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.

@loribmt

Threat level midnight~One of my favorite episodes of The Office! You chose a fun @name.
Welcome to Mayo Clinic Connect!

Not so fun is the breathing issue. You’re not alone in this!
We have a very active group of fellow members experiencing similar issues. @gabrielm @sprucy11 @jenh1128 @eamon11235 @vfparker are all currently having conversations with similar symptoms. Hopefully they’ll be able to offer some suggestions for you.

https://connect.mayoclinic.org/discussion/mysterious-shortness-of-breath/

Was there anything that changed in your eating, health, or activities that you can correlate with the first event?

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Hello. Since my original post I went to a pulmonologist at University of Michigan for a second opinion. The good news is that he feels my bronchiectasis is being well managed and agrees with what my doc has done. He did refer me to ENT. My first visit was last week. It seems I have Kender diverticulitis. Mucus and food get deposited in a pouch and at a point it makes me cough and sometimes vomit the contents of that. I have another test coming and then probably surgery. Here’s why I am giving all this detail - I blamed my bronchiectasis and even told my pulmonologist my symptoms a year ago. Issue originally was not being able to breath/swallow past where the Adam’s apple is and needing to massage my throat to dislodge it. It has nothing to do with my other diseases and glad I pushed to follow through.

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@vfparker

Hello. Since my original post I went to a pulmonologist at University of Michigan for a second opinion. The good news is that he feels my bronchiectasis is being well managed and agrees with what my doc has done. He did refer me to ENT. My first visit was last week. It seems I have Kender diverticulitis. Mucus and food get deposited in a pouch and at a point it makes me cough and sometimes vomit the contents of that. I have another test coming and then probably surgery. Here’s why I am giving all this detail - I blamed my bronchiectasis and even told my pulmonologist my symptoms a year ago. Issue originally was not being able to breath/swallow past where the Adam’s apple is and needing to massage my throat to dislodge it. It has nothing to do with my other diseases and glad I pushed to follow through.

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Thank you for giving us such an encouraging update! We really do have to be our own advocates sometimes, don’t we? Your perseverance in searching for a resolution paid off!
It’s wonderful you’re making progress with the breathing. That has to be a huge relief for you. What did you have do to get your bronchiectasis under control? Are you on medication for this?

Hopefully this next step to correct the little pouch in the esophagus will take care of the rest of the symptoms and return your life to some normalcy. By any chance did you mean Zenker’s Diverticulum instead of Kender?

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@loribmt

Thank you for giving us such an encouraging update! We really do have to be our own advocates sometimes, don’t we? Your perseverance in searching for a resolution paid off!
It’s wonderful you’re making progress with the breathing. That has to be a huge relief for you. What did you have do to get your bronchiectasis under control? Are you on medication for this?

Hopefully this next step to correct the little pouch in the esophagus will take care of the rest of the symptoms and return your life to some normalcy. By any chance did you mean Zenker’s Diverticulum instead of Kender?

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Yes I am sorry for the typo. Yes Zender. For my bronchiectasis I use two preventative inhalers daily as well as a rescue inhaler. Because it was assumed my swallowing and breathing issues were a flare up I started using 7% nebulizer daily as well. I keep an antibiotic with me and when I have a flare up start that immediately. I have had this for 40 years and 38 years ago had a lobectomy. I learned thru the years to read my body and self treat. I stay away from camp fires, dust, pollen as much as possible and make sure our air ducts are cleaned. No wood heating or second hand smoke. This has kept me going all these years so when I started choking, clearing my throat all the time, had a hoarse voice and regurgitating and vomiting I vowed to find a solution as at this rate I was frightened I would choke in my sleep.

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@vfparker

Yes I am sorry for the typo. Yes Zender. For my bronchiectasis I use two preventative inhalers daily as well as a rescue inhaler. Because it was assumed my swallowing and breathing issues were a flare up I started using 7% nebulizer daily as well. I keep an antibiotic with me and when I have a flare up start that immediately. I have had this for 40 years and 38 years ago had a lobectomy. I learned thru the years to read my body and self treat. I stay away from camp fires, dust, pollen as much as possible and make sure our air ducts are cleaned. No wood heating or second hand smoke. This has kept me going all these years so when I started choking, clearing my throat all the time, had a hoarse voice and regurgitating and vomiting I vowed to find a solution as at this rate I was frightened I would choke in my sleep.

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Your symptoms were certainly frightening. I’m glad you found solutions that work for you. Boy, some of those things like campfires, dust and pollen are hard to avoid, aren’t they?
So many of our neighbors have fire pits in the city. Smoke bothers me too, especially since my transplant. Sometimes I can’t even have our windows open at bedtime on a lovely cool evening because the smoke is so heavy in the air.

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@oldkarl

I have been diagnosed with COPD multiple times. Then I find a reputable pulmonologist to verify the diagnosis, and the pulmonologist each time tells me I don't have COPD. Rather, I have a bunch of genetic issues (I have checked it with a few genetics labs to be sure). Then I forget the COPD until another session. I really would like to know the whole picture, but I am learning. I know I have a pile of things... bronchiectasis, Clarkson's, many cancers (Barrett's, basal cell, etc.), Gelsolin, Warren-Warburg, several encephalopathy forms, etc. But no legitimate test has uncovered COPD. I am beginning to think that COPD, like so many other "diseases" are most commonly diagnosed when the doc simple has no idea what is wrong. There may really be a COPD, but I think at least half the diagnoses are mistaken. A good Whole Genome Sequencing would be much better.

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hi @oldkarl, it's frustrating with all the possible diagnoses but no real certainty, isn't it? I wasn't diagnosed with anything in particular regarding my breathing but it's still frustrating with the lack of answers. It's definitely a day to day learning experience and piecing together a big puzzle. I hope doctors can provide more answers and at least provide some level of certainty.

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@gabrielm

hi @oldkarl, it's frustrating with all the possible diagnoses but no real certainty, isn't it? I wasn't diagnosed with anything in particular regarding my breathing but it's still frustrating with the lack of answers. It's definitely a day to day learning experience and piecing together a big puzzle. I hope doctors can provide more answers and at least provide some level of certainty.

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@gabrielm, yes, it is frustrating. One question: Did you have the Whole Genome sequenced by a certified clinical genetic house trusted by Medicare, or just a partial from a non-certified group? Most of the partials run less than 1% of the whole pattern, and probably will not be covered. Medicare tells insurance to cover it if the doc signs the order, and the genetic house has a history of working with Medicare. Next, do you have a good geneticist you trust? There is a good organization of geneticists who can help you find someone. You might also talk to one of my favorites, Ambrygen.com, or to AYASS.com (I think that is right. It is a pulmonary care house who have done well with me.) oldkarl

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@oldkarl

@gabrielm, yes, it is frustrating. One question: Did you have the Whole Genome sequenced by a certified clinical genetic house trusted by Medicare, or just a partial from a non-certified group? Most of the partials run less than 1% of the whole pattern, and probably will not be covered. Medicare tells insurance to cover it if the doc signs the order, and the genetic house has a history of working with Medicare. Next, do you have a good geneticist you trust? There is a good organization of geneticists who can help you find someone. You might also talk to one of my favorites, Ambrygen.com, or to AYASS.com (I think that is right. It is a pulmonary care house who have done well with me.) oldkarl

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I had never done anything regarding genetics. I’m not sure how that relates to the breathing but there might be something there!

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Gabe, I am sensitive to your struggle my friend! I must share with you I fought through a very similar battle- for almost 8 years. Attempting any and all remedies possible. Nothing really helped and I was exhaustive in my pursuit (including Butyco). Almost 1 year ago I stumbled upon a method that has GREATLY helped. I am excited to share it with you in hopes you may experience some freedom. It is called the wim hoff method. There is a book by that name. This method is really quite simple , takes some discipline to employ and many are not willing to do that. However, I believe you are one who could. Nothing worthwhile ever comes easy.
I was a police officer under a tremendous amount of stress and had developed a sever case of SOB. This method has provided me with a freedom to breathe that I had only dreamed of. It is not a cure but must become a part of ones life.

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@gentlehelix1

Gabe, I am sensitive to your struggle my friend! I must share with you I fought through a very similar battle- for almost 8 years. Attempting any and all remedies possible. Nothing really helped and I was exhaustive in my pursuit (including Butyco). Almost 1 year ago I stumbled upon a method that has GREATLY helped. I am excited to share it with you in hopes you may experience some freedom. It is called the wim hoff method. There is a book by that name. This method is really quite simple , takes some discipline to employ and many are not willing to do that. However, I believe you are one who could. Nothing worthwhile ever comes easy.
I was a police officer under a tremendous amount of stress and had developed a sever case of SOB. This method has provided me with a freedom to breathe that I had only dreamed of. It is not a cure but must become a part of ones life.

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@gentlehelix1 thanks for the suggestion! I have heard of the method but don’t know much about it. I’m sure it would help a lot of people here and would be worth the investigation

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@gabrielm

@gentlehelix1 thanks for the suggestion! I have heard of the method but don’t know much about it. I’m sure it would help a lot of people here and would be worth the investigation

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Hi Gabriel, I have a question for you. Doesn't singing make your breathing problem worse? Because if I sing a little, this breathing problem becomes more severe. Maybe stomach acid has damaged the larynx for a long time and this tension is to compensate for the damage. If you can go to a laryngologist and describe your problem completely and take a picture of the larynx. Maybe where you are, doctors will have more knowledge and the root cause will be discovered

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