1. < Lung Health
Mentor

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.

mcno | @mcno | Feb 11, 2021
In reply to @sal51 "I am allergy and immunology. I see pts with a variety of breathing problems and this..." + (show)
@sal51

I am allergy and immunology. I see pts with a variety of breathing problems and this issue is not uncommon to see.
Many posters question a role for allergy.
Academically speaking, this condition is absolutely NOT allergy-related. Allergy affects your eyes and nose (itchy, sneezy, watery, congestion); beyond that, if you have asthma, it can trigger asthma but you will have evidence of asthma on evaluation.
Many talk about going to an allergist, having allergy testing, testing allergic, and receiving treatment.
In this case, the allergist is simply treating your test result, but not this particular problem. Patients who have this condition may have any number of conditions, including allergy but finding evidence of that condition does not imply causation.
In patients searching for a cause of mysterious symptoms, to be told you have evidence of a condition, such as allergy, in some sense can be relieving if you believe, "Finally, they have discovered the problem." You may even improve with treatment directed at that condition but that is likely more a function of believing the treatment will work (and I don't dismiss the importance otherwise).
Until proven otherwise, I believe this condition stems from the brain and some type of aberrant response of your respiratory drive. Because there are no tests for this, all the usual tests for shortness of breath come out normal.
There are various factors which likely affect this aberrant response, with emotion playing a huge role.
The question is how to fix that response that is going haywire and there is no one good answer.
I have wondered about a potential relationship to migraine disorder. That condition can manifest in a number of ways such as irritable bowel (the two diseases are likely related to the same disease manifesting in different parts of the body). In patients with migraine, they generally are hypersensitive to various stimuli that end up triggering symptoms- an example would be someone who reacts to odors with a headache or other symptoms. Migraine is a dysfunction of the nervous system.
Several posters mention symptoms that might be attributable to migraine, such a facial pressure, ear pain, etc. After reading the posts and knowing this condition is more common in females, I've wondered if this is not some odd manifestation of that condition.
I would be curious if any of the posters have been diagnosed with migraine disorder or if they have wondered if they might have it.
Indications of this condition might include "normal" migraines, IBS, other types of headaches including tension and sinus, as well as things like vertigo or odor sensitivity. If it might be related to that, that might suggest treatments targeting migraine could potentially have a role.
There is no evidence to support this idea, just something I've wondered about and I appreciate the wide variety of ways migraine disorder manifests in patients.

Jump to this post

I have not officially been diagnosed with migraine disorder (ie, I talked to my doctor but it’s rare enough that we did not seek further treatment), and migraines are not normal for me, though I have had a handful of migraines with auras in adulthood. Odors can give me headaches, and when my sinuses are “acting up” (which seems like all the time where I live now), I tend to experience some vertigo-type symptoms. I hadn’t really connected that to the air hunger since they don’t seem to occur at the same time. But I have noticed that both will happen more frequently when my ears seem to be full of fluid.

I talked to my chiropractor about this because it’s almost always better after an appointment there. I carry stress and anxiety in my shoulders and neck. When I am experiencing air hunger, I can usually feel like I get a better breath if I lean over, kind of like athletes stand after running. It’s almost as if the tension in my back isn’t allowing my chest to expand like I THINK it should.

Thank you for your thoughts on this! It’s interesting to consider these new thoughts and information.

REPLY
1 reply
Erika | @erikas | Feb 11, 2021
In reply to @sal51 "I am allergy and immunology. I see pts with a variety of breathing problems and this..." + (show)
@sal51

I am allergy and immunology. I see pts with a variety of breathing problems and this issue is not uncommon to see.
Many posters question a role for allergy.
Academically speaking, this condition is absolutely NOT allergy-related. Allergy affects your eyes and nose (itchy, sneezy, watery, congestion); beyond that, if you have asthma, it can trigger asthma but you will have evidence of asthma on evaluation.
Many talk about going to an allergist, having allergy testing, testing allergic, and receiving treatment.
In this case, the allergist is simply treating your test result, but not this particular problem. Patients who have this condition may have any number of conditions, including allergy but finding evidence of that condition does not imply causation.
In patients searching for a cause of mysterious symptoms, to be told you have evidence of a condition, such as allergy, in some sense can be relieving if you believe, "Finally, they have discovered the problem." You may even improve with treatment directed at that condition but that is likely more a function of believing the treatment will work (and I don't dismiss the importance otherwise).
Until proven otherwise, I believe this condition stems from the brain and some type of aberrant response of your respiratory drive. Because there are no tests for this, all the usual tests for shortness of breath come out normal.
There are various factors which likely affect this aberrant response, with emotion playing a huge role.
The question is how to fix that response that is going haywire and there is no one good answer.
I have wondered about a potential relationship to migraine disorder. That condition can manifest in a number of ways such as irritable bowel (the two diseases are likely related to the same disease manifesting in different parts of the body). In patients with migraine, they generally are hypersensitive to various stimuli that end up triggering symptoms- an example would be someone who reacts to odors with a headache or other symptoms. Migraine is a dysfunction of the nervous system.
Several posters mention symptoms that might be attributable to migraine, such a facial pressure, ear pain, etc. After reading the posts and knowing this condition is more common in females, I've wondered if this is not some odd manifestation of that condition.
I would be curious if any of the posters have been diagnosed with migraine disorder or if they have wondered if they might have it.
Indications of this condition might include "normal" migraines, IBS, other types of headaches including tension and sinus, as well as things like vertigo or odor sensitivity. If it might be related to that, that might suggest treatments targeting migraine could potentially have a role.
There is no evidence to support this idea, just something I've wondered about and I appreciate the wide variety of ways migraine disorder manifests in patients.

Jump to this post

@sal51 @bizzy12 @mcno @zoelife @kikiriki Welcome to Mayo Clinic Connect, a place to give and get support.

I'm wondering is anyone has a useful strategy in attempting to get the right diagnosis and treatment?

REPLY
1 reply
zoelife | @zoelife | Feb 11, 2021
In reply to @erikas "@sal51 @bizzy12 @mcno @zoelife @kikiriki Welcome to Mayo Clinic Connect, a place to give and get..." + (show)
@erikas

@sal51 @bizzy12 @mcno @zoelife @kikiriki Welcome to Mayo Clinic Connect, a place to give and get support.

I'm wondering is anyone has a useful strategy in attempting to get the right diagnosis and treatment?

Jump to this post

@erikas Something that has helped guide me is always staying tuned in to your body - to be aware of causes and effects. For example, a friend had a procedure take place in the last and noticed a new symptom appear immediately afterwards that only made sense it was a result of the procedure (as it came on at the same time as pain from the procedure).

Knowing the root cause and your body is always key. Then do your own research based on the cause and common side effects others have had and make a list for yourself.

Then once you have a guideline of possible scenarios (side effects), it is then I would seek testing at the Doctor. Right after tests are conducted, request images of the tests so you can do your own research comparing symbols often found in image studies of others who had a similar complication as that found in your research with your images.

This will not only help guide you on the right path, but help to confirm the Doctor is on the right path (if he/she makes a diagnosis that doesn’t feel accurate to you based on the root cause).

As for treatment, depending on the prognosis, if options are not given that provide promises for full recovery, researching alternative treatment options not given by the Doctor (such as stem cell treatments, etc) can help so you don’t feel like you have come up against a wall.

However, one thing I know is there is a God in heaven who has He ability to tear down walls and make a way of healing when there seems to be no way. He is the greatest Physician and Healer of all. 😊 Isaiah 53:5.

REPLY
Merry, Alumni Mentor | @merpreb | Feb 12, 2021
In reply to @mcno "I have not officially been diagnosed with migraine disorder (ie, I talked to my doctor but..." + (show)
@mcno

I have not officially been diagnosed with migraine disorder (ie, I talked to my doctor but it’s rare enough that we did not seek further treatment), and migraines are not normal for me, though I have had a handful of migraines with auras in adulthood. Odors can give me headaches, and when my sinuses are “acting up” (which seems like all the time where I live now), I tend to experience some vertigo-type symptoms. I hadn’t really connected that to the air hunger since they don’t seem to occur at the same time. But I have noticed that both will happen more frequently when my ears seem to be full of fluid.

I talked to my chiropractor about this because it’s almost always better after an appointment there. I carry stress and anxiety in my shoulders and neck. When I am experiencing air hunger, I can usually feel like I get a better breath if I lean over, kind of like athletes stand after running. It’s almost as if the tension in my back isn’t allowing my chest to expand like I THINK it should.

Thank you for your thoughts on this! It’s interesting to consider these new thoughts and information.

Jump to this post

@mcno- Welcome to Mayo Clinic Connect. Exercises to open your chest up are so beneficial. I can't tell you what a difference they have made to me. I am also a Migraine sufferer. I have them in batches with months in between. But I also have lung cancer.

This lady is no longer blogging but I find her exercises to be the best. Tell me what you think of them?

REPLY
1 reply
mcno | @mcno | Feb 12, 2021
In reply to @merpreb "@mcno- Welcome to Mayo Clinic Connect. Exercises to open your chest up are so beneficial. I..." + (show)
@merpreb

@mcno- Welcome to Mayo Clinic Connect. Exercises to open your chest up are so beneficial. I can't tell you what a difference they have made to me. I am also a Migraine sufferer. I have them in batches with months in between. But I also have lung cancer.

This lady is no longer blogging but I find her exercises to be the best. Tell me what you think of them?

Jump to this post

Thanks for the video! I did many of these exercises when I was in physical therapy for “weak back muscles.” I usually use longer or more intense workouts from fitnessblender.com (They have workouts that aren’t intense too!), but I can definitely see myself using this on busy/exhausting days. I do notice a difference when I workout but starting last summer, my new schedule (first year teacher in grad school) has made it difficult for me to find the time.

I was fine yesterday and then read through these posts and started having some mild air hunger. So I can see the psychological side of it. Ha!

I’m praying you are able to get the treatment you need for lung cancer and your migraines subside.

REPLY
1 reply
Merry, Alumni Mentor | @merpreb | Feb 12, 2021
In reply to @mcno "Thanks for the video! I did many of these exercises when I was in physical therapy..." + (show)
@mcno

Thanks for the video! I did many of these exercises when I was in physical therapy for “weak back muscles.” I usually use longer or more intense workouts from fitnessblender.com (They have workouts that aren’t intense too!), but I can definitely see myself using this on busy/exhausting days. I do notice a difference when I workout but starting last summer, my new schedule (first year teacher in grad school) has made it difficult for me to find the time.

I was fine yesterday and then read through these posts and started having some mild air hunger. So I can see the psychological side of it. Ha!

I’m praying you are able to get the treatment you need for lung cancer and your migraines subside.

Jump to this post

@mcno- Thank you. fitness blender can be very intense. But they're very good. Cathe Friedrich's videos will also work you out. The power of suggestions is pretty powerful Don't yawn around me! I've survived cancer for 23+ years. I have what is called Multifocal adenocarcinoma of the lungs. It is a very slow-growing cancer and I have had several over the years.

How long did it take for your sb to calm down yesterday? What are you studying?

REPLY
1 reply
mcno | @mcno | Feb 12, 2021
In reply to @merpreb "@mcno- Thank you. fitness blender can be very intense. But they're very good. Cathe Friedrich's videos..." + (show)
@merpreb

@mcno- Thank you. fitness blender can be very intense. But they're very good. Cathe Friedrich's videos will also work you out. The power of suggestions is pretty powerful Don't yawn around me! I've survived cancer for 23+ years. I have what is called Multifocal adenocarcinoma of the lungs. It is a very slow-growing cancer and I have had several over the years.

How long did it take for your sb to calm down yesterday? What are you studying?

Jump to this post

I made myself dismiss it pretty quickly by telling myself it was not real (at least this time) and that it was the suggestion. I also just tried to keep busy, which wasn’t hard since I had lesson plans to write! I’m getting a masters in education while taking all the state certification exams here (4!) so I have plenty to keep my mind busy but also plenty to cause anxiety.

REPLY
enyeart7680 | @enyeart7680 | Feb 12, 2021
In reply to @gabrielm "Thanks for the reply! I have explored the possibility of anxiety and stress, but I don't..." + (show)
@gabrielm

Thanks for the reply! I have explored the possibility of anxiety and stress, but I don't experience any of that, at least beyond the norm. I might have a stressed out day now and then, but I'm not a stressful person and am pretty easy-going. I don't have anxiety. The SOB is just always there. Always. Whether I'm at work, at home, stressed, not stressed, but stress for me is very uncommon. I have a low-stress job. So I'm not convinced it's that. So I still have no idea what it is; I'm looking into submitting my case to CrowdMed.

I'm doing alright, thank you for asking. I would say that over the past 6 months I have experienced periods of improvement from days to even weeks. Not 100%, but enough to where I didn't really notice it all day. Then I would have random bouts where it would get kind of bad, where I just can't get a deep breath, and when I do it doesn't last long before I'm desperately needing another. That would go on for a few days, and then it would get better again. So it's still up and down, and it's manageable but not normal at all. I still do exercise when I can, to an intensity that my breathing will allow- some weightlifting sessions allow me to lift a decent amount of weight with not as much rest in between, and other times I have to cut my sessions short after lifting light weights and having to rest for 5 minutes in between sets. So it all depends on the day I guess.

Jump to this post

I have exactly the same symptoms down to a T exactly. I’ve only been experiencing these things since November 2020. Nothing I do seems to make it feel any better, the doctor has no idea what’s wrong with me. Sometimes I freak out because I can’t take a deep breath I try to yawn but I can’t get enough air in my lungs I don’t have asthma I don’t smoke cigarettes I don’t have anything wrong with my heart or my lungs.

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1 reply
alexm1994 | @alexm1994 | Feb 15, 2021

This has come back for me after 5-6 months of it being non-existent. Again it's this constant need for a 'deep breath' but I can't regularly suffice it. I'm need to yawn or deep breath so often that my jaw / throat gets painful. The feeling makes my eyes tear up and my head feel a bit fuzzier than usual. It's so frustrating and requires me to regularly concentrate on my breathing. Again, I'm 100% sure I caught COVID in March 2020 and this appeared around 4-6 weeks after that - so I also worry it's an ongoing side-effect of COVID. I'm 26, workout regularly nothing excessive - just weight training 3-4 times a week and a HIIT cardio type session 1-2 times. But my breathing isn't problematic at all when I exercise. It's usually becomes more frequent and persistent after food, or lying on my back. But once it's there.... it doesn't go away.

I was put on medication last year for GERD, this also seemed to help a little. Anyone else in the same boat? Or does any of the above ring true? It's been back a week and already I'm getting concerned.

REPLY
1 reply
Merry, Alumni Mentor | @merpreb | Feb 15, 2021
In reply to @alexm1994 "This has come back for me after 5-6 months of it being non-existent. Again it's this..." + (show)
@alexm1994

This has come back for me after 5-6 months of it being non-existent. Again it's this constant need for a 'deep breath' but I can't regularly suffice it. I'm need to yawn or deep breath so often that my jaw / throat gets painful. The feeling makes my eyes tear up and my head feel a bit fuzzier than usual. It's so frustrating and requires me to regularly concentrate on my breathing. Again, I'm 100% sure I caught COVID in March 2020 and this appeared around 4-6 weeks after that - so I also worry it's an ongoing side-effect of COVID. I'm 26, workout regularly nothing excessive - just weight training 3-4 times a week and a HIIT cardio type session 1-2 times. But my breathing isn't problematic at all when I exercise. It's usually becomes more frequent and persistent after food, or lying on my back. But once it's there.... it doesn't go away.

I was put on medication last year for GERD, this also seemed to help a little. Anyone else in the same boat? Or does any of the above ring true? It's been back a week and already I'm getting concerned.

Jump to this post

@alexm1994 - This must be very frustrating for you. Have you had a COVID-19 test for antigens and antibodies? It probably will be worth your time.

https://www.mayoclinic.org/diseases-conditions/coronavirus/expert-answers/covid-antibody-tests/faq-20484429
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