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.

@catsmeow1959

I also am suffering from this SOB. Seems I just can’t get a satisfying deep breath. I first started having these about 30 years ago and was put on Zoloft for depression. Lo and behold, not only did the Zoloft help my depression, it eliminated this awful need to get a deep breath. It worked for about 30 years and then the Zoloft just quit working and the SOB suddenly returned. I’m back on Zoloft after being off of it for a few years but it hasn’t had time to build up in my system. I’m hoping the Zoloft will help again.

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Hi @catsmeow1959, glad it helped you for so long! Let me know if it helps again. Have you done other things to help with your depression or breathing such as breathing exercises, lifestyle changes, CBT, etc?

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@jasong

Wow I came across this post today after years of searching for answers. I started to have this same issue in about 2017. I thought maybe I had developed a food allergy so I got tested but nothing. I have seen a pulmonologist, ENT and my primary care doctor. No one seems to be able to tell me there is a noticeable physiological problem. I do think stress and anxiety somehow makes it worse.

Going to try the Buteyko method and see if that helps. Happy to answer any questions.

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Hi @jasong, glad you found this place after searching. Sounds like you've gotten a lot of tests done over the past few years that haven't really turned up much.

Are you currently doing anything for your stress or anxiety?

The Buteyko method has definitely helped me the most. What do you do for physical exericse?

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@gabrielm

Hi @catsmeow1959, glad it helped you for so long! Let me know if it helps again. Have you done other things to help with your depression or breathing such as breathing exercises, lifestyle changes, CBT, etc?

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I’ve tried the buteyko breathing exercise but it didn’t help. Also other medications but nothing else worked.

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@catsmeow1959

I’ve tried the buteyko breathing exercise but it didn’t help. Also other medications but nothing else worked.

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I certainly hope the Zoloft will help. For me, I had to stick with Buteyko long-term (doing exercises daily for a month) among other changes and that seems to have helped me a great deal. Sorry that it's not helping you. Do you do physical exercise regularly?

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Holy crap. I have been going through this all of my life and this is the first time I’ve ever heard anyone describe it. The yawning, the sighing, the effort to get that deeeep breath that won’t come….omg. Like you, my PFT was perfect. I know I have reflux, but I haven’t always had it and this has literally been going on ALL OF MY LIFE.

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Ok so now I’m down a rabbit hole based on the info in these comments. Has anyone looked into diaphragm disorders? They worsen over time.

The breathing method that was mentioned seems to me like it would apply and maintain pressure on the diaphragm. It is possible that this pressure temporarily alleviates the issue.

I’m reading about diaphragm paralysis right now.

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@gabrielm

I certainly hope the Zoloft will help. For me, I had to stick with Buteyko long-term (doing exercises daily for a month) among other changes and that seems to have helped me a great deal. Sorry that it's not helping you. Do you do physical exercise regularly?

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Yes. I do some strength training as well as light cardio daily.

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I have some questions regarding some additional symptoms that I have that may or may not be related.

1. Do you notice that your symptom severity increases with, or can be set off by, hunger?

2. Do you experience a gradual buildup of severity or are you just suddenly hit with it?

3. What are the most common triggers for you?

4. Have you tracked your food intake and sleep quality for the periods prior to symptoms?

5. Do you have sleep apnea?

6. (This one is bizarre) Do you feel pain under your tongue when running?

7. Do you ever experience shakiness or weakness during an episode?

8. Have you had bloodwork that indicated inflammation in your body?

9. Does cold air and/or ice cold water alleviate symptoms?

10. Do you notice post nasal drip accompanying the occurrences?

11. How old were you when you began taking a deeper breath for every few “normal” breaths?

12. Do you cough anything up or clear your throat during episodes?

For me, cold air and/or cold water helps. I have varying degrees of severity and my symptoms ramp up slowly.

The “one big breath every few breaths” has been happening since I was a kid. The older I’ve gotten the more frequently it has progressed from just that (which is ever-present) to severity of a level that prevents me from getting out of a chair. The more severe level includes shakiness/weakness and lightheadedness.

My O2 is always normal during these severe episodes, as is my blood sugar.

My blood work has indicated some inflammation.

I’m really looking forward to hearing what everyone’s experiences are regarding these questions!

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@dampiera

Holy crap. I have been going through this all of my life and this is the first time I’ve ever heard anyone describe it. The yawning, the sighing, the effort to get that deeeep breath that won’t come….omg. Like you, my PFT was perfect. I know I have reflux, but I haven’t always had it and this has literally been going on ALL OF MY LIFE.

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So sorry to hear it's been going on for so long. Has it been consistent symptoms or sensations throughout, or does it come with varying degrees of severity?
I haven't seen whole lot on diaphragm issues, but like you mentioned in your second comment I think some people have described the possibility of diaphragm paralysis but haven't seen much info from people on if they found out if they had that or if any treatments worked. But it sounds like something worth being looked at for just to at least rule it out.

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@yessir321

IF DOCTORS CANT FIND ANYTHING AND SAY IT COULD BE ANXIETY. THEN IT IS ANXIETY. LIVE FULLY WITH THE SYMPTOM AND YOU SHOW YOUR BODY IT IS NO THREAT. ALL YOU WITH LIME DISEASE OR REAL ISSUES OF COURSE FIX THOSE ISSUES. THOSE OF YOU WITH NO DIAGNOSIS AFTER MONTHS AND TALKING ABOUT BUTEYKO. BUTEYKO IS A BREATHING EXERCISE TO TRY CALM YOUR BODY. BUT YOU NEED TO STOP SEEING THE SYMPTOM AS SOMETHING TO GET RID OF. CAUSE YOUR TELLING YOUR BODY IT IS CORRECT TO SET OFF THIS ALARM. THIS CAN GET REALLY BAD AND CAN KEEP YOU HOUSE BOUND IF YOU BELIEVE ITS REAL DANGER. GET OUT AND LIVE GUYS PLEASE. AND GABRIEL I APPRECIATE YOU TRYING TO HELP PEOPLE WITH IDEAD OF REAL ISSUES BUT PLEASE START LIVING YOUR LIFE YOU SEEM OBSESSED. AND ABOUT BUTEYKO THE ONLY BENEFIT IMO IS THAT IT SHOWS YOU THAT ALTHOUGH YOU ARE FEELING SOB THAT WHEN YOU BREATHE LESS AND STILL BE FINE. BUT THATS IT, STOP DOING IT AS SOMETHING THAT YOU USE TO RID YOURSELF OF IT. WHEN YOUR SOB HAS DISAPPEARED THATS WHEN YOU STOPPED TRYING TO GET RID OF IT AND YOU WERE JUST FOCUSED ON LIFE. AND WHEN YOU OBSESSED OVER SOB AGAIN IT RETURNED BECAUSE YOUR BODY WILL SHOW YOU ANY SENSATION YOU LABEL DANGEROUS. IVE RECOMMENDED BOOKS IN A PREVIOUS POST PLEASE BELIEVE ITS ANXIETY IF DOCTORS SAY IT PROBABLY IS.

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Yeah sure because doctors know everything.

They do couple of tests and if they don’t find anything, they tell you it’s anxiety. NO ITS NOT!

It can still be a physiological problem. Just because the tests didn’t find anything doesn’t mean it’s not there.

I also struggled with SOB, did a lot of tests and they didn’t find anything, and they also told me it was anxiety. And guess what - it was not!

I stopped eating gluten and dairy and it went away. Later I found out it was because my esophagus was swelling from allergy.

So don’t give crappy advice if you don’t know anything about it!

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