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

I asked my pulmonologist about sighing dyspnea and he had no idea what I was talking about....it could very well be an outdated term for something though

Jump to this post

I think we know more than these so called experts lol...

REPLY
@gabrielm

@ssgaurav2000 Interesting read. I hadn't come across this in all my research. This seems to be the only thing on it; I haven't found anything else. There's no apparent cause or treatment other than just reassure patients. But very interesting read. It might be another name for hyperventilation syndrome.

Jump to this post

I have another interesting post most recent one . Exact same symptoms.. Hope it will re assure all of us here

REPLY
@ssgaurav2000

I think we know more than these so called experts lol...

Jump to this post

Seriously! It seems like some of those things I've mentioned to my doctors are so common but they don't seem to be familiar with them. I just sometimes think they don't listen to what I'm saying.

REPLY

I tried to post a link but it’s not allowed since I’m Farley new here. Please Google Pseudo Dyspnea and read the findings or articles on that. There are actually many of them confirming this to be an actual thing. It means “false” shortness of breath and pretty much explains all or most of our general symptoms. Let me know what you guys think

REPLY

@gabrielm just an update. As of now my need to take a deep breath and yawning is gone. One doctor told me that it may be a tick and to resist the urge to take a deep breath especially when my oxygen levels are good and I have no major organs that is causing it. I thought at first that is silly, but I was desperate and decided to do it and it was hard at first not to do it, but it worked! As for now I am back to normal and pray it never comes back. I write not to boast, but to tell you what helped me and hopefully help others. Please keep me updated

REPLY

@gabrielm So here is my story, about 3 months ago I started feeling like I could not catch my breath. I went to the ER they thought it was my heart or my lungs, they did contrast Ct scan, and a nuclear stress test on my heart. All tests came back normal but still having issues with breathing, went to see my GI doctor because they wanted to do an endoscopy for suspected celiac, while he was scoping he said I have grade c esophagitis. He put me on 40 mg of omeprazole twice a day. This is about a month and a half of taking them with no relief of the SOB. I just had an appointment with my GI doctor told him my breathing still sucks, he told me the reason was silent reflux and to keep taking the meds and come see him in 6 months...At one point I felt I was getting better than suddenly I feel worse. I feel like I have to constantly clear my throat and that I have some type of congestion in my chest with not mucus or coughing. I am in desperate need of some type of relief as I feel I can't even work anymore without being out of breath. I have an appointment with the lung doctor next month and these appointments are so spread out. I have asthma but the inhaler is not responsive and does nothing to help the shortness of breath. Thanks for all the support here and this thread I have been watching it all the time for some type of help. I appreciate everyone here.

REPLY
@godislove

@gabrielm So here is my story, about 3 months ago I started feeling like I could not catch my breath. I went to the ER they thought it was my heart or my lungs, they did contrast Ct scan, and a nuclear stress test on my heart. All tests came back normal but still having issues with breathing, went to see my GI doctor because they wanted to do an endoscopy for suspected celiac, while he was scoping he said I have grade c esophagitis. He put me on 40 mg of omeprazole twice a day. This is about a month and a half of taking them with no relief of the SOB. I just had an appointment with my GI doctor told him my breathing still sucks, he told me the reason was silent reflux and to keep taking the meds and come see him in 6 months...At one point I felt I was getting better than suddenly I feel worse. I feel like I have to constantly clear my throat and that I have some type of congestion in my chest with not mucus or coughing. I am in desperate need of some type of relief as I feel I can't even work anymore without being out of breath. I have an appointment with the lung doctor next month and these appointments are so spread out. I have asthma but the inhaler is not responsive and does nothing to help the shortness of breath. Thanks for all the support here and this thread I have been watching it all the time for some type of help. I appreciate everyone here.

Jump to this post

I've had similar symptoms for 3 months that all started after an episode of overexertion after running. I've also been given an inhaler, as well as start on Nexium (although I suspect my stomach acid discomfort may be because of the all the anti-inflammatories I have to take). They saw pericarditis, pericardial effusion, pleural effusion, atelectasis with me. I'm still being treated for pericarditis with anti-inflammatories. Was told I have pleuritis. It feels like my chest just locks up at times and I can't get a deep breath to go down and having awful right side chest pain intermittently...it almost feels like my chest on the right side gets so inflamed it closes up. They are still trying to work out what's wrong with me...next cardiac MRI on Tuesday. When you get out of breath does it feel like congestion is actually blocking your breathing tubes?

REPLY
@tonyagregg

@gabrielm just an update. As of now my need to take a deep breath and yawning is gone. One doctor told me that it may be a tick and to resist the urge to take a deep breath especially when my oxygen levels are good and I have no major organs that is causing it. I thought at first that is silly, but I was desperate and decided to do it and it was hard at first not to do it, but it worked! As for now I am back to normal and pray it never comes back. I write not to boast, but to tell you what helped me and hopefully help others. Please keep me updated

Jump to this post

This is an interesting concept. Did you just resist the urge to take a deep breath even though you wanted to and feel the SOB and eventually it became normal again? @tonyagregg- did you have a stressful event prior to the supposed "tick" of starting? I read about something else posted earlier about sighing dyspnea which sounds like it could overlap with an OCD related type of behavior. In sighing dyspnea, a stressful event/time usually precedes the episodes in which the patient suddenly feels as though they cannot breathe. It is not a panic attack. A panic attack is acute and as we know our SOB is not an acute event it is more chronic (As is the condition I am describing, sighing dyspnea). I wonder if somehow my CO2 levels are all out of whack because I have been been struggling to take deep breaths for over a month now.
I went on a run yesterday and my breathing was fine even though it was 86 degrees and humid. However, this morning and last night (as I was up 3 times in night nursing a baby) my breathing is bad again. In stillness I notice I have to take deep breaths that can't be satisfied. The fact that I am able to go on a run might signify that there is no physical pathology going on? Anyone else okay during exercise but not good at night or other times? I do also feel a tightness in my chest which confuses the issue for me--reinforcing my anxiety that in fact there is some (terrible) underlying disease. For reference, I am a 41 year old woman (full time working mom of three young kids...so sleep deprived and with plenty of stress to go around).

REPLY
@helena4000

I've had similar symptoms for 3 months that all started after an episode of overexertion after running. I've also been given an inhaler, as well as start on Nexium (although I suspect my stomach acid discomfort may be because of the all the anti-inflammatories I have to take). They saw pericarditis, pericardial effusion, pleural effusion, atelectasis with me. I'm still being treated for pericarditis with anti-inflammatories. Was told I have pleuritis. It feels like my chest just locks up at times and I can't get a deep breath to go down and having awful right side chest pain intermittently...it almost feels like my chest on the right side gets so inflamed it closes up. They are still trying to work out what's wrong with me...next cardiac MRI on Tuesday. When you get out of breath does it feel like congestion is actually blocking your breathing tubes?

Jump to this post

@helena4000 when I get out of breath feels like I have to clear my throat then I try to take a few deep breaths until I get a good one. When walking or exercising I feel my heart beating faster than it used to. And I get tired faster. I accidentally took one too many of my meds yesterday for the reflux. I felt like it helped slightly with my breathing but my stomach is in so much pain along with bloating, diarrhea and excessive gas. Something I forgot to mention the GI doctor wants to operate on on esophagus to replace the sphinx valve he says mine is gone from the reflux. I have a busy day at work today just need to pray to God to give me strength and oxygen to breath. Good luck everyone keep in touch

REPLY
@godislove

@helena4000 when I get out of breath feels like I have to clear my throat then I try to take a few deep breaths until I get a good one. When walking or exercising I feel my heart beating faster than it used to. And I get tired faster. I accidentally took one too many of my meds yesterday for the reflux. I felt like it helped slightly with my breathing but my stomach is in so much pain along with bloating, diarrhea and excessive gas. Something I forgot to mention the GI doctor wants to operate on on esophagus to replace the sphinx valve he says mine is gone from the reflux. I have a busy day at work today just need to pray to God to give me strength and oxygen to breath. Good luck everyone keep in touch

Jump to this post

Oh my goodness. I'm sorry you have to go through this, I know it's very scary. I hope that the surgery will resolve it. Getting these symptoms of breathlessness is one of the worst things because it can be so many things.

REPLY
Please sign in or register to post a reply.