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.

@helena4000

Is that for breathlessness?

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@helena4000 please go back and read my post. It sounds so much like yours and it started after I got a new tredmill and started running. I am 43 and in good health. It just feels like I cant take a full deep breath. Protonix 40 mg helped me as others like prilosec and zantac didnt. I am going to see an ENT on the 4th of April and had to stop taking the medicine and the yawning and trying to take a deep breath started back. I do feel a lump in my throat at times and one side of my throat hurts. I am almost positive its silent reflux but will not have a definitive answer until i see him.

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@tonyagregg

@chines118 please do keep us posted. I also will do the same thing, so that maybe I can help others.

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UPDATE: I just got back from the gastroenterologist, and she said that I definitely have some sort of acid reflux. She also strongly suspects that I have eosinophilic esophagitis, due to my history of asthma, allergies, and ezcema as a child and the “swollen” feeling I have in my throat and my indigestion. She has me starting 40 mg of omeprazole once per day tomorrow, as well as a probiotic. I’m also going to get an endoscopy done sometime in the next month to comfirm the EoE and also to assess any other damage being done by my reflux. I know you said Prilosec (Omeprazole) did not help you, but I’m staying optimistic since the dosage I’m going on is twice as high as OTC Prilosec, and the doctor said she is willing to double it if it doesn’t help. I’m really hoping this does something in the next few weeks and I will continue to keep you all updated.

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@chines118

UPDATE: I just got back from the gastroenterologist, and she said that I definitely have some sort of acid reflux. She also strongly suspects that I have eosinophilic esophagitis, due to my history of asthma, allergies, and ezcema as a child and the “swollen” feeling I have in my throat and my indigestion. She has me starting 40 mg of omeprazole once per day tomorrow, as well as a probiotic. I’m also going to get an endoscopy done sometime in the next month to comfirm the EoE and also to assess any other damage being done by my reflux. I know you said Prilosec (Omeprazole) did not help you, but I’m staying optimistic since the dosage I’m going on is twice as high as OTC Prilosec, and the doctor said she is willing to double it if it doesn’t help. I’m really hoping this does something in the next few weeks and I will continue to keep you all updated.

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Thanks for the update! Did she prescribe a steroid like flonase or anything to help with the inflammation? I am asking because the same time my doctor prescribed protonix, she also prescribed a steroid nasal spray called Flonase. I didn't think much of letting everyone know because we were focused more on silent reflux. Who knows maybe it was a combination of the 2. I did stop that along with the protonix so I may start that back to see if I notice a difference. I think you can get Flonase OTC now.

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@tonyagregg

Thanks for the update! Did she prescribe a steroid like flonase or anything to help with the inflammation? I am asking because the same time my doctor prescribed protonix, she also prescribed a steroid nasal spray called Flonase. I didn't think much of letting everyone know because we were focused more on silent reflux. Who knows maybe it was a combination of the 2. I did stop that along with the protonix so I may start that back to see if I notice a difference. I think you can get Flonase OTC now.

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I have actually been on OTC Flonase for about 2 months now, and it’s done wonders for my nose but nothing for my shortness of breath. It could be having a small affect but nothing significant. If it is eosinophilic esophagitis, then the first line of treatment is a moderate dose of proton pump inhibitors (omeprazole), the second line of treatment is a high dose of PPI’s, the third is swallowed steroids to coat the esophagus, and the fourth and final is endoscopic dilation.

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I've been reading through this thread for a few days now. After tons of research on the internet I've really found nothing that matches my symptoms as succinctly as the mysterious condition described by so many of you here. I've been seeking answers for about a month now, but my condition began long ago. I'd say I first noticed something was off with my breathing about 2 years ago, and ever since then it's come and gone with varying levels of severity. However, this time around it was seriously exacerbated by a cold, and that was a little over a month ago. I've been struggling to get that deep breath ever since. Some days are better than others. A lot of forced yawning! I've found that Buteyuko breathing to be helpful, and I've also tried the vitamin b12, and started taking a PPI although I haven't noticed much heartburn. The doctor has me on symbicort, Ventolin, singular, and an anti anxiety. I know this isn't purely anxiety because even after taking the meds, I still can't get a deep breath - even though I'm totally relaxed and all my problems seem unimportant. The other meds seem to just barely help, but after a month they certainly have not cured me of this awful condition.

I had a pulmonary function test last Friday and I'm waiting to hear the results. My fear is that like many of you, the test results will be normal, and I'll be left with more questions than answers.

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@alureon

I've been reading through this thread for a few days now. After tons of research on the internet I've really found nothing that matches my symptoms as succinctly as the mysterious condition described by so many of you here. I've been seeking answers for about a month now, but my condition began long ago. I'd say I first noticed something was off with my breathing about 2 years ago, and ever since then it's come and gone with varying levels of severity. However, this time around it was seriously exacerbated by a cold, and that was a little over a month ago. I've been struggling to get that deep breath ever since. Some days are better than others. A lot of forced yawning! I've found that Buteyuko breathing to be helpful, and I've also tried the vitamin b12, and started taking a PPI although I haven't noticed much heartburn. The doctor has me on symbicort, Ventolin, singular, and an anti anxiety. I know this isn't purely anxiety because even after taking the meds, I still can't get a deep breath - even though I'm totally relaxed and all my problems seem unimportant. The other meds seem to just barely help, but after a month they certainly have not cured me of this awful condition.

I had a pulmonary function test last Friday and I'm waiting to hear the results. My fear is that like many of you, the test results will be normal, and I'll be left with more questions than answers.

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@alureon - Good morning and welcome to Mayo Connect. I am a volunteer mentor for Mayo Connect and have a history of 22+ years of lung cancers, with COPD and Emphysema. It's very scary feeling when you can't seem to catch your breath. Anxiety is a huge factor and so are a few more things. When there is shortness of breath your whole body tenses up, so in effect you are tense and breathing is more difficult. You may not realize it at the time. Also check to make sure that you are using you're inhalers correctly. You have 2 good ones. The best result is with a spacer and they can be purchased through the drug store and maybe your dr.
here is boring but great video that shows what to do. https://www.youtube.com/watch?v=hCAsW7OM9Ns&t=15s
I hope that your breathing test will tell you some answers.
Surprisingly enough you can have "a silent gerd". https://www.webmd.com/heartburn-gerd/guide/laryngopharyngeal-reflux-silent-reflux#1- this explains it.

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@alureon

I've been reading through this thread for a few days now. After tons of research on the internet I've really found nothing that matches my symptoms as succinctly as the mysterious condition described by so many of you here. I've been seeking answers for about a month now, but my condition began long ago. I'd say I first noticed something was off with my breathing about 2 years ago, and ever since then it's come and gone with varying levels of severity. However, this time around it was seriously exacerbated by a cold, and that was a little over a month ago. I've been struggling to get that deep breath ever since. Some days are better than others. A lot of forced yawning! I've found that Buteyuko breathing to be helpful, and I've also tried the vitamin b12, and started taking a PPI although I haven't noticed much heartburn. The doctor has me on symbicort, Ventolin, singular, and an anti anxiety. I know this isn't purely anxiety because even after taking the meds, I still can't get a deep breath - even though I'm totally relaxed and all my problems seem unimportant. The other meds seem to just barely help, but after a month they certainly have not cured me of this awful condition.

I had a pulmonary function test last Friday and I'm waiting to hear the results. My fear is that like many of you, the test results will be normal, and I'll be left with more questions than answers.

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I think the best strategy, no matter what the actual problem is, is to carefully rule as many things out as possible, one by one. Try a pulmonologist to rule out a lung problem, a cardiologist to rule out heart problems, and a gastroenterologist to rule out GI problems. After that it could still be muscular, neurological, or psychological, so there would still be hope. Also, when you really focus on the shortness of breath, is your difficulty with the inhaling or the exhaling? Because lung problems almost always cause some kind of difficulty exhaling, so that can be used to quickly rule that out.

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@alureon

I've been reading through this thread for a few days now. After tons of research on the internet I've really found nothing that matches my symptoms as succinctly as the mysterious condition described by so many of you here. I've been seeking answers for about a month now, but my condition began long ago. I'd say I first noticed something was off with my breathing about 2 years ago, and ever since then it's come and gone with varying levels of severity. However, this time around it was seriously exacerbated by a cold, and that was a little over a month ago. I've been struggling to get that deep breath ever since. Some days are better than others. A lot of forced yawning! I've found that Buteyuko breathing to be helpful, and I've also tried the vitamin b12, and started taking a PPI although I haven't noticed much heartburn. The doctor has me on symbicort, Ventolin, singular, and an anti anxiety. I know this isn't purely anxiety because even after taking the meds, I still can't get a deep breath - even though I'm totally relaxed and all my problems seem unimportant. The other meds seem to just barely help, but after a month they certainly have not cured me of this awful condition.

I had a pulmonary function test last Friday and I'm waiting to hear the results. My fear is that like many of you, the test results will be normal, and I'll be left with more questions than answers.

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I posted to this issue a few weeks ago. Same problem as all you. I randomly can’t take a deep breath. GP, Pulminary, Cardio docs all day I’m fine. I cannot accept that it’s anxiety. About a week ago I stopped taking my sleeping meds (Lunesta) and within two days I was completely back to normal but it lasted just a few days and now it’s back. Could it be allergies?

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@davek

I posted to this issue a few weeks ago. Same problem as all you. I randomly can’t take a deep breath. GP, Pulminary, Cardio docs all day I’m fine. I cannot accept that it’s anxiety. About a week ago I stopped taking my sleeping meds (Lunesta) and within two days I was completely back to normal but it lasted just a few days and now it’s back. Could it be allergies?

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I just had an appointment yesterday and got a "possible" diagnosis of pericarditis after they did a stress test with ultrasound...after a month of my young doctor pushing the anxiety thing on me. The older cardiologist asked me a few questions, and then he left, and the next thing I know my doctor gets dragged into the examination room. The older cardiologist seemed a little miffed because I told him I saw my doctor 3 weeks ago for this and nothing was done.

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@chines118

I think the best strategy, no matter what the actual problem is, is to carefully rule as many things out as possible, one by one. Try a pulmonologist to rule out a lung problem, a cardiologist to rule out heart problems, and a gastroenterologist to rule out GI problems. After that it could still be muscular, neurological, or psychological, so there would still be hope. Also, when you really focus on the shortness of breath, is your difficulty with the inhaling or the exhaling? Because lung problems almost always cause some kind of difficulty exhaling, so that can be used to quickly rule that out.

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I don't understand why doctors don't rule all that stuff out first and then consider anxiety.

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