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.

@gabrielm

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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Hi Gabe, it’s been over a year since I posted. My SOB is still here but it seems to be ok some days worse at other times but never really does away. I was thinking I never was diagnosed with COVID but I did have the 2 step vaccine in August 2021. My SOB symptoms started around December 2021, at least what I remember. T could have started earlier than that but I just didn’t notice it. It may not have anything to do with COVID vaccine or Lyme but it is an interesting coincidence. I’ve been watching what I eat to see if that makes a difference in a good day vs bad day but haven’t been able to single anything out. I do notice yawning and the need to burp more after I eat. But again, it never fully goes away. I am ready to see more of a specialist to see if we can find a reason. I’m not currently on any meds either so that doesn’t seem to have any impact.

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@boughner13

Hi Gabe, it’s been over a year since I posted. My SOB is still here but it seems to be ok some days worse at other times but never really does away. I was thinking I never was diagnosed with COVID but I did have the 2 step vaccine in August 2021. My SOB symptoms started around December 2021, at least what I remember. T could have started earlier than that but I just didn’t notice it. It may not have anything to do with COVID vaccine or Lyme but it is an interesting coincidence. I’ve been watching what I eat to see if that makes a difference in a good day vs bad day but haven’t been able to single anything out. I do notice yawning and the need to burp more after I eat. But again, it never fully goes away. I am ready to see more of a specialist to see if we can find a reason. I’m not currently on any meds either so that doesn’t seem to have any impact.

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Thank you for the update. Sorry that it hasn't gone completely away. But definitely take the good days as they come. Are you able to do any regular exercise, even mild exercise?

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Hi everyone,
I was amazed to read this thread, as it exactly describes the issue I've been experiencing for the past 9 months. A constant need to sigh or yawn to get a satisfactory breath, that came on suddenly after a 145 km cycling event. I've done all the testing....lung function, cardio pulmonary exercise test, CT scans, blood tests......and have been cleared by two lung and sleep doctors. It does not affect by ability to perform athletically, but it does impact my desire to exercise. I have also suffered from GERD in past and took PPIs for a long period. The onset of chronic sighing and yawning loosely coincided with reducing my PPI dosage to 20 mg and then 10 mg after having no issues for years. I am starting to wonder whether the GERD is coming impact plus LPR as I have a feeling of a lump in my throat, constant throat irritation, and constant need to clear my throat. But I'm still not sure GERD or LPR are the cause.
Have there been any further developments here?

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@marcuscurypko

Hi everyone,
I was amazed to read this thread, as it exactly describes the issue I've been experiencing for the past 9 months. A constant need to sigh or yawn to get a satisfactory breath, that came on suddenly after a 145 km cycling event. I've done all the testing....lung function, cardio pulmonary exercise test, CT scans, blood tests......and have been cleared by two lung and sleep doctors. It does not affect by ability to perform athletically, but it does impact my desire to exercise. I have also suffered from GERD in past and took PPIs for a long period. The onset of chronic sighing and yawning loosely coincided with reducing my PPI dosage to 20 mg and then 10 mg after having no issues for years. I am starting to wonder whether the GERD is coming impact plus LPR as I have a feeling of a lump in my throat, constant throat irritation, and constant need to clear my throat. But I'm still not sure GERD or LPR are the cause.
Have there been any further developments here?

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I've had to up my PPI since COVID as well. I am trying to wean off of it as I know it has side effects. One of them is it can affect your bones and also, I find I do not absorb supplements & meds as well being on a PPI. I take D3 +K2 because the K2 helps my body to absorb the D3. I clear my throat constantly as there is mucus in the back a lot since COVID. I had an endoscopy & dilation back in May and the doctor said everything looked normal except for a hiatal hernia. He even checked for candida in the esophagus. Sometimes it is hard to tell if the pain I feel is coming from my asthma or reflux.

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@marcuscurypko

Hi everyone,
I was amazed to read this thread, as it exactly describes the issue I've been experiencing for the past 9 months. A constant need to sigh or yawn to get a satisfactory breath, that came on suddenly after a 145 km cycling event. I've done all the testing....lung function, cardio pulmonary exercise test, CT scans, blood tests......and have been cleared by two lung and sleep doctors. It does not affect by ability to perform athletically, but it does impact my desire to exercise. I have also suffered from GERD in past and took PPIs for a long period. The onset of chronic sighing and yawning loosely coincided with reducing my PPI dosage to 20 mg and then 10 mg after having no issues for years. I am starting to wonder whether the GERD is coming impact plus LPR as I have a feeling of a lump in my throat, constant throat irritation, and constant need to clear my throat. But I'm still not sure GERD or LPR are the cause.
Have there been any further developments here?

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Check my post on page 311 and see if it resonates in any way. I've definitely experienced feelings of lump in throat to do with my condition.

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@marcuscurypko

Hi everyone,
I was amazed to read this thread, as it exactly describes the issue I've been experiencing for the past 9 months. A constant need to sigh or yawn to get a satisfactory breath, that came on suddenly after a 145 km cycling event. I've done all the testing....lung function, cardio pulmonary exercise test, CT scans, blood tests......and have been cleared by two lung and sleep doctors. It does not affect by ability to perform athletically, but it does impact my desire to exercise. I have also suffered from GERD in past and took PPIs for a long period. The onset of chronic sighing and yawning loosely coincided with reducing my PPI dosage to 20 mg and then 10 mg after having no issues for years. I am starting to wonder whether the GERD is coming impact plus LPR as I have a feeling of a lump in my throat, constant throat irritation, and constant need to clear my throat. But I'm still not sure GERD or LPR are the cause.
Have there been any further developments here?

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Hi @marcuscurypko, your situation definitely sounds similar to mine. I've been using PPIs for years to keep my GERD at bay. I've always wondered if GERD affects breathing such it could cause or at least be a factor in the air hunger feeling. The only thing I've come across from research is that there can be a "silent reflux" where you don't notice symptoms, but some of the stomach acid can get aspirated into the lungs causing breathing issues. But with treatment with PPIs, I'm not sure how that would play into it. But I do notice that many who first post here on this thread also have GERD. Though that's not saying that it could be a cause, I have a suspicion that it could play some factor in breathing issues.

Were you also tested for sports-induced asthma since you seem to be pretty active? Have you had a history of asthma or breathing issues during exercise?

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Hi @gabrielm
Thanks for your reply. At this point I'm convinced I should pursue the GERD and LPR (laryngopharyngeal reflux, AKA silent reflux) theory with gastro and ENT doctors, as the PPI relationship is definitely a theme. The fact I was weaning off PPI at around the same time as the SOB onset may not be a coincidence. I can't blame the GP here for not chasing that thread because I can't recall if I told him that.
I was checked for asthma, twice, and confirm nothing found. The fact I can perform athletically also suggests asthma isn't a factor.
As you mention, I am and always have been very physically active. I've run many marathons and participated in endurance cycling events over a large number of years. The other thing that was going on at onset of SOB was a relative decline in fitness as I had sustained an injury in August 2022 that confined me mainly to cycling rather than running. So the composition of my daily training changed to one where I was upright running, to hunched over cycling. That was also usually directly after eating in the morning whereas with running I'd always wait an hour or more after eating. In any case, I wonder whether GERD / LPR may be exacerbated by those circumstances.

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@marcuscurypko

Hi @gabrielm
Thanks for your reply. At this point I'm convinced I should pursue the GERD and LPR (laryngopharyngeal reflux, AKA silent reflux) theory with gastro and ENT doctors, as the PPI relationship is definitely a theme. The fact I was weaning off PPI at around the same time as the SOB onset may not be a coincidence. I can't blame the GP here for not chasing that thread because I can't recall if I told him that.
I was checked for asthma, twice, and confirm nothing found. The fact I can perform athletically also suggests asthma isn't a factor.
As you mention, I am and always have been very physically active. I've run many marathons and participated in endurance cycling events over a large number of years. The other thing that was going on at onset of SOB was a relative decline in fitness as I had sustained an injury in August 2022 that confined me mainly to cycling rather than running. So the composition of my daily training changed to one where I was upright running, to hunched over cycling. That was also usually directly after eating in the morning whereas with running I'd always wait an hour or more after eating. In any case, I wonder whether GERD / LPR may be exacerbated by those circumstances.

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That's all very interesting. When the air hunger first started for me back in 2012, I think there was the possibility of a fitness decline and then the start of GERD that may have spurred on the initial symptoms. After having done the Buteyko breathing method for a few weeks, the symptoms went away almost entirely, kept at bay with just physical exercise for about a year. Then the exercise decreased to almost nothing with an immediate return of symptoms. So I do think the physical fitness aspect somehow played a role in my symptoms similar to how there might be a connection with yours. The last time symptoms reoccured though, it was during a relatively intense running session that, looking back, I think I overdid the exercise given my breathing history and that somehow trigged the return of symptoms. But thankfully, I've been able to keep the air hunger at by doing moderate exercise regularly, especially walking, and an overall change in diet/lifestyle has really helped.

I haven't been able to get off of PPIs yet, because every time I try the reflux rebounds with a vengeance. Whether or not I'm on PPIs doesn't affect symptoms, but I still want to eventually ween off of them.

Do you notice any other symptoms or issues besides the breathing or GERD? Do you have sleep issues that you're aware of- sleep apnea, snoring, etc?

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Our cases are indeed very similar.
It's funny you mention sleep issues. What I know for sure is that at time of onset I hadn't had more than about 4-5 hours sleep per night in over 12 months, and that remained the case until quite recently after being prescribed melatonin. There were a couple of reasons; 1) I had a heart arrhythmia and required blood thinners and anti arrhythmia drugs before and after a catheter ablation procedure and they interfered with my sleep (the procedure fixed the arrhythmia and my heart tests have all been clear) and 2) I had an enormously stressful period at work from late 2022 until June 2023. I also note that I have become a mouth breather, which I suspect has changed with the SOB issues. I snore, but not always. Interested in whether you think there could be a link here?

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@marcuscurypko

Our cases are indeed very similar.
It's funny you mention sleep issues. What I know for sure is that at time of onset I hadn't had more than about 4-5 hours sleep per night in over 12 months, and that remained the case until quite recently after being prescribed melatonin. There were a couple of reasons; 1) I had a heart arrhythmia and required blood thinners and anti arrhythmia drugs before and after a catheter ablation procedure and they interfered with my sleep (the procedure fixed the arrhythmia and my heart tests have all been clear) and 2) I had an enormously stressful period at work from late 2022 until June 2023. I also note that I have become a mouth breather, which I suspect has changed with the SOB issues. I snore, but not always. Interested in whether you think there could be a link here?

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I’m glad you got the heart issues figured out and dealt with. Heart issues can contribute to breathing issues. I wonder if the enormous stress affected this in some way. Many people find that stress can cause breathing issue and for it to “get out of control” in stressful situations. Think of like police officers who get in immediate danger - they don’t often exert themselves but they breathe like they sprinted due to the stress response.

Did you ever deal with the stress directly or do you feel it went away this summer?

I also know that snoring and heavy mouth breathing in general can also induce somewhat of a stress response or can cause sort of a low grade habitual chronic hyperventilation which is what I think happened with me til I dealt with the nighttime heavy breathing

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