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.

@mckaylah

Happened to find this while googling my symptoms hoping to find a reason behind my problem of not being able to take a deep breath or yawn, only short breaths. I seem to have the same issues as you, I recently got an endoscopy done towards the end of January and was diagnosed with GERD and a hiatal hernia. I used to get esophagus spasms daily, so bad that I ended up in the ER thinking I was having a heart attack. I often feel my throat very tight and can always feel my food stuck. I take famotidine (a prilosec) everyday which has helper tremendously with my acid reflux/heartburn. My breathing issues randomly come and go, but has lately kept me up for hours the last 3 nights, tonight being the worst. I am also hyper upper nasal and always have terrible phlegm issues and have yet to revisit an ENT. Wondering since I am just now seeing this years later if you have found the source of your issue or if you’re still struggling with it? Having all these issues at the age of only 19 is very worrisome to me. I sat up for an hour trying to breathe normal, it takes me a few minutes of weird jaw movements and trying to yawn to get my deep breath out just for it the feeling to come back immediately and being nonstop until I fall asleep. Really hoping to get some advice!! (Calling my doctor tomorrow but I know some are refusing to see people because of this coronavirus outbreak unless its an emergency.)

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I know people don't want to hear that changing their diet is beneficial, but it is. Do you eat a lot of vegetables vs junk food? Do you drink water vs soda? I had spasms, belching, sore throat, hoarseness. The first thing I did was change my diet. Eat magnesium rich foods...kale, cucumbers, salads. Snack on almonds, eat almond butter. Limit chocolate since it contributes to heartburn. Think about getting healthy. At 19 you want to start now. Find a healthy lifestyle influencer and follow them on YouTube.

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@mckaylah

Happened to find this while googling my symptoms hoping to find a reason behind my problem of not being able to take a deep breath or yawn, only short breaths. I seem to have the same issues as you, I recently got an endoscopy done towards the end of January and was diagnosed with GERD and a hiatal hernia. I used to get esophagus spasms daily, so bad that I ended up in the ER thinking I was having a heart attack. I often feel my throat very tight and can always feel my food stuck. I take famotidine (a prilosec) everyday which has helper tremendously with my acid reflux/heartburn. My breathing issues randomly come and go, but has lately kept me up for hours the last 3 nights, tonight being the worst. I am also hyper upper nasal and always have terrible phlegm issues and have yet to revisit an ENT. Wondering since I am just now seeing this years later if you have found the source of your issue or if you’re still struggling with it? Having all these issues at the age of only 19 is very worrisome to me. I sat up for an hour trying to breathe normal, it takes me a few minutes of weird jaw movements and trying to yawn to get my deep breath out just for it the feeling to come back immediately and being nonstop until I fall asleep. Really hoping to get some advice!! (Calling my doctor tomorrow but I know some are refusing to see people because of this coronavirus outbreak unless its an emergency.)

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@mckaylah- Welcome to Mayo Clinic Connect. I know that SOB can be very upsetting and difficult to deal with. GERD and a hiatal hernia will absolutely cause SOB. Most times now SOB is caused by being overweight and not getting exercise and diet. You are 19 years old? What were the recommendations from your doctor?

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@robkern3

@tonyagregg @gabrielm I know this thread is over a year old by now but I just discovered it for the first time. I started having SOB about 4 months ago and haven't been able to find a solution since. My doctor looked into anxiety, asthma, and we finally settled on GERD. Unfortunately, the Omeperazole I was prescribed doesn't seem to have a meaningful impact. I have good days and I have bad days but I can't seem to shake the SOB for more than a few days at a time. It's always present to some degree even on the best of days. Have you found any success since this thread was initially posted?

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@robkern3 Unfortunately I am still having this issue. It is always present, I am like you I have good days and bad days. November will be 2 years that I have dealt with this. Its frustrating, but I have learned to cope to some degree.

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@justlearning

Hey there thank you. After doing a lot of research i think its false dyspnea caused by airway inflammation. I can still do the eliptical but not treadmill. I've seen a neurologist who told me i dont have any neuromuscular diseases just mild carpal, and have seen a gastro, pulmonologist etc.

I have also found it easier to breath when leaning forward vs sitting up straight when on the computer, sometimes even resting the bottom of my sternum against a table.
I think its LPR which is a form of GERD causing false dyspnea. if you google psuedo-dyspnea you can find an article by hannah sadaah

a) Esophagitis, or inflammation of the esophagus, is mostly caused by acid reflux, which is the backlash of stomach acid into the esophagus. Whereas the stomach is constituted like the mouth, the esophagus is constituted like the eye. A drop of lemon juice in the mouth tastes good but the same drop in the eye causes a red eye. Similarly, acid in the stomach is well tolerated because the stomach has a thick mucous coat whereas acid backlash into the esophagus burns and causes inflammation or esophagitis.

Esophagitis is like an iceberg, silent in the majority but causes symptoms in a small minority. Unaware, all of us backlash acid into the esophagus many times a day but anti-reflux defenses come to our rescue and wash the acid away. When our anti-reflux defenses fail, we develop esophagitis and some of us develop symptoms.

The common and well-known symptoms of esophagitis include heartburn, indigestion, abdominal pain, cough, chest pain, sore throat, and hoarse voice. A less known but more worrisome symptom is the feeling of shortness of breath, which usually occurs without the other, more common symptoms. Undiagnosed, this false shortness of breath or pseudo-dyspnea may lead to frequent heart and lung investigations and inappropriate treatments.

There are sensory nerve endings in the esophagus that can send false messages to the brain. When the esophagus is burned by refluxed acid, these nerve endings fool the brain into feeling short of breath, as though the lungs were not providing enough oxygen. Reacting to this feeling, the individual takes in deep sighs in an attempt to alleviate the perceived shortness of breath. But, the more and the deeper the sighs, the worse the perceived shortness of breath gets, rendering the individual restless and anxious. This restless anxiety leads the individual to pace or exercise, which temporarily relieves the shortness of breath. When motion ceases and the individual sits or lies down, the shortness of breath returns.

Treatment of this false shortness of breath relies on suppressing stomach acid and coating the esophagus with acid protecting agents. A combination of Omeprazole (or other acid suppressing medicines) plus Simethicone (or other acid protecting medicines) will give prompt relief and reassurance that there is nothing wrong with the heart or lungs.

Esophageal pseudo-dyspnea cannot be diagnosed with tests, examinations, or procedures. This diagnosis is entirely clinical, based on the history alone, and can only be confirmed with a therapeutic trial. Obtaining relief with acid suppressing and acid neutralizing agents confirms the diagnosis and cures the condition.

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Wow thanks for that @justlearning. Very interesting. Seems to make sense given that so many of us have similar GI issues. I have been taking Omeperazole for years, but given this info, may try Simethicone as a coating, since acid still gets into the esophagus even with acid reducers, they just neutralize the acid. Definitely worth a shot.

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@mckaylah

Happened to find this while googling my symptoms hoping to find a reason behind my problem of not being able to take a deep breath or yawn, only short breaths. I seem to have the same issues as you, I recently got an endoscopy done towards the end of January and was diagnosed with GERD and a hiatal hernia. I used to get esophagus spasms daily, so bad that I ended up in the ER thinking I was having a heart attack. I often feel my throat very tight and can always feel my food stuck. I take famotidine (a prilosec) everyday which has helper tremendously with my acid reflux/heartburn. My breathing issues randomly come and go, but has lately kept me up for hours the last 3 nights, tonight being the worst. I am also hyper upper nasal and always have terrible phlegm issues and have yet to revisit an ENT. Wondering since I am just now seeing this years later if you have found the source of your issue or if you’re still struggling with it? Having all these issues at the age of only 19 is very worrisome to me. I sat up for an hour trying to breathe normal, it takes me a few minutes of weird jaw movements and trying to yawn to get my deep breath out just for it the feeling to come back immediately and being nonstop until I fall asleep. Really hoping to get some advice!! (Calling my doctor tomorrow but I know some are refusing to see people because of this coronavirus outbreak unless its an emergency.)

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@mckaylah - I am still dealing with it as well and it's been a total of 8 years. But it was nearly gone for 3 of those years when I applied the breathing exercises. The air hunger still came back a couple of years ago and I've been dealing with it since, but to a somewhat milder degree. I also have good days and bad days, but am able to manage it by continuing to take Omeperazole, doing breathing exercises almost every day, and moderate weight lifting and walks almost every day.

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@justlearning

Hey there thank you. After doing a lot of research i think its false dyspnea caused by airway inflammation. I can still do the eliptical but not treadmill. I've seen a neurologist who told me i dont have any neuromuscular diseases just mild carpal, and have seen a gastro, pulmonologist etc.

I have also found it easier to breath when leaning forward vs sitting up straight when on the computer, sometimes even resting the bottom of my sternum against a table.
I think its LPR which is a form of GERD causing false dyspnea. if you google psuedo-dyspnea you can find an article by hannah sadaah

a) Esophagitis, or inflammation of the esophagus, is mostly caused by acid reflux, which is the backlash of stomach acid into the esophagus. Whereas the stomach is constituted like the mouth, the esophagus is constituted like the eye. A drop of lemon juice in the mouth tastes good but the same drop in the eye causes a red eye. Similarly, acid in the stomach is well tolerated because the stomach has a thick mucous coat whereas acid backlash into the esophagus burns and causes inflammation or esophagitis.

Esophagitis is like an iceberg, silent in the majority but causes symptoms in a small minority. Unaware, all of us backlash acid into the esophagus many times a day but anti-reflux defenses come to our rescue and wash the acid away. When our anti-reflux defenses fail, we develop esophagitis and some of us develop symptoms.

The common and well-known symptoms of esophagitis include heartburn, indigestion, abdominal pain, cough, chest pain, sore throat, and hoarse voice. A less known but more worrisome symptom is the feeling of shortness of breath, which usually occurs without the other, more common symptoms. Undiagnosed, this false shortness of breath or pseudo-dyspnea may lead to frequent heart and lung investigations and inappropriate treatments.

There are sensory nerve endings in the esophagus that can send false messages to the brain. When the esophagus is burned by refluxed acid, these nerve endings fool the brain into feeling short of breath, as though the lungs were not providing enough oxygen. Reacting to this feeling, the individual takes in deep sighs in an attempt to alleviate the perceived shortness of breath. But, the more and the deeper the sighs, the worse the perceived shortness of breath gets, rendering the individual restless and anxious. This restless anxiety leads the individual to pace or exercise, which temporarily relieves the shortness of breath. When motion ceases and the individual sits or lies down, the shortness of breath returns.

Treatment of this false shortness of breath relies on suppressing stomach acid and coating the esophagus with acid protecting agents. A combination of Omeprazole (or other acid suppressing medicines) plus Simethicone (or other acid protecting medicines) will give prompt relief and reassurance that there is nothing wrong with the heart or lungs.

Esophageal pseudo-dyspnea cannot be diagnosed with tests, examinations, or procedures. This diagnosis is entirely clinical, based on the history alone, and can only be confirmed with a therapeutic trial. Obtaining relief with acid suppressing and acid neutralizing agents confirms the diagnosis and cures the condition.

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@justlearning I have been to an ENT and they ran a scope down and told me there were no visual signs of damage and told me everything looks good. I am going to an Gastroenterologist Monday and maybe can get some answers. Also, I read the article on Psedodyspnea and I will let My GI doctor read it too, its very interesting thanks. 😉

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One pattern I have noticed...at least with the last series of posts is that a lot of us deal with acidity issues, GERD etc. At least it's one step on the path to discovery.

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@mckaylah

Happened to find this while googling my symptoms hoping to find a reason behind my problem of not being able to take a deep breath or yawn, only short breaths. I seem to have the same issues as you, I recently got an endoscopy done towards the end of January and was diagnosed with GERD and a hiatal hernia. I used to get esophagus spasms daily, so bad that I ended up in the ER thinking I was having a heart attack. I often feel my throat very tight and can always feel my food stuck. I take famotidine (a prilosec) everyday which has helper tremendously with my acid reflux/heartburn. My breathing issues randomly come and go, but has lately kept me up for hours the last 3 nights, tonight being the worst. I am also hyper upper nasal and always have terrible phlegm issues and have yet to revisit an ENT. Wondering since I am just now seeing this years later if you have found the source of your issue or if you’re still struggling with it? Having all these issues at the age of only 19 is very worrisome to me. I sat up for an hour trying to breathe normal, it takes me a few minutes of weird jaw movements and trying to yawn to get my deep breath out just for it the feeling to come back immediately and being nonstop until I fall asleep. Really hoping to get some advice!! (Calling my doctor tomorrow but I know some are refusing to see people because of this coronavirus outbreak unless its an emergency.)

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your best bet is to find a reputable surgeon and go under his directive, complete the tests, and get the surgery. Once GERD hits a certain point surgery is the best bet.

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@gabrielm

Wow thanks for that @justlearning. Very interesting. Seems to make sense given that so many of us have similar GI issues. I have been taking Omeperazole for years, but given this info, may try Simethicone as a coating, since acid still gets into the esophagus even with acid reducers, they just neutralize the acid. Definitely worth a shot.

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Order gaviscon advance from the UK its good, but to be honest, once LPR starts to affect your breathing, then surgery becomes a more viable option.

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Has anyone noticed neuropathy issues with their GERD?

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