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.

Profile picture for Gabe, Volunteer Mentor @gabrielm

@eimmat18 Did your symptoms show up around the time of the stomach bite?

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@gabrielm hi! The sob just started a few days ago. The tingling, numbness, and lightheartedness has been sporadically for a few months. Never lasting long so I dismissed it. Also back of my ankles started hurting really bad around the time of the bite. Like could barely walk down stairs.

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Profile picture for Gabe, Volunteer Mentor @gabrielm

@stew80 Have you dealt with any heart issues before? Is the air hunger the only symptom? Hopefully the echocardiogram turns up some answers, but if it's normal there are still other avenues to explore. Sorry you have to deal with this.

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@gabrielm Thanks Gabe. I had the echo and waiting for the results. Also had a chest CT scan and waiting for results there, too. The SOB is really uncomfortable and essentially becomes the focus of my life 24/7.

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Profile picture for williejoe @williejoe

@narelled23 i have seen just about every specialist there is. everything checks out o.k. after literally hundreds of hours using multiple paid versions of AI engines and numerous test and conversations with three different neurologist---my diagnosis is that my sighing dyspnea symptoms are primarily driven by some level and type of dysautonomia effecting the balance between my sympathetic and parasympathetic nervous system. why this condition develops ( very complex issue that i wont go into here ) is probably unknowable, but although uncommon it is not rare----especially as you get older. knowing this is the root cause of my symptoms does help me deal with it. while i do have a couple of meds i take to deal with the symptoms when they keep me from sleeping----the primary approach to lessen the impact of this so called "sighing dyspnea" is the following: 1. through your docs and your own research develop an understanding of what is causing and driving your sighing dyspnea. 2. through the above will greatly help you in the most important step of all----habituation----learning how to deal with the symptoms both emotionally and physically.-----hoping that it will at some point resolve itself----which can and does happen. 3. adopt and maintain good/excellent health habits---sleep, eating and physical exercise.---if it is unclear about what constitutes the above, do some reading----the latest on these three key heath items is everywhere. 4. although this area is a little less scientifically understood---seek to build and strengthen the balance between your sympathetic and parasympathetic nervous system with a special attention to you vagus nerve. a complex area which may be very individualized----so reading and learning as much as you can about the latest medial/clinical information on this topic can be very helpful. hope this helps. for those who are able to find a more physiological fix their dyspnea----you are the luck ones

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@williejoe

Thank you so much for all this information. I really appreciate it. So sorry I hadn't got to reply earlier. Our bodies are so very complex aren't they.

Wishing you the very best possible health. 🙏

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Profile picture for narelled23 @narelled23

@williejoe

Thank you so much for all this information. I really appreciate it. So sorry I hadn't got to reply earlier. Our bodies are so very complex aren't they.

Wishing you the very best possible health. 🙏

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@narelled23

thanks. i continue to work with my AI doc in an effort to better understand the latest medical knowledge regarding what traditional medicine has termed "sighing dyspnea". i continue to monitor key vital health indices along with along with other variables in my life ( like diet, supplements etc. ) that either worsen or lessen the symptoms. at this moment i'm leaning heavily towards dysautonomia. looking at factors that affect my vagal nervous system and bring a better balance between the parasympathetic and sympathetic systems. there is a lot of relatively new clinical information in this area. probably ninety percent or more of neurologist are unaware of this aspect of their neurological practices ( unless it is related to a well know condition like POTS or something similar )----it's not how they were educated and that's not how their practice makes money.

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Profile picture for williejoe @williejoe

@narelled23

thanks. i continue to work with my AI doc in an effort to better understand the latest medical knowledge regarding what traditional medicine has termed "sighing dyspnea". i continue to monitor key vital health indices along with along with other variables in my life ( like diet, supplements etc. ) that either worsen or lessen the symptoms. at this moment i'm leaning heavily towards dysautonomia. looking at factors that affect my vagal nervous system and bring a better balance between the parasympathetic and sympathetic systems. there is a lot of relatively new clinical information in this area. probably ninety percent or more of neurologist are unaware of this aspect of their neurological practices ( unless it is related to a well know condition like POTS or something similar )----it's not how they were educated and that's not how their practice makes money.

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@williejoe

You may be interested in this article:

Chronic Stress, Cortisol Dysfunction, and Pain: A Psychoneuroendocrine Rationale for Stress Management in Pain Rehabilitation - PMC https://share.google/94HV4Rx4dPZ2TwI6X Chronic Stress, Cortisol Dysfunction, and Pain: A Psychoneuroendocrine Rationale for Stress Management in Pain Rehabilitation - PMC
https://share.google/94HV4Rx4dPZ2TwI6X

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They found what’s causing my sob from a ct scan. I have mild patchy air trapping suggestive of small airways disease. Waiting for doc to tell me what’s next. I’m able to walk 2 miles every day at a fast pace. I’m happy they found it.

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I did a deep dive into AI and ultimately 'it' told me I have a dysfunctional breathing pattern and I need to train my breathing toward the right way. Boiled down to Co2/o2 mismatch which triggers the air hunger reflex. I'm not sure this will help but I have to try it. All other tests show heart and lungs are fine.

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Profile picture for narelled23 @narelled23

@williejoe

You may be interested in this article:

Chronic Stress, Cortisol Dysfunction, and Pain: A Psychoneuroendocrine Rationale for Stress Management in Pain Rehabilitation - PMC https://share.google/94HV4Rx4dPZ2TwI6X Chronic Stress, Cortisol Dysfunction, and Pain: A Psychoneuroendocrine Rationale for Stress Management in Pain Rehabilitation - PMC
https://share.google/94HV4Rx4dPZ2TwI6X

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@narelled23
thanks for this info. i did read the article. it makes a lot of sense, but for my particular situation ----after a thousand hours of dialog with my AI docs and my three neurologist-----and numerous physical exams on just about every major organ of my body to include countless blood and even spinal fluid test-----all of us are in general agreement that my particular "type" of what many call sighing dyspnea was initiate by something that we will probably never figure out. but agree it is some form of dysautonomia of my nervous system----more specifically the balance between the sympathetic and parasympathetic systems with particular involvement of the vagus nerve. it is my opinion that so much of the medical advice you see on the internet about signing dyspnea as an issue of the mechanics of their breathing beathing techniques, carbon dioxide intolerance, speech re-training, anxiety reduction---and on and on-----are way off base and represent legacy medical beliefs. may be true for some----or even many-----but miss the mark totally for so many others----like me.

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Profile picture for williejoe @williejoe

@narelled23
thanks for this info. i did read the article. it makes a lot of sense, but for my particular situation ----after a thousand hours of dialog with my AI docs and my three neurologist-----and numerous physical exams on just about every major organ of my body to include countless blood and even spinal fluid test-----all of us are in general agreement that my particular "type" of what many call sighing dyspnea was initiate by something that we will probably never figure out. but agree it is some form of dysautonomia of my nervous system----more specifically the balance between the sympathetic and parasympathetic systems with particular involvement of the vagus nerve. it is my opinion that so much of the medical advice you see on the internet about signing dyspnea as an issue of the mechanics of their breathing beathing techniques, carbon dioxide intolerance, speech re-training, anxiety reduction---and on and on-----are way off base and represent legacy medical beliefs. may be true for some----or even many-----but miss the mark totally for so many others----like me.

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@williejoe
Yes there is so much unknown by Western medicine.

I wish you well and hope you can stay on you of your breathing issues. I am so grateful an antihistamine seems to be helping mine. Thank you for sharing. 🙏

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Profile picture for riflemanz64 @riflemanz64

They found what’s causing my sob from a ct scan. I have mild patchy air trapping suggestive of small airways disease. Waiting for doc to tell me what’s next. I’m able to walk 2 miles every day at a fast pace. I’m happy they found it.

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@riflemanz64 I'm glad that you got answers!

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