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.

I have the same problem for a few years already. All tests were good. I realised that my reflux and anxiety could be causing it. I stoped using gluten products, trying to not think about it and it helped a lot, sometimes it dissapears completly.

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@gabrielm

They have put me on paxil and risperdal for anxiety. Seems like the paxil has helped some.... Just starting the risperdal today.

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@aea1205

@gabrielm

They have put me on paxil and risperdal for anxiety. Seems like the paxil has helped some.... Just starting the risperdal today.

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Hey @aea1205. Glad the meds are helping! Keep us posted.

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Sorry it’s been so long since I’ve been on here, I’ve been really busy with school and work, but I’ve been to a gastroenterologist and had two endoscopies done in the mean time, and I’ve finally discovered with I think has been causing my shortness of breath. I was originally diagnosed with eosinophilic esophagitis after an initial endoscopy (which is basically an allergic inflammation of the esophagus similar to asthma), and after two months of omeprazole 40 mg twice per day and an allergen-free diet, I have been cleared of that condition (and my GERD has gotten a lot better). However, in the meantime I developed a fungal infection in my esophagus which caused the inflammation to continue, and I suspect that I might have another condition that constricts the esophagus, esophageal achalasia. Therefore, what I think is happening is I’m feeling tightness in my esophagus, mistaking that for my lungs/trachea, and then breathing more deeply to compensate. I go back to the doctor in a month so I’ll try to keep everyone updated more.

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@chines118

Sorry it’s been so long since I’ve been on here, I’ve been really busy with school and work, but I’ve been to a gastroenterologist and had two endoscopies done in the mean time, and I’ve finally discovered with I think has been causing my shortness of breath. I was originally diagnosed with eosinophilic esophagitis after an initial endoscopy (which is basically an allergic inflammation of the esophagus similar to asthma), and after two months of omeprazole 40 mg twice per day and an allergen-free diet, I have been cleared of that condition (and my GERD has gotten a lot better). However, in the meantime I developed a fungal infection in my esophagus which caused the inflammation to continue, and I suspect that I might have another condition that constricts the esophagus, esophageal achalasia. Therefore, what I think is happening is I’m feeling tightness in my esophagus, mistaking that for my lungs/trachea, and then breathing more deeply to compensate. I go back to the doctor in a month so I’ll try to keep everyone updated more.

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@chines118

I feel that would sound true. I am also feeling that way. I think over breathing is def part of this for a lot of us and we didn't know it. And panicing....That makes breathlessness worse. And an emergency..... We need to stay calm, nostril breathe, slow in and out to overcome overbrrathing from panic.... In also feel I have an underlying cause to this... Not heart or lungs. But throat, muscles, or gerd issues... Something.

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@chines118

Sorry it’s been so long since I’ve been on here, I’ve been really busy with school and work, but I’ve been to a gastroenterologist and had two endoscopies done in the mean time, and I’ve finally discovered with I think has been causing my shortness of breath. I was originally diagnosed with eosinophilic esophagitis after an initial endoscopy (which is basically an allergic inflammation of the esophagus similar to asthma), and after two months of omeprazole 40 mg twice per day and an allergen-free diet, I have been cleared of that condition (and my GERD has gotten a lot better). However, in the meantime I developed a fungal infection in my esophagus which caused the inflammation to continue, and I suspect that I might have another condition that constricts the esophagus, esophageal achalasia. Therefore, what I think is happening is I’m feeling tightness in my esophagus, mistaking that for my lungs/trachea, and then breathing more deeply to compensate. I go back to the doctor in a month so I’ll try to keep everyone updated more.

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Do you have a cough or any other symptoms that indicated the fungal infection ?

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@chines118

Sorry it’s been so long since I’ve been on here, I’ve been really busy with school and work, but I’ve been to a gastroenterologist and had two endoscopies done in the mean time, and I’ve finally discovered with I think has been causing my shortness of breath. I was originally diagnosed with eosinophilic esophagitis after an initial endoscopy (which is basically an allergic inflammation of the esophagus similar to asthma), and after two months of omeprazole 40 mg twice per day and an allergen-free diet, I have been cleared of that condition (and my GERD has gotten a lot better). However, in the meantime I developed a fungal infection in my esophagus which caused the inflammation to continue, and I suspect that I might have another condition that constricts the esophagus, esophageal achalasia. Therefore, what I think is happening is I’m feeling tightness in my esophagus, mistaking that for my lungs/trachea, and then breathing more deeply to compensate. I go back to the doctor in a month so I’ll try to keep everyone updated more.

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Did you get the strange chest pains too?

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So this is probably a long shot but I know mine started out of the blue after I injured myself doing too heavy if chest press weights. Others start after a bad cold, maybe hard coughing. Does anyone think this could be a misalignment or structure symptom. I have been getting massages because of tingling and neck pain when I ride my spin bike and the lady told me my spine at the top Ian flat and not round. I wonder if seeing a chiropractor or physical therapist could help. My doc has me on meds for silent reflux but meds don’t make any difference.

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Possibly anxiety attacks ,causing the sob, on the bright, very bright side, you have normal heart and lungs, you are very fortunate.

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@kjconrad

So this is probably a long shot but I know mine started out of the blue after I injured myself doing too heavy if chest press weights. Others start after a bad cold, maybe hard coughing. Does anyone think this could be a misalignment or structure symptom. I have been getting massages because of tingling and neck pain when I ride my spin bike and the lady told me my spine at the top Ian flat and not round. I wonder if seeing a chiropractor or physical therapist could help. My doc has me on meds for silent reflux but meds don’t make any difference.

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@kjconrad Tingling and neck pain can be a spine problem or a nerve entrapment issue like thoracic outlet syndrome which can be caused by an injury to the neck or chest. TOS can affect breathing because it affects some of the muscles surrounding the rib cage. You might want to start with a neurologist who can figure out where the tingling is coming from. TOS is aggravated by a forward arm position and rounded shoulders and even forward neck positions, and you might be doing that riding the spin bike. Physical therapy and myofascial release can help TOS and correct posture is really importrant. I have TOS and I also had cervical spine surgery. If you suspect a spine issue at all, don't let anyone manipulate your vertebrae because it can injure you if there is an underlying problem. Here is some information about TOS and our discussion on MFR therapy with lots of links and information. You can find an MFR therapist at https://myofascialrelease.com/find-a-therapist/ , but you will need a doctor to determine if you have any spine instability before you let a therapist work on your neck. Your therapist should ask for this so they understand what they are working with. MFR is gentle stretching and not chiropractic manipulation. If the tight tissues are released, the muscles and bones can go back in line where they belong.

https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988
https://www.painscience.com/articles/respiration-connection.php
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3501918/
https://share.upmc.com/2016/08/thoracic-outlet-syndrome-symptoms-and-causes/
https://trainingandrehabilitation.com/how-truly-treat-thoracic-outlet-syndrome/
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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