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.

Hi @dishwalla9, it looks like the layout of the discussion may have led you to believe that @uzairkashtwari92 was speaking to you. He was in fact responding to @nick43 who was asking the group if his symptoms might be psychosomatic. Hence that word was used in the reply. It was not a judgement on you or anyone else for that matter.

It can be confusing sometimes to know who is replying to whom, since you get an email for every response made to the discussion. This does not mean that each response is specifically directed to you. This article explains:
- Replies and @mentions: How do I know who is replying to whom? https://connect.mayoclinic.org/page/about-connect/newsfeed-post/replies-and-mentions-how-do-i-know-who-is-replying-to-whom/

Dishwalla, I can understand your frustration at not being believed and doctors being wrong about your fibromyalgia diagnosis. So many share that unfortunate experience. Are you taking part in the fibro discussions in the Chronic Pain group? https://connect.mayoclinic.org/group/pain/

I also want to take a moment to welcome new member @dominodad (love the username and would like to hear the backstory on that). Dominodad, I encourage you to read through the posts if you haven't already. I know you share in the frustration of other members here in the lack of clear answers. What specialists have you seen?

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@dishwalla9

Let me ask...do you have any history of heart electrical issue issues or arrythmia palpitations.....do you have any autonomic issues?

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LPR can cause all the feelings that the OP suggested in his opening thread and LPR can also incur due to neuropathy but it isn't autonomic dysfunction. For those with GERD, LPR, and reflux, especially LPR reflux meds are not enough. They only modulate reflux and don't cure it.

Additionally, many of us are reporting exercise tolerance and actually our breathing improves while exercising so again one of the symptoms of autonomic neuropathy is crossed off. Another test I've done is to use ppi's at high dose and see that my running does improve and if I get off I feel it gets worse again.

Feeling a little lightheaded or dizzy is normal after standing up, and more notably with autonomic and gastro related symptoms you need to look at if you feel full after eating a few bites and the rate your body digests food with a gastric emptying study. Most cases are due to a mechanical issue of the sphincter causing silent reflux and then exposing irritants like pepsin, acid, gasses, and bile into the throat which can inflame your airways giving you a false sense of athsma.

LPR diets are also wildly successful and iv'e seen a remarked improvement in symptoms since starting one, but breathing is an involuntary autonomic process and if breathing tests are coming up normal it isn't autonomic neuropathy or athsma causing these symptoms but in fact LPR.

So in summary, if your heart rate adjusts properly during exercise, breathing gets better, your appetite is fine while eating, all these are signals that your autonomic nervous system are working fine. Our breathing is normal but the perception in breathing is not there since there's a congestion factor that isn't athsma prevalent due to the lpr

A lot of us here have normal blood pressure, no arrhythmias, diagnostic tests coming back out fine, so its more likely this is psuedo dyspnea as i wrote about before which is caused by esophagitis, "sensory" nerves, and airway reflux,.

I only write this because I think you're scaring some people here by suggesting its some high hanging fruit thing causing these things.

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@dishwalla9

I wouldn't be posting after 20 years of this if it were psychosomatic. I've been to every doctor and part of medicine imaginable and no answers except something related to autonomic dysfunction. . Now you sound like one of the doctors that were wrong about my fibromyalgia diagnosis.

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My dear

I asked nick to check if it were psychosomatic! I didnt mean to offend you or anything! You are a nobel soul, may God cure you of your ailments! I had just asked you what psychiatric meds were you prescribed since you said yes you have taken them n they are not the solution!

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I do not nor have I ever taken any psychiatric meds.

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@dishwalla9

Thanks for the reply but again I've tried that but didnt solve the 20 years of having this. I'm not overweight and I've takin meds for acid reflux. That didnt solve it. I do have some autonomic dysfunction so I'm guessing that has something to do with it.

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@dishwalla9- Good morning. Yes, autonomic dysfunction can certainly be the cause of dyspnea but you would also have other, very prominent symptoms, some include heart troubles. Can you tell more about your autonomic dysfunction and how it's effected your life?

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@nick43

Hi everybody. I was very happy to stumble across this discussion because now I know I'm not the only one experiencing this. It looks to be at least a year since anyone responded on here but I'll give it a shot and hope you guys are still on this thread.

My SOB started about 2-3 months ago. It's about exactly as @tonyagregg and @gabrielm are describing. Some days worse than others but it's there all the time, everyday.
I find myself often reaching for a deep breath and getting no satisfaction. I then find myself looking for yawns constantly with no full relief or satisfaction. Then after maybe 3-7 attempts I get a satisfying deep breath that feels good. Of course this doesn't last long and I'll find myself searching for that next deep breath that doesn't fully materialize, cycle repeats. Very annoying, disappointing, it affects my well-being by bringing on anxiety and then the situation gets worse.
I am in good shape, 43 yrs old, eat healthy, I go for long bike rides, I can jog 3 miles at will. Exercise is not a problem but the same symptoms exist while exercising. It doesn't matter if I'm biking up a big hill or laying in bed trying to sleep at night.
Like @gabrielm, I don't feel like my life or my job is stressful. I have had GERD for many years but Prilolsec once a day keeps it in check. The only thing I'm allergic to is cat hair/dander. I get similar asthma symptoms but all I would need to do is leave the cat house and I'm better. I can't do that with the SOB I have now.
My Oxygen level is fine, normally around 98. Resting heartrate is normally around 70. Blood pressure mostly steady at 120/80.
The Dr has prescribed an Albuterol inhaler which doesn't help and Singular allergy medicine that also doesn't help. I'm going back soon for a pulmonary airway test were you blow into a tube and it measures airflow and other things. I believe this will rule out any asthma related things but I do not know where to go after this. I'm experiencing some anxiety since its on my mind often and also have been having trouble getting to sleep at night, sometimes I'm up for hours.
I'm wondering if it could be psychosomatic if there is actually nothing physically wrong. Has anyone made any progress on figuring out this mystery?

Thanks

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@nick43 check your messages

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I am having same problems I keep taking deep breath to breathe normally. I don't know what's happening to me. I am really scared and worried. This shortness of breath feels terrible. Sometimes I get panic attacks and I feel like I'm gonna get heart attack. I can't go to my doctor because due to the pandemic right now they're not seeing any patients. This is terrible

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I’m sorry to hear that you are having this issue. We are all kind of in the same boat as our health care providers are not open to evaluate us. Can you describe how it feels when you try to take a deep breath. Is it the same when you inhale through your mouth as when you inhale through your nose. I am as Los having some issues with deep breathing. It is also uncomfortable for me to yawn.

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@nick43

Hi everybody. I was very happy to stumble across this discussion because now I know I'm not the only one experiencing this. It looks to be at least a year since anyone responded on here but I'll give it a shot and hope you guys are still on this thread.

My SOB started about 2-3 months ago. It's about exactly as @tonyagregg and @gabrielm are describing. Some days worse than others but it's there all the time, everyday.
I find myself often reaching for a deep breath and getting no satisfaction. I then find myself looking for yawns constantly with no full relief or satisfaction. Then after maybe 3-7 attempts I get a satisfying deep breath that feels good. Of course this doesn't last long and I'll find myself searching for that next deep breath that doesn't fully materialize, cycle repeats. Very annoying, disappointing, it affects my well-being by bringing on anxiety and then the situation gets worse.
I am in good shape, 43 yrs old, eat healthy, I go for long bike rides, I can jog 3 miles at will. Exercise is not a problem but the same symptoms exist while exercising. It doesn't matter if I'm biking up a big hill or laying in bed trying to sleep at night.
Like @gabrielm, I don't feel like my life or my job is stressful. I have had GERD for many years but Prilolsec once a day keeps it in check. The only thing I'm allergic to is cat hair/dander. I get similar asthma symptoms but all I would need to do is leave the cat house and I'm better. I can't do that with the SOB I have now.
My Oxygen level is fine, normally around 98. Resting heartrate is normally around 70. Blood pressure mostly steady at 120/80.
The Dr has prescribed an Albuterol inhaler which doesn't help and Singular allergy medicine that also doesn't help. I'm going back soon for a pulmonary airway test were you blow into a tube and it measures airflow and other things. I believe this will rule out any asthma related things but I do not know where to go after this. I'm experiencing some anxiety since its on my mind often and also have been having trouble getting to sleep at night, sometimes I'm up for hours.
I'm wondering if it could be psychosomatic if there is actually nothing physically wrong. Has anyone made any progress on figuring out this mystery?

Thanks

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Hi @nick43, as you can see this thread is alive and well! 🙂 We're still trying to find answers. My air hunger is somewhat under control through my breathing exercises and physical exercise, but still looking for answers. Many of us have GI issues as well like GERD, hiatal hernia, etc. So I wonder if there is a connection there. But not sure. That seems to be pretty common among us who have the same symptoms.

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@abidaisl

I am having same problems I keep taking deep breath to breathe normally. I don't know what's happening to me. I am really scared and worried. This shortness of breath feels terrible. Sometimes I get panic attacks and I feel like I'm gonna get heart attack. I can't go to my doctor because due to the pandemic right now they're not seeing any patients. This is terrible

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Hi @abidaisl I know how you feel! I used to get panic attacks when it was at its worst. However, Buteyko breathing exercises and regular physical exercise (slow and controlled) helps a good deal. I think it will be worth a shot to at least help you manage it until you see a doc.

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