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.

@longingforair

Hi Jasomwg1,
I'm glad that the pantoprazole has helped you! Would you happen to have links to the articles you mentioned that relate SOB to the gut? I would love to read them. Thanks!

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@longingforair

Hi Gabe,

Thanks for the update, happy you're managing your symptoms. As I told Tonya, you may want to consider Babesia infection as the cause of your air hunger. That's what causes mine. It also causes heart palpitations, bloating, and insomnia in me. 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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Interesting! I had not heard of this before, and thank you for sharing! I will have to look into this more.

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@longingforair

Hi Gabe,

Thanks for the update, happy you're managing your symptoms. As I told Tonya, you may want to consider Babesia infection as the cause of your air hunger. That's what causes mine. It also causes heart palpitations, bloating, and insomnia in me. 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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Could you tell us more about your experience? How did doctors diagnose babesia? Did you have any other indicators, like low red blood cell count? Are you being treated for babesia or Lyme? Have the treatments reduced or eliminated your air hunger (and/or excessive yawning, if you have that, too)?

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Thank you so much for your detailed post I have been experiencing mostly everything you mentioned but for a shorter time. Yes, taking B12 did help and then no more. Breathing exercises and physical activities. They all help and they don't. Sometimes I almost feel desperation. Watching Kdramas helps me sometimes, but I have to go to work. Distraction technique seems to work, but again ..not all the time. Reading the posts here gave me some hope that I should not stress beyond a certain level. I did go for test. Have mild sleep apneea and GERD is an old thing but it did not seem to bother me. Sinuses issues, yes. It seems to me that many of us here we have some issues in common, but we cannot say they triggered or cause SOB. I wish you that your symptoms will diminish. In the meantime, let's try the best we can with the breathing we have for now Fighting! ( encouragement learned from Kdramas) 😀

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@nicolaura

Thank you so much for your detailed post I have been experiencing mostly everything you mentioned but for a shorter time. Yes, taking B12 did help and then no more. Breathing exercises and physical activities. They all help and they don't. Sometimes I almost feel desperation. Watching Kdramas helps me sometimes, but I have to go to work. Distraction technique seems to work, but again ..not all the time. Reading the posts here gave me some hope that I should not stress beyond a certain level. I did go for test. Have mild sleep apneea and GERD is an old thing but it did not seem to bother me. Sinuses issues, yes. It seems to me that many of us here we have some issues in common, but we cannot say they triggered or cause SOB. I wish you that your symptoms will diminish. In the meantime, let's try the best we can with the breathing we have for now Fighting! ( encouragement learned from Kdramas) 😀

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@nicolaura, sorry you’re experiencing this. How long have you been dealing with it?

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I was SOB on minimal exertion for 91/2 yrs; finally an X-ray of my spine showed herniated disc pressing on my spine. After ACDF surgery, the SOB finally cleared up and I can do steps again and more. I developed the aforementioned ‘can’t get a good breath’ just about six months before the surgery and hoped it would clear it up as well. It comes and goes and I’m wondering if I don’t have another problem perhaps above the other disc that was replaced. I used to work out at the gym and lift weights but stopped it when became SOB, and won’t do that again. Just throwing this out for an idea for anyone reading this to have an X-ray of their spine. Like you, I was cleared of all other health problems.

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@grandma72

I was SOB on minimal exertion for 91/2 yrs; finally an X-ray of my spine showed herniated disc pressing on my spine. After ACDF surgery, the SOB finally cleared up and I can do steps again and more. I developed the aforementioned ‘can’t get a good breath’ just about six months before the surgery and hoped it would clear it up as well. It comes and goes and I’m wondering if I don’t have another problem perhaps above the other disc that was replaced. I used to work out at the gym and lift weights but stopped it when became SOB, and won’t do that again. Just throwing this out for an idea for anyone reading this to have an X-ray of their spine. Like you, I was cleared of all other health problems.

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Hi @grandma72, wow almost 10 years is quite a while of dealing with this! Was your SOB caused by not being able to take a good breath because of the pain? Do you experience symptoms related to your back?

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@gabrielm

Hi @grandma72, wow almost 10 years is quite a while of dealing with this! Was your SOB caused by not being able to take a good breath because of the pain? Do you experience symptoms related to your back?

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I was short of breath upon minimal exertion for 91/2 years. No real bad pain. Just a stinging pinching in the left chest area and tingling down arm which was suggested to be angina. No back problems . Went to Cleveland clinic johnshopkins and Hershey medical … all said not my heart or lungs and we looked at a dozen other possible cause or more to no avail. My husband thought of my spine finally and they did an X-ray and it showed a herniated discs at C 5/6. I had an ACDF dec 2 and finally can breathe again. The other problem of short of breath is different but I began to experience that kind only maybe a year ago. I still have it somewhat but not sure as I’m still healing from surgery. Perhaps it will settle down and go away and maybe it’s a different problem. That’s why I’ve been searching for answers for this hyperventilating kind of SOB.

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I hear you and wish you well! Curious if you've had a cervical spine MRI and a Fluoroscopic Sniff test to see if you diaphragm or phrenic nerve are dysfunctional?

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Hi everybody
Sorry, Im from iran ,it means i cant write english well ,
My sob start 2month ago, i have small hiatal hernia and use medicine for my reflux acide before sob comes , like you im looking for cause , there are many people in iranian forum that have sob too, some of them cure whit gerd midicine, some of them cure whit anxiety buth many of them like me until didnt find reason, i read the whole of 185 pages here.
Furthermore my sob start with panic attack, indeed idont know wich one start first , here i read about gerd,anxiety,vcd,allergies and ect
But i think this is about gerd and anxiety togheder, i want too loose wieght and use anxiety medicine , pray for me, im 27 years and too worry about my sob

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