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.

@davek

I posted to this issue a few weeks ago. Same problem as all you. I randomly can’t take a deep breath. GP, Pulminary, Cardio docs all day I’m fine. I cannot accept that it’s anxiety. About a week ago I stopped taking my sleeping meds (Lunesta) and within two days I was completely back to normal but it lasted just a few days and now it’s back. Could it be allergies?

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Hi @davek, allergies can certainly exacerbate the breathing problem, as mine do. But at one point, I didn't have allergies but still had shortness of breath. If you suspect allergies, it definitely doesn't hurt to get tested and if the allergies are severe enough, you could get allergy shots or at least get on Flonase or some other nasal spray or allergy medication.

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@helena4000

I don't understand why doctors don't rule all that stuff out first and then consider anxiety.

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@helena4000 I think it's because most general doctors only know about common ailments people have; common cold, allergies, injuries, etc. When it comes to something mysterious, they don't want to dig deeper to help find a cause because they just want to help conditions that they have general knowledge of. Specialists can definitely help more, but only in that one field that they're in. I know how it is though; my doctor barely ruled out a couple of things then just said anxiety. Here we are, being our own doctors!

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@gabrielm

@helena4000 I think it's because most general doctors only know about common ailments people have; common cold, allergies, injuries, etc. When it comes to something mysterious, they don't want to dig deeper to help find a cause because they just want to help conditions that they have general knowledge of. Specialists can definitely help more, but only in that one field that they're in. I know how it is though; my doctor barely ruled out a couple of things then just said anxiety. Here we are, being our own doctors!

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I think that's totally fine that they don't know everything. But they can't pretend that they know the answer when they don't. Pericarditis is something that can get rather serious if it's just left untreated. And I've had an entire month of it not being treated correctly. When my cardiologist told my doctor about pericarditis, my doctor even told me he'd have to look it up because he didn't know much about it. And then today, my doctor tells me that he doesn't have any work restrictions for me which I thought was odd. Every reference I've seen has said that you need to rest with this condition. And now tomorrow I have to just go back to work and I feel like crud. We have to be our own doctors, and keep pushing for them to find out what's wrong.

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@helena4000

I think that's totally fine that they don't know everything. But they can't pretend that they know the answer when they don't. Pericarditis is something that can get rather serious if it's just left untreated. And I've had an entire month of it not being treated correctly. When my cardiologist told my doctor about pericarditis, my doctor even told me he'd have to look it up because he didn't know much about it. And then today, my doctor tells me that he doesn't have any work restrictions for me which I thought was odd. Every reference I've seen has said that you need to rest with this condition. And now tomorrow I have to just go back to work and I feel like crud. We have to be our own doctors, and keep pushing for them to find out what's wrong.

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Yes, exactly @helena4000. Hopefully, we will all help each other find some answers through this thread!

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@alureon

I've been reading through this thread for a few days now. After tons of research on the internet I've really found nothing that matches my symptoms as succinctly as the mysterious condition described by so many of you here. I've been seeking answers for about a month now, but my condition began long ago. I'd say I first noticed something was off with my breathing about 2 years ago, and ever since then it's come and gone with varying levels of severity. However, this time around it was seriously exacerbated by a cold, and that was a little over a month ago. I've been struggling to get that deep breath ever since. Some days are better than others. A lot of forced yawning! I've found that Buteyuko breathing to be helpful, and I've also tried the vitamin b12, and started taking a PPI although I haven't noticed much heartburn. The doctor has me on symbicort, Ventolin, singular, and an anti anxiety. I know this isn't purely anxiety because even after taking the meds, I still can't get a deep breath - even though I'm totally relaxed and all my problems seem unimportant. The other meds seem to just barely help, but after a month they certainly have not cured me of this awful condition.

I had a pulmonary function test last Friday and I'm waiting to hear the results. My fear is that like many of you, the test results will be normal, and I'll be left with more questions than answers.

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@alureon I have thoracic outlet syndrome which causes a physical issue with breathing and half of my chest doesn't expand properly with the tightness in my neck and chest from TOS. Most doctors are not familiar with TOS and think it's rare but it's not. It is misunderstood. Physical therapy can help. Here are some links.
https://trainingandrehabilitation.com/how-truly-treat-thoracic-outlet-syndrome/
https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988

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Hi @gabrielm,
Thank you so much for your post. Myself and my younger brother have both dealt with this same issue for years and both of us have come to a shaky conclusion or hypothesis. I'll give you my story and his as briefly as I can.

Mine started when I was in high school and working as a lifeguard. I got sick and had a cough for at least a year. During that entire time, I had terrible shortness of breath. It was so bad that I was prescribed a medicated inhaler from the doctor to help with the SOB. I don't think it helped very much and seemed to stick around forever (he seemed to think I had "temporary asthma"). I learned several years later that another lifeguard had SOB for about a year during the same time that I did, and she believed it was because there was an Ozone leak right near the lifeguard stand where we sat for several hours everyday. Who knows if that had something to do with it or not.
Fast forward about 10 years and I got a new and very stressful job. As I was coming to a very crazy time in my job, I began getting a shortness of breath again. It was so bad that no matter what I was or wasn't thinking about, no matter what sort of breathing exercises I did, or cardio exercise I did, I could never get that "deep breath satisfaction" of feeling satiated. This was all compounded by coinciding faithfulness issues on my husband's part and I started having panic attacks. This went on for several months. I was convinced it was anxiety but over the past year I have become less convinced of that because I no longer have a stressful job and my marriage is great. I am not at all an anxious person and yet I still (three years later) occasionally, for a day or so, and sometimes for a week or two, have SOB. I'm currently suffering with it and it all started right after finishing a morning run this past Monday.

My brother's issue started because he had undiagnosed mono and was powerlifting at the same time. He believes he injured his throat while lifting and that compounded on top being ill and over-prescribed penicillin for a "sinus infection" (which he didn't have--it was the mono). He went through a similar flurry of doctor's visits like you, and everyone had a different theory. Most told him the SOB was anxiety, but he wouldn't believe that. Finally he found a doctor who mentioned he could have vocal chord dysfunction. The little bit he has told me (I haven't read about this myself) is that a lot of athletes get this from being injured somehow in the neck/throat area (like football players). The vocal chords and throat are damaged, and from that point on, the chords randomly "act up" and the individual feels like they can't breath and experience SOB. There apparently is not really a cure for this issue.

All that is to say, I wonder if your acid-reflux (or some other incident in your past) has damaged your throat and now you lungs/throat area is "oversensitive" and easily irritated by external or internal stimuli. I wonder that for myself--if past damage to my lungs has basically made them incredibly sensitive and they randomly "overreact" to stimuli by "thinking" that they aren't getting enough oxygen. Basically, they were damaged in such a way that they (or a part of your brain) can't tell if they are supplying your body with enough oxygen. Like I said at the beginning of the post, this is a shaky hypothesis based on my own experiences and things I have read online and not based on my own medical knowledge past college level biology and anatomy. Maybe the SOB is some sort of neurological issue tied to our physical lungs/throat/brain area that is out of whack and no longer in alignment.

I hope mine and my brother's stories are somewhat helpful in your search for answers.

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@fayefaraday

Hi @gabrielm,
Thank you so much for your post. Myself and my younger brother have both dealt with this same issue for years and both of us have come to a shaky conclusion or hypothesis. I'll give you my story and his as briefly as I can.

Mine started when I was in high school and working as a lifeguard. I got sick and had a cough for at least a year. During that entire time, I had terrible shortness of breath. It was so bad that I was prescribed a medicated inhaler from the doctor to help with the SOB. I don't think it helped very much and seemed to stick around forever (he seemed to think I had "temporary asthma"). I learned several years later that another lifeguard had SOB for about a year during the same time that I did, and she believed it was because there was an Ozone leak right near the lifeguard stand where we sat for several hours everyday. Who knows if that had something to do with it or not.
Fast forward about 10 years and I got a new and very stressful job. As I was coming to a very crazy time in my job, I began getting a shortness of breath again. It was so bad that no matter what I was or wasn't thinking about, no matter what sort of breathing exercises I did, or cardio exercise I did, I could never get that "deep breath satisfaction" of feeling satiated. This was all compounded by coinciding faithfulness issues on my husband's part and I started having panic attacks. This went on for several months. I was convinced it was anxiety but over the past year I have become less convinced of that because I no longer have a stressful job and my marriage is great. I am not at all an anxious person and yet I still (three years later) occasionally, for a day or so, and sometimes for a week or two, have SOB. I'm currently suffering with it and it all started right after finishing a morning run this past Monday.

My brother's issue started because he had undiagnosed mono and was powerlifting at the same time. He believes he injured his throat while lifting and that compounded on top being ill and over-prescribed penicillin for a "sinus infection" (which he didn't have--it was the mono). He went through a similar flurry of doctor's visits like you, and everyone had a different theory. Most told him the SOB was anxiety, but he wouldn't believe that. Finally he found a doctor who mentioned he could have vocal chord dysfunction. The little bit he has told me (I haven't read about this myself) is that a lot of athletes get this from being injured somehow in the neck/throat area (like football players). The vocal chords and throat are damaged, and from that point on, the chords randomly "act up" and the individual feels like they can't breath and experience SOB. There apparently is not really a cure for this issue.

All that is to say, I wonder if your acid-reflux (or some other incident in your past) has damaged your throat and now you lungs/throat area is "oversensitive" and easily irritated by external or internal stimuli. I wonder that for myself--if past damage to my lungs has basically made them incredibly sensitive and they randomly "overreact" to stimuli by "thinking" that they aren't getting enough oxygen. Basically, they were damaged in such a way that they (or a part of your brain) can't tell if they are supplying your body with enough oxygen. Like I said at the beginning of the post, this is a shaky hypothesis based on my own experiences and things I have read online and not based on my own medical knowledge past college level biology and anatomy. Maybe the SOB is some sort of neurological issue tied to our physical lungs/throat/brain area that is out of whack and no longer in alignment.

I hope mine and my brother's stories are somewhat helpful in your search for answers.

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@fayefaraday Thank you for posting this. This does give me things to think about. I have considered the possibility of vocal chord dysfunction, but didn't experience any of the other symptoms. I tried the exercises that are supposed to help with VCD, but they didn't help so assumed that I didn't have it. But your theory about have oversensitive lungs or throat is certainly viable as I have had damage to my esophagus due to GERD. Thank you for the post!

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I have shortness of breath also, but I know the reason for mine--growing up in a smoking household, repeated bronchitis, and smoke inhalation four years ago. I have the same symptoms as you though. I never can get a full lung full of air. I have hiked up a steep hill for two days in a row now, and that helps for a little bit, but the next morning my SOB is back and I feel oxygen starved. The big deal for me though is that on 3/8 my heart went crazy, like it couldn't get enough oxygen, and called the paramedics and wound up in the ER where I was diagnosed with atrial fibrillation.
Also, you didn't mention if you coughed up phlegm. I cough up phlegm several times a day and sometimes it has tinges of blood in it.

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@merpreb

@alureon - Good morning and welcome to Mayo Connect. I am a volunteer mentor for Mayo Connect and have a history of 22+ years of lung cancers, with COPD and Emphysema. It's very scary feeling when you can't seem to catch your breath. Anxiety is a huge factor and so are a few more things. When there is shortness of breath your whole body tenses up, so in effect you are tense and breathing is more difficult. You may not realize it at the time. Also check to make sure that you are using you're inhalers correctly. You have 2 good ones. The best result is with a spacer and they can be purchased through the drug store and maybe your dr.
here is boring but great video that shows what to do. https://www.youtube.com/watch?v=hCAsW7OM9Ns&t=15s
I hope that your breathing test will tell you some answers.
Surprisingly enough you can have "a silent gerd". https://www.webmd.com/heartburn-gerd/guide/laryngopharyngeal-reflux-silent-reflux#1- this explains it.

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@merpreb Thanks. The result I got back from the breathing test was "mild restriction" and they told me to keep my appointment with the pulmonologist, but that's still pretty far away. Until then all I can do is keep taking my inhalers and hanging out in support groups like this one.

@chines118 That makes sense. I feel like my difficulty is with inhaling, but it's possible that it's actually because my lungs can't exhale properly. I don't know.

@davek Well I'm on the anti-anxiety medication but still can't get a deep breath lol, so I really don't think it's anxiety. And yeah, like you I went two days where I could breathe pretty good. I was hoping I was cured! Nope, it started to get slowly worse last night and sure as the sun shines, it has returned today lol. Already taken my albuterol....it's all I can do. It's possible it's allergy-related.

@jenniferhunter Hmm I've never heard of that before. I'm sure that makes it a very easy condition for doctors to overlook.

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@catmom777

I have shortness of breath also, but I know the reason for mine--growing up in a smoking household, repeated bronchitis, and smoke inhalation four years ago. I have the same symptoms as you though. I never can get a full lung full of air. I have hiked up a steep hill for two days in a row now, and that helps for a little bit, but the next morning my SOB is back and I feel oxygen starved. The big deal for me though is that on 3/8 my heart went crazy, like it couldn't get enough oxygen, and called the paramedics and wound up in the ER where I was diagnosed with atrial fibrillation.
Also, you didn't mention if you coughed up phlegm. I cough up phlegm several times a day and sometimes it has tinges of blood in it.

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@catmom777 Coughing up blood in your phlegm is a symptom of pneumonia which will also cause shortness of breath and a rapid heartbeat. I sent my dad to the emergency room when this happened many times and he would be treated with antibiotics. If this is happening to you, it would be best to have it checked out. Your doctor is the best resource on this, and coughing up blood is not normal, so you should consult your doctor. Allergies cause a lot of phlegm too, and I've had trouble with that, but I made changes with my air filter at home so it blows right on me at night and it helped a lot. This made a huge difference for me because my cats were triggering my asthma. We can coexist now, and I can breathe because of the precautions I'm taking. We are most vulnerable at night because it traps phlegm since we are not moving around. If you also have allergies, getting them under control will help your heart.

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