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.

Hi @criley2k. First of all, I'm so sorry that you have been dealing with this for so long. I know how you feel! It's been 7 years for me since it all began. I find it strange that your muscles are weak from the breathing condition. I wonder if there is something else going on that's causing all of this (breathing + muscle weakness). With all of the doctors you've seen, I assume they've done a bunch of tests that show everything normal.

My respiration has not reset to normal, but it has been somewhat stable for the past 2 years or so. I still struggle with the air hunger, but it's not as bad it was when it started. I do moderate daily exercise which includes about a 2 mile walk and then moderate weight lifting. These seem to help keep it stable. I also do "maintenance" Buteyko exercises about every other day (I do Steps in the morning). I have stopped measuring my CP because, like you, I couldn't really get it up and keep it that way. So I just make sure I can do 90 - 100 steps and if it gets to where I can do 90 and no more, I increase frequency to daily and that seems to get the Steps score up to around 100 after a few days. So that's how I maintain Buteyko. It doesn't help enough for me to do it daily or more than once per day. It provided great relief in the beginning, but like you experienced, it has since provided diminishing returns.

I am able to do pretty much everything normal - I can function at work just fine with not much thought to my breathing. Sleeping is hit or miss; some nights I can sleep just fine in my bed and others I struggle to breathe so I have to sleep sitting up on the couch. I can do my walking just fine, but weightlifting I'm limited by my air hunger. The harder I push, the stronger the air hunger so I can't push too hard when I do exercise. Cardio is pretty much out. Every now and then I'll do a very light jog if I can handle it, but I use my breathing as a gauge. I don't push it too hard like I used to. That seems to make it worse.

So now, I'm not even sure that it's "hyperventilation". I really feel like I don't hyperventilate. In observing my own breathing, it is very normal. It's just that the air hunger starts to creep in after a few breaths, regardless of how fast or slow I'm breathing. So something, in my opinion, is causing this feeling of persistent air hunger that nobody can put their finger on. My hunch is that it could be gastro related. Many of us on this forum seem to have some sort of GI issues. Though correlation does not equal causation, I can't ignore the number of people that have what we have also have GI issues.

So that's where I am today. It's tolerable and stable, but still a bit uncomfortable. It's been this way for a couple of years. Your natural remedies are very interesting. Same thing happened to me when I took vitamin B12 and iron, as I'm sure you read in the OP. Don't know why it would've helped for a short while, then come right back.

Keep in touch, I'd like to know of any progress and I'll share any of mine as I continue to search for answers.

REPLY
@gabrielm

Hi @criley2k. First of all, I'm so sorry that you have been dealing with this for so long. I know how you feel! It's been 7 years for me since it all began. I find it strange that your muscles are weak from the breathing condition. I wonder if there is something else going on that's causing all of this (breathing + muscle weakness). With all of the doctors you've seen, I assume they've done a bunch of tests that show everything normal.

My respiration has not reset to normal, but it has been somewhat stable for the past 2 years or so. I still struggle with the air hunger, but it's not as bad it was when it started. I do moderate daily exercise which includes about a 2 mile walk and then moderate weight lifting. These seem to help keep it stable. I also do "maintenance" Buteyko exercises about every other day (I do Steps in the morning). I have stopped measuring my CP because, like you, I couldn't really get it up and keep it that way. So I just make sure I can do 90 - 100 steps and if it gets to where I can do 90 and no more, I increase frequency to daily and that seems to get the Steps score up to around 100 after a few days. So that's how I maintain Buteyko. It doesn't help enough for me to do it daily or more than once per day. It provided great relief in the beginning, but like you experienced, it has since provided diminishing returns.

I am able to do pretty much everything normal - I can function at work just fine with not much thought to my breathing. Sleeping is hit or miss; some nights I can sleep just fine in my bed and others I struggle to breathe so I have to sleep sitting up on the couch. I can do my walking just fine, but weightlifting I'm limited by my air hunger. The harder I push, the stronger the air hunger so I can't push too hard when I do exercise. Cardio is pretty much out. Every now and then I'll do a very light jog if I can handle it, but I use my breathing as a gauge. I don't push it too hard like I used to. That seems to make it worse.

So now, I'm not even sure that it's "hyperventilation". I really feel like I don't hyperventilate. In observing my own breathing, it is very normal. It's just that the air hunger starts to creep in after a few breaths, regardless of how fast or slow I'm breathing. So something, in my opinion, is causing this feeling of persistent air hunger that nobody can put their finger on. My hunch is that it could be gastro related. Many of us on this forum seem to have some sort of GI issues. Though correlation does not equal causation, I can't ignore the number of people that have what we have also have GI issues.

So that's where I am today. It's tolerable and stable, but still a bit uncomfortable. It's been this way for a couple of years. Your natural remedies are very interesting. Same thing happened to me when I took vitamin B12 and iron, as I'm sure you read in the OP. Don't know why it would've helped for a short while, then come right back.

Keep in touch, I'd like to know of any progress and I'll share any of mine as I continue to search for answers.

Jump to this post

@gabrielm- Good morning.SOB or air hunger can be caused by many things. An, although there might be many causes I have learned that practicing breathing exercises has helped me open up my chest wall so that I can breathe easier. My new Pulmonologist has also changed 2 of my medications to 1 called Trelegy. Everyone I have spoken to on Connect who have also been given this have felt much better.
https://www.healthline.com/health/how-to-increase-lung-capacity#diaphragmatic-breathing
I love "correlation does not equal causation." As yet there is no firm consensus on why people who have COPD often get GERD but there does seem to be a connection.
https://www.verywellhealth.com/how-common-is-gerd-in-copd-914675
Since we last spoke you seem to have improved your breathing control. I agree that you probably do not hyperventilate. How did you determine this?

@criley2k- Welcome to Connect. Not being able to take a deep breath or have SOB is quite scary. But hyperventilation is different than SOB. Hyperventilation is when you start to breathe very fast. Low carbon dioxide levels lead to narrowing of the blood vessels that supply blood to the brain. This reduction in blood supply to the brain leads to symptoms like lightheadedness and tingling in the fingers. Severe hyperventilation can lead to loss of consciousness. For others, this condition occurs as a response to emotional states, such as depression, anxiety, or anger. When hyperventilation is a frequent occurrence, it’s known as hyperventilation syndrome. There are many different causes for hyperventilation. Stress usually does it for me.
How have you come to determine that you are hyperventilating?

REPLY

Hello everyone--I'm still experiencing shortness of breath. I did start lexapro 8 weeks ago, out of desperation but it has not improved my SOB. I am wondering if anyone has tried an elimination diet and had any benefit. I am thinking about trying the Whole30, which is just that--it eliminates dairy, soy, sugar, grains. Today my SOB feels like it is almost stemming from my throat. It's like an odd sensation from the top of my throat all the way down. I also feel a continued strange sensation in my upper left side of my chest. (I have seen the cardiologist several times--he thinks I'm crazy---and he is confident my issue is not heart related). I am experiencing pretty severe health anxiety as a result of this. Today I tried to focus on not taking deep breaths in to alleviate the air hunger but it didn't seem to help...
Has anyone discovered that silent reflux was actually the cause of the SOB? OR that an elimination diet was helpful?
Thanks!

REPLY
@nycmom

Hello everyone--I'm still experiencing shortness of breath. I did start lexapro 8 weeks ago, out of desperation but it has not improved my SOB. I am wondering if anyone has tried an elimination diet and had any benefit. I am thinking about trying the Whole30, which is just that--it eliminates dairy, soy, sugar, grains. Today my SOB feels like it is almost stemming from my throat. It's like an odd sensation from the top of my throat all the way down. I also feel a continued strange sensation in my upper left side of my chest. (I have seen the cardiologist several times--he thinks I'm crazy---and he is confident my issue is not heart related). I am experiencing pretty severe health anxiety as a result of this. Today I tried to focus on not taking deep breaths in to alleviate the air hunger but it didn't seem to help...
Has anyone discovered that silent reflux was actually the cause of the SOB? OR that an elimination diet was helpful?
Thanks!

Jump to this post

My shortness of breath is all but gone. It still happens occasionally if I get dehydrated or get sloppy with my diet. I didn't do a specific diet but changed to a primarily plant based way of eating. I really focus on getting minerals in my diet via greens, powders and drinking lots of water...alkaline and mineral. I also take potassium and magnesium. I think I posted previously where someone cured their SOB with baking soda because it neutralizes acids in the body. This may not work for everyone. It took a minute to figure it out but at this point I think I'm good. Lost a few pounds too. Keep searching guys. Something will work. You can't lose hope. You might also want to research magnesium bicarbonate water. Lots of info about it on line. Helps with acidity.

REPLY
@helpnywhereucan

My shortness of breath is all but gone. It still happens occasionally if I get dehydrated or get sloppy with my diet. I didn't do a specific diet but changed to a primarily plant based way of eating. I really focus on getting minerals in my diet via greens, powders and drinking lots of water...alkaline and mineral. I also take potassium and magnesium. I think I posted previously where someone cured their SOB with baking soda because it neutralizes acids in the body. This may not work for everyone. It took a minute to figure it out but at this point I think I'm good. Lost a few pounds too. Keep searching guys. Something will work. You can't lose hope. You might also want to research magnesium bicarbonate water. Lots of info about it on line. Helps with acidity.

Jump to this post

Thank you so much. I have been intrigued by the alkaline idea. Did you give up all things acidic like coffee, alcohol etc? One reason I don't want to do Whole30 is that it tends to be quite meat heavy since you can't have tofu or beans and I don't think my body responds well to a lot of meat. How long did you have shortness of breath?

REPLY
@helpnywhereucan

My shortness of breath is all but gone. It still happens occasionally if I get dehydrated or get sloppy with my diet. I didn't do a specific diet but changed to a primarily plant based way of eating. I really focus on getting minerals in my diet via greens, powders and drinking lots of water...alkaline and mineral. I also take potassium and magnesium. I think I posted previously where someone cured their SOB with baking soda because it neutralizes acids in the body. This may not work for everyone. It took a minute to figure it out but at this point I think I'm good. Lost a few pounds too. Keep searching guys. Something will work. You can't lose hope. You might also want to research magnesium bicarbonate water. Lots of info about it on line. Helps with acidity.

Jump to this post

@helpnywhereucan- Good morning. Your news is so good. How did you hear about drinking baking soda and the ph of your water and diet?

REPLY

Everyone, how many have you had dry nose and shortness of breath?

REPLY
@saigurucharan

Everyone, how many have you had dry nose and shortness of breath?

Jump to this post

@saigurucharan I have dry nose and SOB but I'm on O2 24/7 .

REPLY

@saigurucharan- Welcome to Mayo Connect. I always have a dry nose because I either have the AC on or the heat. It's filtered air because of my lung cancer and SOB. I use an over the counter steroidal nose spray and I use a netty pot, but more frequently a saline nasal spray that helps keep your nose wetness more balanced. And it's harmless, you can use it as frequently as you need it. Do you know what the cause of your SOB is?

REPLY
@bb729

@saigurucharan I have dry nose and SOB but I'm on O2 24/7 .

Jump to this post

@bb729- Have you tried nose gel? It's good, really good and soothes irritated nasal passages.

REPLY
Please sign in or register to post a reply.