Mysterious shortness of breath: What has helped you?

Posted by Gabe, Volunteer Mentor @gabrielm, May 31, 2018

I will try to make this as short as possible, but this has been going on for over 5 years, so it might be farily long. 

Beginning in summer of 2012, I began having shortness of breath (SOB) with no other symptoms. I felt a constant need to yawn, and every few breaths wouldn't satisfy the SOB. I would take a deep breath, and felt like it would get "stuck" before satisfying the air hunger feeling. About every 3-5 deep breaths would satisfy it, only for it to return a minute later. 

I got an endoscopy and other tests done, which revealed that I had some esophageal erosion due to acid reflux and a slight hiatal hernia and was diagnosed with GERD. I had always have bad heartburn, so I was prescribed with Prilosec, which I have been taking daily since them. I've tried stopping it a few times but the reflux always comes back a lot worse. 

Lung tests and x-rays were normal. Heart tests normal. Blood test revealed a slight anemia but otherwise pretty normal. 

I did some research reading forums where someone suggested taking vitamin B-12. Strangely, I took it and the SOB disappeared almost instantly. However, it only lasted a few days for it to return just as bad. I then started taking an iron supplement, which again made the SOB disappear quickly- same thing; symptom returned days later. 

After further research, I came across a breathing exercise method called the Buteyko method. Essentially you do a lot of breath holding to build up CO2 and reduce breathing as the theory is that I had chronic hyperventilation causing too much CO2 to exit my body. After applying the method and reducing my breathing, the SOB disappeared after only 2 days and I felt completely normal. I continued the method a few more days then no longer felt the need to pursue the exercises. I was normal for a whole year when the SOB once again returned with some chest tightness. I applied the method again and the symptom went away, this time with a little more effort; after about 3 weeks. I included physical exercise which also helped with my breathing. 

After that, I was normal for about 2 years. I mistakenly stopped or at least slowed down exercise and the SOB returned once again. I applied the method and began running for exercise but the SOB kept getting worse. It got so bad, I had multiple panic attacks and the feeling of completely empty lungs with the inability to satisfy it with deep breaths. I had to stop exercise altogether, apply the Buteyko method and do breathing exercises very carefully with very light and slow exercise. This helped, but it took many weeks for the SOB to improve. Then, it was almost normal when over a year ago as I was running, I couldn't get a deep breath to satisfy exercise-induced SOB. I have had SOB continuously since then (a year and a half). 

I once again started doing breathing exercises and slowly building up physical exercise, but I can't do any prolonged cardio activity because the SOB gets to a point where deep breathing will not satisfy it. While the breathing exercises have helped, they have had very little effect compared to previous efforts. It seems that every time the symptom returned, greater effort yields few results.

I suspect there is something, some underlying cause that is causing the SOB that has alluded me this entire time. 

So for the past few months to a year, the SOB is worse on some days, better on others, but never gone. There's no rhyme or reason or pattern for it. It's just there, sometimes affecting my sleep. I sometimes can't get a deep breath to satisfy it every now and then, but for the most part, a big gulp of air will satisfy it. But it returns seconds to minutes later. It's as though every breath doesn't deliver what it's supposed to, the SOB builds up, and then I have to take a big gulp of air to get rid of the feeling, pattern repeats. My breathing pattern is normal, however. I don't feel like anything physical is happening, but sometimes it feels like my airways and nostrils are slightly inflamed due to allergies, but when I don't feel inflammation the SOB is still there. 

Recent lung function tests show normal- I don't have asthma, or any other problems with my lungs. Heart tests are normal though I did have about a two week bout of heart palpitations which came and went. Haven't had any for a while- it just mysteriously started happening then stopped. Blood tests are normal, though tests always show a slight elevation of biliruben which my doc thinks is Gilbert's disease. 

I don't have sleep apnea (normal test), bloody oxygenation is normal, heart rate normal. 

I recently saw local naturopath (since mainstream docs aren't able to help) who immediately suspected a liver problem when I described my SOB, possibly liver inflammation. He used an electrodermal testing machine to test his theory which did seem to show a problem with my liver and gallbladder. He gave me digestive enzymes and a gallbladder formula to help clear a bile duct clog, thus reducing liver inflammation. He also determined with the machine that I have an egg sensitivity so I've been avoiding eggs. 

Been taking this and avoiding eggs for a couple of months, but there has been no noticeable improvement. Everything else is normal. Emotionally I'm normal- no anxiety, depression, etc. The SOB seems to be the only symptom of something, but always comes back worse, until a year and half ago when it came back and has remained since. I feel like I shouldn't have to do breath holding exercises every day just to maintain my breathing well enough to do every day things. 

Does anyone have any idea of a possible underlying cause?

2021/2022 UPDATE:
Since my original post about 3-1/2 years ago, a lot has happened, so I’d like to update the post to share with others who come across this what I’ve done since then.

I have maintained a weekly Buteyko method breathing exercise regimen where I do a few of these breathing exercises 3-4 times a week in the morning. This, in combination with daily light to moderate exercise (specifically weight lifting, with 1 or 2 days a week of walking and light jogging), I feel has kept the air hunger symptoms tolerable and manageable. I have mostly good days with some not-so-good days, but doing a breathing exercise and knowing that it’ll get better again helps me get through those times.

I also have sinus inflammation which can exacerbate the symptoms, but I’ve also managed this, which in turn reduces the severity of the air hunger symptoms.

So, while I haven’t found a cure nor is the problem completely gone, I have been able to maintain normalcy in daily life and manage the symptoms through the strategies I described.

This discussion remains active, alive and well through the comments section where others who have similar symptoms have shared what has helped them as well as suggestions for possible solutions to explore.

Interested in more discussions like this? Go to the Lung Health Support Group.

@gabrielm

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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When I was diagnosed with LPR, I had just recovered from a really bad cough/sickness I had for about two months. I am really not sure if I do have this or not, but its possible. As far as how often I take deep breaths, its from the moment I wake up till I go to bed. More when I'm sitting upright, less when I am exercising.

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@sherr

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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@gabrielm I have had GERD for 25 yrs. I was told by my GI dr that GERD had caused my asthma. I went to a pulmonologist and sure enough he agreed. He said fumes and/or reflux comes up your esophagus and effects your breathing and can give a hoarseness to my voice, which it did. My experience (being very sick with asthma) has taught me to take GERD and asthma very seriously. My friend got esophageal cancer because of undiagnosed GERD and nearly died. If you can get by without medicine more power to you. I sure can’t. Hope this gives you some insight.

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Hi Gabe! I have the same exact thing as you and gave gotten tested for multiple things and my doctors still can't figure out what it is. I do have anxiety but it starts even when I'm not having a bout of anxiety. It just starts out of no where. It's the most uncomfortable thing. I've had doctors check my oxygen levels and they always say it's fine. I'm just at a loss. I want so badly to figure this out.

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@bailsee

Hi Gabe! I have the same exact thing as you and gave gotten tested for multiple things and my doctors still can't figure out what it is. I do have anxiety but it starts even when I'm not having a bout of anxiety. It just starts out of no where. It's the most uncomfortable thing. I've had doctors check my oxygen levels and they always say it's fine. I'm just at a loss. I want so badly to figure this out.

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Hi @bailsee, glad you found us. Sorry what you’re going through. I know just how you feel. I know there are tons and tons of comments to sift through but to offer some suggestions that have worked for me and others- breathing exercises such as the Buteyko method, looking into other issues that could contribute to this such as GERD or other GI issues, and dietary changes. How long have you been dealing with it and has your doctor done blood work to see if you’re deficient in nutrients?

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@susieqintx

@gabrielm I have had GERD for 25 yrs. I was told by my GI dr that GERD had caused my asthma. I went to a pulmonologist and sure enough he agreed. He said fumes and/or reflux comes up your esophagus and effects your breathing and can give a hoarseness to my voice, which it did. My experience (being very sick with asthma) has taught me to take GERD and asthma very seriously. My friend got esophageal cancer because of undiagnosed GERD and nearly died. If you can get by without medicine more power to you. I sure can’t. Hope this gives you some insight.

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Wow so did taking asthma medication help and stop your symptoms or do you have to take both asthma and reflux medication?

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@sherr

Wow so did taking asthma medication help and stop your symptoms or do you have to take both asthma and reflux medication?

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I have had to take both kinds of meds for all these years. I have tried doing without them and I get really sick. I’m told they both will need to be treated for life.

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@susieqintx

I have had to take both kinds of meds for all these years. I have tried doing without them and I get really sick. I’m told they both will need to be treated for life.

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Wow I'm sorry to hear this... Miracles can happen to where this doesn't have to be your long term story. ❤❤

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@sherr

Wow I'm sorry to hear this... Miracles can happen to where this doesn't have to be your long term story. ❤❤

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I do believe in miracles. Perhaps the miracle is that we have a means to treat GERD and asthma—although not having to take the meds would be my first choice of a miracle.😊

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@sprucy11

When I was diagnosed with LPR, I had just recovered from a really bad cough/sickness I had for about two months. I am really not sure if I do have this or not, but its possible. As far as how often I take deep breaths, its from the moment I wake up till I go to bed. More when I'm sitting upright, less when I am exercising.

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That was how it was when it first started for me; exercise seemed to help and sitting around made it worse or I just noticed it more. I used to exercise pretty vigorously but probably over did it at some point and it made it worse. But I do find that weigh lifting moderately nearly every day helps and keeps it in check. What kind of exercise do you do?

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@gabrielm

That was how it was when it first started for me; exercise seemed to help and sitting around made it worse or I just noticed it more. I used to exercise pretty vigorously but probably over did it at some point and it made it worse. But I do find that weigh lifting moderately nearly every day helps and keeps it in check. What kind of exercise do you do?

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When I read your initial post, I thought to myself this is exactly what I have! I mostly do cardio, I can do an hour on my airbike and not be winded at all. I sometimes do a 20 minute jog. But the next day I'll be sitting at my desk taking in deep breaths of air, not moving at all. Does this sound normal? It does make me anxious sometimes and I'll start googling or going on reddit searching for answers, but I am just confusing myself more.

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