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.

@helpnywhereucan

I understand. When I was in the middle of it, I didn't think I'd see my way out. I thought if I survived it, it would always be that way and who would want to live like that. The good news is, I'm about 99% free of it. It will come back, for a few minutes or so, here and there, but it's more background noise at this point. I can notice it but I'm never affected by it. And when I think about it, the last time it came back I was having an argument with my husband. I noticed it, but was able to keep shouting and screaming at him, Lol. A few seconds later it was gone. I think it was stress related. The other times it happened, I hadn't had enough water that day.

I've come a long way. When it first started I couldn't lay flat so I never slept. I paced all night long...literally for hours. I would double over it got so bad. I would cry. One time I almost wrecked my car. It was the most horrible thing I'd ever experienced.

I have previous posts if you'd like to go back and read them. When I couldn't sleep I googled SOB all night and tried to piece together a plan. I incorporated plenty of healthy foods, focused on electrolytes, alkalinity, making sure I drank enough water. I also recommend whole foods based supplements. Synthetic vitamins can be acidic. The whole foods ones, less so.

Conventional medicine has yet to catch up with some of these alternative approaches but giving the body what it needs via diet works and supplementing if you have to. Our Western diet, full of fast and convenience foods is very acidic. We don't follow the food pyramid any longer. Most kids don't know what it is. They eat from the drive through everyday. It's catching up to all of us.

Best wishes to you on your visit to the lung doctor. If nothing is found, try getting as healthy as you can...ultra-healthy if you have to. It's really a can't lose proposition.

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How did u get through this ?

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@laurasue

How did u get through this ?

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I tend to be action oriented. I started with researching SOB seeing the different causes and piecing together a puzzle. I'm still not 100% clear of all the ins and outs of it but I got to a place where I found some things I could try. At that point I had nothing to lose and they worked. Rather quickly I might add.

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@laurasue

How did u get through this ?

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As for the specifics I did it through lifestyle changes. See my previous posts for details. Changed diet to include more fruits and vegetables, moderate exercise, whole foods supplements (not synthetic). I focused on potassium which is a highly alkalizing mineral and made sure I drank the required ounces of water per day. See my previous posts for details.

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I'll post this here again. Not only are potassium rich foods highly alkalizing, but potassium is needed to signal proper lung expansion and contraction which could be why many of us felt like the breath was getting stuck, etc.

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I'll also remind people to do their own research and be their own advocate. Everybody's body is different. If you think your issue might be related to the body's acid/ base balance here are some terms to research.

Cause of shortness of breath
Electrolyte deficiency
Metabolic acidosis
Metabolic alkalosis
Respiratory acidosis
Respiratory alkalosis

Good health to you all.

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@helpnywhereucan Your post made me feel better I want to be healthy for my wife and daughter and most importantly for myself

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@godislove

@helpnywhereucan Your post made me feel better I want to be healthy for my wife and daughter and most importantly for myself

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@godislove I know exactly how you feel. Look back to the comments for my solutions. It’s not 100% there but I would say it’s like 80-85% most of the time. Very manageable and tolerable. It wasn’t before. It was horrible. Feel free to private message me. I can outline to you what I’ve done. Like @godislove we got to a point where nothing is off the table. Submit your case on crowdmed.com if you have to. Yo have nothing to lose.

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Hi @gabrielm you'll notice that I removed your personal phone number from the message board. Connect is a public forum. We recommend sharing personal contact information using the secure private message function. I might also add that by sharing here in the forum, you are connecting with several people where all can benefit from group support.

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I just want to say I want to thank everyone for their support and trying to help each other to feel better, especially to Gabriel for creating this thread. Everyday is a struggle but we can make through this all together. I am still searching for what’s wrong with me. I hope I figure out what’s causing my SOB so I can at least get answers and start to feel better. Out everything I ever experienced in my life SOB has to be the worst. I am continuing to pray and keeping a positive outlook. Just hope I start to feel better.

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Well, it's been a while since I last posted and I wish I had good news and could say that I have solved this problem. I have not.

I have been willing to try ANYTHING to cure myself of this. I have tried expensive medical tests, weird meditations, and intense exercise regimens, all to no avail. The cat scan of my lungs came back and showed nothing other than I had histoplasmosis at one time. According to the pulmonologist my breathing problems could not possibly be a result of anything shown on my cat scan. My breathing tests showed ruled out asthma and COPD, although I could have figured that from the months of taking inhalers that did absolutely nothing. I am now off all drugs, and my condition is still the same. I was instructed to blow in a "peak air flow meter" for a month to note any changes. There were none. I can blow hard enough to max out the meter in most cases, regardless of how I am feeling. I can conclude that I do not have an obstructive condition.

I have adopted an aggressive exercise regimen to condition my heart and lungs. Although I am 31 and not overweight, I figured perhaps conditioning my heart and lungs more would help. I have been running for about a year, but for the past month or two I have started running 10 miles every week. No noticeable improvement. A few weeks were good, but the past week has been bad with the exact symptoms we are all too familiar with. My diet has included one bag of mixed vegetables and fruits for the past year and a half. I have quite a healthy diet, and making diet modifications seem to yield no differences as well. The magnesium someone suggested also did not seem to make an improvement, although it did give me an upset stomach the next day. Also I have read about "low potassium" a few times. My bloodwork showed that my potassium actually was above the upper limit because of the amount of fruits and vegetables in my diet, so that would not be it.

I do like what one gentleman mentioned - it's not SOB but "air hunger". That rings true to me. I'm not short of breath really, I just feel the need to gasp for more air. I can resist the urge with seemingly no consequences, but why is the urge so persistent when it has been shown that medically nothing is wrong with me?

I feel for all of you, and I read all of your posts. I'm usually on my phone and I find it cumbersome to type long posts, so I typically just like posts that resonate with me. Wishing all of you the best in fighting whatever this is.

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