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.

My son and I have the exact same thing that you describe. I know in my heart that it’s not allergies or asthma. It’s particularly bad for him. Doctors can’t figure it out. I will read through all the comments here to look for answers. Thank you for posting!!!!!!

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@gabrielm

I’m glad you find a sense of hope here! What kind of breathing exercises have you done and how long have you been keeping that up?

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@gabrielm
I messaged you about a year ago. We have identical symptoms and identical health check ups that show nothing physically wrong. I did notice you Commented on the comments thread about the doctor believes it is your vagus nerve is damaged due to covid 19? Did this start for you around the time covid came about? Also have you tried any anxiety medications at all? I'm still going through the sob. It never has gone only was better then came back worse after possibly having covid. I have not tried anxiety meds yet. May be my next step. Thank you

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@mabrams50

My son and I have the exact same thing that you describe. I know in my heart that it’s not allergies or asthma. It’s particularly bad for him. Doctors can’t figure it out. I will read through all the comments here to look for answers. Thank you for posting!!!!!!

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Interesting that both of you are experiencing these symptoms. I hope it improves for you. Let me know if you have any questions in particular, happy to help as much as I can. Do you both have it fairly severe or is it mild?

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@cookie2009

@gabrielm
I messaged you about a year ago. We have identical symptoms and identical health check ups that show nothing physically wrong. I did notice you Commented on the comments thread about the doctor believes it is your vagus nerve is damaged due to covid 19? Did this start for you around the time covid came about? Also have you tried any anxiety medications at all? I'm still going through the sob. It never has gone only was better then came back worse after possibly having covid. I have not tried anxiety meds yet. May be my next step. Thank you

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Hi @cookie2009, I think I might have responded to a comment where someone said they may have had a damaged vagus nerve. I myself don't have a damaged nerve. I've been dealing with this since 2012. I don't believe covid affected my symptoms at all as they've been pretty much the same for at least the past 5 years or so.

I haven't taken any medication for anxiety. I don't have generalized anxiety- any anxiety that I perceive is dealt with via breathing exercises if needed, or mental exercises, but I've never had any severe anxiety.

Have you been diagnosed with anxiety by a doctor? Sorry that you've been dealing with it. If it came about during covid, it may be a symptom of 'long covid' which I don't know much about but have read about it a little and there are various long-term symptoms that some people deal with.

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El neurólogo me dijo que a veces el estómago puede subir y comprimir el diafragma hacia arriba... Te digo esto porque tienes una hernia de hiato como yo, y creo que estos suspiros y bostezos tuyos siempre fueron por la hernia de hiato. , algunas hernias aunque fueran pequeñas pueden dar síntomas

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@sarah66

El neurólogo me dijo que a veces el estómago puede subir y comprimir el diafragma hacia arriba... Te digo esto porque tienes una hernia de hiato como yo, y creo que estos suspiros y bostezos tuyos siempre fueron por la hernia de hiato. , algunas hernias aunque fueran pequeñas pueden dar síntomas

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Definitely a good observation! Yeah I think people with hiatal hernias should definitely get that fixed if it interferes with breathing. People with unexplained SOB can definitely have a doctor look at them for a possible hiatal hernia and a remedy for that may definitely help the breathing improve.

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@gabrielm

Definitely a good observation! Yeah I think people with hiatal hernias should definitely get that fixed if it interferes with breathing. People with unexplained SOB can definitely have a doctor look at them for a possible hiatal hernia and a remedy for that may definitely help the breathing improve.

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si es que es de locos tener la necesidad de inspirar de manera profunda cada 1 minuto, al principio pensé que era reflujo, me mediqué para reflujo tomaba mas de 100 mg de esomeprazol al dia seguí una dieta estricta hacia ejercicio bebia 3 litros de agua al dia....absolutamente nada funcionó, simplemente estos suspiros parece que hacen parte de mí, no se como acabar con ellos...
ni siquiera se de donde vienen,pero la explicacion del neurologo parecia logica...

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@gabrielm

Definitely a good observation! Yeah I think people with hiatal hernias should definitely get that fixed if it interferes with breathing. People with unexplained SOB can definitely have a doctor look at them for a possible hiatal hernia and a remedy for that may definitely help the breathing improve.

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Llevo 3 años así suspirando cada dia,no mejora con absolutamente nada, luego otra teoria que me dijo un doctor es que tengo una incoordinacion respiratoria por un nervio pinzado...pero ya ni sé que pensar, aveces si pienso que es el reflujo gaseoso pero yo me mediqué y no me ayudó con estos suspiros nada parece funcionar

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Hi there, so I thought I was the only person in the world with SOB issues. I have gone to Dr after Dr after Dr to try to resolve it. I have had SOB since 2003. It’s so crazy that there’s not an answer for it. I’ve gone to heart Drs and had a nuclear stress test done, I’ve been to lung Drs. My family Dr insists it’s anxiety. Well it’s not. I’ve asked my Drs if they’ve heard of Air Hunger. They all said no. It’s like the top of my chest will not expand enough for me to get a satisfied breath. When I eat and get full, it’s even worse. To sneeze, I have to concentrate on getting a good really DEEP breath just to sneeze. it’s crazy I can’t sneeze normal. I yawn all the time trying to satisfy my breath. I get anxiety from not being able to get a good deep breath. I get winded when I talk. If I workout, I really can’t breath. I don’t want to live the rest of my life like this. If a Dr had these issues, I bet they’d study and find a way to cure it.

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Hi! This may sound weird. I've had this going on for about 20 years now. I happened to come across a tik tok like 10 mins ago talking about POTS and air hunger. I had never heard of anyone else having this issue until that video. Everyone kept saying it was anxiety or that I was just weird. I came across this post because I started searching air hunger on Google. Have you been checked for POTS? I wonder if that may be what's causing it. I'm going to reach out to my cardiologist and ask them to check me for that just in case. I hope this helps ❤️

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