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.

@renem97

Yeah sure because doctors know everything.

They do couple of tests and if they don’t find anything, they tell you it’s anxiety. NO ITS NOT!

It can still be a physiological problem. Just because the tests didn’t find anything doesn’t mean it’s not there.

I also struggled with SOB, did a lot of tests and they didn’t find anything, and they also told me it was anxiety. And guess what - it was not!

I stopped eating gluten and dairy and it went away. Later I found out it was because my esophagus was swelling from allergy.

So don’t give crappy advice if you don’t know anything about it!

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This is interesting. I do feel like there is definitely something physiological with my throat. I think then i start to have a psychological response to it and the whole thing is just like a giant negative feedback loop. It is very difficult to tell if anxiety is causing the issue, or the issue is there and it causes more anxiety.

I also thought it might be allergy related, as I said I got tested for food allergies, at one point I had started eating a lot more nuts and thought that might be it. I cannot remember if they tested for gluten. Do you know how long it took your symptoms to go away when you removed the gluten? I could give that a try.

I also live in an extremely high allergy area in the Ohio River valley. When my symptoms are bad it feels like i have a deep congestion in my throat or kind of like you said a swelling in my esophagus, almost down to where my throat meets my chest.

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@jasong

This is interesting. I do feel like there is definitely something physiological with my throat. I think then i start to have a psychological response to it and the whole thing is just like a giant negative feedback loop. It is very difficult to tell if anxiety is causing the issue, or the issue is there and it causes more anxiety.

I also thought it might be allergy related, as I said I got tested for food allergies, at one point I had started eating a lot more nuts and thought that might be it. I cannot remember if they tested for gluten. Do you know how long it took your symptoms to go away when you removed the gluten? I could give that a try.

I also live in an extremely high allergy area in the Ohio River valley. When my symptoms are bad it feels like i have a deep congestion in my throat or kind of like you said a swelling in my esophagus, almost down to where my throat meets my chest.

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I dont remember exactly. It still comes back sometimes. At that time my diet was horrible, I ate a lot of gluten and dairy.

After I stopped and started doing breating excercises alongside running and waking up early, it resolved quickly.

Yours do sound like it could be esophagus related. Try to check esophagitis symptoms. If you have trouble swallowing, it could be eosinophilic esophagitis. Thats an allergic reaction that causes swelling of the esophagus. Try google that and see if the symptoms match yours.

For me also coffee and dark chocolate are huge triggers. It takes like 2 pieces of dark chocolate and the symptoms come back.

So if you are sure it has nothing to do with your lungs, its probably esophagus. Or could be anxiety, but I dont really believe in that. Really think about your diet. These things arent direct feedback, you could eat something and have a reaction like 20 hours later. BTW nuts could also be a trigger, Im allergic to them as well.

Go see GI doctor and ask for upper endoscopy, they will see if your esophagus is inflamed.

Also, try water fasting for a few days. I was water fasting for 96 hours and thats when I experienced what it means to breathe easily for the first time in 10 years. If you can breathe better on fasting, I would bet its esophagus related.

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@dampiera

I have some questions regarding some additional symptoms that I have that may or may not be related.

1. Do you notice that your symptom severity increases with, or can be set off by, hunger?

2. Do you experience a gradual buildup of severity or are you just suddenly hit with it?

3. What are the most common triggers for you?

4. Have you tracked your food intake and sleep quality for the periods prior to symptoms?

5. Do you have sleep apnea?

6. (This one is bizarre) Do you feel pain under your tongue when running?

7. Do you ever experience shakiness or weakness during an episode?

8. Have you had bloodwork that indicated inflammation in your body?

9. Does cold air and/or ice cold water alleviate symptoms?

10. Do you notice post nasal drip accompanying the occurrences?

11. How old were you when you began taking a deeper breath for every few “normal” breaths?

12. Do you cough anything up or clear your throat during episodes?

For me, cold air and/or cold water helps. I have varying degrees of severity and my symptoms ramp up slowly.

The “one big breath every few breaths” has been happening since I was a kid. The older I’ve gotten the more frequently it has progressed from just that (which is ever-present) to severity of a level that prevents me from getting out of a chair. The more severe level includes shakiness/weakness and lightheadedness.

My O2 is always normal during these severe episodes, as is my blood sugar.

My blood work has indicated some inflammation.

I’m really looking forward to hearing what everyone’s experiences are regarding these questions!

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I have had breathing issues for years.... sleep apnea, asthma, allergies, I can't get enough exercise due to neuropathy in both legs.

Recently I began taking a powder form of high molecular hyaluronic acid. I mix the powder with distilled water in a 1% ratio. The HA forms a slight gel; I then mix an ounce or two once daily with any beverage and drink it.

HA is beginning to be used to treat asthma at the Cleveland Clinic, and I suspect COPD will be included in the near future. The liquid form, I am told, is better then the capsules since it gets into the blood stream quicker. It has helped me to the point I no longer need the rescue inhaler as often, and my lungs feel more clear. There are several sources online for bulk HA powder, and it is not expensive. I buy mine through Bulk Supplements in Henderson, NV.

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@renem97

I dont remember exactly. It still comes back sometimes. At that time my diet was horrible, I ate a lot of gluten and dairy.

After I stopped and started doing breating excercises alongside running and waking up early, it resolved quickly.

Yours do sound like it could be esophagus related. Try to check esophagitis symptoms. If you have trouble swallowing, it could be eosinophilic esophagitis. Thats an allergic reaction that causes swelling of the esophagus. Try google that and see if the symptoms match yours.

For me also coffee and dark chocolate are huge triggers. It takes like 2 pieces of dark chocolate and the symptoms come back.

So if you are sure it has nothing to do with your lungs, its probably esophagus. Or could be anxiety, but I dont really believe in that. Really think about your diet. These things arent direct feedback, you could eat something and have a reaction like 20 hours later. BTW nuts could also be a trigger, Im allergic to them as well.

Go see GI doctor and ask for upper endoscopy, they will see if your esophagus is inflamed.

Also, try water fasting for a few days. I was water fasting for 96 hours and thats when I experienced what it means to breathe easily for the first time in 10 years. If you can breathe better on fasting, I would bet its esophagus related.

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Hmm this has given me a lot to think about. I also started drinking coffee a few years ago around the same time my symptoms started. And I eat a small piece of dark chocolate daily in a smoothie.

Interestingly I eating very little grains for a couple of years before this started. I would not say I was full paleo, definitely I would cheat, but minimal consumption of grains. My body responded very well to having no gluten, I rapidly lost body fat and was in the best shape of my life. I wonder if cutting out the grain then bringing it back had a negative effect or possibly like increased my sensitivity to gluten.

I may try and fast or only eat meat and fruits and vegetables for a few days and see if i notice improvement. I could then slowly bring some things back and see if I notice a reaction.

I was a smoker which does concern me, but again I saw a pulmonologist he said my heart size was good and he didn't see anything in a chest xray. I do not think it is my lungs. I can breathe fine and my blood oxygen levels are fine. It really seems to be my esophagus, or anxiety, or both. I exercise almost daily.

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Glad to help, I hope it will alleviate the symptoms.

I used to be a smoker as well and I had breathing problems ever since. I had multiple examinations from asthma dosctors and heart and they always said everything was okay, even though I subjectively couldn’t breathe.

Only now I see it was my esophagus.

I learned long time ago that doctors don’t help with this kind of stuff. You gotta help yourself and it always comes down to diet.

Try to find your triggers and I believe you will be better

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@dennismyhre

I have had breathing issues for years.... sleep apnea, asthma, allergies, I can't get enough exercise due to neuropathy in both legs.

Recently I began taking a powder form of high molecular hyaluronic acid. I mix the powder with distilled water in a 1% ratio. The HA forms a slight gel; I then mix an ounce or two once daily with any beverage and drink it.

HA is beginning to be used to treat asthma at the Cleveland Clinic, and I suspect COPD will be included in the near future. The liquid form, I am told, is better then the capsules since it gets into the blood stream quicker. It has helped me to the point I no longer need the rescue inhaler as often, and my lungs feel more clear. There are several sources online for bulk HA powder, and it is not expensive. I buy mine through Bulk Supplements in Henderson, NV.

Jump to this post

That is great info, thank you! I will order some today!!!

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@renem97

Yeah sure because doctors know everything.

They do couple of tests and if they don’t find anything, they tell you it’s anxiety. NO ITS NOT!

It can still be a physiological problem. Just because the tests didn’t find anything doesn’t mean it’s not there.

I also struggled with SOB, did a lot of tests and they didn’t find anything, and they also told me it was anxiety. And guess what - it was not!

I stopped eating gluten and dairy and it went away. Later I found out it was because my esophagus was swelling from allergy.

So don’t give crappy advice if you don’t know anything about it!

Jump to this post

Yeah, it is very common for doctors to blame anxiety for things that they just can’t find a cause for.

It reminds me of the days when “hysteria” was a medical diagnosis for aaaallll kinds of things (in women). These days, in addition to anxiety, doctors tell is that it is menopause because they can’t find a cause and “you’re at that age”. That just tells me that the doctor is not a good doctor. A good doctor will say “I don’t know. Here is a possible next step.”

Any patient’s search is limited by the availability of technology and the experience and determination of their doctor.

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How many of you are using a CPAP? There is a correlation between GERD and CPAP use. I tried to share a few links here but it wouldn’t allow me to. I’m going to try a different way. Copy the items below and add the appropriate w w w. before each in your browser bar.

The first details the correlation between CPAP and GERD. The second details the symptoms of “Silent Reflux”, (I hadn’t realized that it is a gaseous mist rather than a liquid.) and the third details the pulmonary complications that arise from GERD.

ncbi.nlm.nih.gov/pmc/articles/PMC3525982/

ncbi.nlm.nih.gov/pmc/articles/PMC3513884/

ncbi.nlm.nih.gov/pmc/articles/PMC3525982/

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@renem97

Yeah sure because doctors know everything.

They do couple of tests and if they don’t find anything, they tell you it’s anxiety. NO ITS NOT!

It can still be a physiological problem. Just because the tests didn’t find anything doesn’t mean it’s not there.

I also struggled with SOB, did a lot of tests and they didn’t find anything, and they also told me it was anxiety. And guess what - it was not!

I stopped eating gluten and dairy and it went away. Later I found out it was because my esophagus was swelling from allergy.

So don’t give crappy advice if you don’t know anything about it!

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I had a shortness of breath upon minimal exertion problem for nearly ten years, along with chest pain/ stinging in left side and down my arm. My oxygen levels were 💯…I had a lot of eye rolling after all the tests at major hospitals cleared me. (I’m a female so I started taking my husband Along to validate my message. I just learned to live with it. I went from healthy working out at the gym 3 days a week plus daily walking and activity in my home to living life very slow, as even roll over in bed took me time …slow and wait to breathe, pant, then finished the roll. Wasn’t fun. Went to slip on shoes, sold our home with steps, and so on. But kept looking and reading as I began to get worse and couldn’t go from bed to bathroom and sat a lot. Began to lose my balance and left thumb went numb. My husband suggested our pcp check my spine. There was some narrowing. We found a neurologist that listened to us and did multiple MRI’s and found a herniated disc. After he dis anterior cervical disckectomy with fusion at C5/6 putting in a spacer, I could finally breathe.
Don’t give up. But try and accommodate and live too. I also have this problem that we are discussing here; I believe it was a little worse after surgery but today is better but seems to flare up on movement and angle that I sit in chair. So I’m careful on that. Who knows? Worth a shot to get your spine checked. Good luck.

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@pleis80

This sounds exactly like what I am experiencing! May I ask how you are feeling now…years later? Any improvement? Anything you have learned to alleviate the symptoms? I would be so grateful to hear from you. I am pretty desperate at times. The shortness of breath definitely affects my quality of life. Hoping that you are feeling better!

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if it gets no worse on exertion then it is pseudo dyspnea if so id recommend reading my previous posts on here

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