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.

@jorgeolmedom

Hi Amanda, thank you for your response. I consulted last week with my doctor and she recommeded to take prednisolone, which is a treatment for allergies but it is not helping. I suspect that by reducing my eosinofils I could get better, but yet I have not received any treatment for that

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Hello Jorge, I have experienced similar symptoms as you back in 2013. My dr put me on a medication called 'Singulair', generic name is Montelukast. This was a real life changer for me as I was sensitive to just about everything. It works by blocking the receptors in your nasal passages and probably other areas as well. It blocks the allergens from attaching to your receptors. Maybe you can ask your dr about that. Your throat issues sound like it could be acid reflux. I had that and it was very painful as my stomach acid was coming up my throat at night and eating away my esophagus. I started taking ometprazole an hour before each meal and that helped a lot. I only had to be on that for several months. I then followed the protcol for acid reflux such as: don't eat or drink anything for three hours before bedtime, (except for a few sips of water). Sleep with your head and shoulders elevated so that gravity keeps your stomach acid in your stomach. Avoid acidic foods that may burn your fragile esophagus, i.e. cokacola soda, tomatoe sauce and juice, citric juices like lemonade and orange juice, and alcohol. Prednisone is a good drug to combat inflammation, but does not arrest allergies. I hope my suggestions help you in some way. Will you return here and let me know how you are doing? -Terri

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@merpreb

@jorgeolmedom- I'd also like to welcome you to Mayo Clinic Connect. We are patients helping other patients. I certainly empathize with you. You seem to be having a lot of symptoms that do need to be dealt with. First, let me tell you that unless you have a heart problem or other very serious organ problems you won't die from being short of breath.

How long ago did you have an endoscopy? The throat is a small area and any swelling will hurt a lot. Also, there are nerve endings there so it might also feel worse.

Can you get to another part of your Country or come to the US? Also, have you been tested for COVID-19?

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Hi Merry, thanks a lot. Your words give me some peace because being short of breath scares me a lot. Fortunately, my heart seems to be working perfectly and I do not have any serious organ problem. I tested negative for Covid 19 and my symptoms come from may or june (7 months). Unfortunately I have no plans to travel to the US in the following months

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@windwalker

Hello Jorge, I have experienced similar symptoms as you back in 2013. My dr put me on a medication called 'Singulair', generic name is Montelukast. This was a real life changer for me as I was sensitive to just about everything. It works by blocking the receptors in your nasal passages and probably other areas as well. It blocks the allergens from attaching to your receptors. Maybe you can ask your dr about that. Your throat issues sound like it could be acid reflux. I had that and it was very painful as my stomach acid was coming up my throat at night and eating away my esophagus. I started taking ometprazole an hour before each meal and that helped a lot. I only had to be on that for several months. I then followed the protcol for acid reflux such as: don't eat or drink anything for three hours before bedtime, (except for a few sips of water). Sleep with your head and shoulders elevated so that gravity keeps your stomach acid in your stomach. Avoid acidic foods that may burn your fragile esophagus, i.e. cokacola soda, tomatoe sauce and juice, citric juices like lemonade and orange juice, and alcohol. Prednisone is a good drug to combat inflammation, but does not arrest allergies. I hope my suggestions help you in some way. Will you return here and let me know how you are doing? -Terri

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Hi Terri. Just great! thanks a lot. of course your suggestions are really helpful and I will try to follow them. (I lifted my bed for gravity) I will talk to my doctor about Ometprazole and Prednisone and for sure will start that treatment. How often did you take prednisone?. I guess I need something for allergies and start Ometpazole and prednisone. Thanks a lot and God bless you

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I had a panic attack from not being able to get a deep breath Sept 11th. Everyday since has been pure hell. I have a 7 year old daughter who desperately needs her mother back. I’ve never felt so alone and scared. I worry about being able to get a deep breath 24/7. Blood work came back clean. I asked for a chest X-ray. They say anxiety but I just have this nagging feeling I cannot shake. Anyone who is willing to text private message me. It would bring me so much comfort to have someone who understands and believes me.

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Kperry I've had the same feeling of not being able to get the deep breath 24/7. This air hunger consumed my life. But it gets better trust me. It started earlier this year were I couldn't get that fulfilling breath. Same with you blood work fine, chest x-ray fine, no doctor could find a reason. I was terrified dealing with this breathing problem every day all the time. Takes a toll on you. Then I remember reading posts on this thread and some people were talking about it being an ocd thing maybe related to anxiety or depression. Something mind/body not being in sync. So I basically convinced myself that I'm not dying from this and it was all in my head. I told myself there is nothing wrong with me, it's a mental thing. It was hard and took a long time but believe it or not eventually it went away. Of course I was amazed and feeling great for about six months or so this year but now occasionally it comes back. But it doesn't last long, I can deal with it and generally over a few days or so it gets better again. I can deal with that compared to how terrifying it was at the start. I know I'm going to be fine. Now, I'm not totally it's convinced it's all mental, in fact I notice the air hunger during times my body is worn down or just out of sync, maybe stress either physically or mentally emotionally. I think there is a physical relationship between my breathing and something like gerd and/or anxiety. Not sure. I also think emotional heart health and resilience could play a part. There's a lot of deep things in our minds we don't understand. But trust me it gets better. Hope this helps good luck.

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@nick43

Kperry I've had the same feeling of not being able to get the deep breath 24/7. This air hunger consumed my life. But it gets better trust me. It started earlier this year were I couldn't get that fulfilling breath. Same with you blood work fine, chest x-ray fine, no doctor could find a reason. I was terrified dealing with this breathing problem every day all the time. Takes a toll on you. Then I remember reading posts on this thread and some people were talking about it being an ocd thing maybe related to anxiety or depression. Something mind/body not being in sync. So I basically convinced myself that I'm not dying from this and it was all in my head. I told myself there is nothing wrong with me, it's a mental thing. It was hard and took a long time but believe it or not eventually it went away. Of course I was amazed and feeling great for about six months or so this year but now occasionally it comes back. But it doesn't last long, I can deal with it and generally over a few days or so it gets better again. I can deal with that compared to how terrifying it was at the start. I know I'm going to be fine. Now, I'm not totally it's convinced it's all mental, in fact I notice the air hunger during times my body is worn down or just out of sync, maybe stress either physically or mentally emotionally. I think there is a physical relationship between my breathing and something like gerd and/or anxiety. Not sure. I also think emotional heart health and resilience could play a part. There's a lot of deep things in our minds we don't understand. But trust me it gets better. Hope this helps good luck.

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How did you resist the urge? Also when you couldn’t get one did you panic

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@kperry

How did you resist the urge? Also when you couldn’t get one did you panic

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I’ve basically made myself bedridden on the couch. I am making it worse not moving around now I feel weaker in my body. It’s such a mess I feel hopeless.

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I just remember resisting the urge to go for the deep breath and waiting much much longer to try for the deep breath. Eventually I thought about it a little less and less. I remember times my chest and lungs felt sore because I was trying so hard. It was the same with yawns. I would try to yawn and nothing. Very frustrating. But eventually after a while you'd get that fulfilling breath or yawn. Somedays it was easier but some days it took a long time to get that good feeling.

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As long as your test results all look good there's a good chance ,like me, it's mostly something you can control. I wish I could shed more light. It does get better. It does. But don't give up with the doctors maybe they can point you in a direction where you can get relief. Keep calm and take very good care of yourself body mind and spirit. Good luck.

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@kperry

I had a panic attack from not being able to get a deep breath Sept 11th. Everyday since has been pure hell. I have a 7 year old daughter who desperately needs her mother back. I’ve never felt so alone and scared. I worry about being able to get a deep breath 24/7. Blood work came back clean. I asked for a chest X-ray. They say anxiety but I just have this nagging feeling I cannot shake. Anyone who is willing to text private message me. It would bring me so much comfort to have someone who understands and believes me.

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Hi KPerry. I understand that feeling is terrifying, but believe me, it will go away.
The first time I experienced that was in July this year. I had been having problems with my throat and taking pills I was alole in my bedroom when I suddently felt I was not breathing normally and I went into panic inmediately. I ran to the shower to see If I had some relief but I didnt. Since I had been sick for several days and thinking on Covid 19 syptoms, I ran to the hospital and they said It was not related to that. After two-three hours the sensation was gone. It comes back since once or twice a month and I still get terrified but I have leart to live with that.
Please, hang on there! with the mercy of god, we will get better
my best wishes

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