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

I am glad you are pursuing answers and are looking for different things that might help. It’s been a journey for me over the years, and I’ve learned to manage it through breathing exercises and controlled physical exercise. But I’m like you, I am always researching and won’t stop until
I find an answer. Not just for me, but my hope is to find an answer for everyone else who is dealing with this condition.

I like @merpreb’s comment about how dyspnea can manifest itself differently for many people. This forum definitely has people that have varying degrees and types of shortness of breath. But hopefully we will work through our own conditions together and one day find a solution that works for everyone! 🙂

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Thanks, I will keep in touch on this forum.

🦋

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@kspowell

Tracheal Bronchial Malacia is a condition that causes dyspnea. It is a condition whereby your trachea collapses when you exhale. Many have this condition without being aware. It is diagnosed with a special CTscan that pictures the trachea as one breathes.

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Oh I will mention that to my Dr.
Thanks

Julia

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Are you or were you ever a smoker.

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Gabe, I discovered your initial post today which was helpful. Sob led me to my local physician for a consultation. On receiving the results of an x-ray, I promptly made an appointment at Mayo and received a diagnosis of stage four nsclc. I decided to push myself physically and resumed walking twice a day. I'm also working out with dumbbells and free weights. Although this has helped, more is needed to try and eliminate sob. My medical team does not have an answer. You renewed my interest in the Buteyko method for breathing. I tried it in the past for a few days and did not experience any relief. I certainly will use the method several times daily. Other solutions to minimize or eliminate sob would be appreciated.

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@daddyo7777

Well the lump in the throat had to with some breathing as the food will both not come up or down as it just feels like it is stuck there …..The thing is. That the next day you still have that feeling and maybe days after …. What I cannot figure out now is before it would feel ok like maybe after a week but not this time ….. Now at home in my home I am ok but when I go out somewhere and need to walk some distance then comes the SOB after about a block which never use to happen before …. Now did the so called Covid have anything to do with this as our whole family had it about a year ago … With me it was basically headache , coughing and phlegm problem at that time as the last two things still linger in my system,,,, so I am not really sure of what the heck is going on with this …….

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Do you have GERD? I had similar symptons of feeling like food was stuck in my throat, My Gasterologist prescribed Lansoprozole for me to take at night 30 minutes before eating and am doing much better. I think Gerd and MAC lung disease are connected somehow.

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@tonyagregg

Update...i have been on Protonix for 2 weeks now and it has been 95% back to normal. Not only have I taken the medicine, but I have changed up my diet. I still feel at times a lump in my throat. I will have my ultrasound this Thursday of my thyroid to see if it is pressing on my esophagus. ALL my labs including thyroid panel are normal. I have notice when I eat certain things such as meat or spicy foods I start to feel the lump more prominent and the urge to take a deep breath. My next step after my ultrasound will be to follow up with an ENT because the protonix has helped tremendously so maybe he will need to scope me to confirm the diagnosis of silent reflux. I understand how all of you guys feel because I was there and found myseld becoming depressed. I will keep you informed, so maybe I can help someone else. I have come to a conclusion through all this that when I had to constantly take a deep or yawn, I thought I will just have to live with it. NO...dont live with it because it is not normal! Read about it, research it and educate yourself on what it may be. EVERTHING stems from your gut. For me I read so much about acidic food and how it effects reflux and started eating better and started to notice when I ate certain things I could feel the dyspnea creeping back up. I hope what I post can help you guys and let me know if you have any questions.

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Thank you for this post and your update! I am going to be speaking with my doctor about getting on protonix. I really do think I also suffer from silent reflux. I always just dealt with it before but now that it’s causing SOB it’s more concerning. Maybe too much info but there will be times where I feel like throwing up after eating and the acid burns the back of my throat. Or other times where my stomach feels like it’s on fire, but no heartburn. It’s terrible! I also have noticed that I burp a lot more frequently and they feel “trapped” making it difficult to breath.

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@gabrielm

Wow @tonyagregg, that's great that you found the answer! So glad you are back to normal! Crazy that a food could cause such a symptom as SOB, but that's the way it goes. I will definitely look into food allergies; it's certainly possible I have been eating something consistently that could be the cause. Worth a shot to look into. Thanks for the good news update!

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After reading this post I am curious if maybe it’s something I am eating as well. I do lift heavy at CrossFit and I’m curious if I’m more susceptible to a certain food. I don’t eat any type of nuts but the one thing I can think of that I consistently eat is peanut butter. Maybe I’ll try and cut it out for a week and see how I feel. I actually took a food intolerance test a while back for skin/breakout issues and since then I’ve cut out beef and tuna and my skin has completely cleared up. I know first hand how closely related skin and gut health is but seems like I am cutting out so many foods just to feel “normal” which is really stressful.

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@haleynicole1223

Thank you for this post and your update! I am going to be speaking with my doctor about getting on protonix. I really do think I also suffer from silent reflux. I always just dealt with it before but now that it’s causing SOB it’s more concerning. Maybe too much info but there will be times where I feel like throwing up after eating and the acid burns the back of my throat. Or other times where my stomach feels like it’s on fire, but no heartburn. It’s terrible! I also have noticed that I burp a lot more frequently and they feel “trapped” making it difficult to breath.

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That burning feeling in the back of your throat is a clear sign of reflux - acid escaping from where it is supposed to be. There are a few things you can try to avoid that feeling after eating - one is to limit liquids before and during meals to sips of water, milk or mild herbal teas. This will keep your stomach from becoming so full. Another is to eat smaller, more frequent meals.
I do have a question - heavy lifting in CrossFit often goes with a life committed to healthy eating, which often includes supplements, smoothies and protein powders or drinks. Many supplements and protein powders come loaded with unfamiliar herbs, minerals & fillers, as well as pea or bean proteins. Your body may be sensitive or allergic to one or more of them. I was using a protein supplement that changed its formula to include tree nut extract, and suddenly it was making me ill!

Might this describe your lifestyle? If so, perhaps stopping those things for a few weeks, then adding back one at a time very slowly could help you find the problem.
Sue

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@haleynicole1223

After reading this post I am curious if maybe it’s something I am eating as well. I do lift heavy at CrossFit and I’m curious if I’m more susceptible to a certain food. I don’t eat any type of nuts but the one thing I can think of that I consistently eat is peanut butter. Maybe I’ll try and cut it out for a week and see how I feel. I actually took a food intolerance test a while back for skin/breakout issues and since then I’ve cut out beef and tuna and my skin has completely cleared up. I know first hand how closely related skin and gut health is but seems like I am cutting out so many foods just to feel “normal” which is really stressful.

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@haleynicole1223, you maybe indeed be more susceptible to certain foods when it comes to heartburn. I know my family (parents mostly) suffer from heartburn after eating certain foods so they try and avoid those foods as much as possible. I like @sueinmn’s advice to limit liquids before and after meals. But it helps to identify what foods might directly cause heartburn and avoid those foods wherever possible

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I started having shortness of breath in Dec 2019 till today which is more than 2 years some days it’s fine and some days I’m literally suffering it’s like there’s no breath to take at all I would just try to yawn to catch some breath but that doesn’t always help, I went to more than 5 doctors over the 2 years and made tests everything was fine. some days I’m not able to sleep because of it and some days it’s better but it NEVER goes away never !!

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