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.

@gsc

I am quite happy I came across this thread. Thought I was alone. 43 male in good health. Was shoveling snow one afternoon. Went to bed and couldn’t satisfy that last little bit of a deep breath. Maybe the last 5%. Ignored it for a few days. Eventually went to emergency a couple times at different hospitals. So far I have had. 3 EKG’s, blood work three times, X-ray twice. Ultrasound once, cardiac stress test and a pulmonary function test. Every test says I am fine. Not on any medication. Very rarely will have a beer. Never done drugs. Regular breathing is fine. I walk and jog daily. Combination being more then 10km a day. No issues when exercising. Gets worse when I start thinking about it. Find myself taking deep breaths for no reason other than to test it. I feel
Like there has to be a physical issue….. which eventually leads to an anxiety issue making it worse. Trying to see a ENT doctor. Incredibly frustrated. Any of you whom have commented above have any resolution or miracle diagnosis?

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Hi @gsc, I take it this started for you recently. Did it start while you were shoveling snow, or when you went to bed? The tests showing normal results is good. If you plan on getting more tests, I would look for any nutrient deficiencies, GI issues, thyroid, and possible vocal cord dysfunction. If possible, I wouldn't take deep breaths just to test it. I remember doing this a while back and I believe at least for me, it made the issue worse and contributed to me hyperventilating.

Do you normally breathe through your mouth and are you aware of any snoring while sleeping?

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@jteel82

Yeah, I have found it too and am happy. 41 year old male in good health, mine started in mid-Nov 2022. Ton of clean tests…x ray and EKG, cardio stress, CT angiogram w contrast, pulmonary function test. All I’ve seen is my total lung volume is 79% of where my average group would be, everything else fine. Been on omeprazole for almost a month and eating whole food fruit veg only. I have a ton of notes from last weekend to take to my next doctor visit on 2/7…will follow up. Basically I’m now taking easy, WFH as much as possible, stopped exercising, and am looking int long Covid possibilities. Also trying some Buteyko breathing which actually feels like it might be helping but one thing I would like tasted next week is my CO2 in blood. Totally sucks

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I hear you @jteel82, definitely not fun to deal with, but at least you now know there are many others who are going through the same thing. You're definitely not alone! Definitely let us know how your doctor's appointment goes. I'm glad the Buteyko exercises are helping you. Definitely worth it to stick with it as long as possible. Did you recently have Covid?

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@anamichelle

Hello! Thank you so much for sharing your story… I’ve been commented on something like this before but after reading a lot of comments I wanted to share my opinion.

I’ve been experiencing this air hunger for almost 10 years now and my heart is healthy, my lungs are super healthy, I don’t have anything relating to GERD. I’ve spent so much money trying to get to the bottom of this and nothing seems to work.

I’ve notice that I can forget about my air hunger when I’m distracted and that why all of my doctors tell me it’s has to be anxiety. I feel anxious but nothing extreme so I can’t accept this answer anymore.

A few months ago a friend of mine told my he has the same type of dyspnea and that his psychologist told him it could be a type of OCD or Tourette’s and that kinda made sense to me. I’ve notice that every time I can get through the need to take a deep breath it gets better… if I deny my body that satisfying breath, eventually the urge goes away, it takes A LOT to ignore the urge but the few times I’ve been able to do it, it helps a lot. As you mention Gabriel I also started doing Buteyko exercises and they seem to be helping.

Thank you for reading, greeting from Guadalajara, Mexico

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Thank you for sharing @anamichelle! That is definitely a very real possibility. While there may be an actual physical issue for some, doing something that distracts from breathing can help take the mind of off the symptoms. And maybe for others there's not a physical issue, but a mental or mind issue. Experiencing the air hunger sensation can definitely cause people to hyper focus on the breathing making it very noticeable and then can turn into an obsession. I've done (and still do) what you mention and simply welcome the sensation when it comes up and let it pass. You're right; for me most of the time it does pass while other times I do have to resolve the sensation with a deep breath, but knowing that I'm ok and being confident that it won't get worse definitely helps overall. Thank you again for sharing!

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I have had symptoms similar to yours for a large part of my life (I am now 57)... unable to get a "satisfying" breath and the perceived need to yawn constantly. This would come and go through the years with spells lasting for two to three months at a time. I have asked numerous doctors about it, and none EVER helped me until recently... in fact most passed it off a anxiety given that that my blood oxygen level was good... Recently I started having other troubling symptoms along with it: upper abdominal pain/discomfort, and and a perceived heart flutter. Long story short, I was referred to a cardiologist that listened to my symptoms for 5 minutes and diagnosed ulcers. The cardiologist immediately started me on sucralfate (ulcer medicine). Within three days, the breathing problems were gone and they haven't returned.... I continue to take the sucralfate daily. There are articles here on the Mayo website that refer to this problem a "false dyspnea" and doctors have written papers that link the condition with GERD... FYI I had taken a truck load of Prilosec and it never really helped the breathing problem... This is just my experience... of course I have no idea if your problem is in any way related to mine, but I understand the need for new ideas to discuss with your doctor.

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@billghsv

I have had symptoms similar to yours for a large part of my life (I am now 57)... unable to get a "satisfying" breath and the perceived need to yawn constantly. This would come and go through the years with spells lasting for two to three months at a time. I have asked numerous doctors about it, and none EVER helped me until recently... in fact most passed it off a anxiety given that that my blood oxygen level was good... Recently I started having other troubling symptoms along with it: upper abdominal pain/discomfort, and and a perceived heart flutter. Long story short, I was referred to a cardiologist that listened to my symptoms for 5 minutes and diagnosed ulcers. The cardiologist immediately started me on sucralfate (ulcer medicine). Within three days, the breathing problems were gone and they haven't returned.... I continue to take the sucralfate daily. There are articles here on the Mayo website that refer to this problem a "false dyspnea" and doctors have written papers that link the condition with GERD... FYI I had taken a truck load of Prilosec and it never really helped the breathing problem... This is just my experience... of course I have no idea if your problem is in any way related to mine, but I understand the need for new ideas to discuss with your doctor.

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@billghsv, thank you for sharing your experience. It helps many people here who might be having similar symptoms to know what to look for. I'm glad that the medication has helped your breathing problem to go away.

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@billghsv

I have had symptoms similar to yours for a large part of my life (I am now 57)... unable to get a "satisfying" breath and the perceived need to yawn constantly. This would come and go through the years with spells lasting for two to three months at a time. I have asked numerous doctors about it, and none EVER helped me until recently... in fact most passed it off a anxiety given that that my blood oxygen level was good... Recently I started having other troubling symptoms along with it: upper abdominal pain/discomfort, and and a perceived heart flutter. Long story short, I was referred to a cardiologist that listened to my symptoms for 5 minutes and diagnosed ulcers. The cardiologist immediately started me on sucralfate (ulcer medicine). Within three days, the breathing problems were gone and they haven't returned.... I continue to take the sucralfate daily. There are articles here on the Mayo website that refer to this problem a "false dyspnea" and doctors have written papers that link the condition with GERD... FYI I had taken a truck load of Prilosec and it never really helped the breathing problem... This is just my experience... of course I have no idea if your problem is in any way related to mine, but I understand the need for new ideas to discuss with your doctor.

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This is hopeful. I always check this thread to see if there have been any convincing cures to this issue. I recently saw the ENT for LPR, but it doesn’t seem to be going anywhere. I have chronic air hunger now for 15 months. It started out of nowhere and just persists. I am 43 and otherwise in excellent health.

I do have a question though: what type of workup did the cardiologist do? And how did (s)he find ulcers? I would have thought an ulcer is something that a gastroenterologist would find since it’s in the GI system.

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@gabrielm

Hi @gsc, I take it this started for you recently. Did it start while you were shoveling snow, or when you went to bed? The tests showing normal results is good. If you plan on getting more tests, I would look for any nutrient deficiencies, GI issues, thyroid, and possible vocal cord dysfunction. If possible, I wouldn't take deep breaths just to test it. I remember doing this a while back and I believe at least for me, it made the issue worse and contributed to me hyperventilating.

Do you normally breathe through your mouth and are you aware of any snoring while sleeping?

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Yes started Dec 27. Shovelled during the day. It was at night I first noticed when laying in bed. I don’t have any tests lined up in the near future. I will
Inquire about those things you mentioned. Thank you. My wife tells me I snore when I am very tired. I purchased a sleep apnea app thing and it is telling me I sleep very well. Trying my best to breath through my nose. I also have been doing the Buteyko breathing each morning drive to work. Last several days have been daily improvements.

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@gsc

Yes started Dec 27. Shovelled during the day. It was at night I first noticed when laying in bed. I don’t have any tests lined up in the near future. I will
Inquire about those things you mentioned. Thank you. My wife tells me I snore when I am very tired. I purchased a sleep apnea app thing and it is telling me I sleep very well. Trying my best to breath through my nose. I also have been doing the Buteyko breathing each morning drive to work. Last several days have been daily improvements.

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That's good that the breathing exercises are helping you. I would definitely stick with them as long as possible, and also add an evening/night session of breathing exercises if you can. Twice a day helped me improve quite a bit. I was doing it 3 or more times a day for a while, but figured twice a day was good for me. Another thing I did as part of the Buteyko method was taping my mouth shut at night for a few weeks to train my body to breathe through my nose at night. This also helped along with the breathing exercise and regular exercise. Let me know things are going after a while of continuing Buteyko. It'll definitely help others here to learn of other people's experience with breathing exercises.

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My shortness of breath happened after the left side of my diaphragm paralyzed !
My breathing is becoming worse and worse every day !
My lungs and heart is OK according to my doctors !
Does anyone know of a doctor in Oklahoma that specializes in the function of the diaphragm ?
Thanks

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Has anyone had the unfulfilling breaths and feel like you're waiting for the episode to 'shake' out? I have episodes that last anywhere from a few seconds to several minutes and trying to catch that real breath. I have to stand and block out all external stimuli to focus. My head sometimes needs to go side to side and the episodes always conclude with my head shaking rapidly as if I had just shivered-but only my head. The episodes Never resolve without the shaking.

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