your breathing improves. Something to think about.

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