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.

@tahiristan

Hmm interesting. I seem to have the opposite experience with exercising. Could it be a Hiatal Hernia? Have you looked into that?

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I’ve read that could be a possibility. I think it if doesn’t resolve in the next few weeks I will go see my PCP and maybe they could do a scope.

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@haleynicole1223

It’s the strangest thing! It has been happening daily yes and it really doesn’t have a point in the day where it’s worst, it’s pretty consistent but I can get a “satisfying” breath after a couple breaths it just takes me thinking about it. I’ve cut out all caffeine and acidic foods for now but haven’t noticed too much of a difference. Although I am about to get a deeper breath alittle faster. It may be stress induced from switching the night shift but everything else has remained the same, no new stress really. I hate to get on anxiety medication when in reality I was perfectly fine until 3 weeks ago and I know any doctor I go to with give me some sort of med and not consider the underlying cause. I am a nurse so I am used to seeing that all too often!

I plans on watching the exercises you posted but haven’t just yet

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@haleynicole1223 , it’s definitely worth a try to do the breathing exercises daily. As part of the method, I learned to breathe only through my nose most of the time and exercise while nose breathing. This helped me improve quite a bit in the beginning.

What sorts of tests have you had done so far, if any?

I too have been taking PPIs for a long time and even though it helps with the heartburn, it didn’t improve the breathing issue. But I have this inkling in the back of my head that GERD could still contribute because PPIs just deal with the heartburn symptom
and not the underlying problem. So I’m exploring dietary options and trying to improve gut health.

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@gabrielm

@haleynicole1223 , it’s definitely worth a try to do the breathing exercises daily. As part of the method, I learned to breathe only through my nose most of the time and exercise while nose breathing. This helped me improve quite a bit in the beginning.

What sorts of tests have you had done so far, if any?

I too have been taking PPIs for a long time and even though it helps with the heartburn, it didn’t improve the breathing issue. But I have this inkling in the back of my head that GERD could still contribute because PPIs just deal with the heartburn symptom
and not the underlying problem. So I’m exploring dietary options and trying to improve gut health.

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Hello All- At the beginning of my lung cancer, COPD, and emphysema journey I had no idea that there were so many ways to breathe! I always thought that one inhaled and then exhaled. Of course, I knew about asthma but I never gave it much thought. Well, was I missing out! There seem to be as many ways to breathe as there are imaginations! Have you heard of lion's breath? Humming bird breath? Sitali breath? Yup, these are real and used to help with breathing.

There are also breathing techniques that help relieve or manage difficult breathing caused by some sort of medical insult: Heart disease, lung illnesses, anxiety disorders, asthma. pulmonary embolism, etc. Sometimes it's very difficult to find a solution to being short of breath. Aside from the difficulty of diagnosing SOB there is also the trick of finding a correct breathing exercise, along with medications, treatments, and sometimes surgery.

My way of doing things is to go to the best source for information. I have been fortunate to have had two excellent Pulmonologists. My first pulmonologist sent me to the cardiac and pulmonary rehab center in our local hospital to learn Pursed Lip breathing. The program also included whole-body exercises, weights, and nutrition. It helped me to move in ways I hadn't been able to, I even ran for a while.

Be patient, as this might take several attempts to find the right fit for you.
https://www.healthline.com/health/breathing-exercise#deep-breathing
https://www.webmd.com/lung/shortness-breath-dyspnea#2
But, each person is different and one exercise program is not for all. There are millions of youtube videos about breathing. But before you teach your chest muscles new exercises make sure you are doing the correct ones. Go to your doctor. Start with him and ask for programs that can guide you to the right and helpful place. Does this sound like a good way to go?

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@gabrielm

Thanks for the reply! I have explored the possibility of anxiety and stress, but I don't experience any of that, at least beyond the norm. I might have a stressed out day now and then, but I'm not a stressful person and am pretty easy-going. I don't have anxiety. The SOB is just always there. Always. Whether I'm at work, at home, stressed, not stressed, but stress for me is very uncommon. I have a low-stress job. So I'm not convinced it's that. So I still have no idea what it is; I'm looking into submitting my case to CrowdMed.

I'm doing alright, thank you for asking. I would say that over the past 6 months I have experienced periods of improvement from days to even weeks. Not 100%, but enough to where I didn't really notice it all day. Then I would have random bouts where it would get kind of bad, where I just can't get a deep breath, and when I do it doesn't last long before I'm desperately needing another. That would go on for a few days, and then it would get better again. So it's still up and down, and it's manageable but not normal at all. I still do exercise when I can, to an intensity that my breathing will allow- some weightlifting sessions allow me to lift a decent amount of weight with not as much rest in between, and other times I have to cut my sessions short after lifting light weights and having to rest for 5 minutes in between sets. So it all depends on the day I guess.

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Hi I came across this thread as I have been experiencing the exact symptoms since July 2021. It improved a bit for a few months but since I had a cold it has come back.

I wanted to ask if anyone has had there Vagus Nerve tested? I have been doing a lot of reading into it and wonder if there is any connection. Given when I sleep and not long after I wake the symptoms have subsided I wonder if the vagus nerve is involved? Reading about Vagal tone I am going to practise increasing this and do a little study on myself.

Love to hear anyone’s experience or thoughts. Hope this thread is still active

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Hi,
Finally someone that has this SOB issue. I have a new Dr. now but I haven't mentioned this health issue.
I've had this all my life but it would only happen once in awhile in the summer, heat related I guess.
Never told my parents.
Anyway, now I'm 71 and since last year, it's been happening daily.
I will tell my dr.
In the meantime, are there any more answers out there?

Julia

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Hi gabe, know it’s been a couple years since you have posted on this thread. However I stumbled upon your post and feel like I have started to struggle with the same symptoms. It feels like every minute I have to take a deep breathe and even then it doesn’t feel like it’s satisfied me. I rang my doctor and she said I may be breathing incorrectly. However it’s been a few days and this still affects me. Wondering if you’ve had any more luck

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Also want to add that I agree with the distraction bit. When focussed on something I can avoid it for a while. Also burping and yawning seem to help short term as well

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@jeddles

Also want to add that I agree with the distraction bit. When focussed on something I can avoid it for a while. Also burping and yawning seem to help short term as well

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@jeddles
Hi,
Both your comments are my symptoms exactly.
I was diagnosed by one dr. with Sigh Dyspnea but never helped me with it.
I will be telling my new dr.

Julia

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@jeddles

Correction - Sigh Dyspnea

Julia

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@jeddles

Arrgrr - again wrong spelling although Google will correct.
- Sigh Dysphea

Julia

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