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.

@merpreb

@kessme- Whining is allowed here anytime. But I didn't pick up that tone from you at all. We have temper tantrums, vents, whing and lots of crying on here and it's all welcomed. Connect is a safe haven for patients helping and sharing with others with the same medical problems. We are not medical professionals.
I am so glad that you can control your SOB and feel great. Please, can you give some tips to people who are struggling with this thread?

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I think what helps me the most is really not staying focused on how difficult it is to take a breath, but to remind your self the small easy breath is how you breathe. I know that when I'm thinking about how I know the next breath i take isn't going to fill my lungs completely I struggle with that breath. So I guess the part I have mentioned that the Dr.'s treat me like it's in my head is somewhat true. That's the control part that's important, is rising above what others think and to mentally want to beat them and win! If someone is to not wanting to take control they won't be able to overcome this. I think we need to realize it's probably not going to kill you. Most have had the problem for a long time if and it was life endangering it should've happened by now. I'm not a doctor and I am speaking for myself, but that's how I try to look at it and deal with it most days. I do have those weak days too though. Having gone through cancer and realizing people really don't like to be around a pity party or the constant doom and gloom, was a big eye opener. Positivity not Negativity!

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Here's another option for those dealing with acidity...heartburn or GERD for which diet changes aren't an option or haven't been effective. Take early in the morning 1 hour before you eat so it doesn't cause issues with digesting food. Diet change is still the best option but these work. https://www.alkaseltzer.com/products/gold

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@kessme

I think what helps me the most is really not staying focused on how difficult it is to take a breath, but to remind your self the small easy breath is how you breathe. I know that when I'm thinking about how I know the next breath i take isn't going to fill my lungs completely I struggle with that breath. So I guess the part I have mentioned that the Dr.'s treat me like it's in my head is somewhat true. That's the control part that's important, is rising above what others think and to mentally want to beat them and win! If someone is to not wanting to take control they won't be able to overcome this. I think we need to realize it's probably not going to kill you. Most have had the problem for a long time if and it was life endangering it should've happened by now. I'm not a doctor and I am speaking for myself, but that's how I try to look at it and deal with it most days. I do have those weak days too though. Having gone through cancer and realizing people really don't like to be around a pity party or the constant doom and gloom, was a big eye opener. Positivity not Negativity!

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@kessme- You are very inspirational! What a wonderful way of thinking about things!

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Thank you for the compliment! I just hope and pray everyone who experiences what I have can someday have relief.

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I have been feeling that that since august 2019, not even a year a bit uncomfortable but it’s manageable. Doctors tell me my EKG is normal. My heart rate is normal, oxygen is normal. It’s that one good satisfying breath I usually have trouble taking. I don’t have shortness of breath cause I feel fine it’s that one deep breath. Even with my yawning. I do like half a yawn and it stops.. a nurse I’d have this past week is so positive that my hormones are imbalanced. Blood work they done was normal. So basically I’m a healthy human being.

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@raybeans20

I have been feeling that that since august 2019, not even a year a bit uncomfortable but it’s manageable. Doctors tell me my EKG is normal. My heart rate is normal, oxygen is normal. It’s that one good satisfying breath I usually have trouble taking. I don’t have shortness of breath cause I feel fine it’s that one deep breath. Even with my yawning. I do like half a yawn and it stops.. a nurse I’d have this past week is so positive that my hormones are imbalanced. Blood work they done was normal. So basically I’m a healthy human being.

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@raybeans20- Good morning and welcome to Mayo Clinic Connect. I encourage you to read a lot of the posts in this discussion because there are a lot of answers and tips to help you live a healthier life. Do you have a history of lung disease? It can be frightening to feel that you can't take a deep breath and wonder what is going. Nurses are wonderful but they aren't doctors. How many different kinds of doctors have you seen for this?

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@gabrielm

Yes @tonyagregg, I'd like to keep in touch with you. Sounds like what you have is pretty similar to me. It's been much worse before, but it's stabled out. Still not gone by any means, but I can at least live with it. Let's stay in touch. Maybe we can tag team our research or let each other know if we find some kind of answers.

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@tonyagregg @gabrielm I know this thread is over a year old by now but I just discovered it for the first time. I started having SOB about 4 months ago and haven't been able to find a solution since. My doctor looked into anxiety, asthma, and we finally settled on GERD. Unfortunately, the Omeperazole I was prescribed doesn't seem to have a meaningful impact. I have good days and I have bad days but I can't seem to shake the SOB for more than a few days at a time. It's always present to some degree even on the best of days. Have you found any success since this thread was initially posted?

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@robkern3

@tonyagregg @gabrielm I know this thread is over a year old by now but I just discovered it for the first time. I started having SOB about 4 months ago and haven't been able to find a solution since. My doctor looked into anxiety, asthma, and we finally settled on GERD. Unfortunately, the Omeperazole I was prescribed doesn't seem to have a meaningful impact. I have good days and I have bad days but I can't seem to shake the SOB for more than a few days at a time. It's always present to some degree even on the best of days. Have you found any success since this thread was initially posted?

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Haven’t found a solution for it yet. I Don’t have SOB all the time... for what I feel like anyways.. it’s just that one big deep breath I can’t take “sometimes” not all the time..

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Don’t know how much longer I can stand this. It’s so frustrating not knowing why I can’t just breathe normally. Like ya it’s gotten slightly better over the years but I don’t see this constant uncomfortable feeling ever completely going away. It’s kind of comforting knowing some people at least know what it’s like but I also wouldn’t wish it on my worst enemy. Just gotta remember that I have it a lot easier than some people on this earth. It’s not ever painful just constant uncomfortable feeling of feeling short of breath (maybe I just was breathing unnaturally for too long or something idk??)

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@jwiegers17- I know, it can be very overwhelming and frustrating not to know the cause of something that causes breathing problems. You don't have to feel like your symptoms are less important than anyone else. You have SOB. It affects you and it's difficult. I don't feel that I have it easier with my cancer than someone else because mine hasn't metastasized. We are all different. When do you experience this the most?

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