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.

@tra4179

Hi! I recently (early August) had an inhalation incident at my job. I’m a welder/fabricator at a railroad company. I went into a “mock asthma attack” and pretty much hyperventilated. My face started turning blue, so my wife Allen’s the ambulance when I went home to use her inhaler to try and stop the wheezing from the fumes inhalation. When they sent me home, I was having the discussed SOB every few minutes. I wrote it up as just the over-exertion of my lungs and the inflammation due to the incident. They let me go back to work after the weekend (happened on a Friday). Well, ironically, I got hurt again that week (broke my hand), and have been off work for 3 months to heal. Well as I’m sure most people are aware, Workmans comp took their time getting my financials started and times got very rough. I should’ve mentioned earlier, the hyperventilation incident scared me to the point to where, for the first time in my life, I’ve developed anxiety and when my SOB starts, so does my anxiety. When my doctor told me I’d be off work for an undisclosed amount of time, I let myself develop depression. Now it’s constant SOB and it’s to the point to where some (unknown to me) muscle in the bottom of my throat feels like it’s almost swelled shut and I have to swallow a couple times to relieve it. I know it’s from the excessive deep breaths. I’ve googled and researched and I’m gonna go with the depression/anxiety diagnosis. I’m 43 and never had a mental disorder or any kind of issue. I’m not asking for answers I’m just looking, and saw your post and realized it’s the exact thing I’m going through. I’m glad to see that someone understands. Thank you for this.

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Wow @tra4179 I'm so sorry to hear you're going through all this. Have you seen anyone about the anxiety and depression? It sounds like that came about when all this started, and I'm thinking that talking to someone about the anxiety may help with the breathing issue. I too had anxiety and panic attacks when this was all new to me, but over time I've learned to manage the symptoms and so the anxiety went away. But dealing with the anxiety can also relieve the symptoms.

Did the inhaler help with the breathing issue and do you still use one now?

If possible, I suggest you get a pulse oximeter for your finger that you can measure your heart rate and oxygen levels at anytime to see if your symptoms correlate with low O2 levels. If that is the case, you should be able to get help for getting oxygen increased and that would help reduce the symptoms if it is indeed caused by the mock asthma attack.

Have doctors done any other exams, bloodwork, or other evaluation? @thomason made some good points in his comment especially about possible vocal chord paralysis

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@thomason

@tra4179, have you ever tried a Primatene Mist Inhaler? The inhalers are over-the counter and somewhat expensive--about $30.00. I realize you probably do not have asthma, but this great product saved my life when I had SOB attacks. In my case, because of having Covid twice and radiation for cancer in the throat, my vocal cords paralyzed. For over one year these attacks were getting worse, until a great ENT diagnosed the condition and performed a tracheotomy. Toward the end of that miserable year, I began using the inhaler. It helped me to breathe until the surgery could be scheduled. It was a lifesaver for sure. By the way, you can purchase them much cheaper sometimes on eBay. It would be worth a try until you can get a few different opinions as to what is causing your condition. Did you have Covid? It messed up people's vocal cords in some instances, which can cause SOB. An ENT (or two) would do a nasal scoping to determine if they are functioning properly. To ease your mind, if the vocal cords are partially paralyzed, you probably would not need a tracheotomy. There are many surgical techniques to help with vocal cord issues. I cannot have surgery to correct the vocal cord paralysis, because radiation changes the tissue, where it could become necrotic. Best wishes to you.

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My friend I hope you get better! Yes they gave me an inhaler and no it never worked. The only thing that actually helped me was Hydroxyzine but I could really only take it night bc it would make me so sleepy. I’m just gonna have to bite the bullet and go have it checked. Thank you for your comments and ideas. I am definitely worried but hope it’ll all work out. Thank you again

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Hey, I haven't updated in almost a year but come here almost every week to look at all the responses to see if anyone has found a cure. I have nothing much to share, saw a GI doc earlier this year who suggested that this breathing isn't connected to some underlying GI issue. The doctor wanted to do an endoscopy, which is scheduled for sometime next year. Was told that in the meantime I should go see the pulmonologist again, to make sure nothing is wrong with my lungs. Maybe breathing exercises is the key to all this (like you mentioned in your post), I frequent Reddit to find other people who also suffer from this issue, and a lot of people see a lot of success seeing a respiratory therapist.

Still disappointed that there is no label to put on this condition.

Anyway, hope you all have another great holiday season!

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@itsnotanxiety

Hey, I haven't updated in almost a year but come here almost every week to look at all the responses to see if anyone has found a cure. I have nothing much to share, saw a GI doc earlier this year who suggested that this breathing isn't connected to some underlying GI issue. The doctor wanted to do an endoscopy, which is scheduled for sometime next year. Was told that in the meantime I should go see the pulmonologist again, to make sure nothing is wrong with my lungs. Maybe breathing exercises is the key to all this (like you mentioned in your post), I frequent Reddit to find other people who also suffer from this issue, and a lot of people see a lot of success seeing a respiratory therapist.

Still disappointed that there is no label to put on this condition.

Anyway, hope you all have another great holiday season!

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Hey @itsnotanxiety, thanks for sharing. I am sure very many people on this forum appreciate periodic updates, whatever it may be. The endoscopy may reveal something like it did for me (inflamed esophagus), which I think somewhat contributed to my breathing issue. But there is certainly no harm in trying breathing exercises to see what may help reduce your symptoms. Was there a particular set of exercises you have tried or looked into yet?

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@gabrielm

Hopefully they help get some answers @tonyagregg. I don't have answers yet, and been trying to find some since 2012. It's manageable and more stable, but I'd still like to get to the bottom of it so it doesn't get worse again. Let us know if you find out anything.

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Hi Gabe,
I just had to reach out to you as my story might be very similar to yours.
I have been suffering from the inability to take a deep satisfying breath, on and off, since 2000. Like you I have been through a barrage of test, and my lung functions (at least at that time) were all normal. Yet, on most days, I feel like I am breathing through a sponge that's lodged in my throat, and am forced to take a deep breath every 7 or 8th breath. However, that satisfaction of that deep breath seems to just stop at 80% and I feel like I am starved for oxygen. Now, the most paradoxical thing is, I have ran marathons, and even an Ironman, and these symptoms have never really prevented me from training, and or racing hard. In fact, the opposite seemed to be true, and my breathing would actually improve, even after hard and long races. For a while there, there was a decent stretch of years, where I thought I have beat my breathing issue, as it felt like it was completely gone. It's also worth noting that I was continually running at that time (5-6) days of training a week year after year. Fast forward to 2019 and my 1st and only bout with Covid, it felt like the breathing issue arose again, and It is now back. Like you have mentioned in your initial statement, there is no rhyme or reason when it shows up. It can be high humidity, or low, cold or a hot day, rain or drought. On some days I can breath just fine, and on others (like today) I am suffering. I feel like I am fighting to breath, though if I were to measure my oxygen saturation, I am almost certain I would be close to 100%. I am at a complete loss, and am now at the point where I feel like I need go see a pulmonologist again. I always wonder if the test they performed on my 20 years ago, were just not as sensitive of the tests they may have currently. I guess I'll find out soon here. On the flip side, I am also concerned that if they do find something and are unable to fix it, that I'll be in a worse situation due to added stress of knowing what it is, but being unable to do anything against it. Oy vey... these double edge swords aren't fun. Anywho... while I await my appt, I am going to try the breathing exercise you have mentioned. I feel like I have done that already unknowing that it was an actual thing, but I do feel like it helped. Though I no longer run, I do play pickleball almost daily 4-5 hours a day. And when I say play, I play hard and active. When I am in it, my breathing, just like with running, doesn't really have any negative effects. I still feel like I need that deep satisfying breath here and there, but even if I don't get it, I am still okay to play, if that makes any sense. Needless to say...this is all so very frustrating.

REPLY

Hello fellow sufferers, I wrote a couple months back but could not find my response to say which number to refer to, quick recap. I've suffered from the "mysterious Shortness Of Breath" since the age of 10, And finally found out my answer, maybe you guys should get this checked if you have not yet. I went to a gastroenterologist, I explained my symptoms this was the 2nd time going to one, I do not know why they did not just simply check this from the beginning, I've gone to the hospital various times thinking I was going to die. There is an acid from the stomach that comes up And sits in the throat making me have trouble breathing, its called LPR (Laryngopharyngeal reflux), before you continue to look for a way out please get this out the way to make sure its not the same thing. they should put a long thing with a camera down your throat, the doctor told my mother to record and I could really see the acid, I was put on pantoprazole but did not work, I consulted a doctor in Mexico through cellphone And he sent me 3 types of medicine I take it 3 times a day each, I hope the American doctor does not get mad, but for some weird reason Mexican meds always seem to be more effective, its just a pain getting them here. I have definitely been better, it's still there but can definitely say I wish to get better soon, And I wish you guys do as well. please go to a gastroenterologist to rule acids out, it's insane how bad it took over my life, I wrote here before and I was very desperate to find an answer, please check it out. the main trigger is food, almost everything, even salad. I was sent to physiologist And taking Xanax but they never checked acids once, just ruled me out as crazy, I am 18 has been a very sad And frustrating situation. please rule out acids. hope everyone gets better.

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Guys please make sure the gastro puts a long camera thing down your throat, I was awake, but I do know some sleep you, please do not settle for just opening your mouth. The first gastro just told me "open wide" said nothing blocking airways And gave me an allergy spray called Flonase it has another name but that's also what it's called. please rule LPR out.

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@goran

Hi Gabe,
I just had to reach out to you as my story might be very similar to yours.
I have been suffering from the inability to take a deep satisfying breath, on and off, since 2000. Like you I have been through a barrage of test, and my lung functions (at least at that time) were all normal. Yet, on most days, I feel like I am breathing through a sponge that's lodged in my throat, and am forced to take a deep breath every 7 or 8th breath. However, that satisfaction of that deep breath seems to just stop at 80% and I feel like I am starved for oxygen. Now, the most paradoxical thing is, I have ran marathons, and even an Ironman, and these symptoms have never really prevented me from training, and or racing hard. In fact, the opposite seemed to be true, and my breathing would actually improve, even after hard and long races. For a while there, there was a decent stretch of years, where I thought I have beat my breathing issue, as it felt like it was completely gone. It's also worth noting that I was continually running at that time (5-6) days of training a week year after year. Fast forward to 2019 and my 1st and only bout with Covid, it felt like the breathing issue arose again, and It is now back. Like you have mentioned in your initial statement, there is no rhyme or reason when it shows up. It can be high humidity, or low, cold or a hot day, rain or drought. On some days I can breath just fine, and on others (like today) I am suffering. I feel like I am fighting to breath, though if I were to measure my oxygen saturation, I am almost certain I would be close to 100%. I am at a complete loss, and am now at the point where I feel like I need go see a pulmonologist again. I always wonder if the test they performed on my 20 years ago, were just not as sensitive of the tests they may have currently. I guess I'll find out soon here. On the flip side, I am also concerned that if they do find something and are unable to fix it, that I'll be in a worse situation due to added stress of knowing what it is, but being unable to do anything against it. Oy vey... these double edge swords aren't fun. Anywho... while I await my appt, I am going to try the breathing exercise you have mentioned. I feel like I have done that already unknowing that it was an actual thing, but I do feel like it helped. Though I no longer run, I do play pickleball almost daily 4-5 hours a day. And when I say play, I play hard and active. When I am in it, my breathing, just like with running, doesn't really have any negative effects. I still feel like I need that deep satisfying breath here and there, but even if I don't get it, I am still okay to play, if that makes any sense. Needless to say...this is all so very frustrating.

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hi Goran. do u have a pulse oximeter to actually check ur PO. I've had the extreme shortness of breath just moving around in our one story house. when I was sitting inbetween activities I would desat to hi 80s. even happened at pulmonologist office with no concern from them. I finally read all the hard copies of my chest xrays since 2016 and thecommon thread was some mild atelectasis in the base which has only increased thru the years. my PFTs are normal..... after using an 02 ring i am now using 02 24/7 as it and sleep study showed desats to 79% and also 80s during the day. since I started 02 I can move about the house, go up stairs, ride my bike and walk the dog. I have more energy and my BP has come down too! it's so frustrating when drs aren't listening or following up on things.

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@goran

Hi Gabe,
I just had to reach out to you as my story might be very similar to yours.
I have been suffering from the inability to take a deep satisfying breath, on and off, since 2000. Like you I have been through a barrage of test, and my lung functions (at least at that time) were all normal. Yet, on most days, I feel like I am breathing through a sponge that's lodged in my throat, and am forced to take a deep breath every 7 or 8th breath. However, that satisfaction of that deep breath seems to just stop at 80% and I feel like I am starved for oxygen. Now, the most paradoxical thing is, I have ran marathons, and even an Ironman, and these symptoms have never really prevented me from training, and or racing hard. In fact, the opposite seemed to be true, and my breathing would actually improve, even after hard and long races. For a while there, there was a decent stretch of years, where I thought I have beat my breathing issue, as it felt like it was completely gone. It's also worth noting that I was continually running at that time (5-6) days of training a week year after year. Fast forward to 2019 and my 1st and only bout with Covid, it felt like the breathing issue arose again, and It is now back. Like you have mentioned in your initial statement, there is no rhyme or reason when it shows up. It can be high humidity, or low, cold or a hot day, rain or drought. On some days I can breath just fine, and on others (like today) I am suffering. I feel like I am fighting to breath, though if I were to measure my oxygen saturation, I am almost certain I would be close to 100%. I am at a complete loss, and am now at the point where I feel like I need go see a pulmonologist again. I always wonder if the test they performed on my 20 years ago, were just not as sensitive of the tests they may have currently. I guess I'll find out soon here. On the flip side, I am also concerned that if they do find something and are unable to fix it, that I'll be in a worse situation due to added stress of knowing what it is, but being unable to do anything against it. Oy vey... these double edge swords aren't fun. Anywho... while I await my appt, I am going to try the breathing exercise you have mentioned. I feel like I have done that already unknowing that it was an actual thing, but I do feel like it helped. Though I no longer run, I do play pickleball almost daily 4-5 hours a day. And when I say play, I play hard and active. When I am in it, my breathing, just like with running, doesn't really have any negative effects. I still feel like I need that deep satisfying breath here and there, but even if I don't get it, I am still okay to play, if that makes any sense. Needless to say...this is all so very frustrating.

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Hi @goran, Yup sounds pretty similar to what I went through. Though now I seem to have the symptoms at bay for the most part. It's always there to some degree but it's fairly mild and manageable from day to day.

When you exercise it seems you push yourself pretty hard. At the end of 2017, I was also running pretty hard and had an episode where I couldn't catch a deep breath while running and it has remained ever since. So now I do mild to moderate exercise with controlled nasal breathing.

Do you breathe through your mouth a lot? Whether during exercise, at night, while resting, etc. I had to learn to nasal breathe all throughout the day and during any activity. When this all started for me, my O2 levels were also 100%. When I realized I was overbreathing, breathing through my mouth and trying hard to get deep breaths, I surmised that this reflected in my O2 levels when they read 100%. When I learned to slow and calm my breathing and learned nasal breathing, my O2 levels dropped to around 93-95% which is normal for me.

Are you aware of any other health issues or anything going on such as GI issues, allergies, nutrient deficiencies, etc.?

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@edgarc

Hello fellow sufferers, I wrote a couple months back but could not find my response to say which number to refer to, quick recap. I've suffered from the "mysterious Shortness Of Breath" since the age of 10, And finally found out my answer, maybe you guys should get this checked if you have not yet. I went to a gastroenterologist, I explained my symptoms this was the 2nd time going to one, I do not know why they did not just simply check this from the beginning, I've gone to the hospital various times thinking I was going to die. There is an acid from the stomach that comes up And sits in the throat making me have trouble breathing, its called LPR (Laryngopharyngeal reflux), before you continue to look for a way out please get this out the way to make sure its not the same thing. they should put a long thing with a camera down your throat, the doctor told my mother to record and I could really see the acid, I was put on pantoprazole but did not work, I consulted a doctor in Mexico through cellphone And he sent me 3 types of medicine I take it 3 times a day each, I hope the American doctor does not get mad, but for some weird reason Mexican meds always seem to be more effective, its just a pain getting them here. I have definitely been better, it's still there but can definitely say I wish to get better soon, And I wish you guys do as well. please go to a gastroenterologist to rule acids out, it's insane how bad it took over my life, I wrote here before and I was very desperate to find an answer, please check it out. the main trigger is food, almost everything, even salad. I was sent to physiologist And taking Xanax but they never checked acids once, just ruled me out as crazy, I am 18 has been a very sad And frustrating situation. please rule out acids. hope everyone gets better.

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@edgarc, thank you for sharing! I am glad that you are improving and have found what effects you. Knowing this, you can work in the cause and continue to improve. I'm sure many people will benefit from your story and seek to find if it's GI related. I too had an endoscopy done years ago and found I had GERD so I continue to treat that daily.

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