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.

Hey Gabriel

do u have any updates?

Kind regards Daniel

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@spigolle

Thank you for sharing your thoughts. I’ve been experiencing this for 6 weeks now. I’m fine sleeping and when I’m busy doing things like working or other. I’ve researched reasons why and really couldn’t figure it out. I do have GERD but I’ve had it for years. I’ve never thought I had anxiety at all. I’m very strong minded but I do have to except it’s in my mind only. I’m 51 and very healthy. Exercise everyday and eat healthy. Thank you again

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Doctors told me it was gerd related for me but I went on acid reducers and nothing changed. And I’m not sure about gerd shortness of breath but my shortness of breath had no rhyme or reason, wasn’t periodic around when I had eaten or something but I’m not sure.

Look I’ve helped a good few people, no one believed it was anxiety. But once I recovered from this, I could see for the years building up to SOB, I had an unhealthy relationship with my thoughts and feelings. Always tried to use logic to disregard a fearful thought among other things.

Again I didn’t think it was anxiety. I had no fear beside the sob, I remember the day I felt it being a normal day but I started feeling this. It sounds crazy but I’m glad I went through this. It wasted three years of my youth I know. But now I’ve a much better acceptance of life. I can take the good with the bad. I can walk through fire, I can out work anyone. I live fully again.

Just get everything ruled out till your doctor thinks it’s anxiety then read my other posts on here. That’s what I recommend but I’m no doctor or therapist

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@spigolle

Oh and thank you Gabe for starting this thread. I was searching for answers for a bit now. You kind of think it’s not normal so you don’t even talk a bout it. I will keep people updated as I said in my previous post. The more I think about the issues the more I take deep breaths and think about it. I think for people in the non related health issues the mental is a huge part of it. I wish everybody with this or any other health issues they may have, my hope for you all to be healthy and live long lives.

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@spigolle, I'm glad that this thread has proven helpful for a lot of people. I know when others started commenting years ago, it gave me some relief that I wasn't alone. Please do keep us updated. I'm always interested to know how others fare in their own journey and any useful tips, tricks, or tools you find to be helpful.

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@shedan16

Hey Gabriel

do u have any updates?

Kind regards Daniel

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Hi @shedan16, how are you? I sort of update where I am throughout the thread as I respond to people, which is basically that I'm doing great and only deal with a mild degree (compared to when this first started for me 12 years ago). The air hunger comes and goes, but it's not severe enough to limit much of what I do. There will be "flare ups" now and then mostly corresponding to sinus inflammation, but otherwise have been able to manage symptoms over the years.

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I’m sorry you’re experiencing this. I am too. It is very frustrating and can affect my quality of life on some days. It is frustrating that there isn’t anything physically abnormal to be found, and we’re told it’s acid reflux of some sort, or psychosomatic, but we just know that’s not the case.
Have you seen anything about the vagus nerve being involved? Something I need to research.

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@tiff2908

I’m sorry you’re experiencing this. I am too. It is very frustrating and can affect my quality of life on some days. It is frustrating that there isn’t anything physically abnormal to be found, and we’re told it’s acid reflux of some sort, or psychosomatic, but we just know that’s not the case.
Have you seen anything about the vagus nerve being involved? Something I need to research.

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Have you had an X-Ray of your spine? I had a herniated disc and when a spacer was put in at C 5/6 two years ago , I was able to breath normally again. For 9 1/2 h years I was SOB upon minimal exertion; tested for everything and told it was nothing. I couldn’t do two steps or walk very fast or I was panting. Rolling over in bed pulling covers up had me panting. I also had/ have this problem mentioned here, and it got a little worse after the surgery but better then. Now it seems to happen depending on position. Something for everyone to think about. I’m not sure I want to explore having another surgery, so I haven’t looked into it.

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@tiff2908

I’m sorry you’re experiencing this. I am too. It is very frustrating and can affect my quality of life on some days. It is frustrating that there isn’t anything physically abnormal to be found, and we’re told it’s acid reflux of some sort, or psychosomatic, but we just know that’s not the case.
Have you seen anything about the vagus nerve being involved? Something I need to research.

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Hi @tiff2908, I'm managing it much better these days, experiencing more normal days than not. I did at one point research the vagus nerve and considered some sort of damage to it a potential cause. There were vagus nerve exercises that I did for a little while some years ago but wasn't able to tell if it did anything. I attribute my improvement to breathing and physical exercises and maintaining as good of health as I can.

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I have read a lot of the comments here, but not all. Just curious if anyone has the same symptom I do. For the past few years, I will have bouts of heavy yawning and gasping for air during the yawn, that will happen every few seconds and the whole thing will last for 5-10 minutes and then go away. It happens 2-3 times a week, at random times of the day or night for no apparent reason. I will begin to feel weak and extremely exhausted first and sometimes a feeling of just not feeling well overall and then the yawning/gasping/hyperventilating for air starts. I usually have a lot of body pain in muscles and joints a few minutes before this as well. After about 10 minutes, I feel about 50% better, but feel the need to rest and take a nap. I have Lupus and I have told my Rheumatologist about it, but he says he has never heard of anything like this and basically brushed it off. Any idea what it could be or if anyone else has had this happen? It’s been going on for a little over 4 years. I’m in my early 50’s. I have Poland Syndrome, I have also had brain surgery in the past for Chiari Malformation and a spinal fusion from top to bottom when I was a teenager for severe scoliosis.

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@bluebutterfly

I have read a lot of the comments here, but not all. Just curious if anyone has the same symptom I do. For the past few years, I will have bouts of heavy yawning and gasping for air during the yawn, that will happen every few seconds and the whole thing will last for 5-10 minutes and then go away. It happens 2-3 times a week, at random times of the day or night for no apparent reason. I will begin to feel weak and extremely exhausted first and sometimes a feeling of just not feeling well overall and then the yawning/gasping/hyperventilating for air starts. I usually have a lot of body pain in muscles and joints a few minutes before this as well. After about 10 minutes, I feel about 50% better, but feel the need to rest and take a nap. I have Lupus and I have told my Rheumatologist about it, but he says he has never heard of anything like this and basically brushed it off. Any idea what it could be or if anyone else has had this happen? It’s been going on for a little over 4 years. I’m in my early 50’s. I have Poland Syndrome, I have also had brain surgery in the past for Chiari Malformation and a spinal fusion from top to bottom when I was a teenager for severe scoliosis.

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Hi @bluebutterfly, meant to reply earlier but must've not hit send! It sounds like there may be instances of low oxygen. Have you gotten your oxygen checked or considered getting a small, finger oximeter to monitor and track? It'd be interesting to see if there's a correlation with the bouts of yawning.

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@bluebutterfly

I have read a lot of the comments here, but not all. Just curious if anyone has the same symptom I do. For the past few years, I will have bouts of heavy yawning and gasping for air during the yawn, that will happen every few seconds and the whole thing will last for 5-10 minutes and then go away. It happens 2-3 times a week, at random times of the day or night for no apparent reason. I will begin to feel weak and extremely exhausted first and sometimes a feeling of just not feeling well overall and then the yawning/gasping/hyperventilating for air starts. I usually have a lot of body pain in muscles and joints a few minutes before this as well. After about 10 minutes, I feel about 50% better, but feel the need to rest and take a nap. I have Lupus and I have told my Rheumatologist about it, but he says he has never heard of anything like this and basically brushed it off. Any idea what it could be or if anyone else has had this happen? It’s been going on for a little over 4 years. I’m in my early 50’s. I have Poland Syndrome, I have also had brain surgery in the past for Chiari Malformation and a spinal fusion from top to bottom when I was a teenager for severe scoliosis.

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I too have bouts of yawning and feeling very weak and tired and needing a nap. I always associated those with getting a migraine. Maybe it’s something you’re eating. You can keep a food diary. You write down everything you eat and the time that you eat it. Then you write down any symptoms that show up and the time. You can look back after about a week and see a consistent pattern sometimes. I can’t eat gluten and then I have other things that will trigger a response as well. Not everyone has food intolerances, so your problem may be something else. I also have been experiencing extreme fatigue, shortness of breath, and weakness. Just found out that I am anemic, but I have a lot of heart and lung issues. I also associate it with my heart rates in the 40s and my blood pressure is low. You should be checking these things, and also get a pulse oximeter to check your oxygen levels. I hope that helps.

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