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.

Just wanted to update....I started Lexapro 8 days ago and am noticing improvement. I wake up normal and it comes and goes on and off throughout the day but maybe it's just not bothering me? I don't get the full effects for another couple of weeks.

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Hi, I am astounded to have come across this discussion. I TOO have been having this same exact issue!!! I can't even begin to describe my despair. As so many of these posts have mentioned, I know many can relate. This issue kind of started about a year and a half ago with more mild symptoms, which I already have asthma so I attributed it to my asthma getting worse. But then about 7 months ago it got 10× worse almost over night! I mean just awful. There is this heaviness in my chest, and it almost feels like there is literally something blocking my upper airways. I've been to 2 primary care doctors, 2 pulmonologists, a cardiologist, an ENT and at least 10 ER visits. I've had full blood work up and allergy panel, which showed I do have quite a few allergies. Started getting treated for that and no improvement. I've had 2 lung function tests six months apart, which were both normal. X-ray and chest CTA, normal. Larynscopy to check for for vocal cord dysfunction, normal. I have a bronchoscopy scheduled for July 10th, which my doctor said more than likely it will come back normal since all my other tests were normal, but he will do the procedure anyways just to give me peace of mind. He said there is like a less than 1% chance that maybe he would find a mucus plug but thats it. If that yields no answers then I am at a loss for what to do next. I am DEVESTATED that I cannot find a cause. It is a daily struggle that sometimes I am just feeling so depressed that ill have to live like this for the rest of my life. I feel like I can't get enough air in, like there is something blocking the air flow, and I literally hyperventilate every single day, because I'm so starved for air that I take waaayyy too many deep breathes to compensate. Also when I lay down for a while, there is like this crackling and gurgling sounds deep in the back of my lungs, that completely dissappears when I get up.. I'm taking a steroid inhaler and an Albuterol inhaler, and their both useless. Interestingly though, there was one 1 time where I got some relief which lasted for 4 days. I had just tried yet another inhaler, called Tudorza. Tudorza is an anticholinergic, which effects your mucus production. It gave me terrible chest pain so I stopped after just one day. For the next couple days after that I felt like my mucus was thick, so I took mucinex. All of a sudden the next morning I could actually breath normally!!! It was a miracle and I thought I was cured, only for symptoms to slowly return and be back completely after 4 days. Since then I have tried to recreate that instance with the Tudorza and the mucinex, and it hasn't worked again. Its so odd, I can't explain why that happened. I've tried sooo many herbs and supplements. I'm so desperate to figure this out. Hoping the bronchoscopy gives some answers despite my doctors doubts that it will. There has to be a reason this is happening!!!

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This is exactly my situation...do you feel better if laying on stomach or in a hot bath? Nose always feels stuffy too and uncomfortable too! I am now going to ENT and they think it could possibly be nerve damage in my throat causing the sensation but I'm not so sure about that. Also, I've always had a pinched nerve and not able to bend my neck backwards too far without discomfort and tingling in my fingers. IN the last month my neck/shoulder/arm and hand hurt so bad I finally went to the Chiropractor. My hand is weak and he pointed out that it's actually shrinking due to nerve damage. He suggested I go see a Thoracic Outlet Syndrome Specialist. I was blown away because several people on this site have said this could be the problem. I went to my PMC and have a referral in and waiting on that to go through my insurance. My question is...could this also affect the nerve in my throat? Anybody want to comment/advice?

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@tatianar

Hi, I am astounded to have come across this discussion. I TOO have been having this same exact issue!!! I can't even begin to describe my despair. As so many of these posts have mentioned, I know many can relate. This issue kind of started about a year and a half ago with more mild symptoms, which I already have asthma so I attributed it to my asthma getting worse. But then about 7 months ago it got 10× worse almost over night! I mean just awful. There is this heaviness in my chest, and it almost feels like there is literally something blocking my upper airways. I've been to 2 primary care doctors, 2 pulmonologists, a cardiologist, an ENT and at least 10 ER visits. I've had full blood work up and allergy panel, which showed I do have quite a few allergies. Started getting treated for that and no improvement. I've had 2 lung function tests six months apart, which were both normal. X-ray and chest CTA, normal. Larynscopy to check for for vocal cord dysfunction, normal. I have a bronchoscopy scheduled for July 10th, which my doctor said more than likely it will come back normal since all my other tests were normal, but he will do the procedure anyways just to give me peace of mind. He said there is like a less than 1% chance that maybe he would find a mucus plug but thats it. If that yields no answers then I am at a loss for what to do next. I am DEVESTATED that I cannot find a cause. It is a daily struggle that sometimes I am just feeling so depressed that ill have to live like this for the rest of my life. I feel like I can't get enough air in, like there is something blocking the air flow, and I literally hyperventilate every single day, because I'm so starved for air that I take waaayyy too many deep breathes to compensate. Also when I lay down for a while, there is like this crackling and gurgling sounds deep in the back of my lungs, that completely dissappears when I get up.. I'm taking a steroid inhaler and an Albuterol inhaler, and their both useless. Interestingly though, there was one 1 time where I got some relief which lasted for 4 days. I had just tried yet another inhaler, called Tudorza. Tudorza is an anticholinergic, which effects your mucus production. It gave me terrible chest pain so I stopped after just one day. For the next couple days after that I felt like my mucus was thick, so I took mucinex. All of a sudden the next morning I could actually breath normally!!! It was a miracle and I thought I was cured, only for symptoms to slowly return and be back completely after 4 days. Since then I have tried to recreate that instance with the Tudorza and the mucinex, and it hasn't worked again. Its so odd, I can't explain why that happened. I've tried sooo many herbs and supplements. I'm so desperate to figure this out. Hoping the bronchoscopy gives some answers despite my doctors doubts that it will. There has to be a reason this is happening!!!

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Hi @tatianar. Terribly sorry that you're experiencing this, but I think that finding this forum and seeing all the other people who are experiencing similar issues hopefully will give you hope and a sense of community that you're not alone. Back before posting the original post, I thought I might be the only person experiencing this. There are many!

If you haven't already, dig through the comments (it will take time, there are a lot!). I think you will find many potential treatments and things that will at least help you manage this until you find an answer. We're all still searching and when we find one, I know it will be shared in this thread for the benefit of many.

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@gabrielm

Hi @tatianar. Terribly sorry that you're experiencing this, but I think that finding this forum and seeing all the other people who are experiencing similar issues hopefully will give you hope and a sense of community that you're not alone. Back before posting the original post, I thought I might be the only person experiencing this. There are many!

If you haven't already, dig through the comments (it will take time, there are a lot!). I think you will find many potential treatments and things that will at least help you manage this until you find an answer. We're all still searching and when we find one, I know it will be shared in this thread for the benefit of many.

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Thank you, and yes I will be combing through these responses and see what I can apply. That would be amazing if someone found a cure that could be the answer no one has tried yet. Could there possibly be something going on that is rare and undiscovered by the medical community as of yet? That thought has crossed my mind. Could be why there is no way to detect it yet through any testing available.
Thank you very much for welcoming me.

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@tatianar

Thank you, and yes I will be combing through these responses and see what I can apply. That would be amazing if someone found a cure that could be the answer no one has tried yet. Could there possibly be something going on that is rare and undiscovered by the medical community as of yet? That thought has crossed my mind. Could be why there is no way to detect it yet through any testing available.
Thank you very much for welcoming me.

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I agree it does cause despair. That's why I started an antidepressant. I figured if I have this, I could at least feel better about it!!

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@noxext

I feel your pain mate.
about breathing in my case it was hyperventilation so you must force urself to breath in as much as you can, then hold your breath as much as you can (for example I can do it 30 seconds, regular is maybe 10 seconds keep doing it, in time you will improve ur time very fast) and breathe out. You will see immediate improvements in less and less need to take a deep breath to feel the whole cycle of breathing . I already write in my previous post try on youtube austin goh it is very nice explained and easy to do it.
Also you can try to mediate. Think something nice when you breath in and think on something unpleasant when you breath out. For example beautiful sunbeams and grey smoke.
Dont forget to check do you breath normal. Lay down put one hand on stomach and one on chest. Breath in and check, if you are stomach is raising you are good, if chests you must teach urself to do it by ur stomach.

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Hello I'd really appreciate if you can DM me the link for jar vacuum system please

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@qbug

I agree it does cause despair. That's why I started an antidepressant. I figured if I have this, I could at least feel better about it!!

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Thats a really great point. That sounds tempting on my end as well, depending on my bronchoscopy results I may look into an antidepressant as well.

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@tatianar

Thats a really great point. That sounds tempting on my end as well, depending on my bronchoscopy results I may look into an antidepressant as well.

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One of my fears with this "disorder" is going under anesthesia. Did you find there was any issue with that?

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@qbug

One of my fears with this "disorder" is going under anesthesia. Did you find there was any issue with that?

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@qbink - I think that you might be looking at all of the "what ifs" and it's driving you to worry even more. I do this all the time and it drives everyone around me nuts. During surgery, you are intubated. A machine breathes for you. You are carefully monitored for the level of gas exchanges to make sure that your O2 level is high enough. Anesthesia is carefully monitored. I found this simple video. You probably are familiar with all of this. Please rest assured that an OR team does everything it can to make sure that you stay healthy during any operation. My second lung operation was very long. It was 7 1/2 hours. I had already lost my lower right lobe 10 years before. My second operation was on my other lung. Needless to say, I'm here to talk about it! What have you done prior to your SOB to handle problems so that you can come to a peaceful understanding?

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