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.

@yessir321

Guys, for a lot of you not all. This is anxiety. I know you have heard this countless times, and youll respond but im not anxious or stressed. However anxiety doesnt have to be mental. You can get a very distressing physical sensation and that will then cause you to fear the sensation and it comes back and back over and over again. However the way to live better with this is not by thinking your way through it with talk therapy or cbt. It is total acceptance of the sensation. It may surprise you but i will say you have totally accepted before, when the breathing sensation has been gone for perhaps a few hours or even days. However in its place was another 'issue' waiting for you to solve. I see the owner of this chat complains about sinus issues, i had similar issues i was considering nasal surgery. But not because i had a genuine issue it was all the adrenaline and cortisol built up from this breathing senastion i feared that caused me to hyper-fixate on a problem to fix. This is called somatic shifting in anxiety world, some of you may have gastrointestinal issues or pain or mental while you are free from the breathing one.
So, the solution is simple, yet the hardest thing to do speaking from personal experience. Total acceptance. This means not trying to feel better by avoiding distracting or thinking your way through it. If you feel bad you feel bad go about your day. (Id like to thank the person on this form who said breathing ocd cause in a way it is, it is all of you guys trying to DO something about the feeling is whats keeping it there). Acceptance means not letting it affect any part of your life, work as if you felt nothing, go out as if you felt nothing. Due to your poor habits you have caused this feeling to stay for aslong as it has. I suffered as much as all of you, everyone can recover.
READ ASAP
Hope and Help for Your Nerves
Book by Claire Weekes
At Last a Life: Anxiety and Panic Free
Book by Paul David

Also any anxiety teacher who reps these kinds of teachings,
I like shaan kassam but books first.

Understand there is nothing to fear anymore your breathing issues is just adrenaline making you feel breathless or suffocated or laboured breathing. Acceptance is not a tool though, cant go oh i accept when you feel bad and wish it gone asap. Acceptance is living your life with and without the sensations and DOING NOTHING TO FIX IT, let your body and brain heal itself. The books will explain all your questions.

Please if you are struggling just give this a chance, stop making all these medical appointments, these supplements or breathing exercises.
STOP TRYONG TO FIX THIS, LIVE YOUR LIFE AND ACCEPT IT ALONG FOR THE RIDE WITH NO FEAR OF IT. AND EVENTUALLY LONG TERM IT LESSENS TO THE POINT IT GOES FOREVER.

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I'm glad you've found healing & acceptance helped you, & there's wisdom in your words; anxiety can ruin our lives for sure! But everyone's path is dufferent. Please don't disparage or criticize others' journey. I, for one, & I'm sure many others, have lungs that are both filled with the ground-glass COVID causes; it's like double pneumonia. Even a few stairs or sometimes cooking dinner makes me huff & puff. I pray that all of us can stay hopeful & calm, & yes even accepting, as we walk out our own healing path. This season of life STINKS, and I, like a lot of others, am using everything I can - prayer & meditation/breathing & gentle exercises & also the wisdom & guidance from others including doctors, to know how to navigate this & help my body heal. And within that, I'm trying to cherish each moment for the good it holds no matter what. I offer grace & encouragement to each of you/us for one day at a time.

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@esra

hello@cynlee23
Thanks for your reply. Congratulations on your motherhood and I wish her to grow up in good health. I went to 'ENT' recently, there is no problem. We haven't been able to eliminate stomach and chest diseases yet, things are progressing slowly in Turkey these days. After the third breath, the need to take a deep breath arises. I have to yawn to take a deep breath. There is always a pressure in my stomach, sometimes there is chest tightness, a great heart palpitation, numbness in the hands, nasal congestion, it never goes away. I heard something from my doctor, although I'm not sure; I have seasonal asthma. Reflux acid triggers asthma. We haven't been able to prove its accuracy yet. Another suspicion is that there may be neurological causes. For example, when nerve endings such as vagus nerve, peripheral nerve, autonomic dysfunction, polyneuropathy are inflamed or because the nerves do not transmit correctly, the diaphragm of the stomach muscles can be affected (this is my thesis), so I want to go to a neurologist. I have a date tomorrow I hope we can come to a conclusion, I'm so sorry, I can't enjoy anything, really we do it manually while everyone is breathing automatically. Let's calm down and investigate, I'm not going to let this go on forever, I'm working hard, working overtime so that it doesn't affect my life. Please take care of yourselves, I hope we can talk in better days, I loved you without knowing it, I am sending lots of love to you all. I will stay updated frequently for results.

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Use protonix for two week and report the result, just protonix.

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Yessir321,
Your post is very interesting to me… I went through a year long spell of this air hunger 18 months ago. I had some GI issues and the pain caused my blood pressure to go up a little as well. In addition to the ulser med, I started taking a low dose of a beta blocker for elevated blood pressure. When I asked the Dr what the med was for, he said “it will take the edge off”. The beta blocker works by blocking the action of hormones like adrenaline… when I started the medicine, the breathing problems (air hunger) went away for me. Fast forward 18 months… my blood pressure is in check and I have lost some weight…. I went to the Dr to discuss stopping taking the beta blocker… he said okay, to take 1/2 a pill for a week… so i did, and the damn air hunger is starting back up! And I agree that the more one fixates on it, the worse it gets. I had originally believed that the problem was associated with the GI problem (I.e. ulcers) but I am starting to rethink that, and anxiety as you described it make sense. Thanks for your post.

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@jack10525

I have been dealing with this for at least 20 years. It really got worse about 5 years ago. I’ve had all types of tests for lungs, stomach, digestion. Maybe 18 months ago I was told by a Dr I had dumping syndrome where my stomach empties too fast. Usually an 1-2 hours after eating I feel bloated and short of breath. It happens with all meals but seems worse with lunch and especial if they are heavy. I’ve tried eating smaller portions but it is hit or miss. I’ve also been prescribed several rx that do nothing. Ready to give up.

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@jack10525 don't give up! I am sorry that it's gotten worse. But eating smaller meals being hit or miss is definitely a good thing and sign of hope. That means that you've done something that your body is responding positively to. That's definitely a good thing. Any amount of improvement is a big sign of hope. Have you tried or looked into breathing exercises?

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@billghsv

Yessir321,
Your post is very interesting to me… I went through a year long spell of this air hunger 18 months ago. I had some GI issues and the pain caused my blood pressure to go up a little as well. In addition to the ulser med, I started taking a low dose of a beta blocker for elevated blood pressure. When I asked the Dr what the med was for, he said “it will take the edge off”. The beta blocker works by blocking the action of hormones like adrenaline… when I started the medicine, the breathing problems (air hunger) went away for me. Fast forward 18 months… my blood pressure is in check and I have lost some weight…. I went to the Dr to discuss stopping taking the beta blocker… he said okay, to take 1/2 a pill for a week… so i did, and the damn air hunger is starting back up! And I agree that the more one fixates on it, the worse it gets. I had originally believed that the problem was associated with the GI problem (I.e. ulcers) but I am starting to rethink that, and anxiety as you described it make sense. Thanks for your post.

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@billghsv, interesting observations and food for thought, thank you!I know there's been a lot of discussion on doing things from distracting from the breathing such as hobbies or other activities that involve intense concentration. There could certainly be an element of focusing too much on the breathing. Thank you for sharing your experience and what's been helping. I know a lot of people will read your comment and have something to consider for their own situation.

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One thing not mentioned in the original post is if there is also low SpO2 levels (blood oxygen)? thank you

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@333amy333

One thing not mentioned in the original post is if there is also low SpO2 levels (blood oxygen)? thank you

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Hi @333amy333! My blood oxygen levels originally were normal and in fact was 100% at one point possibly indicating hyperventilation that was either part of the cause of the air hunger or the air hunger caused it. I think a lot of people in the comments also share their their O2 levels were normal. Definitely worth bringing up though so thank you for that!

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Hi, has anyone had any issues with worsening exhaled breathing? My inhaled breathing is fine, it's the exhaled breathing that seems to be worsening. It's only bad toward the end of the exhale. I can't seem to find anyone who can relate to this.

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@rkomenaka

Hi, has anyone had any issues with worsening exhaled breathing? My inhaled breathing is fine, it's the exhaled breathing that seems to be worsening. It's only bad toward the end of the exhale. I can't seem to find anyone who can relate to this.

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Hi @rkomenaka, can you describe more about what you're dealing with for the exhaled breathing? What is happening at the end of your exhale?

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@gabrielm

Hi @rkomenaka, can you describe more about what you're dealing with for the exhaled breathing? What is happening at the end of your exhale?

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Hi. Thanks for asking. I cant feel it too much if I breath normally. I only feel it when I force an exhale. It feels like my lungs are closing too soon and I cant push the air out. It gets a lot worse if I eat or lay on my back. If I am on my back, I can barely exhale at all.

Thanks again

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