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.

Mine was discovered during a post COVID pulmonary exam by pulmonologists. I think they discovered it on CXR or perhaps CT scan.

REPLY

Hi
I am experiencing exactly the same problem. The same thing applies to my niece and to my daughter. If I think of it, I start getting the urge. I have the need every day but normally only a few times per day. It gets bad when I run; then I need to stop or slow down, breath deep and if I "succeed" I can increase pace again until a few minutes later I need to do it again. I have had it my whole life. I am 47 today. Only my niece had it investigated thoroughly at a doctor. She suffers from sinusarytmi.

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@finansgeniet

Hi
I am experiencing exactly the same problem. The same thing applies to my niece and to my daughter. If I think of it, I start getting the urge. I have the need every day but normally only a few times per day. It gets bad when I run; then I need to stop or slow down, breath deep and if I "succeed" I can increase pace again until a few minutes later I need to do it again. I have had it my whole life. I am 47 today. Only my niece had it investigated thoroughly at a doctor. She suffers from sinusarytmi.

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Hi @finansgeniet, Wow I'm sorry you've been dealing with this as long as you can remember. Do you remember a specific age when this started for you? How bad is the issue when it comes about? It seems you've at least been managing it some throughout the years.

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@shivak

Thank you for the detailed post. I also face the same shortness of breath issue for the past 6 months. A few times I woke up at night due to breathlessness (sleep apnea). I suffer from allergy issues for the past 20+ years. CBC, Chest x-ray, ECG, echo and chest CT are normal. I also have hand pain(pins and needles and numbness) whenever I work on my laptop that is charging. I suspect nerve issue.
Don't know if it is related to the shortness of breath issue.

Don't know what else to do to diagnose the reason.

Also thinking of trying some alternative medicines in ayurvedha.

Wanted to connect with you to share.

Thans again for sharing your experience.

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Thanks for connecting with me @shivak. I think allergies and sleep apnea definitely can make you feel short of breath. Do you also experience shortness of breath with exertion, for example when climbing stars, walking mildly, etc? And are you being treated for the allergies and sleep apnea?

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@holliehobbie

I experience the same! I have off and on since 2008.
When I have it, it is worsened by excessive gas or inflammation in the bowels, meaning there is pressure on my diaphragm, but it comes on before that, so I don’t think it is the cause.
I have a couple theories going on, but I’m not entirely convinced on any. One is unilateral diaphragm paralysis, I recently received x-ray results of a C4 anterolisthesis, however it was mild. Potentially it is irritating the phrenic nerve? A unilateral diaphragm paralysis can be asymptomatic, but I wonder if this is a symptom? Sometimes it is found on x-ray, sometimes hypoventilation can occur at night and it’s found on a sleep study.

Another is a maladaptive breathing pattern that started following a L shoulder car impact and wrestling injury 2 weeks apart in 2008. I don’t know the specific injury, but I know that I had sharp pain in my chest and back on the left side at the point of deep inspiration. I managed the discomfort from that injury with mainly stretching my pectorals on the left side which even now, along with my trap and other shoulder muscles seem to constantly tighten.

I did and still do have a stressful job, but 2 years ago went through a particularly traumatic time. This “breathing discomfort” (I call it, but air hunger suits it too) has come back pretty badly in the last month along with an iron deficiency (not sure how long this has been going on). I now feel I have very little reserves to manage the breathing discomfort and all the other stressors I now have in life. I found myself balling in my physiotherapist’s office yesterday.

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Hi @holliehobbie, thanks for sharing your experience and test results. I've somewhat looked into the phrenic nerve possibility some time back. I think I found an exercise to stimulate the nerve if that was the issue, so something that might be worth checking out. I just searched "phrenic nerve" on Youtube and found an exercise. I didn't help me, so I figured it wasn't that, but doesn't hurt to try.

I think the maladaptive breathing pattern is something similar to something I ran across also a while back, just a different name- abnormal respiratory breathing or something like that.

I wonder if your accident caused some sort of damage that just never corrected itself. Have you thought about reinstating those exercises you were doing?

I too had an iron deficiency when this first started for me in 2012. Strangely taking iron supplements made the issue disappear completely (or so I think) but only for a couple of weeks or so. I assume you're on iron supplements? Has that had any effect at all?

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@phinbar21

I’ve taken a week off here and there to see if things changed, but it didn’t seem to have an effect. This all started pretty abruptly - it came out of nowhere a year ago and just hasn’t gone away at all.

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Have you found any way to manage it at all? After doctor tests kept coming back normal, I became convinced that it wasn't caused by anything serious that something about my breathing was just off, but I didn't know how or why. So that's when I started focusing on managing it, while at the same time trying to find answers.

If you get a chance, look up "Buteyko Breathing Method", which is the method that has greatly reduced my symptoms (and even made the whole issue go away for a couple of years), and I still manage the issue by doing breathing exercises occasionally.

The first few days back in 2012 when I first discovered this breathing method, I only breathed through my nose and resisted the urge to take a deep breath as much as possible, which was difficult no doubt, but after about 3 days, the air hunger pretty much disappeared. So there may be something off that breath control helps to get back in sync.

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@gabrielm

Hi @holliehobbie, thanks for sharing your experience and test results. I've somewhat looked into the phrenic nerve possibility some time back. I think I found an exercise to stimulate the nerve if that was the issue, so something that might be worth checking out. I just searched "phrenic nerve" on Youtube and found an exercise. I didn't help me, so I figured it wasn't that, but doesn't hurt to try.

I think the maladaptive breathing pattern is something similar to something I ran across also a while back, just a different name- abnormal respiratory breathing or something like that.

I wonder if your accident caused some sort of damage that just never corrected itself. Have you thought about reinstating those exercises you were doing?

I too had an iron deficiency when this first started for me in 2012. Strangely taking iron supplements made the issue disappear completely (or so I think) but only for a couple of weeks or so. I assume you're on iron supplements? Has that had any effect at all?

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I had some nerve testing of the other nerves that run past the C4 as I also experience migraines. Typically I get them after raising my arm over my head for a period of time or lifting a heavy weight over my head. The trap and scalenes take over when it should be the lats working. The take over muscles are meant to do that and get tight and inflamed and I end up with a migraine same problem next day.
I learned to manage that one by stretching my shoulder joint, particularly hanging from a chin-up bar. And, by not lifting things or my arm over my head. Not ideal but could be much worse.
I’m wondering if the damage caused the C4 anterolisthesis, I don’t know if there’s a way to confirm. The nerve testing concluded that those nerves were functioning, but then the doc/tech said to me that there was a lot of nerve damage, but that it had healed. I looked like I “had the nerves of a 60 year old”. This wasn’t included on the report.
I work on loosening that shoulder as often as I can, but it just keeps getting tight again, sometimes I’m not always so great at staying on top of it, not to mention that some muscles can be stubborn to release. 1 stretch or 1 massage or 1 physio session may not relieve it.

I didn’t have (or maybe didn’t notice) the air hunger until the last month or so, I wish I could identify exactly which stretch or exercise I need to do to relieve it but so far I haven’t pinned it down.
I wonder if either the C4 is just irritating those nerves but not compressing them, hence the results, poor functioning and tightness and/or if it’s the scoliosis thats affecting the muscles involved with breathing.

I am on iron supplements now, it’s only been about 2.5 weeks. I haven’t noticed it help my breathing. I’m curious about muscle function, breathing function and nerve function in relation to iron (and iron deficiency).

I’ll update if I get more info!

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@gabrielm

Thanks @colleenyoung. Glad you found us @zachsturgeon. I too found it difficult to explain to people this problem since it’s not a shortness of breath like you’re out of breath or even labored breathing, but more of an “air hunger” that is always present to some degree. And taking a deep breath may or may not satisfy it. Have you had various tests done; lung function, heart tests, blood work, etc? Mine had gotten better but use really just leveled off to a manageable level. I maintain moderate weight lifting exercise and breathing exercises to help at least maintain it. But I’m right with you, continuing to search for answers.

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That's so werid I been dealing with it and I have acid reflex I am on dexilant 4th day now but they said it shoukd help that also if it's related to my acid reflex all my testing has been normal and I have only hyperventilated twice sometimes I struggle with eating cause my breathing acts up

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@natasha1997

That's so werid I been dealing with it and I have acid reflex I am on dexilant 4th day now but they said it shoukd help that also if it's related to my acid reflex all my testing has been normal and I have only hyperventilated twice sometimes I struggle with eating cause my breathing acts up

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Hi @natasha1997, how long have you had the acid reflux? When you say your breathing acts up, how does this happen- do you go into hyperventilation?

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@holliehobbie

I had some nerve testing of the other nerves that run past the C4 as I also experience migraines. Typically I get them after raising my arm over my head for a period of time or lifting a heavy weight over my head. The trap and scalenes take over when it should be the lats working. The take over muscles are meant to do that and get tight and inflamed and I end up with a migraine same problem next day.
I learned to manage that one by stretching my shoulder joint, particularly hanging from a chin-up bar. And, by not lifting things or my arm over my head. Not ideal but could be much worse.
I’m wondering if the damage caused the C4 anterolisthesis, I don’t know if there’s a way to confirm. The nerve testing concluded that those nerves were functioning, but then the doc/tech said to me that there was a lot of nerve damage, but that it had healed. I looked like I “had the nerves of a 60 year old”. This wasn’t included on the report.
I work on loosening that shoulder as often as I can, but it just keeps getting tight again, sometimes I’m not always so great at staying on top of it, not to mention that some muscles can be stubborn to release. 1 stretch or 1 massage or 1 physio session may not relieve it.

I didn’t have (or maybe didn’t notice) the air hunger until the last month or so, I wish I could identify exactly which stretch or exercise I need to do to relieve it but so far I haven’t pinned it down.
I wonder if either the C4 is just irritating those nerves but not compressing them, hence the results, poor functioning and tightness and/or if it’s the scoliosis thats affecting the muscles involved with breathing.

I am on iron supplements now, it’s only been about 2.5 weeks. I haven’t noticed it help my breathing. I’m curious about muscle function, breathing function and nerve function in relation to iron (and iron deficiency).

I’ll update if I get more info!

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I wonder if the inflammation has to do with the breathing issue. I've often wondered for myself it inflammation is involved. Though I don't overtly experience symptoms of inflammation, except for some sinus inflammation, I sometimes wonder if there is inflammation involved with the respiratory system somewhere such that it affects the breathing.

Not knowing much about nerves, I wonder if your nerve issue is connected to the vagus nerve. This nerve deals with many functions, but respiratory function is part of it. Have you looked into vagus nerve stimulation exercises? You mentioned the phrenic nerve previously which deals with the diaphragm but I'm thinking these nerves are connected to each other as the nervous system. It would be worth at least trying some vagus nerve stimulation exercises. I've done them myself and they're pretty easy to do.

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