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.

@greent18

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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That's good that pretty much everything came back normal. Indicates that, all things considering, you're in good health so your body has the ability to heal and recover. You mentioned previously that this started during physical activity- do you exercise a lot and do you push yourself pretty hard when you exercise?

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I was misdiagnosed with anxiety disorder years ago, after I claimed that my job had destroyed my health. The local mental health clinic refused to accept the finding of the specialist anxiety clinic that my levels of anxiety were perfectly normal given physical symptoms. It took me years to put together the full picture of the collapse of my health, requiring multiple diagnoses, operations, years of test results, and something my brother remembered. At the time my health collapsed my brother remembered observing that my skin had turned orange. Years later I was diagnosed with gall stone induced jaundice, requiring removal of my gall bladder. It turns out that both toxins and exertional heat stress can induce short term acute liver failure, inducing bilirubin discolouring of the skin such as my brother had observed. Collapsing from heat stroke following this appears to have induced short term kidney failure, exacerbating long term nephrotic syndrome and inducing hyperalbuminuria/hypoalbuminemia. Low levels of albumin in the blood causes thickening and scar tissue of the wall of the gall bladder, such as they found when they removed my gall bladder. This explained the onset of gall stones soon afterwards. The only abnormal liver test result which occurred, each time gall stones induced more liver injury, was raised gamma glutamyl transferase (GGT). All other liver test inflammatory markers were within low/normal range because I already had impaired liver function. As for the sobbing sound which occasionally when I breath or talk, it likely relates to the phrenic nerve, which apparently connects to the liver. Apparently, a way of knowing whether this can be occurring is if you are experiencing pain in the right shoulder blade. As I experience pain in both shoulders I can't be sure. The phrenic nerve controls the function of the diaphragm and damage to it can result in diaphragmatic flutter, inducing the fluctuating breath I experience.

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@gabrielm

That's good that pretty much everything came back normal. Indicates that, all things considering, you're in good health so your body has the ability to heal and recover. You mentioned previously that this started during physical activity- do you exercise a lot and do you push yourself pretty hard when you exercise?

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It definitely gets worse when going outside/exercising. The more chest pain/tightness has been more recent. It started after smoking weed one night which will not be happening again in my future. That’s when it started to feel this discomfort. When I was high I felt like I was having a heart attack and was crunching on the bed.

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It sounds like you may have Atrial Fibrilation. I know I have spelled this incorrectly, but your doctor will know what I am talking about. This occurs rapidly, and is sometimes very frightening. Your heart beats to fast or out of rhythm. It is important because this is caused by an electrical misfunction of the heart. It can be treated with Eblation, or medication. Have you been tested for Sleep Apnea? If you are found to have a problem you will receive a sleep apnea machine and oxygen for the evening while you sleep. this may also be helpful for you in the long term.
Gina5009

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I have the problem and it mostly occurs when my heart seams a little slow or weak. Next step visit my excellent Cardiologist

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@greent18

It definitely gets worse when going outside/exercising. The more chest pain/tightness has been more recent. It started after smoking weed one night which will not be happening again in my future. That’s when it started to feel this discomfort. When I was high I felt like I was having a heart attack and was crunching on the bed.

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Well it seems there may be a smoking gun (no pun intended!). That's certainly a good thing as most people don't have a link to the symptoms, so that's good that there seems to be a link. If this was recent, I wonder if your body simply needs time to heal and come down from that, even if it's a few weeks/months. Do you feel the symptoms subsiding at all, even slightly?

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@cepheid815

I have the problem and it mostly occurs when my heart seams a little slow or weak. Next step visit my excellent Cardiologist

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Let us know how it goes! I hope your cardiologist can help. It would be awesome if you reported back with good news!

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@barry98888

I was misdiagnosed with anxiety disorder years ago, after I claimed that my job had destroyed my health. The local mental health clinic refused to accept the finding of the specialist anxiety clinic that my levels of anxiety were perfectly normal given physical symptoms. It took me years to put together the full picture of the collapse of my health, requiring multiple diagnoses, operations, years of test results, and something my brother remembered. At the time my health collapsed my brother remembered observing that my skin had turned orange. Years later I was diagnosed with gall stone induced jaundice, requiring removal of my gall bladder. It turns out that both toxins and exertional heat stress can induce short term acute liver failure, inducing bilirubin discolouring of the skin such as my brother had observed. Collapsing from heat stroke following this appears to have induced short term kidney failure, exacerbating long term nephrotic syndrome and inducing hyperalbuminuria/hypoalbuminemia. Low levels of albumin in the blood causes thickening and scar tissue of the wall of the gall bladder, such as they found when they removed my gall bladder. This explained the onset of gall stones soon afterwards. The only abnormal liver test result which occurred, each time gall stones induced more liver injury, was raised gamma glutamyl transferase (GGT). All other liver test inflammatory markers were within low/normal range because I already had impaired liver function. As for the sobbing sound which occasionally when I breath or talk, it likely relates to the phrenic nerve, which apparently connects to the liver. Apparently, a way of knowing whether this can be occurring is if you are experiencing pain in the right shoulder blade. As I experience pain in both shoulders I can't be sure. The phrenic nerve controls the function of the diaphragm and damage to it can result in diaphragmatic flutter, inducing the fluctuating breath I experience.

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Wow thanks for sharing your experience @barry98888! I'm sorry you went through all of this, but glad you were able to pinpoint what the issues were. I hope you have everything under control and glad that you made all these connections. Not everyone is able to do this, so I think your'e definitely one of the lucky ones!

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@gabrielm

Wow thanks for sharing your experience @barry98888! I'm sorry you went through all of this, but glad you were able to pinpoint what the issues were. I hope you have everything under control and glad that you made all these connections. Not everyone is able to do this, so I think your'e definitely one of the lucky ones!

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Thanks Gabe,
Unfortunately, although everyone agree's that the facts fit the pattern of test results, I have found that no local doctors have been prepared to challenge prior diagnoses so no one I know believes that I will ever receive an appropriate diagnosis due to all of the legal issues it would cause my local hospital network. Nonetheless, knowing all of this has successfully shut down all criticism of me for having failed to positively respond to, or continue, the psychiatric treatment which was claimed to be the cure for my condition. It has also shifted the attention of professionals to the local hospitals which chose to deny me any work compensation due to the injuries.

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You should be checked for pulmonary embolisms. Also for a blood disorder related to high platelets. Also find a doc who specializes in pulmonary hypertension. It takes a specialist in that to diagnose. Don't doctor yourself. Find the root cause and be treated for it.

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