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.

You are right. Thanks for the pep talk. I've spent the past two weeks feeling so sad, and I've been going through my papers throwing stuff out and planning what to get rid of so my family doesn't have to deal with all of it if I die. On one site I read that the life expectancy of people with chronic bronchitis is not too long--2 to 3 years, and I figured that with my afib also, and osteoporosis, that I had max ten years to live and could go suddenly from cardiac arrest if my heart goes crazy too often. But, I'll have more answers when I see the cardiologist. I'm in the dark now. Don't know what to expect. I do want to live more than ten more years. I would like to live 20 more years. I have four grandchildren and the new one (who I haven't met yet because they live a ways away) is the cutest, happiest little baby it's possible to be. I was planning to go meet him and see my daughter & the rest of her little family for Easter, but this afib blew all that out of the water for now. It's something to look forward to though and I'll get there somehow within the next two months.
I am trying. Just had lunch and will have a cup of tea and go on a short hike, then a walk at a family park where there are lots of children playing. It helps to listen to their laughter.
Sending hugs your way. You are big blessing to me today.

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@cattmom777- I think that COPD have a much longer life expectancy than 2-3 years. I'd be a science anomaly if that were true! I'm on my cell so can you Google Mayo Clinic and plug in COPD so you can learn more? It's so important for you to do research, that way you will be less confused too.

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@catmom777

You are right. Thanks for the pep talk. I've spent the past two weeks feeling so sad, and I've been going through my papers throwing stuff out and planning what to get rid of so my family doesn't have to deal with all of it if I die. On one site I read that the life expectancy of people with chronic bronchitis is not too long--2 to 3 years, and I figured that with my afib also, and osteoporosis, that I had max ten years to live and could go suddenly from cardiac arrest if my heart goes crazy too often. But, I'll have more answers when I see the cardiologist. I'm in the dark now. Don't know what to expect. I do want to live more than ten more years. I would like to live 20 more years. I have four grandchildren and the new one (who I haven't met yet because they live a ways away) is the cutest, happiest little baby it's possible to be. I was planning to go meet him and see my daughter & the rest of her little family for Easter, but this afib blew all that out of the water for now. It's something to look forward to though and I'll get there somehow within the next two months.
I am trying. Just had lunch and will have a cup of tea and go on a short hike, then a walk at a family park where there are lots of children playing. It helps to listen to their laughter.
Sending hugs your way. You are big blessing to me today.

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@catmom777 Please click on this link to visit the Mayo Bookstore. There are easy to read books to help deal with chronic illness. We are affected pyschologically and spiritually as well as physically. https://marketplace.mayoclinic.com/shop/diseases-and-conditions/book/mayo-clinic-a-to-z-health-guide_295300?utm_source=Marketplace&utm_medium=HeroBanner&utm_campaign=AtoZHealthGuide-Book&utm_content=AtoZ

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@catmom777

You are right. Thanks for the pep talk. I've spent the past two weeks feeling so sad, and I've been going through my papers throwing stuff out and planning what to get rid of so my family doesn't have to deal with all of it if I die. On one site I read that the life expectancy of people with chronic bronchitis is not too long--2 to 3 years, and I figured that with my afib also, and osteoporosis, that I had max ten years to live and could go suddenly from cardiac arrest if my heart goes crazy too often. But, I'll have more answers when I see the cardiologist. I'm in the dark now. Don't know what to expect. I do want to live more than ten more years. I would like to live 20 more years. I have four grandchildren and the new one (who I haven't met yet because they live a ways away) is the cutest, happiest little baby it's possible to be. I was planning to go meet him and see my daughter & the rest of her little family for Easter, but this afib blew all that out of the water for now. It's something to look forward to though and I'll get there somehow within the next two months.
I am trying. Just had lunch and will have a cup of tea and go on a short hike, then a walk at a family park where there are lots of children playing. It helps to listen to their laughter.
Sending hugs your way. You are big blessing to me today.

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The Mayo Clinic Handbook for Happiness

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@windwalker

The Mayo Clinic Handbook for Happiness

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@catmom777 Here is the link for the book Terri recommended. I fully recommend both these books. I bought them and they are a fascinating way to look at things and build resilience. When you find yourself starting to worry again, pick up one of these and read or do the exercises.
https://marketplace.mayoclinic.com/shop/healthy-lifestyle/book/the-mayo-clinic-handbook-for-happiness_450300

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@catmom777

You are right. Thanks for the pep talk. I've spent the past two weeks feeling so sad, and I've been going through my papers throwing stuff out and planning what to get rid of so my family doesn't have to deal with all of it if I die. On one site I read that the life expectancy of people with chronic bronchitis is not too long--2 to 3 years, and I figured that with my afib also, and osteoporosis, that I had max ten years to live and could go suddenly from cardiac arrest if my heart goes crazy too often. But, I'll have more answers when I see the cardiologist. I'm in the dark now. Don't know what to expect. I do want to live more than ten more years. I would like to live 20 more years. I have four grandchildren and the new one (who I haven't met yet because they live a ways away) is the cutest, happiest little baby it's possible to be. I was planning to go meet him and see my daughter & the rest of her little family for Easter, but this afib blew all that out of the water for now. It's something to look forward to though and I'll get there somehow within the next two months.
I am trying. Just had lunch and will have a cup of tea and go on a short hike, then a walk at a family park where there are lots of children playing. It helps to listen to their laughter.
Sending hugs your way. You are big blessing to me today.

Jump to this post

@catmom777 Please watch the video on "Who is redesigning your brain." There are several good ones on this website. This is Dr. Sood, the author of the Happiness book. Listen to what he says about how what you think rewires your brain. After you watch this, start planning on how you can go see your grand kids after your appointments with your doctors, and after you're breathing better. Hiking and children's laughter are good for you. You've decided you want to live for your grand children. Now make it so. Yes, I like hugs, and thank you.
https://www.resilientoption.com/

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Hi All,

I have been reading through these comments and with many of them it as though I have typed them myself. I am a 28 year old male in good physical shape and I have been suffering from SOB for 3 years. When it first began it was subtle and took 6-8 months to get under control. During this time I followed the standard GERD diet strictly and elevated my bed as well as taking PPIs. After some time I was mostly healed and was back to a mostly normal life style where I could exercise and eat most foods. I had only mild reflux and occasional SOB until about 5 months ago where it came back with a vengeance. When it first started again I could barely breathe and went to the ER where they said I had anxiety (their way of pushing me out). Since the symptoms came back I went back to a strict diet following the low fat, acid, and sugar regime. I noticed a difference after a month or so and though I have improved considerably I am still unable to do any exercise other than walks.

Due to the severity and return of the SOB I have again tried to seek help. I have seen cardiologists, pulmonologists, allergist, gastroenterologists, and am currently working with a nutritionist. All of my tests have come back normal except for 2. The first was an endoscopy which showed I had mild reflux. The second was a stool sample which showed I had a load of parasites and unwanted bacteria. The nutritionist and Gastro say that I have Small Intestinal Bacterial Overgrowth (SIBO) which they say causes gas/bloating then reflux and as a result SOB. Since the SIBO diagnosis I have been on 2 rounds of antibiotics which I felt a positive response to while taking them. Shortly after the antibiotics, however, symptoms worsened. My question to you all is, has anyone else looked into SIBO as a root cause of their reflux? And if so, have you tried any treatments for it. If so, I'd very much like to hear your story.

I also think it may be worth mentioning that everything I have been going through began shortly after taking antibiotics for a sinus infection 3 years ago. I believe that some bacteria were able to colonize my gut due to the antibiotics removing the good bacteria from there.

REPLY
@merpreb

@cattmom777- I think that COPD have a much longer life expectancy than 2-3 years. I'd be a science anomaly if that were true! I'm on my cell so can you Google Mayo Clinic and plug in COPD so you can learn more? It's so important for you to do research, that way you will be less confused too.

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Ok, I'll look into that. I am learning how to cope, like millions of others. There are so many out there who are much worse off than I am, so I have to remember that too. I know a guy who has been a parapalegic for about 30 years now, since a tree fell on his back during a storm. He was helping someone else out when it happened. He has managed to survive and between him and his wife have raised and supported two children. I could go on. I just need to learn to deal with this.

REPLY
@rdemi

Hi All,

I have been reading through these comments and with many of them it as though I have typed them myself. I am a 28 year old male in good physical shape and I have been suffering from SOB for 3 years. When it first began it was subtle and took 6-8 months to get under control. During this time I followed the standard GERD diet strictly and elevated my bed as well as taking PPIs. After some time I was mostly healed and was back to a mostly normal life style where I could exercise and eat most foods. I had only mild reflux and occasional SOB until about 5 months ago where it came back with a vengeance. When it first started again I could barely breathe and went to the ER where they said I had anxiety (their way of pushing me out). Since the symptoms came back I went back to a strict diet following the low fat, acid, and sugar regime. I noticed a difference after a month or so and though I have improved considerably I am still unable to do any exercise other than walks.

Due to the severity and return of the SOB I have again tried to seek help. I have seen cardiologists, pulmonologists, allergist, gastroenterologists, and am currently working with a nutritionist. All of my tests have come back normal except for 2. The first was an endoscopy which showed I had mild reflux. The second was a stool sample which showed I had a load of parasites and unwanted bacteria. The nutritionist and Gastro say that I have Small Intestinal Bacterial Overgrowth (SIBO) which they say causes gas/bloating then reflux and as a result SOB. Since the SIBO diagnosis I have been on 2 rounds of antibiotics which I felt a positive response to while taking them. Shortly after the antibiotics, however, symptoms worsened. My question to you all is, has anyone else looked into SIBO as a root cause of their reflux? And if so, have you tried any treatments for it. If so, I'd very much like to hear your story.

I also think it may be worth mentioning that everything I have been going through began shortly after taking antibiotics for a sinus infection 3 years ago. I believe that some bacteria were able to colonize my gut due to the antibiotics removing the good bacteria from there.

Jump to this post

Wow. I have had acid reflux on & off for about 1.5 years now. It's not as bad since I quit drinking coffee and wine, but the SOB has persisted. I didn't know that acid reflux could cause SOB--never occurred to me. I know it now. I wonder if that's the cause of my problems rather than smoke inhalation or bronchitis now.
One of my brothers was treated with massive antibiotics after an infection took hold in his brain stem after brain surgery. He still has stomach problems. He is gluten and lactose intolerant and has to watch what he eats very carefully or he gets very bad stomach pains with bathroom problems, etc. It's impacted his life a great deal. I'm convinced it's because of the antibiotics.

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Good Morning fellow COPD indviduals, keep believing in what you can do, the better shape your heart is in, the less oxygen needed from your lungs... the magic of belief, no deadline,s I believe God knows all our Numbers, when our time is up, everyday is a gift!!! Sunny Seeker in Fl

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