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.

@gabrielm

@sheebacat, without knowing your medical history and not being a doctor myself, just through my own research, I think the respiratory physiologist’s analysis definitely has merit. It’s possible that many of us are breathing incorrectly, and the primary lesson of the Buteyko breathing is to change from the habit of chest and mouth breathing, to belly and nose breathing. It takes practice, but there are YouTube videos that show how to practice belly breathing which is to lie down, place a hand over your chest and the other over your belly and every time you I inhale, your belly hand should rise while the chest hand remains still. The other way to train your body to breathe less is simply to resist the urge to take deep breaths as much as possible and if you do have do, do so through your nose. Have you had your oxygen levels tested?

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Hyperventilation affects your carbon dioxide levels not oxygen levels.

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@gabrielm

@sheebacat, without knowing your medical history and not being a doctor myself, just through my own research, I think the respiratory physiologist’s analysis definitely has merit. It’s possible that many of us are breathing incorrectly, and the primary lesson of the Buteyko breathing is to change from the habit of chest and mouth breathing, to belly and nose breathing. It takes practice, but there are YouTube videos that show how to practice belly breathing which is to lie down, place a hand over your chest and the other over your belly and every time you I inhale, your belly hand should rise while the chest hand remains still. The other way to train your body to breathe less is simply to resist the urge to take deep breaths as much as possible and if you do have do, do so through your nose. Have you had your oxygen levels tested?

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Thank you. That is basically what the respiratory physiologist is telling me to do. She doesn't call it Buteyko but it sounds the same. She also is teaching me to try to swallow instead of taking the deep, yawning breath. Or to simply exhale. I have had a few good days and now I'm working on my sitting and standing inhales.. the lying down part is the easiest.
I have a device to check the oxygen levels and they are always fine.

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Has anyone had an X-ray of their spine to see if there is a pinched nerve causing the sensation? I was short of breath upon minimal exertion for many years until I had a herniated disc replaced and I’m fine with that now. I had been working out at the gym before it happened; very physically fit … went to a lot of heart and lung specialist and all said I was great so my husband though of the spine idea and I want to share my success with you.

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@gabrielm

@sheebacat, without knowing your medical history and not being a doctor myself, just through my own research, I think the respiratory physiologist’s analysis definitely has merit. It’s possible that many of us are breathing incorrectly, and the primary lesson of the Buteyko breathing is to change from the habit of chest and mouth breathing, to belly and nose breathing. It takes practice, but there are YouTube videos that show how to practice belly breathing which is to lie down, place a hand over your chest and the other over your belly and every time you I inhale, your belly hand should rise while the chest hand remains still. The other way to train your body to breathe less is simply to resist the urge to take deep breaths as much as possible and if you do have do, do so through your nose. Have you had your oxygen levels tested?

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Hello @gabrielm and others in this discussion group.
As a person with Parkinson's and vocal cord paralysis, I'm always interested in breathing exercises. When I read Gabe's post mentioning Buteyko breathing, I took notice and looked up a demonstration on YouTube. Here is the link, if you are interested in learning more about it.

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@cookie2009

@gabrielm I have not tried the breathing exercises but I will look into it thank you. I have never had problems with Gerd or acid reflux, only time I ever notice some was when I was pregnant 2 years ago other then that I have not had really any issues with Gerd that I'm aware of. I have actually always been a nose breather. I had stopped taking the advair hfa and actually started feeling better as the days went for about a week but still not normal feeling after i stopped the advair. and then my daughter and I got a cold and it came right back. I go to the lung doctor tomorrow I will keep yall updated. Did you ever see a specialist about yours?

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@gabrielm I did go to the lung doctor a couple days ago. I can't it. He he also suggested the breathing exercises you told me to try. So it's been a couple days and it is getting a little better. Tolerable anyways. He thinks I did something to trigger some breathing problem where it is just about feeling. Like my brain and breathing are not on the same page. I am to call him if I do not get better but he said it can take a few days. So I have been trying to breath slower and do the exercises. My body is getting to much Carbon or oxygen one or the other and I try to Over breath I guess from what I got out of it. So kind of like some kind of anxiety I guess but not really at the same time. I just need to get my breathing back in sync with my brain because to me it literally feels like I'm not getting enough air. But yet I am. Just like how you describe yours. I will keep you posted. Thank you.

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@sheebacat

Thank you. That is basically what the respiratory physiologist is telling me to do. She doesn't call it Buteyko but it sounds the same. She also is teaching me to try to swallow instead of taking the deep, yawning breath. Or to simply exhale. I have had a few good days and now I'm working on my sitting and standing inhales.. the lying down part is the easiest.
I have a device to check the oxygen levels and they are always fine.

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I'm glad you are having more good days. It seems the breathing exercises and trying not to take a deep breath may be helping. That's good that your O2 levels are normal. That means there's the knowledge that you're getting enough oxygen in your blood. Let me know how it goes over the next few days and if there's further improvement.

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@cookie2009

@gabrielm I did go to the lung doctor a couple days ago. I can't it. He he also suggested the breathing exercises you told me to try. So it's been a couple days and it is getting a little better. Tolerable anyways. He thinks I did something to trigger some breathing problem where it is just about feeling. Like my brain and breathing are not on the same page. I am to call him if I do not get better but he said it can take a few days. So I have been trying to breath slower and do the exercises. My body is getting to much Carbon or oxygen one or the other and I try to Over breath I guess from what I got out of it. So kind of like some kind of anxiety I guess but not really at the same time. I just need to get my breathing back in sync with my brain because to me it literally feels like I'm not getting enough air. But yet I am. Just like how you describe yours. I will keep you posted. Thank you.

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@cookie2009, I'm glad to hear that there's some improvement. That's interesting about what he said about it being about the feeling. I've wondered that for a long time, because most people here, including myself, have always had normal O2 levels which means we're definitely getting enough oxygen. It just doesn't seem to "register" in the lungs as the normal feeling. A few years back when I started the breathing exercises, it was like things synced up again for a while and then the problem came back. It's manageable and tolerable now, but I can't help but wonder that there might be some sort of disconnect. Do you plan on seeing other specialists in the future? I did see a few specialists some years ago to have a bunch of tests done, all of which came back normal.

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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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I have the same SOB as it is being called here. Mine started some time between braking my sternum and healing my thyroid cancer. O2 is normal, heart is normal, bloodwork is normal. The main symptom I have besides the SOB is excessive gas. Burping all the time. Once the gas pressure goes down I can take a deep breath. But that too is not always the cause. Slowing my breathing and holding it also helps, but that feeling of needing a deep breath comes back within minutes. Thatk you for all the information.
Kasse.

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@mutter

same here.. have you had a full Thyroid workup? The Thyroid can cause SOB

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I had thyroid cancer, I did not know the the thyroid can cause SOB...damn. thank you for the information, as I am new to this site.
Kasse.

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Hi everyone having gone through this whole post over the past 2 days I thought Id share my experience briefly. Last Thursday I started with the exact same symptoms described above. It was a relief to know i wasnt alone but terrifying that there were so few solutions. For 4 days I struggled. I tried the breathing techniques to no avail. I told myself its all in my head. It isnt. I assumed I had silent reflux and took some Citric soda as thats an antacid. Weirdly it helped. Was it placebo? Was it really helping? Well it seemed to at least reduce the frequency. I elevated my bed, propped up my pillow and that all seemed to help too. Anyway eventually my wife persuaded me go to a Dr. So armed with all the info from this thread I went to the dr. Asked about GERD, ppis, anxiety ect. After a some conversation ot dawned on me that I had changed the dosage of my wellbutrin around the same time that this happened. I have now gone back down and my air hunger is 90% gone. Still there a little but not too bad. Point is, I think this was simply a reaction to medication that wasnt sitting well with me. Obviously not saying this is the main culprit but thought Id post in case anyone else is also on medication which may be causing this.

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