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.

@punknpie05

Hi Gabe,

Sorry to hear you’re going through this, as I know exactly how you feel. I also struggle with bouts of air hunger for months at a time, so I know how maddening it can be. I’ve recently been looking into hiatal hernia, and it seems like this may be relevant for you. URLs are disabled for me as I’m a new member (your post compelled me to join!), but if you Google
Hiatal Hernia: An Overlooked Cause of Disease By Dr Cliff Fruithandler DC, you can find some information and exercises that have been very helpful for me.

Good luck!

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@punknpie05, thanks for the info! Things have been much better for a while but always good to hear about possible causes and gives me and others people something to look into!

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@casrae

hi, I'm really happy I found ppl who are experiencing the same thing I am. I've been having SOB since the summer of 2020. Im 30 yo and I've never had issues w my lungs or asthma. I initially thought this was anxiety. Reasoning behind it - the less I thought about my breathing, the less issues I have w it (like if I'm completely focused on something and not in my own head.) I also go through bouts where I'm fine and then its non stop. I yawn constantly to get that full breath or I legit gag. It also puts a huge strain on my shoulders, jaw, and mid back. I do have some issues w sinus aggravation. I'm very congested in the mornings, I've noticed during my bouts that the more I keep my nose clear - the better my SOB (using nasal spray, Mucinex expectorant, Sudafed, cough drops.) I can only relate the issue to hyperventilating when you feel you can't breathe. Almost like claustrophobia. I initially went and saw a regular doc to check my lungs and treat me for anxiety. Lungs are fine and I have been on Lexapro for 2 years now and it might help a bit but it doesn't really do much for my SOB bouts. I'm hesitant to get any other tests done bc it seems for yall that it was a waste of time lol like the doc office ain't the most fun to deal w. Ugh but I can see how breathing exercises help (which I do sometimes,) I also notice if I'm working on keeping a healthier gut (probiotics, glutamine, vitamins - B12 included, healthier eating) it does seem to help. Also, I noticed too much caffeine - makes it worse (of course I still drink my coffee every morning *sigh*) BUT it truly is still a mystery on what this is exactly. It really lowers my quality of life.

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@casrae, sounds pretty similar to how it was for me when it this all came about. Are you otherwise otherwise healthy? Do you have any other conditions or issues (any that you feel comfortable sharing of course) that you know of? Over the years I’ve taken sort of holistic view of the condition and believe that there may be many interconnected things that affect the breathing including sinus issues like you mentioned. I too deal with sinus issues that exacerbate the breathing when my sinuses are inflamed and breathe easier when they’re not

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@micker

I had this SOB issue years ago for a few months and it finally went away at some point. A couple months ago, I got a cold(probably covid) and had a very hoarse voice. I got better after about a week or so, but then I started getting the SOB again. Feeling like I need to take a deep breath and sometimes, it feels like I don't fill my lungs up enough and I'm just very aware of my breathing.
It's gotten a better after a couple months now, but it's still there. I can at least get a satisfying breath easier, without having to bend over and take several deep breaths. It's the worst right before I eat dinner and I'm tired/hungry. When I workout, I feel great and breathing feels pretty normal. I haven't gone to the Dr's, because I know they won't have any idea what it is. Not a fun thing to go through, but hoping it fades away again.

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@micker I hope it goes away soon for you too! The doctors may not find anything specific but I think it helps to eliminate a lot of possibilities just to be sure. Sometimes I would get tests done knowing that it would probably come back normal but it still gave me some reassurance that I was healthy in other areas and eliminated possibilities so that I could look into other things. Might I suggest getting a few basic tests done if you’re able. They just might discover something! For example, with this breathing issue, an endoscopy years ago revealed I had GERD and was able to get that treated. May or may not be related to the breathing but it revealed an issue I could focus on resolving.

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Happy to come across this post I have had the exact same symptoms from March 25th until beginning of June it went away for about a month and is back again. I have been to ENT everything was fine mild inflammation so prescribed inhaler and Flonase they did nothing for me. Prilosec seemed to put a band aid over it I have recently gone to my doctor and he has diagnosed me with anxiety I don’t believe that is the case. I have also scheduled an appointment with a cardiologist and pulmonologist. I am a serious power lifter and am worried I have something serious going on possibly an aortic aneurysm or intercostal strain but I find myself continuing to yawn 75-100 times a day to catch a big breathe with immense pressure on my chest everyday as if someone is sitting on my chest. If these two test come back normal I have no other ideas. I have had an ekg/normal x ray/normal /blood test/normal

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@camslam35

Happy to come across this post I have had the exact same symptoms from March 25th until beginning of June it went away for about a month and is back again. I have been to ENT everything was fine mild inflammation so prescribed inhaler and Flonase they did nothing for me. Prilosec seemed to put a band aid over it I have recently gone to my doctor and he has diagnosed me with anxiety I don’t believe that is the case. I have also scheduled an appointment with a cardiologist and pulmonologist. I am a serious power lifter and am worried I have something serious going on possibly an aortic aneurysm or intercostal strain but I find myself continuing to yawn 75-100 times a day to catch a big breathe with immense pressure on my chest everyday as if someone is sitting on my chest. If these two test come back normal I have no other ideas. I have had an ekg/normal x ray/normal /blood test/normal

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@camslam35, happy you came across this post too! But sorry that you have these symptoms. I assume the inflammation is due to acid reflux or something else? For me I've noticed that if I have reflux and I forgot to take the prilosec for a day, it will feel like there's a large weight on my chest. Definitely not a pleasant feeling but the medication does help.

The tests may come back normal for you, but it's possible that there may still be something there that the main tests won't pick up. I think there are a lot of tests that could reveal something, but those usually take time to figure out what you might test for.

Do you recall any specific event that may have led to the symptoms first developing, such as a weightlifting event or something else, or did it come about some other way?

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@gabrielm

@camslam35, happy you came across this post too! But sorry that you have these symptoms. I assume the inflammation is due to acid reflux or something else? For me I've noticed that if I have reflux and I forgot to take the prilosec for a day, it will feel like there's a large weight on my chest. Definitely not a pleasant feeling but the medication does help.

The tests may come back normal for you, but it's possible that there may still be something there that the main tests won't pick up. I think there are a lot of tests that could reveal something, but those usually take time to figure out what you might test for.

Do you recall any specific event that may have led to the symptoms first developing, such as a weightlifting event or something else, or did it come about some other way?

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Hello. So sorry to mislead you. I have IPF. My Dr feels it is related.to Covid .and or the shot itself. Please feel free to chat Thank you Claire

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@longingforair

Hi Tonya,You may want to consider Babesia infection as the cause of your air hunger. That's what causes mine. May be a miracle answer, but the cure is a problem for some people like me (i.e., not cured by standard treatment).

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Hi Tonya, this is interesting because in the summer of 2020 I began experiencing odd health issues. I am a healthy and active 43 year old male. However, in June 2020 I began to have aches and pains throughout my body. I would wake up in the morning with pain in my shoulders, elbows, wrists, and neck. It was really bad. Then a few weeks later my knees started swelling up along with my ankles. It was so weird because I knows I hadn’t twisted anything. My primary care physician couldn’t find anything wrong. I finally went to an Ortho physician because my knees were so swelled up (both never swelled up at the same time). He drained my left knee and sent it for testing but everything came back fine. He referred me to a rheumatoid specialist because he thought maybe I had rheumatoid arthritis. That doctor sent me for tons of blood work - seriously they took 20 viles of blood from me! Everything came back fine within a few days. Then one night about 2 weeks after the other results, I had an email that stated new test results were in. I opened it and it showed I had tested positive for Lyme! I google the symptoms and I had just about every one of them except the bulls eye. The put me on doxycycline and within 2 weeks I started feeling great. Then about 4 months later I started have this need to take a dee breath out of no where. My doctor requested an echo, pulmonary function test, X-ray. Everything looked fine. She put me on panteprazone for 30 days for GERD but really did nothing. I finally convinced my doc to refer me to an infectious disease specialist to see if they can find if I have lingering effects from Lyme. But as some others indicated, i really wouldn’t call my issue shortness of breath. I can still work out and run and actually feel better after doing so. It’s sitting at my work desk or watching TV that I seem to notice it the most. My wife says I don’t do it during my sleep. Oh, and they also thought I might have anxiety but I don’t think that’s it.

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@boughner13

Hi Tonya, this is interesting because in the summer of 2020 I began experiencing odd health issues. I am a healthy and active 43 year old male. However, in June 2020 I began to have aches and pains throughout my body. I would wake up in the morning with pain in my shoulders, elbows, wrists, and neck. It was really bad. Then a few weeks later my knees started swelling up along with my ankles. It was so weird because I knows I hadn’t twisted anything. My primary care physician couldn’t find anything wrong. I finally went to an Ortho physician because my knees were so swelled up (both never swelled up at the same time). He drained my left knee and sent it for testing but everything came back fine. He referred me to a rheumatoid specialist because he thought maybe I had rheumatoid arthritis. That doctor sent me for tons of blood work - seriously they took 20 viles of blood from me! Everything came back fine within a few days. Then one night about 2 weeks after the other results, I had an email that stated new test results were in. I opened it and it showed I had tested positive for Lyme! I google the symptoms and I had just about every one of them except the bulls eye. The put me on doxycycline and within 2 weeks I started feeling great. Then about 4 months later I started have this need to take a dee breath out of no where. My doctor requested an echo, pulmonary function test, X-ray. Everything looked fine. She put me on panteprazone for 30 days for GERD but really did nothing. I finally convinced my doc to refer me to an infectious disease specialist to see if they can find if I have lingering effects from Lyme. But as some others indicated, i really wouldn’t call my issue shortness of breath. I can still work out and run and actually feel better after doing so. It’s sitting at my work desk or watching TV that I seem to notice it the most. My wife says I don’t do it during my sleep. Oh, and they also thought I might have anxiety but I don’t think that’s it.

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Hi @boughner13, glad you recovered from the Lyme disease. Wondering if any of the medication you went on caused the breathing issue. Do you think the symptoms started around the time you started taking a medication?

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@tonyagregg

@gabrielm omg i recently started experiencing the same thing. I am not stressed or have anxiety. It started with me after I started running. I dont have that problem while i am running its several hours later then i will have days that its better than other. Have you had any relief?

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Hi! I know this is an older post, but I stumbled upon this due to my recent problems with this same issue. Has anything changed for you? I actually noticed this exact problem when I was training for my first marathon. It’s been 2 months since the race, i still do HIIT training daily and usually feel fine when I’m exercising and get this shortness of breath at rest?!

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@clairemclaughlin

Hello. So sorry to mislead you. I have IPF. My Dr feels it is related.to Covid .and or the shot itself. Please feel free to chat Thank you Claire

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Claire,
I had to look up IPF, and am so sorry you have this. Your doctor feels the IPF is related to Covid or the vaccine?
When I read the initial post by Gabe, I found that most of his description matched my symptoms. But, they all pre-dated Covid. I never got the vaccine. I did get Covid in June of this year, and while miserable, it never exacerbated my breathing issues.
I am worried, though, about my lungs, as my father passed from COPD. He was a smoker, and our family home was heated with a wood burning fireplace. Please tell us about your IPF.

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