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.

@dampiera

Yeah, it is very common for doctors to blame anxiety for things that they just can’t find a cause for.

It reminds me of the days when “hysteria” was a medical diagnosis for aaaallll kinds of things (in women). These days, in addition to anxiety, doctors tell is that it is menopause because they can’t find a cause and “you’re at that age”. That just tells me that the doctor is not a good doctor. A good doctor will say “I don’t know. Here is a possible next step.”

Any patient’s search is limited by the availability of technology and the experience and determination of their doctor.

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Look i am not denying doctors can make mistakes. But if this breathing symptom is not worsened by exertion i.e running then it is not true shortness of breath which means yes the feeling is very real but it false as they say pseudodyspnea. in that case, i am not preaching for everyone only in that case where its false, then it is either anxiety or the infamous damage to the espohagus from gerd (very strong link between reflux and anxiety also btw anyways). Guys no one could convince me it was anxiety, but i just want to help those who have tried all the avenues and are left hopeless because i know its very hard to convince any of the people who are still certain this is a physiological reason to this. If anyone is considering the possibility it is anxiety please read my other posts. Anxiety doesnt present in the way you all believe it is not the same as stress or worry, you can be worry free and have awful physical symptoms

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@jasong

Hmm this has given me a lot to think about. I also started drinking coffee a few years ago around the same time my symptoms started. And I eat a small piece of dark chocolate daily in a smoothie.

Interestingly I eating very little grains for a couple of years before this started. I would not say I was full paleo, definitely I would cheat, but minimal consumption of grains. My body responded very well to having no gluten, I rapidly lost body fat and was in the best shape of my life. I wonder if cutting out the grain then bringing it back had a negative effect or possibly like increased my sensitivity to gluten.

I may try and fast or only eat meat and fruits and vegetables for a few days and see if i notice improvement. I could then slowly bring some things back and see if I notice a reaction.

I was a smoker which does concern me, but again I saw a pulmonologist he said my heart size was good and he didn't see anything in a chest xray. I do not think it is my lungs. I can breathe fine and my blood oxygen levels are fine. It really seems to be my esophagus, or anxiety, or both. I exercise almost daily.

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i agree mate anxiety can lead to reflux and its a constant cycle. read my other posts. key is to treat the feeling however strong or frequent as unimportant. which could help get your body out of fight/flight mode and producing adrenaline and will therefore stop any acid reflux occuring. So it is worth a shot if the diet change doesnt help i guess

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@renem97

I dont remember exactly. It still comes back sometimes. At that time my diet was horrible, I ate a lot of gluten and dairy.

After I stopped and started doing breating excercises alongside running and waking up early, it resolved quickly.

Yours do sound like it could be esophagus related. Try to check esophagitis symptoms. If you have trouble swallowing, it could be eosinophilic esophagitis. Thats an allergic reaction that causes swelling of the esophagus. Try google that and see if the symptoms match yours.

For me also coffee and dark chocolate are huge triggers. It takes like 2 pieces of dark chocolate and the symptoms come back.

So if you are sure it has nothing to do with your lungs, its probably esophagus. Or could be anxiety, but I dont really believe in that. Really think about your diet. These things arent direct feedback, you could eat something and have a reaction like 20 hours later. BTW nuts could also be a trigger, Im allergic to them as well.

Go see GI doctor and ask for upper endoscopy, they will see if your esophagus is inflamed.

Also, try water fasting for a few days. I was water fasting for 96 hours and thats when I experienced what it means to breathe easily for the first time in 10 years. If you can breathe better on fasting, I would bet its esophagus related.

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im happy that you mentioned anxiety to help this person thank you even though you dont believe in it. coffe and chocolate high in caffeine which can cause anxiety.... If youre fine now youre fine but if you ever have trouble again read the posts i wrote advising people how to get freedom from it completely.

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@renem97

Yeah sure because doctors know everything.

They do couple of tests and if they don’t find anything, they tell you it’s anxiety. NO ITS NOT!

It can still be a physiological problem. Just because the tests didn’t find anything doesn’t mean it’s not there.

I also struggled with SOB, did a lot of tests and they didn’t find anything, and they also told me it was anxiety. And guess what - it was not!

I stopped eating gluten and dairy and it went away. Later I found out it was because my esophagus was swelling from allergy.

So don’t give crappy advice if you don’t know anything about it!

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As ive said a thousand times the way doctors test for is it anxiety or not is a few things.
1. If the SOB gets no worse during exertion
2. If the oxygen levels are normal WHILE you feel SOB(in a case of an allegy flare up it you would only feel SOB while that flare up occurred which is unlikely to coincide when you get tested by pulmonary doctor

These two things can make a doctor conclude most of the time that it is pseudodyspnea.

Just a question in your case, you got tested and it said you were allergic to dairy and gluten. Or did the symptoms disappearance coincide with when you werent eating dairy and gluten

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@gabrielm

Hi @pleis80, how are you? I know exactly how you feel as I was pretty desperate at times as well when this all first started for me. If it's any consolation, I am doing much better than I was back in 2012 though the air hunger symptoms are not complete gone they're just much reduced. I believe that symptoms can be managed and kept at bay when focusing on a few things like improving health, dealing with any stress or anxiety, breathing exercises, etc. If you can find a cause, that of course is ideal, but if not then you must manage symptoms.

How long have you been dealing with this and is it on a daily basis?

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It breaks my heart Gabe that you are still managing these symptoms. Treat it as unimportant, focus on your life and it will go away gently. I wont make any promises but if you gave me one month of taking my advice i feel really strongly you will no longer need to manage and you wont be troubled with it anymore. After all the things and methods youve tried will you not just try anxiety recovery. Please. If so let me know of a different platform i can message you on. I am just trying to help

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@yessir321

Look i am not denying doctors can make mistakes. But if this breathing symptom is not worsened by exertion i.e running then it is not true shortness of breath which means yes the feeling is very real but it false as they say pseudodyspnea. in that case, i am not preaching for everyone only in that case where its false, then it is either anxiety or the infamous damage to the espohagus from gerd (very strong link between reflux and anxiety also btw anyways). Guys no one could convince me it was anxiety, but i just want to help those who have tried all the avenues and are left hopeless because i know its very hard to convince any of the people who are still certain this is a physiological reason to this. If anyone is considering the possibility it is anxiety please read my other posts. Anxiety doesnt present in the way you all believe it is not the same as stress or worry, you can be worry free and have awful physical symptoms

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Pseudo dyspnea does not require that the shortness of breath be preceded by exercise. It is a shortness of breath without demonstrable physical cause. You have to exhaustively investigate all possible physical causes, though. Any doctor who tries two things and proclaims it to be anxiety is not a good doctor. That is not a mistake. That is being a poor doctor.

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I came upon a study today in which they described “sighing dyspnea”. That’s an interesting, and incredibly accurate, description of mine.

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@dampiera

How many of you are using a CPAP? There is a correlation between GERD and CPAP use. I tried to share a few links here but it wouldn’t allow me to. I’m going to try a different way. Copy the items below and add the appropriate w w w. before each in your browser bar.

The first details the correlation between CPAP and GERD. The second details the symptoms of “Silent Reflux”, (I hadn’t realized that it is a gaseous mist rather than a liquid.) and the third details the pulmonary complications that arise from GERD.

ncbi.nlm.nih.gov/pmc/articles/PMC3525982/

ncbi.nlm.nih.gov/pmc/articles/PMC3513884/

ncbi.nlm.nih.gov/pmc/articles/PMC3525982/

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Thanks for sharing @dampiera, that's an interesting comparison between GERD and sleep apnea/CPAP usage. I've done some research on silent reflux and is also an interesting possible correlation. I think the irritation of the reflux can cause inflammation of airways and other things which could cause some of the breathing experience many people experience.

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@dampiera

I came upon a study today in which they described “sighing dyspnea”. That’s an interesting, and incredibly accurate, description of mine.

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I've looked into this myself and find it interesting. I think it may be related to dyspnea in general or air hunger all of which are different terms for a similar thing. I think it does accurately describe what many are experiencing. The mental reassurance that I'm not in danger plus the breathing exercises, and a good diet and controlled exercise have helped me greatly over the years. I can tell you're very invested in finding correlations and information on a variety of causes and possibilities. It's certainly a journey of looking at various things, implementing some strategies, and tweaking along the way. Have you developed any strategies or solutions that have helped you along?

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@yessir321

As ive said a thousand times the way doctors test for is it anxiety or not is a few things.
1. If the SOB gets no worse during exertion
2. If the oxygen levels are normal WHILE you feel SOB(in a case of an allegy flare up it you would only feel SOB while that flare up occurred which is unlikely to coincide when you get tested by pulmonary doctor

These two things can make a doctor conclude most of the time that it is pseudodyspnea.

Just a question in your case, you got tested and it said you were allergic to dairy and gluten. Or did the symptoms disappearance coincide with when you werent eating dairy and gluten

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Again - just because the doctors didn’t find anything with their tests, doesn’t mean there is no physiological cause. We don’t know everything. We are still learning things about human body. When you have SOB you usually go to the pulmonary doctor. BUT IT DOESNT HAVE TO BE A PROBLEM WITH YOUR LUNGS. It can be allergies, it can be from spine, it can be from stomach, it can be from esophagus.

No it didn’t coincide. It was because of that.

I know how anxiety feels like. I actually experienced it quite a few time in the past 2 weeks. And guess what. No SOB. You know why? Because I stay away from my triggers. Because the problem wasn’t anxiety in the first place.

I’m not denying the effect of the mind on the body. But to tell people that if the doctors didn’t find anything it’s just anxiety and you should just move on with your life is really not a good advice. Have you even experienced it yourself? If you have you would know that it can’t be ignored.

I think you are biased towards one cause because that’s what you study and care about obviously.

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