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.

@bellaquinn21

Thanks for posting this. For almost 5 years now I have been suffering with the same air hunger. I actually thought it was getting better until a month or so ago. now it is so bad I can barely get out of bed. As I also feel lightheaded/faint/off balance /vestibular type symptoms with mine too. I've also had lung function tests, heart echo/ halter moniter/blood tests. and the only thing they found was very low feritin levels, and low cortisol. My symptoms are ruining my life. I feel like im about to die. Anyway, it was good to read through these comments to get some ideas on where to go from here.

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I had low cortisol levels too. They gave me something but it didn't help.

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@cookie2009

@gabrielm I did go to the lung doctor a couple days ago. I can't it. He he also suggested the breathing exercises you told me to try. So it's been a couple days and it is getting a little better. Tolerable anyways. He thinks I did something to trigger some breathing problem where it is just about feeling. Like my brain and breathing are not on the same page. I am to call him if I do not get better but he said it can take a few days. So I have been trying to breath slower and do the exercises. My body is getting to much Carbon or oxygen one or the other and I try to Over breath I guess from what I got out of it. So kind of like some kind of anxiety I guess but not really at the same time. I just need to get my breathing back in sync with my brain because to me it literally feels like I'm not getting enough air. But yet I am. Just like how you describe yours. I will keep you posted. Thank you.

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this absolutely is how I feel. I'm seeing a respiratory physiologist, who suggests it's a breathing pattern disorder. It gets work with minimal amt. of exertion. She has me strengthening my diaphragm daily. It's been around 4 weeks. Not helping yet

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@sal51

I am a physician with knowledge of the condition many posters experience- knowledge based on seeing patients with it and experiencing it myself. I have previously posted but realize many haven't read all the posts. This post concerns those who have dyspnea/shortness of breath concerns that are unexplained after extensive evaluation and doesn't refer to those who are determined to have a cardiac or pulmonary cause. The general term given is dysfunctional breathing and there are different forms. The classic example is patients who hyperventilate (breath rapidly in excess of a normal rate of breathing); many posters experience air hunger or the feeling of not obtaining enough air which prompts them to take exaggerated inspirations/deep sighs; many mention yawning which is typical.
The exact underlying cause of this condition is not clear. It is generally agreed that there is a derangement in the ventilatory drive which is the natural control mechanism of breathing. There is an idea that you can become overly sensitive to CO2 leading to the increased ventilation rate or depth. There are various factors that impact the ventilatory drive but there are certainly psychological aspects to it which is why anxiety is often suggested as an underlying cause but it may not be as simple as someone being anxious and therefore short of breath. In my case, I have found underlying psychological stress about something to often be a factor. I feel many on here take issue with the introduction of a psychological basis for this symptom and perceive the doctor as blowing them off but it is a valid consideration, particularly when test after test for organic disease is reassuring. The fact that the condition may have origins psychologically should not be taken to mean the condition is not real because it definitely is and there are many somatic manifestations (physical symptoms) of psychiatric disease that are just as real as symptoms that have an organic basis.
Unfortunately, the general knowledge of this condition is lacking among most practitioners which leads to frustration in those experiencing it because it is difficult for most doctors to address patients who are so symptomatic but yet have no abnormalities on normal tests.
There is no agreed upon treatment and when you read through the posts, there are a wide variety of responses to a wide variety of treatments. Some have reflux and improve with treatment; some mention psychiatric medications; some do breathing exercises, some take various vitamins/supplements.
I suspect the most important aspect of improving is acceptance of the condition and a belief in whatever treatment that is pursued. The fact that typical tests are normal should provide reassurance- I understand that for many, normal tests leave them with unanswered questions/ wondering what's wrong but it is a good thing to not have heart or lung issues.
Some mention having had COVID as did I and breathlessness is one of the symptoms of long COVID so it will be interesting to see how this plays out as the understanding regarding COVID and its effects on people are better studied/understood. The primary question I would have is if you can see breathlessness in long COVID in patients who did not have lung involvement when they were actually sick with COVID.

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Out of nowhere, I started having air hunger/sighing in Dec. 2020. Didn't test for covid. I ended up getting diagnosed 6 days later after getting other symptoms. Breathing issue has persisted. So I am not sure whether I have breathing problems due to covid or whether I have an unexplained breathing problem unrelated to my getting covid.

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@sheebacat

My SOB came on out of nowhere. I tested positive for Covid 6 days later. All of the symptoms went away in two weeks but the sob stayed. I'm on month 16 now. I have some very good days, almost feel cured. Then it comes back in a wave of bad days. I have had all lung and heart tests come out normal. I was referred to a pulmonolgist but they didn't even examine me. Just said the x rays and the ct scan were found. Nothing further they could do. I've tried red light therapy, acupuncture, exercise, vagus nerve exercise, breathing exercise (4-7-8, Winn Hof, Buteyko, diaphragm. I've had massages, I walk a large dog daily. It's recovery/relapse over and over. Every single of the 4 general prac. doctors have said it's anxiety. I don't have sweaty palms, don't feel nervous, nothing. They have all tried to put me on anti-anxiety meds. I've seen a naturopath. $$$ worth of supplements. Sometimes I've taken an antihistamine which has worked off and on. I've had an endoscopy, nothing. Finally I relented and my doc put me on Prozac 10 mg. Nothing. Then 20, 30 and now 40 mgs. I don't know if it's working because according to notations on my calendar, I have the same amount of bad days and good days since this all started. I recently started working with a respiratory physiologist. She is helping me to retrain my breathing to tummy only. I also am to try to suppress any yawn or sigh by swallowing or sipping water. It's so hard sometimes. I have a machine to train my diaphragm to get stronger. I get worse with minimal exertion and have to lie down and slow down. I am giving it a 100% try. The prozac may be tapered off. When I started 30 mgs I felt it was (maybe) helping but that didn't last. I want to be referred to another pulmonoligist to see if there are any other tests. I want to make sure I don't have a pulmonary embolism

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What is your BMI?…….What is your height and weight? Being generally overweight, or carrying a belly - can cause shortness of breath. Another possibility, are smells! Some people are sensitive to various smells……which can cause shortness of breath. It’s tough to test for this issue…….

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@kelly7232

What is your BMI?…….What is your height and weight? Being generally overweight, or carrying a belly - can cause shortness of breath. Another possibility, are smells! Some people are sensitive to various smells……which can cause shortness of breath. It’s tough to test for this issue…….

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I'm 5.2. I weigh 117. I'm petite and not sure of my BMI but I think it's fine. So not overweight. I don' t have a spleen. I'm on Prozac 40 mgs but want to get off of it. It's not helping with the breathing. I have no side effects from it tho. I've been meeting online with a respiratory physiologist from the UK. She thinks I have a breathing pattern disorder - air hunger/sighing.
The breathing started first out of nowhere and then I developed coughing, fever, sore throat 6 days later. Tested positive for covid. I've been calling it long haul covid but don't know. It was an out of the blue onset with the breathing. Thanks for any ideas you may have. It's been going on for 16 months, recovery for a few days, then relapse.

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@sheebacat

My SOB came on out of nowhere. I tested positive for Covid 6 days later. All of the symptoms went away in two weeks but the sob stayed. I'm on month 16 now. I have some very good days, almost feel cured. Then it comes back in a wave of bad days. I have had all lung and heart tests come out normal. I was referred to a pulmonolgist but they didn't even examine me. Just said the x rays and the ct scan were found. Nothing further they could do. I've tried red light therapy, acupuncture, exercise, vagus nerve exercise, breathing exercise (4-7-8, Winn Hof, Buteyko, diaphragm. I've had massages, I walk a large dog daily. It's recovery/relapse over and over. Every single of the 4 general prac. doctors have said it's anxiety. I don't have sweaty palms, don't feel nervous, nothing. They have all tried to put me on anti-anxiety meds. I've seen a naturopath. $$$ worth of supplements. Sometimes I've taken an antihistamine which has worked off and on. I've had an endoscopy, nothing. Finally I relented and my doc put me on Prozac 10 mg. Nothing. Then 20, 30 and now 40 mgs. I don't know if it's working because according to notations on my calendar, I have the same amount of bad days and good days since this all started. I recently started working with a respiratory physiologist. She is helping me to retrain my breathing to tummy only. I also am to try to suppress any yawn or sigh by swallowing or sipping water. It's so hard sometimes. I have a machine to train my diaphragm to get stronger. I get worse with minimal exertion and have to lie down and slow down. I am giving it a 100% try. The prozac may be tapered off. When I started 30 mgs I felt it was (maybe) helping but that didn't last. I want to be referred to another pulmonoligist to see if there are any other tests. I want to make sure I don't have a pulmonary embolism

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Thank you for sharing this. Would you say what you have been doing is helping by reducing the times you feel the air hunger? Early on, things seemed to slowly help for me but took a long time to stabilize

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@sheebacat

I'm 5.2. I weigh 117. I'm petite and not sure of my BMI but I think it's fine. So not overweight. I don' t have a spleen. I'm on Prozac 40 mgs but want to get off of it. It's not helping with the breathing. I have no side effects from it tho. I've been meeting online with a respiratory physiologist from the UK. She thinks I have a breathing pattern disorder - air hunger/sighing.
The breathing started first out of nowhere and then I developed coughing, fever, sore throat 6 days later. Tested positive for covid. I've been calling it long haul covid but don't know. It was an out of the blue onset with the breathing. Thanks for any ideas you may have. It's been going on for 16 months, recovery for a few days, then relapse.

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I think you mentioned about doing some diaphragm strengthening exercises. What sort of exercises did they have you do? I’ve wondered about that throughout my research. That something might cause a weakness in the diaphragm that might lead to air hunger.

Did you have any other lingering symptoms from Covid or was the breathing issue the only lingering one?

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I do try to focus on not moving my chest and keeping my shoulders relaxed. She's having me fight the urge to sigh or yawn. Instead, I try to suppress it by swallowing, exhaling or if I must take a deep breath, exhale very slowly. I practice diaphragm breathing all day, sitting, standing and lying down. I found it odd that a breathing disorder would come on all of a sudden, yet she says she has seen it many times. I have this little hand held plastic thing that's a strengthening device. I'll try to post a picture of it or at least get the name for you. I'm working hard on using it as much as possible.
Covid left me with no other symptoms so I don't know if I was positive immediately when the breathing started? Or the breathing started and I "happened to get" Covid a few days later.

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@gabrielm

Thank you for sharing this. Would you say what you have been doing is helping by reducing the times you feel the air hunger? Early on, things seemed to slowly help for me but took a long time to stabilize

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I sent you a long message but it decided not to post and I lost it.
There is nothing I can point to that has helped. This has been happening since Dec. 2020. I mark on my calendar "good" or "bad" day. Its virtually unchanged. There are some good, then bad. Relapse/recovery. Seems to make no difference what I'm doing.

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@sheebacat

I sent you a long message but it decided not to post and I lost it.
There is nothing I can point to that has helped. This has been happening since Dec. 2020. I mark on my calendar "good" or "bad" day. Its virtually unchanged. There are some good, then bad. Relapse/recovery. Seems to make no difference what I'm doing.

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How is your diet? Do you notice any changes to your breathing depending on how or when you eat? I.e, if you eat a lot, is your breathing more difficult.

I think that’s a good thing about keeping track of good bad days to see if it corresponds to anything. Curious on if you’ve linked any food or times that you eat with your breathing

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