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.

@gabrielm

@cindajune, I'm sorry that you have so much going on. It must be overwhelming. It sounds like there's a lot of uncertainty with many of the symptoms as far as not know what they could be or the causes. Do you have any kind of condition, disease, or syndromes that you know for sure that you can start to tackle? I find tackling one issue will help with other issues and symptoms.

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The Drs are at a loss. They all said the same. So I tackled what I thought would help. I started with diet. No acidic foods, no gluten, no sugar. A year now and it hasn’t helped. I put myself on NAC. It has been studied for use to help with many disorders. Autoimmune, lung etc. Still many studies in the works. It seems to have taken the edge of the breathing. I used to full on go into panic mode and flail around when I had SOB. Since taking NAC about 10 months now I feel it not letting me take a deep breathe but it seems to release quicker. Still there but bit better. That’s all I can think to do. Don’t want to do too much without being monitored.

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@cindajune

The Drs are at a loss. They all said the same. So I tackled what I thought would help. I started with diet. No acidic foods, no gluten, no sugar. A year now and it hasn’t helped. I put myself on NAC. It has been studied for use to help with many disorders. Autoimmune, lung etc. Still many studies in the works. It seems to have taken the edge of the breathing. I used to full on go into panic mode and flail around when I had SOB. Since taking NAC about 10 months now I feel it not letting me take a deep breathe but it seems to release quicker. Still there but bit better. That’s all I can think to do. Don’t want to do too much without being monitored.

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Whats NAC?

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@cindajune

The Drs are at a loss. They all said the same. So I tackled what I thought would help. I started with diet. No acidic foods, no gluten, no sugar. A year now and it hasn’t helped. I put myself on NAC. It has been studied for use to help with many disorders. Autoimmune, lung etc. Still many studies in the works. It seems to have taken the edge of the breathing. I used to full on go into panic mode and flail around when I had SOB. Since taking NAC about 10 months now I feel it not letting me take a deep breathe but it seems to release quicker. Still there but bit better. That’s all I can think to do. Don’t want to do too much without being monitored.

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I'm glad that medicine is helping. It seems like there are a lot of doctors looking into the various issues. Hopefully something turns up especially if/when you're able to get into the Mayo Clinic. In the meantime, I would suggest breathing exercises for the SOB issue. There are a few methods and the one I use is Buteyko Breathing method. It has helped me greatly over the years to have somewhat normal breathing and keeps the symptoms at bay. Worth looking into if you haven't yet.

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In reply to @grandmasheri "Whats NAC?" + (show)
@grandmasheri

Whats NAC?

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N-acetyl-L-cysteine It’s an antioxidant. Please research it and ask your Dr. My Dr said it would not help me at all. I have been seeing an ent that said to try it. It calms things for me, if you will. The breathing in particular. Has not taken it away but a definite improvement.

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I have had this same issue for over ten years. It comes and goes. I started keeping a log in Jan 2020 so when I have a bad episode I can look back and remember that I have dealt with this before and it will pass.
Yesterday I had a particularly bad day and had a panic attack and had to leave work. Like many others I have silent reflux and have recently increased my omeprazole to 40mg daily. I have a doctor appt next week to see if i need to get on something stronger.
My symptoms are feeling like I have to take a deep breath but having to yawn or contort my body in order to get that full breath satisfaction. Then the process repeats again. I have to take meds to get to sleep at night because it’s impossible to fall asleep when you feel like you can’t breathe. I have a finger pulse ox by my bed so I can show myself that I am getting enough air.
Although I think the air hunger is likely caused by my silent reflux, I think my anxiety makes it worse. It helps so much ti reas that others are living with the same issue. I hate it for everyone but it also shows me that this is a symptom that we can deal with and it’s not life-threatening.

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@brandelyncon

I have had this same issue for over ten years. It comes and goes. I started keeping a log in Jan 2020 so when I have a bad episode I can look back and remember that I have dealt with this before and it will pass.
Yesterday I had a particularly bad day and had a panic attack and had to leave work. Like many others I have silent reflux and have recently increased my omeprazole to 40mg daily. I have a doctor appt next week to see if i need to get on something stronger.
My symptoms are feeling like I have to take a deep breath but having to yawn or contort my body in order to get that full breath satisfaction. Then the process repeats again. I have to take meds to get to sleep at night because it’s impossible to fall asleep when you feel like you can’t breathe. I have a finger pulse ox by my bed so I can show myself that I am getting enough air.
Although I think the air hunger is likely caused by my silent reflux, I think my anxiety makes it worse. It helps so much ti reas that others are living with the same issue. I hate it for everyone but it also shows me that this is a symptom that we can deal with and it’s not life-threatening.

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Have ou looked into food sensitivties as the cause of reflux? Removing gluten and dairy stopped my reflux of 50 years. A good diet resource to lower inflammation and reflux is the Facebook AIP group. Also checking out possible autoimmune causes of the food senstivities may help. An ANA test can help identify or eliminate autoimmune or infectious causation of the reflux. I also read not long ago, dont remember the source, only that it was reliable, that long term use of drugs that shut down stomach acids can shorten life. Look for causation of our digestive problem, if you have not already done so, and you may find solutions that are better than trying to subdue worsening symptos. So many docs today do not understand autoimmune diseases. All the best for your insght and healng.

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@brandelyncon

I have had this same issue for over ten years. It comes and goes. I started keeping a log in Jan 2020 so when I have a bad episode I can look back and remember that I have dealt with this before and it will pass.
Yesterday I had a particularly bad day and had a panic attack and had to leave work. Like many others I have silent reflux and have recently increased my omeprazole to 40mg daily. I have a doctor appt next week to see if i need to get on something stronger.
My symptoms are feeling like I have to take a deep breath but having to yawn or contort my body in order to get that full breath satisfaction. Then the process repeats again. I have to take meds to get to sleep at night because it’s impossible to fall asleep when you feel like you can’t breathe. I have a finger pulse ox by my bed so I can show myself that I am getting enough air.
Although I think the air hunger is likely caused by my silent reflux, I think my anxiety makes it worse. It helps so much ti reas that others are living with the same issue. I hate it for everyone but it also shows me that this is a symptom that we can deal with and it’s not life-threatening.

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We are on the same page. I feel the same way, I have to contort my body sometimes too. You know what's interesting? You always fall asleep right? and you wake up the next day. This condition can't kill you, so what if we are doing it to ourselves?

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Hey guys, I just came across a link that you guys might find interesting:
Has anyone heard of the Alexander technique?


That's the video for it. I just purchased the $89 course and I am hoping it helps. Not a very big investment honestly. I have spent well over $1000-$2000 on doctor visits over the last year, mainly because I went to the Mayo Clinic in Az and National Jewish Health in Denver, and traveling isn't cheap.

Anyway, basically, the idea is we basically built poor breathing habits which led to this issue of "non-medical air hunger" and this program essentially tries to take your body back to its natural way of breathing. I remember someone saying something along the lines of "maybe we just forgot how to breath" and idk, maybe they are onto something. Let me know if anyone has heard about this or what you think about it. I am giving it a shot and can tell everyone how my experience is.

Tahir

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@brandelyncon

I have had this same issue for over ten years. It comes and goes. I started keeping a log in Jan 2020 so when I have a bad episode I can look back and remember that I have dealt with this before and it will pass.
Yesterday I had a particularly bad day and had a panic attack and had to leave work. Like many others I have silent reflux and have recently increased my omeprazole to 40mg daily. I have a doctor appt next week to see if i need to get on something stronger.
My symptoms are feeling like I have to take a deep breath but having to yawn or contort my body in order to get that full breath satisfaction. Then the process repeats again. I have to take meds to get to sleep at night because it’s impossible to fall asleep when you feel like you can’t breathe. I have a finger pulse ox by my bed so I can show myself that I am getting enough air.
Although I think the air hunger is likely caused by my silent reflux, I think my anxiety makes it worse. It helps so much ti reas that others are living with the same issue. I hate it for everyone but it also shows me that this is a symptom that we can deal with and it’s not life-threatening.

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Wow @brandelyncon, I'm sorry you've been dealing with this for so long. It's been about the same time amount of time for me.

Does the dosage increase of the omeperazole help? I get breakout reflux every now and then but so far have resisted going the higher dosage especially because at some point I would like to try to ween off of it and would be more difficult with a higher dosage.

I've thought for a while now that there may be a connection between the reflux and air hunger. Possibly inflammation of some sort, nerve damage, or something else. It's just a hunch but I do see many people in this thread with our similar breathing issue also having GI issues like reflux and reflux disease.

Have you explored breathing exercises or anything to help with the breathing?

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@tahiristan

We are on the same page. I feel the same way, I have to contort my body sometimes too. You know what's interesting? You always fall asleep right? and you wake up the next day. This condition can't kill you, so what if we are doing it to ourselves?

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@tahiristan, it's such a mystery isn't it? Even though we *feel* the lack of air in our lungs, there clearly is not an actual lack of air or oxygen since we are still functioning normally. But the feeling is so real. Sometimes I do wake up with it bothering me some, but otherwise am able to get a normal nights rest. So even though there is something physical there that is a mystery, there is also a mental aspect to it that perhaps our minds are making it out to be worse than it is somehow. Especially in the beginning for me it was a mental battle, but after I kept telling myself over time that I am fine and that this won't kill me, who knows- maybe that contributed to a lessening of the symptoms.

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