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.

The only reason I asked is pay attention to other triggers. I also noticed that I have upper back pain in the rhomboid muscle. Whenever it is extremely uncomfortable is when my breathing difficulties are there. I put 2 and 2 together after a recent massage and a little relief on my back. I realized I was able to breathe again. Let’s see if it holds up

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Profile picture for floridaguy123 @floridaguy123

The only reason I asked is pay attention to other triggers. I also noticed that I have upper back pain in the rhomboid muscle. Whenever it is extremely uncomfortable is when my breathing difficulties are there. I put 2 and 2 together after a recent massage and a little relief on my back. I realized I was able to breathe again. Let’s see if it holds up

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I went and saw a pulmonologist a couple days ago and my doctor thought right away that I had asthma. I did the asthma test and passed it with flying colors so no asthma. He still said to try using an inhaler since he has no idea what it could be. I won't be doing that I don't think. I went to my ENT doctor yesterday and they diagnosed me with silent reflux by using a camera to see down my throat! She said all of our symptoms can be caused by this as other people here have stated. I've start taking Omeprazole 40mg every night when I'm going to bed. I really hope this will help me figure this out!!! I'm having high hope right now.

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Profile picture for oliviah9 @oliviah9

I went and saw a pulmonologist a couple days ago and my doctor thought right away that I had asthma. I did the asthma test and passed it with flying colors so no asthma. He still said to try using an inhaler since he has no idea what it could be. I won't be doing that I don't think. I went to my ENT doctor yesterday and they diagnosed me with silent reflux by using a camera to see down my throat! She said all of our symptoms can be caused by this as other people here have stated. I've start taking Omeprazole 40mg every night when I'm going to bed. I really hope this will help me figure this out!!! I'm having high hope right now.

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Hi @oliviah9 how are you taking the 40mg? All at once or 20 and 20 at different times? Did the doc give you a script or is it just 2 Prilosec? I am asking because I too definitely have reflux that also causes me some grief..... I had it my whole life but managed it but now that the big 40 hit things get less tolerable. TIA

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Profile picture for floridaguy123 @floridaguy123

Hi @oliviah9 how are you taking the 40mg? All at once or 20 and 20 at different times? Did the doc give you a script or is it just 2 Prilosec? I am asking because I too definitely have reflux that also causes me some grief..... I had it my whole life but managed it but now that the big 40 hit things get less tolerable. TIA

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I'm taking one 40mg capsule at night so all at once. Yes, my doctor gave me a prescription for this. I will definitely send some updates on here as I continue with it!!

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I also forgot to mention that my doctor recommended me to drink some alkaline water. It's pretty much at every store, but it is a little pricey. She said it will help balance the ph in your stomach and it's filled with great electrolytes, so I'm also trying this out!

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Profile picture for helpnywhereucan @helpnywhereucan

Hey all...just wanted to stop by. Hope everyone is getting to the bottom of their issue. As I stated in previous posts, I tried the natural route. My doctor stated it was anxiety. I'm not buying it.

Anyway...I'm feeling much better. Here's what I did:

Ate healthier, including potassium rich foods; potassium helps with lung expansion and contraction and alkalization

Focused on getting more greens and vegetables to combat acidity. I took vegetables and powdered supplement (this will help if you have GERD)

Made sure I was getting ample amounts of magnesium. If you decide to supplement, do your research. Magnesium can cause loose stools. Find the form that works for YOU. Magnesium helps with anxiety, asthma and allergies and a whole host of other things.

Get adequate Vitamin D. I get lots of sunlight, I supplement. Vitamin D also helps with certain lung infections and certain forms of asthma.

Take Cod Liver Oil: Vitamins A & D are important for lung health. Cod liver oil has also been shown to combat lung disorders including infections like pneumonia and asthma ( I took it just in case my SOB was related to that) https://hvmn.com/blog/supplements/cod-liver-oil-benefits-of-this-super-supplement

A take a good food based multivitamin

I take a trace mineral supplement occasionally and eat small amounts of salt that contains trace minerals. Sodium helps regulate electrolytes. Doctors have told us not to eat it, but we need small amounts to be healthy

I maintain adequate hydration. In addition to regular water, I drink alkaline water that contains trace minerals

I walk every day. I read exercise helps balance o2/ co2 levels.

These are all the things I've done. I wanted to leave no stone un-turned. I still experience SOB from time to time if I get dehydrated or stray too far from my diet but I can tell it's on its last leg. Compared to what it used to be, I can handle a minute or so of it, here and there. Just like it took time for nutrients to deplete, it will take time to build them back up. I hope to come back in a few months and tell you it's completely gone. Fingers crossed.

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Hi! Thanks for your post!! Is your SOB still continuing to get better?

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Profile picture for floridaguy123 @floridaguy123

Does anyone here complaining of this shortness of breath have upper back or neck pain?

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Yes, me! Every since I got my Peloton bike. My massage lady also said two vertebrae in my neck are straight and should be curved.

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Profile picture for kjconrad @kjconrad

Hi! Thanks for your post!! Is your SOB still continuing to get better?

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It is. For me I think it may have boiled down to a few things. Making sure I control acidity...I too drink alkaline water and consume green powders and juices. Getting the proper electrolytes...main ones being magnesium and potassium and lastly staying hydrated. Since being acidic and dehydration mess with electrolytes, I could probably just say it's an electrolyte issue. I think it will just take a bit more time but it's sporadic and extremely tolerable now. I can go days without it happening at all. As soon as I eat poorly or get dehydrated...there she blows! I feel best with lots of water, greens, and a potassium rich diet ( I also supplement potassium no more than one dose per day- be careful with this one guys it can cause heart arrhythmia) and magnesium as well as other things I mentioned in previous posts to cover all basis . Warrior on you guys!

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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.

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