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

Makes sense. That can certainly cause the feeling of not being able to catch your breath for a while, as though you just exercised even though you might have walked a few steps. I’ve been on both ends of the spectrum; overweight and normal weight. For me and for many others here, the breathing problems persist since I believe the “air hunger” is different from shortness of breath where breathing might be labored. With dyspnea, one could be sitting completely still for hours and the empty lung feelings still remains. So very complex and mysterious!

Jump to this post

Hi,
Your last sentence was spot on - thank you so much for that.. as it's nothing like not catching a breath after a run etc. - as that is normal for anyone even athletes.
Even when I went to the hospital for it last year they didn't seem to get it.
I will have to make an apt with the lung Dr that diagnosed me with Dyspnea. That was a few years ago when it was not happening daily.
I will not stop until I find an answer & solution.
I don't know about you but I can't live like this as it's not like one can take a pill and there's relief.
Take care

Julia

REPLY
@ailuj70

Hi,
Your last sentence was spot on - thank you so much for that.. as it's nothing like not catching a breath after a run etc. - as that is normal for anyone even athletes.
Even when I went to the hospital for it last year they didn't seem to get it.
I will have to make an apt with the lung Dr that diagnosed me with Dyspnea. That was a few years ago when it was not happening daily.
I will not stop until I find an answer & solution.
I don't know about you but I can't live like this as it's not like one can take a pill and there's relief.
Take care

Julia

Jump to this post

Hi Julia-

Dyspnea is the correct term that includes air hunger, shortness of breath, and SOB. I think that this disease is complicated enough without it having more than one name. So let's confine it to dyspnea. This way other, new members won't be confused, and neither will I!

Gabe shares some interesting information about how his dyspnea might express itself at different times. However, since we all are so very different, it could show up differently or the same as you and is different, of course, because of the cause.

I consider any long-term disease as a chronic condition that a person needs to deal with and manage to the best of their ability. And this includes dyspnea. We know that no matter the cause of dyspnea stress will exacerbate it and so might stomach acids. So stress reduction and checking to see if a change in diet is needed is extremely important.

We also know that there are breathing exercises that can be very helpful, upper body exercises to strengthen upper body muscles, and medications that help.

Dyspnea can be short-term or debilitating for a lifetime. But taking charge and doing what we can for ourselves will serve us best even if there isn't an answer.

I hope that this makes sense?

REPLY
@merpreb

Hi Julia-

Dyspnea is the correct term that includes air hunger, shortness of breath, and SOB. I think that this disease is complicated enough without it having more than one name. So let's confine it to dyspnea. This way other, new members won't be confused, and neither will I!

Gabe shares some interesting information about how his dyspnea might express itself at different times. However, since we all are so very different, it could show up differently or the same as you and is different, of course, because of the cause.

I consider any long-term disease as a chronic condition that a person needs to deal with and manage to the best of their ability. And this includes dyspnea. We know that no matter the cause of dyspnea stress will exacerbate it and so might stomach acids. So stress reduction and checking to see if a change in diet is needed is extremely important.

We also know that there are breathing exercises that can be very helpful, upper body exercises to strengthen upper body muscles, and medications that help.

Dyspnea can be short-term or debilitating for a lifetime. But taking charge and doing what we can for ourselves will serve us best even if there isn't an answer.

I hope that this makes sense?

Jump to this post

Yes it all makes sense and I will be discussing everything with my Dr soon.

Thanks

Julia

REPLY

Well I am 75 yrs. Old ….In the past I have had GERD and HIATAL HERNIA and even an Heart Attack …. I knew from eating food that if I ate too fast
plus let’s say I had a soda , well then I would be in trouble with swallowing and breathing and this would happen now and then but by the next day it was better …..Now about 5 months ago went out to eat and it happened to me again which was not good at all…. Well the nexx day it did not feel better as that stuck in the throat feeling was still lingering ,,,, now that subsided but now I notice that even if I walk a block that I have to stop because I am out of breath and try to breathe some before I try to walk some more before I have to stop again …. I do not know what to do,,,, any suggestions or answers for me ???

REPLY
@ailuj70

Hi,
Your last sentence was spot on - thank you so much for that.. as it's nothing like not catching a breath after a run etc. - as that is normal for anyone even athletes.
Even when I went to the hospital for it last year they didn't seem to get it.
I will have to make an apt with the lung Dr that diagnosed me with Dyspnea. That was a few years ago when it was not happening daily.
I will not stop until I find an answer & solution.
I don't know about you but I can't live like this as it's not like one can take a pill and there's relief.
Take care

Julia

Jump to this post

I am glad you are pursuing answers and are looking for different things that might help. It’s been a journey for me over the years, and I’ve learned to manage it through breathing exercises and controlled physical exercise. But I’m like you, I am always researching and won’t stop until
I find an answer. Not just for me, but my hope is to find an answer for everyone else who is dealing with this condition.

I like @merpreb’s comment about how dyspnea can manifest itself differently for many people. This forum definitely has people that have varying degrees and types of shortness of breath. But hopefully we will work through our own conditions together and one day find a solution that works for everyone! 🙂

REPLY
@daddyo7777

Well I am 75 yrs. Old ….In the past I have had GERD and HIATAL HERNIA and even an Heart Attack …. I knew from eating food that if I ate too fast
plus let’s say I had a soda , well then I would be in trouble with swallowing and breathing and this would happen now and then but by the next day it was better …..Now about 5 months ago went out to eat and it happened to me again which was not good at all…. Well the nexx day it did not feel better as that stuck in the throat feeling was still lingering ,,,, now that subsided but now I notice that even if I walk a block that I have to stop because I am out of breath and try to breathe some before I try to walk some more before I have to stop again …. I do not know what to do,,,, any suggestions or answers for me ???

Jump to this post

Hi @daddyo7777, how did you manage your GERD when you had it? When you say you have a stuck-in-the-throat feeling; are you referring to a breathing sensation or as though there is a lump in your throat?

REPLY
@daddyo7777

Well I am 75 yrs. Old ….In the past I have had GERD and HIATAL HERNIA and even an Heart Attack …. I knew from eating food that if I ate too fast
plus let’s say I had a soda , well then I would be in trouble with swallowing and breathing and this would happen now and then but by the next day it was better …..Now about 5 months ago went out to eat and it happened to me again which was not good at all…. Well the nexx day it did not feel better as that stuck in the throat feeling was still lingering ,,,, now that subsided but now I notice that even if I walk a block that I have to stop because I am out of breath and try to breathe some before I try to walk some more before I have to stop again …. I do not know what to do,,,, any suggestions or answers for me ???

Jump to this post

@daddyo7777- Welcome to Mayo Clinic Connect. I am not a doctor and can not give you medical advice but if I were you I would run to your doctor. You have had one heart attack already and that in itself is cause for dyspnea.

I hope that you take this seriously even if your symptoms turn out to be much less serious. I'll check back with you in a day or so to see how you are. ok?

Merry

REPLY

Tracheal Bronchial Malacia is a condition that causes dyspnea. It is a condition whereby your trachea collapses when you exhale. Many have this condition without being aware. It is diagnosed with a special CTscan that pictures the trachea as one breathes.

REPLY

Well the lump in the throat had to with some breathing as the food will both not come up or down as it just feels like it is stuck there …..The thing is. That the next day you still have that feeling and maybe days after …. What I cannot figure out now is before it would feel ok like maybe after a week but not this time ….. Now at home in my home I am ok but when I go out somewhere and need to walk some distance then comes the SOB after about a block which never use to happen before …. Now did the so called Covid have anything to do with this as our whole family had it about a year ago … With me it was basically headache , coughing and phlegm problem at that time as the last two things still linger in my system,,,, so I am not really sure of what the heck is going on with this …….

REPLY
@daddyo7777

Well the lump in the throat had to with some breathing as the food will both not come up or down as it just feels like it is stuck there …..The thing is. That the next day you still have that feeling and maybe days after …. What I cannot figure out now is before it would feel ok like maybe after a week but not this time ….. Now at home in my home I am ok but when I go out somewhere and need to walk some distance then comes the SOB after about a block which never use to happen before …. Now did the so called Covid have anything to do with this as our whole family had it about a year ago … With me it was basically headache , coughing and phlegm problem at that time as the last two things still linger in my system,,,, so I am not really sure of what the heck is going on with this …….

Jump to this post

What have your doctors told you about the results of your CT Scan. Have they given you a diagnosis? It sounds as if you might have several things going on but I'm still worried if any of it is related to your heart.

Have you decided yet to contact your doctor to see if it's heat-related?

REPLY
Please sign in or register to post a reply.