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.

This is my exact issue along with every time I drink water I get phlegm and my ribs always hurt and my nose always fills up

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@amirreza

My symptoms have improved slightly with the control of stomach problems. I recently found out I have had silent reflux for a long time. I haven't done many tests for my stomach yet, but I plan to do it. But before that, I went to several ENT specialists and the photos of my larynx always showed stomach acid, but they confirmed the health of my larynx. Some of them suggested that I go to a speech therapist. I think it may be the main problem of the stomach that has disturbed the diaphragm, but maybe some speech therapist techniques can help. I also take anti-allergy pills and a history of I have allergies, but my lungs are completely healthy. I have little suspicion of laryngeal problems. A healthy voice is a sign of laryngeal health. Do you have a normal voice?

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I do have a normal voice, but I do a lot of throat clearing which might indicate at least some level of vocal chord issue. If you go to a speech therapist, let us know how it goes. Curious to see how that might help. Does the silent reflux affect your voice, and do you have to clear your throat often?

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@srshealthy0401

Hi, I also am hearing an acidic ph is a problem, not only for osteoporosis but chronic inflammation and cancer. That means no or very little coffee, no soda, very little red meat, etc. It is such a great alternative to the current and probably future osteoporosis drugs. I follow Dr. Mark Hyman's https://drhyman.com/blog/category/podcasts/. I would love to hear if you have other sources, i.e., saveourbones, etc?

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@srshealthy0401 thanks for the resource! You also might want to share on the osteoperosis forum. I am sure many would find the resource very helpful! https://connect.mayoclinic.org/discussion/hi-im-new-to-the-site-and-am-interested-in-treating-osteoperosis/

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@sherr

This is my exact issue along with every time I drink water I get phlegm and my ribs always hurt and my nose always fills up

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Hi @sher, welcome to the forum. Have you seen a doctor yet about these issue? How long have you had symptoms?

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@sprucy11

Gabe, I think I am having the same problem as you. I am a 29 year old female and I am taking no medications. I had been experiencing palpitations and chest pain for about a year so I went to the PCP in January and they did an EKG. It showed an abnormality and I ended up at a cardiologist and they did a full work up on me and everything came back fine. I decided to see a pulmonologist (and this was before I noticed my breathing issue) and the PFT was normal, no asthma, no obstruction. So ever since then I don't know if I just became hyperaware of my breathing but I am constantly taking deep satisfying breaths. I can go a minute or two without, but sometimes I need to 30 seconds later. I notice I do this more when I am at work, or sitting around being lazy. I had a follow up with the pulmonologist and I described the symptoms to her, and she said that deep breathing isn't bad for the lungs. I've done a lot of googling on this and everything I read doesn't show any negative affect this can have on my lungs/heart. It is extremely frustrating and worrisome that I have this frequent urge to inhale deeply. I did read somewhere that it's normal for people to take in a deep breath every 5 minutes or so which is actually very healthy and important for the lungs. I have tried the different breathing methods and they don't really work long term for me. I also want to mention I was diagnosed with LPR by an ENT a year ago, my esophagus was enflamed and I felt like I was getting food stuck in my throat all the time. I went for a second opinion a few months later and there was no inflammation and I was told that a lot of dr's diagnose LPR when they are not sure what the problem really is. I guess that could be the cause but I really don't think it is. But like you, I've had lots of tests done and there was no obvious problem. I can do cardio (I have an airbike) for an hour and not even be out of breath. I still have to take in deep breaths, but less of them when I am working out. Let me know if you have any new information so we can get to the bottom of this!

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Hey @sprucy11, sorry that you're experiencing this like many of us are, but glad you found the forum in your search for answers. I was 27 when the issue first came about for me. It is certainly normal for people to take deep breaths, but can be an issue if done too much like when someone is hyperventilating. I assume your O2 levels have been normal? Interestingly, when I went to the ER about 7 or 8 years ago when this started for me, my O2 levels were 100% indicating hyperventilation. My normal O2 is around 94%.

What breathing methods have you tried? I have had success with the Buteyko method, but you do have to stick with it and do the exercises at least twice a day, and I still do some level of the method almost on a daily basis which has kept symptoms under control.

I know your frustration about having the urge to inhale deeply frequently. Have you been checked for any GI issues, like GERD, general acid reflux, etc.? If it's any comfort, I would agree that the deep breathing itself doesn't have a negative effect on the heart or lungs unless there is some specific condition there, so whenever I had bad episodes I would tell myself that I'm going to be ok and that it won't kill me. That seemed to help calm me down a bit. Have you been treated for the LPR?

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@gabrielm

Hey @sprucy11, sorry that you're experiencing this like many of us are, but glad you found the forum in your search for answers. I was 27 when the issue first came about for me. It is certainly normal for people to take deep breaths, but can be an issue if done too much like when someone is hyperventilating. I assume your O2 levels have been normal? Interestingly, when I went to the ER about 7 or 8 years ago when this started for me, my O2 levels were 100% indicating hyperventilation. My normal O2 is around 94%.

What breathing methods have you tried? I have had success with the Buteyko method, but you do have to stick with it and do the exercises at least twice a day, and I still do some level of the method almost on a daily basis which has kept symptoms under control.

I know your frustration about having the urge to inhale deeply frequently. Have you been checked for any GI issues, like GERD, general acid reflux, etc.? If it's any comfort, I would agree that the deep breathing itself doesn't have a negative effect on the heart or lungs unless there is some specific condition there, so whenever I had bad episodes I would tell myself that I'm going to be ok and that it won't kill me. That seemed to help calm me down a bit. Have you been treated for the LPR?

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I purchased a pulse oximeter and it showed my O2 levels were in the 97-99% range. Is that too high? If so do you have any suggestions on how I can lower it?

I have tried the Buteyko method a couple times, but it didn't really give me any long term relief so I kinda gave up. If you're saying it works then I guess I will put a little effort in and keep trying.

When I was diagnosed with LPR, he gave me "magic mouthwash" to drink and that didn't really do anything. I did get a second opinion a few months later and that doctor couldn't confirm I had LPR. So I am not really sure what to think, when I went to the ENT that diagnosed me my esophagus was really inflamed and I had the feeling like food was stuck. No growths or tumors were found.

I never even noticed I had this shortness of breath issue till about a year later when I started going to the cardiologist, and then the pulmonologist. While I was having tests done, I was worried I may have pulmonary hypertension, and that could've caused me to have anxiety and then cause me to hyperventilate. But I don't have pulmonary hypertension, and my heart is fine, so I don't know why I still do this.

Maybe its a tick that I've developed from going to doctors and being under a lot of stress. Even though my life isn't stressful at the moment, it's changed me perhaps. Not sure. And I don't know if this is something I've been doing my whole life and just noticed in the past year. I have no answers...

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@sprucy11

I purchased a pulse oximeter and it showed my O2 levels were in the 97-99% range. Is that too high? If so do you have any suggestions on how I can lower it?

I have tried the Buteyko method a couple times, but it didn't really give me any long term relief so I kinda gave up. If you're saying it works then I guess I will put a little effort in and keep trying.

When I was diagnosed with LPR, he gave me "magic mouthwash" to drink and that didn't really do anything. I did get a second opinion a few months later and that doctor couldn't confirm I had LPR. So I am not really sure what to think, when I went to the ENT that diagnosed me my esophagus was really inflamed and I had the feeling like food was stuck. No growths or tumors were found.

I never even noticed I had this shortness of breath issue till about a year later when I started going to the cardiologist, and then the pulmonologist. While I was having tests done, I was worried I may have pulmonary hypertension, and that could've caused me to have anxiety and then cause me to hyperventilate. But I don't have pulmonary hypertension, and my heart is fine, so I don't know why I still do this.

Maybe its a tick that I've developed from going to doctors and being under a lot of stress. Even though my life isn't stressful at the moment, it's changed me perhaps. Not sure. And I don't know if this is something I've been doing my whole life and just noticed in the past year. I have no answers...

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I wouldn't know if your O2 levels are too high or not, but in my case I knew 100% was high because normal for someone living in my area at this higher elevation is low to mid 90s. But the way I brought mine down was through the frequent breath hold exercises to slightly increase CO2 levels.

Interesting about your LPR. The inflammation seems to indicate there is some sort of reflux going on, but I suppose that could be do to other conditions. Many people on this forum have a GI issue like reflux, so there may be a connection between that and breathing but I'm not sure what that connection may be. I do have a hunch that inflammation in general may play a part in breathing.

Do you notice the air hunger occurring mostly when you're at the doctor? You mentioned it happens when you're sitting around - is it worse in doctor settings? How about sitting vs lying down?

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@gabrielm

I do have a normal voice, but I do a lot of throat clearing which might indicate at least some level of vocal chord issue. If you go to a speech therapist, let us know how it goes. Curious to see how that might help. Does the silent reflux affect your voice, and do you have to clear your throat often?

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Yes, it has affected my voice. When I take anti-acid pills, I clear my throat less. I will share with you any method that leads to recovery.

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@gabrielm

Hi @sher, welcome to the forum. Have you seen a doctor yet about these issue? How long have you had symptoms?

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Hi Thank you.. yes I have! Im confused because the Dr. Said he believes its gerd but did a scope and said everything looks fine. Then the next visit says he believes it might be asthma. But the shortness of breath only happens whenever I feel this flareup in my stomach. I have changed my eating habits and still nothing has changed. I was trying to do alot of natural things like manku honey etc. I recently got covid and my symptoms went through the roof.. so I had to finally buckle down and take the prescription. I must admit it has made me feel so much better but medication is not the route I want to go...Also because the medication has helped makes me think that I do have gerd

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