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.

@kessme- Hello. GERD can be silent and cause a multitude of problems. Please check this out:
https://www.medicalnewstoday.com/articles/314531
I think that you might find that ruling out GERD by a doctor would be worth it, or save you further problems if you do. What do you think?

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@merpreb

@kessme- Hello. GERD can be silent and cause a multitude of problems. Please check this out:
https://www.medicalnewstoday.com/articles/314531
I think that you might find that ruling out GERD by a doctor would be worth it, or save you further problems if you do. What do you think?

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I wish it was GERD. The only symptom I have for the link you sent is my breathing. I have decided I am not willing to deplete my family income for testing to come back inconclusive. With our high deductible plan it's not worth it to me. Joined this group in hope of someone out there with the answer with their diagnosis. Like I mean earlier I have dealt with this for 30 years at least so I know it's not like threatening or I would have died by now. I got discouraged when I go to a doctor and they treat me like it all in my head.

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@kessme- I hear you with this complaint. It's prevalent with almost everyone, especially women. And I understand, doctors aren't cheap. I encourage you to keep looking and searching for the answers that you want.

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@kessme

I wish it was GERD. The only symptom I have for the link you sent is my breathing. I have decided I am not willing to deplete my family income for testing to come back inconclusive. With our high deductible plan it's not worth it to me. Joined this group in hope of someone out there with the answer with their diagnosis. Like I mean earlier I have dealt with this for 30 years at least so I know it's not like threatening or I would have died by now. I got discouraged when I go to a doctor and they treat me like it all in my head.

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Try get flagyl guys and use it. I discovered this is not a big ailment else it would be life threating. The breathing is the only symptom here. The antibiotic flagyl did the magic for me.

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@kessme

@greff I have always felt it is my diaphragm. The only problem all the doctors I have seen in the past 30 years always try to test for asthma disorders. Because it is intermittent I have had difficulty getting in to a doctor when I am having episodes. I have no GI symptoms. I can eat the hottest, spiciest food around with no reflux. I lay on my right side normally. It is exhausting to go through it day after day, but after 30 years I have learned to live with it. I take shallower breaths and when I need a deeper breath I yawn. I have had multiple chest xrays. I've had chest MRI's. I am a breast cancer survivor of 15 years. This was on going before my cancer so it's not from having chemo or radiation. I just don't get it why someone out there hasn't had a diagnosis to relate to this problem.

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@kessme I hope I can offer a suggestion. You might want to have a physical therapy evaluation, and I would recommend a PT who also has the John Barnes myofascial release training. Surgeries leave internal fascial scar tissue that tighten up and can keep the body from moving properly including your chest wall. All the ribs and muscles need to be able to expand properly which creates a vacuum that allows the lungs to expand fully. If anything impairs movement of the rib cage, it can impair breathing. I do have asthma and thoracic outlet syndrome which causes neck and chest tightness under the collar bone where the nerves are passing on their way to the lungs. There are different nerves involved in breathing for the upper and lower parts of the lungs. What happens to me when I can't expand one side of my ribs fully is that I start using neck muscles to breathe which also causes some anxiety and a faster heart rate. When I have allergy and asthma problems it all gets worse, and I can be prone to lung infections if the phlegm gets trapped because my lungs are not moving enough from this physical problem. I do have tightness that extends through my rib cage to my pelvis and does affect my diaphragm movement sometimes. My physical therapist does releases on those muscles, and on the tight muscles near my collar bone and arm pit, and it gets my rib cage moving better, and immediately my breathing is deeper and from the diaphragm. I also do similar stretching at home to keep working on it, and I have lowered my heart rate and slowed my breathing by releasing the muscles between my neck and chest. I am also a cervical spine surgery patient, so I have some scar tissue near this area that will tighten if I don't keep working on it. I know I have a habit of sleeping on my right side, and my body is too tight on the left, so I have been reversing this to try to stretch out my tight left side. I think our habits can contribute to things like this.

Thoracic outlet syndrome is more common than doctors think it is, and most doctors don't understand it because it isn't covered well in medical schools. Sometimes they don't consider a physical problem and how that might cause symptoms. It is worth asking a physical therapist about it, and tests for it will be Doppler imaging to see if the blood supply to the arms is cut off by raising the arm or with a change of head and neck position. Neurologists can diagnose it. Usually physical therapy is recommended for TOS. Doctors who understand it are usually at interdisciplinary medical centers like Mayo and it will be listed as a condition they treat. You might find that physical therapy will help even if you don't go through a lot of diagnosis. MFR works on tight muscle and tissue all over the body and once you learn how it works, you will be able to do a lot on your own at home. The therapist will be able to feel the tight pathways through your body. In my experience, doctors don't usually check for this with their hands, and in medical school, they study stiff cadavers, not living fascial tissue that moves even with restrictions.

Here are some links that may be of interest. I have also included our discussion on Myofascial Release that has a lot of information on where to find information and MFR therapists.

https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988
https://www.painscience.com/articles/respiration-connection.php
https://trainingandrehabilitation.com/how-truly-treat-thoracic-outlet-syndrome/

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@joefocus

Try get flagyl guys and use it. I discovered this is not a big ailment else it would be life threating. The breathing is the only symptom here. The antibiotic flagyl did the magic for me.

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@joefocus- It's so wonderful that you received such great results with Flagyl. But not everyone should take it and there are dietary concerns including alcohol or antiabuse. I would recommend speaking with a doctor to make sure that everything is safe and that you have ruled out other possible causes of SOB.

https://www.rxlist.com/flagyl-drug/patient-images-side-effects.htm
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@merpreb

@joefocus- It's so wonderful that you received such great results with Flagyl. But not everyone should take it and there are dietary concerns including alcohol or antiabuse. I would recommend speaking with a doctor to make sure that everything is safe and that you have ruled out other possible causes of SOB.

https://www.rxlist.com/flagyl-drug/patient-images-side-effects.htm

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Ok

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@tonyagregg

30 years ago did you see a doctor and blood test taken? If so, what did they diagnose you with? I have notice my breathing is rapid and shallow and some days i am constantly trying to take a deep satisfying breath. I am so tired of feeling this way. I am going back to the doctor next week for more test.

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Let me know please if you ever have a break through I’ve been living with this for 7 years straight and I don’t want to deal with this for the rest of my life. Frustrating isn’t the right word, it’s much more than that. Honestly makes really angry that no one can help me...

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@jwiegers17

Let me know please if you ever have a break through I’ve been living with this for 7 years straight and I don’t want to deal with this for the rest of my life. Frustrating isn’t the right word, it’s much more than that. Honestly makes really angry that no one can help me...

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Only thing that has helped me is Advair and emergency inhalers. I get bronchospasms apparently. But I don't have asthma. This has been going on since I was diagnosed with pericarditis in February, 2019. I never had these types of breathing problems at any time in my life.

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I’ve read every word of this thread, as I have the many of these symptoms and frustrations. I wish no one else had to deal with this, but I appreciate that all of you posted, as I learned a lot from your words.

Here’s my story. I’ve been having “air hunger” for the past couple months, which has worsened greatly in the past 2 weeks. I never feel like I can take a deep breath, there’s immense pain in the center of my chest, and my heart rate/BPM via my Apple Watch fluctuates between 37 & 210 at rest. I’ve also fainted twice (out of nowhere) and feel dizzy when the breathlessness hits.

I’ve had 2 ER visits and an overnight stay at the hospital in the past week. The tests — focusing on pulmonary embolism, heart valve, congestive heart failure — came back negative. I have a premature bear, which they said isn’t uncommon. In fact, the cardiologist said my heart is really strong, which makes sense because I exercise a lot and have a healthy diet. I had diverticulitis 3 months ago on my right side, which is unusual — a sharp pain in that area next to my hip has lingered since then.

It seems like my symptoms kick into gear while eating and then linger most of the day. I easily did a bootcamp class 3 weeks ago and now have trouble walking my dog around the block.

I’m seeing a GI doc this Friday, but the pulmonology test isn’t available for another couple months. The thought of struggling like this is overwhelming. Any advice would be appreciated. Thank you!

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