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.

@rhig6203

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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I think so … they tested my diaphragm …wasn’t a problem. I had so many tests in 91/2 years so not sure if the sniff test but definitely the MRI.

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@mostafamahjoori

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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GOING FROM FARSI TO ENGLISH IS DIFFICULT, CONGRATULATIONS. I WAS VERY HEAVY FOR A LONG WHILE BUT MY WIFE FROM SPAIN MAINTAINED FOR US A MEDITERRANEAN DIET AND MY WEIGHT CAME DOWN TO NORMAL. MY ARTERIES ARE CLEAR AND I ALSO HAVE SOB. EXERCISE SEEMS TO HELP BETTER THANB ANYTHING ELSE, AT LEAST FOR ME. GOOD LUCK AND GOD BLESS YOU.

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@grandma72

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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Definitely glad you found us. I know there are a ton of comments on this thread but going through a few pages will help you find what others are going through and some possible ways to manage symptoms including breathing exercises which I do. Have you looked into breathing exercises?

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@mostafamahjoori

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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Hi @mostafamahjoori, glad you found us here. Sorry you’ve been dealing with this. Would you say you have a shortness of breath upon exertion or would it be like an air hunger that comes on at various times? Does the medicine help your GERD symptoms?

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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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Sorry just saw your question… no the original SOB was upon minimal exertion. The other SOB was different like hyperventilating and not being able to get a breath. It only started less than a year ago. I’m hopeful this surgery will resolve it as well but feel I need to be patient and give all the nerve endings time to settle down and heal completely.

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@gabrielm

Hi @mostafamahjoori, glad you found us here. Sorry you’ve been dealing with this. Would you say you have a shortness of breath upon exertion or would it be like an air hunger that comes on at various times? Does the medicine help your GERD symptoms?

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My sob exaclly same of you because i read your comment . Im the nervuse and worried person ,Especially in 3yeara ago . But when sob come i was in good form , first i think this is panic attack but when its stay and dont go i understand this is not panic
I have lpr reflux and im using medicine for gerd before sob and its controlling,but in 6past month ago im eat any food alot
Let me say when i feeling my sob worst : i feel when wheather is more cold my yawning become more too
When im become nervuse my sob become worst too , as well im still bloating alot
Im not sure this is about tick
Oh i forget to say this, my sob disappeared for 4 or 5 days last month and everything is good but when i heard a bad news from a person , a few minute later im sure its back
Do you test anything more for your sob?
Im going to check my blood after this im start anxiety medicine

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@dovey

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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I was diagnosed with Babesia duncani in 2012 by an Igenex IgG test. This strain is not as well researched as Babesia microti. If you read some of the research, and anecdotal reports from treating physicians, you'll see that it is nearly as common and widespread as B.microti. B. duncani is also more virulent/severe than microti and does not commonly result in anemia like some other Babesia strains do. Respiratory distress, palpitations, day and night sweats, insomnia, headache and kidney issues are hallmark. I personally don't have too many headaches and my sweating is minimal but the air hunger, palpitations, and insomnia can be awful during a flare! I'm being treated for both Babesia and Lyme but I have a very resistant strain of Babesia and it's been difficult to get rid of. I still have hope and several treatments I have yet to try. When the medications are effective, my air hunger, sighing and yawning are greatly decreased. More research is needed to find effective treatments.

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I have had this frustrating syndrome since childhood. It’s very debilitating at times - no doctor understands and neither do I. I live an extremely healthy lifestyle but this sob causes my body enormous stress. I believe this is the root cause of my chronic fatigue. I am going to look up the breathing exercise you mentioned. It really is very strange to have the shortness of breath come and go over the years I’ve always tried to figure out what triggers it I can feel myself obviously breathing in an out but I don’t know where the air goes when I breathe in it does not satisfy my need to breathe so I yawn and sometimes I need to yawn multiple times and I exhale forcefully and that makes me feel as though I got a breath and then it could happen a minute or two later and this can go on for months at a time weeks or days it just depends I think maybe that it was hormonal neurological or some type of anxiety that I’m just not aware of now I’m told I have an enlarged heart and they don’t know why because I’m very healthy but I thought to myself it’s probably from all of the straining to breathe my whole life I’m 55 right now so it’s been a long time dealing with this.

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@mostafamahjoori

My sob exaclly same of you because i read your comment . Im the nervuse and worried person ,Especially in 3yeara ago . But when sob come i was in good form , first i think this is panic attack but when its stay and dont go i understand this is not panic
I have lpr reflux and im using medicine for gerd before sob and its controlling,but in 6past month ago im eat any food alot
Let me say when i feeling my sob worst : i feel when wheather is more cold my yawning become more too
When im become nervuse my sob become worst too , as well im still bloating alot
Im not sure this is about tick
Oh i forget to say this, my sob disappeared for 4 or 5 days last month and everything is good but when i heard a bad news from a person , a few minute later im sure its back
Do you test anything more for your sob?
Im going to check my blood after this im start anxiety medicine

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@mostafamahjoori let me know if the anxiety medicine helps. Have you looked into breathing exercises? Not only can they help with the SOB/air hunger, but also with dealing with nervousness and anxiety. There are methods where everytime you feel anxious, you breathe slowly in, hold your breath for a few seconds, and slowly exhale to slow down your breathing and reduce the flight or fight response. It would be worth having an exercise like that ready for any of those times.

How is your diet? You mentioned bloating, so I'm wondering if there's a digestive issue, or maybe certain foods that might be causing this.

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@lovemyvets

I have had this frustrating syndrome since childhood. It’s very debilitating at times - no doctor understands and neither do I. I live an extremely healthy lifestyle but this sob causes my body enormous stress. I believe this is the root cause of my chronic fatigue. I am going to look up the breathing exercise you mentioned. It really is very strange to have the shortness of breath come and go over the years I’ve always tried to figure out what triggers it I can feel myself obviously breathing in an out but I don’t know where the air goes when I breathe in it does not satisfy my need to breathe so I yawn and sometimes I need to yawn multiple times and I exhale forcefully and that makes me feel as though I got a breath and then it could happen a minute or two later and this can go on for months at a time weeks or days it just depends I think maybe that it was hormonal neurological or some type of anxiety that I’m just not aware of now I’m told I have an enlarged heart and they don’t know why because I’m very healthy but I thought to myself it’s probably from all of the straining to breathe my whole life I’m 55 right now so it’s been a long time dealing with this.

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@lovemyvets, wow I'm sorry you've been dealing with this for so long. Sounds like you've been managing it somewhat but is still frustrating and debilitating. When it first started for me, part of the breathing method was to only breathe through the nose at all times, and incorporating that into physical exercise and throughout the day. I resisted the urge to take a deep breath even when it felt like I needed it, and would only take the deep breath when I couldn't take it anymore. Doing this over the course of 2-3 really helped my breathing quite a bit. Something you might want to experiment with, though I'm sure you'll find various techniques from the Buteyko Breathing method. The forceful exhale is what the Buteyko method has you stop; instead, when you do take a satisfying breath, you'd exhale slowly through the nose and slow the breath. This is what I learned, and definitely helped me out. Worth a try- let me know how it goes!

That's interesting that it comes and goes like that. During the 'normal' times, would you say you can breathe completely normally? Do you do physical exercising?

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