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.

@gabrielm

Hello, just wondering if any of you find this might be an ocd issue with the breathing deeply? Our minds thinking we need to feel the breaths we take in but really we dont. Then by fighting this urge to feel deep breaths leads us to overbreathe and worsens it to become shortness of breath. Then the breathing too much leads to more panic and the cycle starts over.....is this all mental???
Ocd can be a bodily function that can be breathing, blinking, and swallowing too often or feeling the need to.....

I have found that breathing thru my nose has helped some, keeping my mouth shut as much as possible....... 478 breathing also. And cbd oil
I find it to be awful if this is a mental thing becaue that means only 1 person can control this vicious cycle.... US. Yikeeesss.

OR is this another health issue? I dont think for a few of us it is 100% just hyperventilating. Something has to cause the need to hyperventilate....

REPLY

Hello all, I have been reading through this thread for some time now, and wanted to get on board. Just like most of you I have been experiencing some strange symptoms for the past 8 months now. In the first few months it was just shortness of breath. In addition, I have been having stints of chest pain, only on my left side, and in the past ~5 months have been having back pain. With heart issues ruled out by a normal EKG test, I took a slew of blood tests, all coming back normal. Tested for lyme disease, celiacs, h-pylori, all negative. Took a Pulmonary Lung Function Test, which came back normal. 2 Chest X rays about two months apart, which were both normal. An abdominal ultra-sound which also came back normal. I have been seeing a pulmonologist, who has given me 3 different inhalers that have all been useless. I have gone to chiropractors, massage therapists, and even bought a new bed but still the symptoms persist.

Although my symptoms have been persistent, they have become manageable to an extent. Once I ruled out the obvious life threatening answers, I was able to calm my mind and relax a bit more when symptoms flared up. Needless to say, the first couple of months were stressful, and anxiety ridden.

All of these symptoms don't make a whole lot of sense to me as I have always been a healthy guy. Running many miles per week (although now my times have dropped a bit, I can still go for a 5 mile run and feel "good"), rock climbing (which I have stopped as I think it may be a source of back pain), playing soccer, hiking, backpacking, etc and eating a well balanced diet.

The only other issue I have, which I think is more likely related to the cause, is some uncomfortable GI issues.

Also, what I haven't seen mentioned on this thread is occupation, I sit at a desk all day, and my posture for all 8 hours isn't something to write home about, maybe that has something to do with this all.

Anyway, looking forward to any thoughts.

REPLY
@codyprimmer

Hello all, I have been reading through this thread for some time now, and wanted to get on board. Just like most of you I have been experiencing some strange symptoms for the past 8 months now. In the first few months it was just shortness of breath. In addition, I have been having stints of chest pain, only on my left side, and in the past ~5 months have been having back pain. With heart issues ruled out by a normal EKG test, I took a slew of blood tests, all coming back normal. Tested for lyme disease, celiacs, h-pylori, all negative. Took a Pulmonary Lung Function Test, which came back normal. 2 Chest X rays about two months apart, which were both normal. An abdominal ultra-sound which also came back normal. I have been seeing a pulmonologist, who has given me 3 different inhalers that have all been useless. I have gone to chiropractors, massage therapists, and even bought a new bed but still the symptoms persist.

Although my symptoms have been persistent, they have become manageable to an extent. Once I ruled out the obvious life threatening answers, I was able to calm my mind and relax a bit more when symptoms flared up. Needless to say, the first couple of months were stressful, and anxiety ridden.

All of these symptoms don't make a whole lot of sense to me as I have always been a healthy guy. Running many miles per week (although now my times have dropped a bit, I can still go for a 5 mile run and feel "good"), rock climbing (which I have stopped as I think it may be a source of back pain), playing soccer, hiking, backpacking, etc and eating a well balanced diet.

The only other issue I have, which I think is more likely related to the cause, is some uncomfortable GI issues.

Also, what I haven't seen mentioned on this thread is occupation, I sit at a desk all day, and my posture for all 8 hours isn't something to write home about, maybe that has something to do with this all.

Anyway, looking forward to any thoughts.

Jump to this post

@codyprimmer- Hello and I'm so glad that you decided to tell your story. It's so frustrating to not know what is wrong with us when something unexpectedly shows up. I think that getting a GI workup done is a great idea. I couldn't believe the pain I felt on the way to flying to the opposite coast a few years back. I already had SOB because of my lung cancer but not stomach pains. I called my husband as soon as I landed. He had GERD and knew that's just what I had by my symptoms.
Pain in the stomach is hard to diagnose, as you have seen here. There are a multitude of symptoms and I believe that there is always a cause. It very well could be your posture (I sit too much too for the same reason as you). Or it could be a combination of things.
I would consider getting an appointment with a GI doctor soon because your running could be making it worse, or not. Best to get it checked out.
Here is some more information for you: https://www.webmd.com/pain-management/guide/abdominal-pain-causes-treatments#1
Do you know of a good GI doctor?

REPLY
@codyprimmer

Hello all, I have been reading through this thread for some time now, and wanted to get on board. Just like most of you I have been experiencing some strange symptoms for the past 8 months now. In the first few months it was just shortness of breath. In addition, I have been having stints of chest pain, only on my left side, and in the past ~5 months have been having back pain. With heart issues ruled out by a normal EKG test, I took a slew of blood tests, all coming back normal. Tested for lyme disease, celiacs, h-pylori, all negative. Took a Pulmonary Lung Function Test, which came back normal. 2 Chest X rays about two months apart, which were both normal. An abdominal ultra-sound which also came back normal. I have been seeing a pulmonologist, who has given me 3 different inhalers that have all been useless. I have gone to chiropractors, massage therapists, and even bought a new bed but still the symptoms persist.

Although my symptoms have been persistent, they have become manageable to an extent. Once I ruled out the obvious life threatening answers, I was able to calm my mind and relax a bit more when symptoms flared up. Needless to say, the first couple of months were stressful, and anxiety ridden.

All of these symptoms don't make a whole lot of sense to me as I have always been a healthy guy. Running many miles per week (although now my times have dropped a bit, I can still go for a 5 mile run and feel "good"), rock climbing (which I have stopped as I think it may be a source of back pain), playing soccer, hiking, backpacking, etc and eating a well balanced diet.

The only other issue I have, which I think is more likely related to the cause, is some uncomfortable GI issues.

Also, what I haven't seen mentioned on this thread is occupation, I sit at a desk all day, and my posture for all 8 hours isn't something to write home about, maybe that has something to do with this all.

Anyway, looking forward to any thoughts.

Jump to this post

@codyprimmer Something you might want to look into would be thoracic outlet syndrome which is caused in part by bad slouching forward posture, and particularly with your head bent down looking at a desk would aggravate it. TOS is not well known by a lot of doctors. I have it, and it was missed for years. Teaching hospitals that treat TOS would have specialists and neurologists who would be familiar with it (like Mayo). It causes chest tightness, and mine is tighter on my left side and it can cause a painful spasm generated from my neck into my chest that starts in my neck because of a forward neck position. I have had ribs twist from tightness that produces some pain on the front of the chest (sternum) and it affects my breathing when one side of my chest will not expand enough. I got to physical therapy and do Myofascial release work which helps TOS. I also did have a cervical spine issue and had surgery for that, and I continue to rehab for TOS. My TOS has caused a functional scoliosis before by pulling my thoracic spine out of correct alignment. It also pulls to the muscles in the shoulder blades and that can be a source of back pain. MFR therapy has restored the alignment, and I continue to stretch to keep it from re-occuring. For me, the tightness from my chest pulls and connects with my pelvis which sometimes gets pulled out of alignment, such as causing an inflare of the illiac bones, and that will irritate my GI tract. If you do look for an MFR therapist, look for someone with expert level training in the John Barnes methods. If you do have TOS, rock climbing might be something that would get it kicked up as I imagine you would have a lot of overhead arm positions and exertion. Stress also affects it a lot by making everything get tighter. Here are some links with information.

https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988
https://trainingandrehabilitation.com/how-truly-treat-thoracic-outlet-syndrome/
https://neurokinetictherapy.com/the-scalenes-the-dynamic-duo-1

Here is a discussion about MFR therapy
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

REPLY

Hi gabrielm @gabrielm, May 31, 2018
I believe but not a prescription is What ever happened for us may reflect the purpose on what we are concentrating on or what we are looking for and might even not in any way about what we are thinking. By getting from you the words you are saying ( 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) it shows me many things, such as; changing environment, less satisfaction in the whole income conclusions included in plan, may a little of anxiety from strangers or strange place, and ......other negative incoming results around us, and it is usual anxiety or correctly we call it (normal phobia could happened to anyone and coming from any sudden feelings or actings which we are not used to it or it is not from out daily activity). But definitely if you keep pulse oximeter in your pocket and measure your O2 saturation each time you are over-whelmed by this situation, it will tell you if you doing okay or not. with this measurement you take step one, but after keeping do your exercise (and keep the oximeter on hand) if your sat over 89% and at the same time you still have Short of breath it may be normal S.O.B., but in case it is reduced less than say 88% depending on normals of your age you can say there is something wrong and visit your doctor and take a rest at that time. I can consider it just a mental issue if your sat. is over 89% with exercise, and with all medical tests normals. And you have to fight the issue that you stated here on this page by changing or getting another activities help you to forget or help you to improve your thinking. I believe you will be better. Again as I believe my advice is not a prescription but still you can check with your primary physician about its validity. I hope you getting well soon dear !

REPLY
@merpreb

@codyprimmer- Hello and I'm so glad that you decided to tell your story. It's so frustrating to not know what is wrong with us when something unexpectedly shows up. I think that getting a GI workup done is a great idea. I couldn't believe the pain I felt on the way to flying to the opposite coast a few years back. I already had SOB because of my lung cancer but not stomach pains. I called my husband as soon as I landed. He had GERD and knew that's just what I had by my symptoms.
Pain in the stomach is hard to diagnose, as you have seen here. There are a multitude of symptoms and I believe that there is always a cause. It very well could be your posture (I sit too much too for the same reason as you). Or it could be a combination of things.
I would consider getting an appointment with a GI doctor soon because your running could be making it worse, or not. Best to get it checked out.
Here is some more information for you: https://www.webmd.com/pain-management/guide/abdominal-pain-causes-treatments#1
Do you know of a good GI doctor?

Jump to this post

It has been a few months since I have been to my primary care Dr. as I was shooed away to go see a pulmonologist, but it is about time I make an appointment with a GI.

REPLY
@codyprimmer

It has been a few months since I have been to my primary care Dr. as I was shooed away to go see a pulmonologist, but it is about time I make an appointment with a GI.

Jump to this post

@codyprimmer

I was also shood away basically saying anxiety.... What makes you believe it may be a GI issue? I have been having some stomach issues.... always google and literally everything that pops up is stress related..... i do have anxiety but usually only over these problems with breathing...it really sucks.

REPLY

@aea1205 - I sound so frustrated. When things don't work or you are told something that you just know isn't the case ( lol ) it's very maddening isn't it. But believe me when I say that stomach issues can be caused by stress and stomach issues can cause stress. I never went through any testing for my GERD. But I am the anxious sort and I wasn't surprised that I got it. Did you see a GI guy?

@codyprimmer- I'm glad that you have made this choice. The linger you wait the more damage, if it is GI, the more damage can be done.
Have you looked at the lists of things that can cause stomach pain and SOB?

REPLY

@merpreb

I have yellow runny stool, TMI lol... and when I have to go I have to go.... I really dont think any of this is stress related. Although, I do have tons of stress and anxiety over these issues. It is crappy. Literally... weird enough the last few days i have felt hardly any breathing issues... knock on wood.... it pisses me off bc i cant figure out why the hell i cant breathe. Cant find a trigger..... thats what makes me believe it isnt anxiety. It happens whenever.

I am not hyperventilating as when i feel this way, I watch and feel how i breathe. Always with my stomach, although i do mouth breathe sometimes, but not deep or too fast usually.... My anxiety dont help any though.. why do i feel so much better now? Makes no sense. Lol....still scared for it coming back...bc it is baaad at times. Ahhhhhh. Lol

REPLY
@merpreb

@aea1205 - I sound so frustrated. When things don't work or you are told something that you just know isn't the case ( lol ) it's very maddening isn't it. But believe me when I say that stomach issues can be caused by stress and stomach issues can cause stress. I never went through any testing for my GERD. But I am the anxious sort and I wasn't surprised that I got it. Did you see a GI guy?

@codyprimmer- I'm glad that you have made this choice. The linger you wait the more damage, if it is GI, the more damage can be done.
Have you looked at the lists of things that can cause stomach pain and SOB?

Jump to this post

@merpreb

No i have not seen a GI yet.

REPLY
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