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.

Hello, I just wanted to say that I am having the exact same issue. I started having shortness of breath about a year ago and I have constantly felt the urge to take deep breaths. I have also been diagnosed with GERD and I have been told that I have fatty liver while searching for an answer to my problem. I do not think anxiety is the problem and I can't find out what is. All of my blood work comes back normal and my lung tests come back normal as well. They used multiple scans to include X-rays, CT scans (with and without contrast), HIDA scan, Ultrasounds, and more. We are now looking at maybe my heart being my issue. So far we have determined that I have a slight heart murmur and am getting tested for Marfan's syndrome. If you figure anything out please let me know this problem is really bugging me too.

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@drakeo7

Hello, I just wanted to say that I am having the exact same issue. I started having shortness of breath about a year ago and I have constantly felt the urge to take deep breaths. I have also been diagnosed with GERD and I have been told that I have fatty liver while searching for an answer to my problem. I do not think anxiety is the problem and I can't find out what is. All of my blood work comes back normal and my lung tests come back normal as well. They used multiple scans to include X-rays, CT scans (with and without contrast), HIDA scan, Ultrasounds, and more. We are now looking at maybe my heart being my issue. So far we have determined that I have a slight heart murmur and am getting tested for Marfan's syndrome. If you figure anything out please let me know this problem is really bugging me too.

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Yes, heart issues can cause shortness of breath. It depends on the type of murmur involved. Some are completely harmless - then again, as we get older - things can change. There is something to the anxiety thing - and would not dismiss this. However - I will throw this out there…….DECONDITIONING can cause shortness of breath - decreased levels of activity over a period of time (such as what has occurred with many during Covid) - can take a real toll on the body - and lead to shortness of breath. Just an fyi - if you are using a statin medication for cholesterol issues - it can help with non-alcoholic fatty liver. Allergies can also trigger shortness of breath…….Just some things to ponder……I hope you and your doctors can unravel this. FYI - GERD can over time, change the way that we breathe - and we don’t realize it. Silent reflux can do the same thing. Read up on dysfunctional breathing habits……there is a lot to discover about this……There are exercises you can do, to correct any dysfunctional breathing…….that may relieve your shortness of breath. Keep us posted! So glad you are contributing here!

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@mostafamahjoori

Hi kelly
I have acid reflux
And i using ppi and other medicine for so i think its not relation between them
Recentlly i find out when im in public or talking whit other my symptoms get worse
Some people beleive this is OCD , like when someone wash his hands regularly
But i know for me whatever it is related to anxiey even when i dont feel anxious
I hate to be anyone who have to use medicine for rest of my life
My jaw and throat are hurt because of fighting whit it

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GERD and SILENT REFLUX, can cause some vocal chord dysfunction - which can lead to shortness of breath……sometimes hoarseness of your voice - and a feeling of running out of air when you talk. There could be more than one thing going on here at the same time. GERD and SILENT REFLUX, are famous for being related to a number of things. Just one more thing for you to ponder and explore. There is some interesting reading on all of this. I can feel that you are frustrated…….I have been down a similar road…….You are not alone!!!

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@kelly7232

Yes, heart issues can cause shortness of breath. It depends on the type of murmur involved. Some are completely harmless - then again, as we get older - things can change. There is something to the anxiety thing - and would not dismiss this. However - I will throw this out there…….DECONDITIONING can cause shortness of breath - decreased levels of activity over a period of time (such as what has occurred with many during Covid) - can take a real toll on the body - and lead to shortness of breath. Just an fyi - if you are using a statin medication for cholesterol issues - it can help with non-alcoholic fatty liver. Allergies can also trigger shortness of breath…….Just some things to ponder……I hope you and your doctors can unravel this. FYI - GERD can over time, change the way that we breathe - and we don’t realize it. Silent reflux can do the same thing. Read up on dysfunctional breathing habits……there is a lot to discover about this……There are exercises you can do, to correct any dysfunctional breathing…….that may relieve your shortness of breath. Keep us posted! So glad you are contributing here!

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DECONDITIONING! yes, after my lung surgery, my Pulmonologist put that in his report "probable deconditioning" as a potential cause of my shortness of breath. One is out of shape. Since I also have severe coronary blockage, I just had a stent put in so I will see if that helps with the heart as a cause of my shortness of breath. And I am starting cardiac rehabilitation. I sometimes have the feeling I don't know how to breathe so I will read up on dysfunctional breathing per your suggestion.

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@drakeo7

Hello, I just wanted to say that I am having the exact same issue. I started having shortness of breath about a year ago and I have constantly felt the urge to take deep breaths. I have also been diagnosed with GERD and I have been told that I have fatty liver while searching for an answer to my problem. I do not think anxiety is the problem and I can't find out what is. All of my blood work comes back normal and my lung tests come back normal as well. They used multiple scans to include X-rays, CT scans (with and without contrast), HIDA scan, Ultrasounds, and more. We are now looking at maybe my heart being my issue. So far we have determined that I have a slight heart murmur and am getting tested for Marfan's syndrome. If you figure anything out please let me know this problem is really bugging me too.

Jump to this post

Hi @drakeo7 glad you found us here! That's good that your tests are coming back normal, even though the down side is that they're not revealing much so far. Let me know how your heart test goes.

I know heart issues can cause air hunger or shortness of breath, but with your heart murmurs how is your heart rate? Has it been within a normal range or has it been out of a normal range, beating too fast or slow?

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@mostafamahjoori

Hi kelly
I have acid reflux
And i using ppi and other medicine for so i think its not relation between them
Recentlly i find out when im in public or talking whit other my symptoms get worse
Some people beleive this is OCD , like when someone wash his hands regularly
But i know for me whatever it is related to anxiey even when i dont feel anxious
I hate to be anyone who have to use medicine for rest of my life
My jaw and throat are hurt because of fighting whit it

Jump to this post

@mostafamahjoori how long have you been taking PPIs? Getting off of them after taking them for a while can lead to a rebound effect, but staying off them long enough, the body will adjust once again. Do you know what foods might trigger the acid reflux? For me, it was just about every food so I knew I had something beyond just normal heart burn.

Does your jaw hurt because of straining it trying to get a big breath?

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@gabrielm

@mostafamahjoori how long have you been taking PPIs? Getting off of them after taking them for a while can lead to a rebound effect, but staying off them long enough, the body will adjust once again. Do you know what foods might trigger the acid reflux? For me, it was just about every food so I knew I had something beyond just normal heart burn.

Does your jaw hurt because of straining it trying to get a big breath?

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I have been taking them for almost 1 year
Yes i can testing what you say and see something change or not
Altough when i dont taking them my stomach few bloating
Another point is my air hunger doesnt worst after eating food but still i want to be on healthy diet maybe something comes better

Actually May jaw hurt because of
my resist for yawn or deep breath
Im in fight with this feeling for 2 month
Now , my yawn dissappear but still im feeling i have to very very small yawning without open mouth every few minuets
Or instead of that i have to breathing deeply every few minuets and i can, i can breath deeply but its boring for every 3 or 4 minuets
These or my problems with air hunger now :
1-Every few minuets i have to breathing deeply like sighing or if i dont this i have to small yawn without opening my mouth
2- when im speaking or on a relatively activity, mode and feeling number 1 became more

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@tahiristan

Hi Dovey,

I read all your posts. Thanks for sharing! . We have a similar but also different issue going on here. I have done a ton of research as well and I have pages full of Google Docs. I have seen doctors both at the University of Utah where I live and more recently, the Mayo Clinic in Arizona. I am going to the National Jewish in Colorado and continuing to do whatever I can until this mystery is solved.

Would you be open to speaking one on one? I am looking to talk to people one on one and brainstorm things. I feel like this is more effective than writing on this thread (even though this thread is very helpful).

I will DM you and we can go from there. But Basically I have the same thing.. Mine goes as follows: (I am copy/pasting this from my google doc)

What does it feel like?

Every few minutes, or every few seconds (especially during an “episode”), I start getting this sensation that I am not getting enough air in. I don’t know how to describe it, except that it is a sensation that tells me I need to yawn, or take a deep breath. Then, I try to take a deep breath, a really deep breath where I can feel my stomach and to a smaller extent, my chest rise and then fall. (I am a diaphragmatic breather). Then there is a millisecond between the inhale and exhale where I can feel as if the air went all the way down into my belly. And then I let out a strong exhale, which can sound like a sigh. This satisfies my breath for the time being and then the cycle repeats, minutes later, sometimes seconds later. Sometimes not until hours later. This can be accompanied by tightness in the throat, which massaging it can help a little.

However, The scariest thing is when I am having an “episode”, and I try to take a deep breath, it doesn’t always satisfy the feeling or help relieve the tension. Then I will try again and it still won’t satisfy. This is where I need to keep calm and breathe in my nose and out my throat. Eventually I will get a breath in and I will shudder or feel a huge relief but also it scares me. In this case, I usually try to lay down with two pillows and try to distract myself with something else or meditate and calm down. I can’t always calm down (so I wonder if it is anxiety related).

And in rare instances, the sensation goes away but then I start feeling like I am no longer breathing. And I know this because I am still not satisfying a deep breath, but the urge to take a deep breath or yawn goes away. This is also where I have felt like passing out in the past, but this is very rare. I try to then force a yawn or deep breath but it doesn’t help. I try to lay down and breathe calmly and this kind of helps. Eventually it just resolves.

This sensation can also happen as I am falling asleep and I will get scared, but I have monitored my O2 through the night before, and it stays above 90 almost the whole time. So I need to remind myself it won’t kill me.

During the poor air quality winter days of 2022, I had this above sensation a lot and I couldn’t satisfy. I would keep trying and I can feel how the abnormal breathing took a toll on my muscles, even in my back, the muscles would ache because I was doing this constantly. I couldn’t make it stop

Basically it all started in 2013, got better from 2014-2021 and came back with a vengeance in Nov 2021. in 2013, it started after I cut pressure-treated lumber (I was warned never to because it has chemicals in it that can ruin your lungs).

I want to add that I recently have been diagnosed with Tourette's Syndrome (on 2/14/22). Also, recently I have been having this painful abdominal spasms, usually after I get a deep breath in and then exhale.

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Hi!

I messaged you, Im also in Colorado.

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@ashleyh

I am so happy I came across this post. I've had the same issues since July 2018. I'm a healthy, 23 year old and have never had problems like this in my life. I got married back in July, went on my honeymoon to the Bahamas, and when I came back home, I experienced shortness of breath and have ever since. Some days it's better than others, but it's always there. It almost feels uncomfortable to breathe deep. I've been to so many doctors appointments. My blood work is perfect and my lung/heart tests came back good. I even had my gallbladder checked and it's good. This is so frustrating and I hope we can all work together to find an answer!

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Did you find any answers?

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Has anyone found any answers on this. Been feeling the same way for a month now. Xray and everything normal. I don't understand I have never had any problems breathing before. No asthma or anything.

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