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 @greent18, Were you checked for asthma during your lung check, whether the common kind, or sports asthma? I know some people who have exercise-induced asthma that can cause a feeling of shortness of breath or air hunger while exercising.

People have noted things that have helped them over the years. I know there are a lot of pages of comments on this thread, but might be worth it to skim through at least a few of them. I encourage people to do breathing exercises because that's what helped me. They may not help everyone, but I figure it doesn't hurt to try. I use the Buteyko method and that's what has helped me the most, as well as keeping up with regular exercise (with breath control).

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I have not been checked for asthma yet, but when I got my ekg yesterday, they said my t peaks were higher than normal which can be associated with high potassium possibly leading to shortness of breathe. I am going in for blood work and X-rays at some point and can report back.

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@debwks0504

I do appreciate just having someone to discuss this with who is experiencing the same thing. I have mentioned this to my GP, my gastroenterologist, my asthma doctor. All, at first, were linking it to allergies, then the gastro: “there’s a link to breathing issues with GERD”- so we went that route (GERD meds). None of that helps this issue. And besides that didn’t your say you don’t have asthma, yet still have the air hunger??? However, I’ve noticed when I am not exerting myself, and am calm, the air hunger is practically non-existent. I get that you have to try different meds until you find something that works. Excluding my GP and my favorite dr in the whole world, you get this impression from other doctors that “it must be in your head, because your tests do not show issues”, though, of course, they don’t come out and actually say that. I do thank you for this enlightening discussion, it’s nice to prove to myself “it’s NOT in my head”…….Thank you! Debby Weeks, Spring Hill, FL

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DEB PLEASE. I WANT TO SAVE YOU SUFFERING. YOU FEEL BETTER AFTER EXERTION THEREFORE IT IS CALLED PSUEDO DYSPNEA, FAKE BREATHLESSNESS. IT IS ANXIETY. NOW WAIT THAT DOESNT MEAN YOU ARE STRESSED OR WORRIED. IT MEANS WHEN YOU FIRST FELT THIS SYMPTOM IS WAS EXCESS ADRENALINE MAKING YOU FEEL THAT YOU DID NOT HAVE ENOUGH AIR BUT YOU BELIEVED IT TO BE REAL AND A THREAT SO YOUR BODY IS SO IRRITATED BY THIS FEELING IT CONTINUES TO MAKE MORE ANXIETY ABOUT IT AND YOU CONTINUE TO STRUGGLE. SHAAN KASSAM ON YOUTUBE, CLAIRE WEEKES BOOK,PAUL DAVID BOOK, DARE BOOK.

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@pamir

Hi Esra, my symptoms are very similar. I was initially told I had allergic asthma. But the medicine did not really help. I have also been told that acid reflux might be causing it but treating that didn’t help either.

I recently read about phrenic nerve damage and I believe its related to diaphragm. My next move will be seeing a neurologist to look into this.

Btw I am also from Turkey 🙂 aslinda dm atmak istiyodum baska bi turke denk geldigim icin ve turkiyede nasil ilerliyo bu isler diye. Ben amerikada yasiyorum. Konusmak istersen haber ver. Cok gecmis olsun.

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ITS ANXIETY MY MAN LOOK AT MY OTHER POSTS. SHAAN KASSAM ON YOUTUBE, CLAIRE WEEKES BOOK, PAUL DAVID BOOK, DARE BOOK.

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@mabrams50

Not sure if this info is helpful to anyone out there or not, but I found a CBT therapist who specializes in breath treatment. Both my son and I are scheduling appointment with him. I'll let you all know how it goes but I am hopeful! https://breathamy.com/buteykoclinic/

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IM GLAD YOU ACCEPT ITS ANXIETY. LOOK TO SHAAN KASSAM ON YOUTUBE, CLAIRE WEEKES BOOK, PAUL DAVID BOOK, DARE BOOK.

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@mabrams50

Yes that it was I think as well. But I can't find treatment for it... how do you find doctors/psychologists who know how to specifically treat sighing dyspnea? Are there breathing exercises? Help!!!

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SHAAN KASSAM ON YOUTUBE, CLAIRE WEEKES BOOK, PAUL DAVID BOOK, DARE BOOK.
THOSE ARE THE RESOURCES THAT WORKED FOR ME ALL TEACH SIMILAR THING.
ILL SUMMARISE THEM BUT DO LOOK INTO THEM EACH TO SEE WHICH YOU COMPREHEND BEST BUT COMBINE THEM BECAUSE ITS ALL THE SAME
SHAAN KASSAM- FOCUS ON YOUR RESPONSE TO THE FEELING. ALARM SYSTEM- Acknowledge Label(as anxiety) Accept(passively by getting on with life) Refocus Move on. Measure your recovery by your response not your symptoms severity or frequency. Greatest amount of progress occurs when you feel symptom but you keep living just as you would without it there.
CLAIRE WEEKES - FACE, ACCEPT, FLOAT, LET TIME PASS
PAUL DAVID- YOU WILL NEVER GET BETTER UNTIL YOU STOP TRYING TO GET BETTER . when someone asks him how do i fix this issue he replies simply do nothing and its true trying to fix it doesnt work by bretahing exercises or mentally.
DARE- DISTINGUISH(ITS ANXIETY SYMPTOM) ACCCEPT(PASSIVELY BY LIVING LIFE WITH IT) RUN TOWARD(DONT COWAR FROM IT IT CAN HIT YOU LIKE A CAR AND YOU SHOULDNT CARE) ENGAGE(BEST STEP ENGANGE FULLY IN LIFE FEARLESSLY DO EVERYTHING BECAUSE YOU NEED TO TEACH YOUR MIND AND BODY THERE IS NO THREAT)

if you are in such a bad way you are willing to pay for counselling, dare do online coaching, also shaan kassam does but id say dare is more mainstream. In order you can look at the online videos and web pages then you could buy books of theirs and then if you need it paid counselling.

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gabe im waiting for you to accept what i am saying i dont want you living on edge about this mysetrious sob, i dont want you to waste a second of your precious life on breathing exercises. i get messages from past sufferers and they tell me oh i eat this, drink this, do this breathing exercise, thats not freedom you are fighting every day. You know how many times ive felt sob over the past few months, none. breathing exercises is a crutch of anxiety, it is not something that will free you from it. THE FEELING IS FAKE IT IS NOT IMPORTANT GO BACK TO LIVING PLEASE GABRIEL.

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@yessir321

gabe im waiting for you to accept what i am saying i dont want you living on edge about this mysetrious sob, i dont want you to waste a second of your precious life on breathing exercises. i get messages from past sufferers and they tell me oh i eat this, drink this, do this breathing exercise, thats not freedom you are fighting every day. You know how many times ive felt sob over the past few months, none. breathing exercises is a crutch of anxiety, it is not something that will free you from it. THE FEELING IS FAKE IT IS NOT IMPORTANT GO BACK TO LIVING PLEASE GABRIEL.

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What are you talking about?
Do you know what anxiety is? there is absolutely no symptom of anxiety that lasts all day like the sobbing that these people present here

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@sarah66

What are you talking about?
Do you know what anxiety is? there is absolutely no symptom of anxiety that lasts all day like the sobbing that these people present here

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YES THERE IS SARAH, OMG. THAT KIND OF LIE KEPT ME BELIEVING THE SAME. ANXIETY SYMPTOM OF A RESPIRATORYSENSATION CAN LAST ALL DAY IF YOU FEAR IT TRY FIGHT IT AWAY AND FOCUS ON IT. BECAUSE EACH MOMENT YOU DO YOU TELL YOUR BODY OKAY THIS IS A THREAT SO YOUR BODY WHOSE JOB IT IS TO SURVIVE PRODUCES MORE STRESS HORMONES AND ADRENALINE AND THE FEELING LASTS AND OCCURS MORE OFTEN. SARAH DONT TALK ABOUT SOMETHING YOUVE NO EXPERIENCE WITH. PHYSICAL ANXIETY SYMPTOMS CAN PUT YOU IN A VICIOUS CYCLE OF SUFFERING BECAUSE THE FEELING IS THE THING THAT STRESSES YOU AND THE FEELING IS WHAT COMES WHEN YOURE STRESSED AND THAT CYCLE GOES ON AND ON AND ON

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@greent18

I have not been checked for asthma yet, but when I got my ekg yesterday, they said my t peaks were higher than normal which can be associated with high potassium possibly leading to shortness of breathe. I am going in for blood work and X-rays at some point and can report back.

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Yes please do! It'd be interesting to see if treating the high potassium will help your air hunger. I hope it does!

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@gabrielm

Yes please do! It'd be interesting to see if treating the high potassium will help your air hunger. I hope it does!

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I just got my blood results back and I have a high white blood cell count of 14.2, high end for sodium of 146 and a little high glucose. Other than that, my ekg was fine and X-rays looks good. I still feel short of breath and it’s been getting worse. I have been sleeping a lot and have a cloudy head. No headache but I am anxious about everything which is unusual for me.

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