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 @sat1677, I'm glad you found others who are also experiencing this. I'm definitely sorry that you're going through it though. I know it feels like it's ruining things, but if I can offer hope, I believe there are many ways to cope with it and reduce the symptoms enough that you can live a pretty normal life. Have you done as many tests as you can at this point? Anything that any doctors are saying that it could be?

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thank you for your comment. i have gone through four lung doctors assuming it’s asthma or vocal cord dysfunction but it doesn’t appear to be that. and no treatments that they try for it ever work. i just had allergy testing done and it’s not that.. next is the gastro although i don’t think it has anything to do with that either. i just started wellbutrin yesterday even though i know it’s not anxiety related either, but i’m desperate to try anything.

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@sarah66

si me molesta a cada rato no me puedo concentrar en nada, sabes me dijeron que estos suspiros son por reflujo pero yo me mediqué para reflujo y no se me quitaron, tambien dicen que es por el exceso de gas hace que los nervios del esofago manden señales al cerebro haciendole creer que los pulmones no estan llenos,
conozco gente que tuvo exactamente lo mismo y se recuperó, alguna vez pensaste en probar la homeopatia? yo esta misma semana iré con un doctor....estos suspiros no son normales parece que nuestro patron respiratorio ha cambiado de un momento para otro...como una descoordinacion respiratoria,
fuí con un neurologo tambien y me dijo que esto pasa porque simplemente el estomago esta empujando el diafragma hacia arriba, pero no se que hacer para arreglar esto...los que tienen el mismo problema que nosotros no se recuperan pasan así años y años y no saben lo que tienen , sea lo que sea esto no entiendo porque dura tanto tiempo y a cada rato del dia...
también escuhé la teoria del psoas empujando el diafragma.
sinceramente pienso que el diafragma tiene mucho que ver en este problema que tenemos, el diafragma y los gases molestando al nervio vago

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I don't know whether this helps but your condition sounds like it has similarities to my own. Since doctors have dismissed my own symptoms I had to look for answers and eventually found them in my test results, once I had a number of years worth to examine. I made up a spreadsheet of the most aberrant high and low results and then took a look at what those results meant. In my own case they indicated that something had exacerbated my kidneys nephrotic syndrome increasing loss of albumin. While this can cause breathing issues on its own it had the result of triggering gall stone production and gall bladder inflammation, with test results showing repeated bouts of liver injury resulting from these. I needed my gall bladder to be removed a few years ago after it induced jaundice. It seems as though liver injury can trigger respiratory issues such as pulmonary hypertension. My own pattern of test results seems to fit with non-alcoholic fatty liver disease having resulted from repeated gall stones.

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@sat1677

thank you for your comment. i have gone through four lung doctors assuming it’s asthma or vocal cord dysfunction but it doesn’t appear to be that. and no treatments that they try for it ever work. i just had allergy testing done and it’s not that.. next is the gastro although i don’t think it has anything to do with that either. i just started wellbutrin yesterday even though i know it’s not anxiety related either, but i’m desperate to try anything.

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Have you looked into breathing exercises? This is what has helped me the most.

Are you able to exercise?

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@gabrielm

Have you looked into breathing exercises? This is what has helped me the most.

Are you able to exercise?

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i’ve been trying various breathing techniques yes, and i think when i am having attacks it helps to get the big refresh breath a little easier… but it doesn’t stop the attacks from starting nor stop them when they are happening from continuing. i do work out i do the treadmill.. and when i am having a bad day i question of i should be doing it or not. sometimes i think it makes a bad day become worse and sometimes i think it doesn’t make it worse. but it doesn’t make it better either..

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I have the same thing. Online I came across Sighing Dyspnea. Read about it and let me know what you think. I am going to pulmonologist today to talk to them specifically about this.

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@sat1677

i’ve been trying various breathing techniques yes, and i think when i am having attacks it helps to get the big refresh breath a little easier… but it doesn’t stop the attacks from starting nor stop them when they are happening from continuing. i do work out i do the treadmill.. and when i am having a bad day i question of i should be doing it or not. sometimes i think it makes a bad day become worse and sometimes i think it doesn’t make it worse. but it doesn’t make it better either..

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One thing to consider that helped me is to exercise as much as your breathing allows, and not pushing too hard. I used to go on fairly long jogs before the breathing issue arose, and still pushed through it after it first came about, but I think it made it worse for me. So now I go on walks with a little jogging as my breathing will allow. If you're having a bad day, you might replace exercise with breathing exercises.

I follow the Buteyko Breathing method, which has helped me tremendously. It's not a bandaid so much at it is a holistic approach to better breathing habits. I only breathe through my nose throughout the day and while exercising. If you need to breathe through your mouth when exercising you're probably pushing too hard.

The Buteyko breathing exercises also doesn't stop the attacks or stop them directly, but after the first few days of me doing the exercises 2-3 times a day, gradually the severity of the air hunger lessened until it pretty much went away. I still do breathing exercises (breath holding while walking ~60 to 80 steps and resting 3 min between each set) daily which keep the air hunger at bay.

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@mabrams50

I have the same thing. Online I came across Sighing Dyspnea. Read about it and let me know what you think. I am going to pulmonologist today to talk to them specifically about this.

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Let me know what the pulmonologist says! I am aware of sighing dyspnea, thank you for sharing. I believe it is a form of chronic hyperventilation or bad breathing habits (such as breathing through the mouth all the time) which breathing exercises have helped me improve.

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Hello friend. Have you tried take papaya enzymes? I have been fighting with this same issue with the breathing problems. It gets pretty bad sometimes feels like I’m going to die. I take Xanax when it gets really bad to calm me down. But I noticed taking papaya enzymes for inflammation has been helping. I know GERD causes acid gas like fumes to get into the lungs and then it causes shortness of breath. The papaya hasn’t taken it away completely but it does work. I used to take the chewable ones but they taste awful to me. So I went on Amazon and got the capsule form and they’re much better. They might work better if I took them daily. It might be acid reflux causing your issues too. Or GERD. I know it’s frustrating trying to figure this all out. I’ve been suffering for years. But out of everything I’ve tried the papaya enzymes seem to work best for me. Sometimes eating too much sugar will cause inflammation and then the breathing problems start or sometimes milk does it. Or sometimes nothing causes it. It’s so weird. Some foods cause it to act up. I hope this helps.

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@sat1677

thank you for your comment. i have gone through four lung doctors assuming it’s asthma or vocal cord dysfunction but it doesn’t appear to be that. and no treatments that they try for it ever work. i just had allergy testing done and it’s not that.. next is the gastro although i don’t think it has anything to do with that either. i just started wellbutrin yesterday even though i know it’s not anxiety related either, but i’m desperate to try anything.

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Sometimes anxiety comes on from feeling like you can’t breathe. 🥺😔😢

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I just saw this and am experiencing the same exact thing as you. And same with you, I don’t think I suffer from anxiety, GERD or anything else that I can tell. Frankly, I thought I might be having heart issues so I got a complete work up and all came out fine. I was thinking maybe Long Haul Covid since my symptoms seemed to start when I had covid for the second time. But I work out, eat healthy, etc. and it does not really bother me when I work out or even sleep. It actually feels worse when I am sedentary. Very frustrating. Hopefully it does not get worse.

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