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.

@sakota

rjx6000.. I too have a hiatal hernia and had gerd so bad. I went thru a lot of meds before the dr put me on one that really helped it. I also had a pain on my side off and on and that finally went away too. I'm stitting here trying to think what the name of the med was...... Anyway right now i am just on prilosec twice a day and things have been pretty calm....... I do also take align once a day, that helps too and that is over the counter med. As for the shortness of breath wish I could help you with that , I do have it but mine is contributed to COPD , Keep going to the dr and say I want answers and if he can't help you then go to another one. We know when things aren't right with us and want answers.......... Best of luck to you. I can try to find what med the dr put me on....... Not saying it will help you but it helped me........

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One thing i found out when my magnesium count dropped was the meds i take for my heart burn. Causes you to lose your magnesium. So i quit taking and ended up with terrible heartburn at nite. So now im taking just one heartburn pill in the evening and seems to be ok excep my mag is still low but not like it was.

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Hey, just wanted to drop by. Mine is virtually gone. When I am in anxious situations I find myself yawning or gulping air, but that has become about 98% non existent.

I had my baby December 8th! My csection and recovery went well and did not exacerbate my symptoms like I was afraid they would. Baby and I are doing well 🙂

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@qbug

Hey, just wanted to drop by. Mine is virtually gone. When I am in anxious situations I find myself yawning or gulping air, but that has become about 98% non existent.

I had my baby December 8th! My csection and recovery went well and did not exacerbate my symptoms like I was afraid they would. Baby and I are doing well 🙂

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Congratulations! I had the symptoms quite a bit over our break from school (I’m a teacher), but I’m also in grad school so I was spending each day hunched at the computer studying. Since going back to the classroom, I don’t notice it, so maybe it is mostly anxiety and psychological.

I’m glad you have had a good recovery and that you and baby are healthy! I hope you continue to feel well!

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@qbug

Hey, just wanted to drop by. Mine is virtually gone. When I am in anxious situations I find myself yawning or gulping air, but that has become about 98% non existent.

I had my baby December 8th! My csection and recovery went well and did not exacerbate my symptoms like I was afraid they would. Baby and I are doing well 🙂

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@qbug- Perhaps your pregnancy had something to do with it. When I was pregnant everything was off-kilter. I'm so glad that you are well and congratulations on the birth of your baby.

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So I've been prescribed 40 mg of Pantoprazole after seeing an ENT earlier this week who believes it's related to acid. I'll try and update in about 5 weeks or after my next appointment. REALLY REALLY hoping this works, if not then I'll try and push to see if I can have an endoscopy examination done.

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@itsnotanxiety

So I've been prescribed 40 mg of Pantoprazole after seeing an ENT earlier this week who believes it's related to acid. I'll try and update in about 5 weeks or after my next appointment. REALLY REALLY hoping this works, if not then I'll try and push to see if I can have an endoscopy examination done.

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@itsnotanxiety- I'm glad that you saw an ENT. Be careful of what you eat, that your choices are low in acid. Some people swear by an alkaline diet.
Also, if you still experience symptoms while your body adjusts to your new medication there are several things that you can do like raising the head of your bed.

Here is more information about GERD and you can also google questions additional that you have.

https://www.mayoclinic.org/diseases-conditions/gerd/symptoms-causes/syc-20361940

I look forward to hearing back from you.

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@itsnotanxiety

So I've been prescribed 40 mg of Pantoprazole after seeing an ENT earlier this week who believes it's related to acid. I'll try and update in about 5 weeks or after my next appointment. REALLY REALLY hoping this works, if not then I'll try and push to see if I can have an endoscopy examination done.

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@isnotanxiety I was wondering how you and @gabrielm, who started this thread, were doing. I started a new thread under lung health about a possible underlying cause of shortness of breath, air hunger, yawning, etc mentioned in a post by @yaramathe. Basically doctors and scientists in a new-to-me field of medicine called functional medicine are looking for underlying root causes of diseases. They are finding that MAST cells running amok, that don't show up on regular medical tests, cause diseases in every system in the body. The symptoms they identified as MAST attacking the respiratory system are shortness of breath, yawning, air hunger, coughing, etc. I hope you will read the post - https://connect.mayoclinic.org/discussion/possible-root-cause-for-sob-air-hunger-difficulty-deep-breathing/ to see if this might be relevant to your condition. It was a real AHA moment for me to learn about this in terms of thinking about a lot of seemingly unrelated medical issues I've had in the past 74 years. MAST attacks come and go and negatively impact different systems in our bodies at different times. I hope the new medication helps! Nancy

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@nla4625

@isnotanxiety I was wondering how you and @gabrielm, who started this thread, were doing. I started a new thread under lung health about a possible underlying cause of shortness of breath, air hunger, yawning, etc mentioned in a post by @yaramathe. Basically doctors and scientists in a new-to-me field of medicine called functional medicine are looking for underlying root causes of diseases. They are finding that MAST cells running amok, that don't show up on regular medical tests, cause diseases in every system in the body. The symptoms they identified as MAST attacking the respiratory system are shortness of breath, yawning, air hunger, coughing, etc. I hope you will read the post - https://connect.mayoclinic.org/discussion/possible-root-cause-for-sob-air-hunger-difficulty-deep-breathing/ to see if this might be relevant to your condition. It was a real AHA moment for me to learn about this in terms of thinking about a lot of seemingly unrelated medical issues I've had in the past 74 years. MAST attacks come and go and negatively impact different systems in our bodies at different times. I hope the new medication helps! Nancy

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@nla4625- I've done a bit of research into Mast Cell Activation Syndrome (MCAS). Since I am not a scientist nor a doctor I have to break the science down in simpler terms than what I read. I google a lot! What I gather about MCAS is that it is mostly an allergic reaction to something or many things. (although this is currently being debated). The tests that you mention are urine tests to determining whether the symptoms occur in separate attacks and are typical symptoms of an anaphylactic reaction without a clear cause. Or if they are repeated reactions.

The problem with this syndrome is that after a positive diagnosis the results may not pinpoint the triggers that activate these cells to cause symptoms. There are thousands and thousands of allergies, many of which don't have a particular trigger or solution. Also, there is not a "one treatment fits all" for this.

MCAS is also a multi-system disease:

https://www.centerformultisystemdisease.com/services/mast-cell-activation-syndromehttps://www.aaaai.org/conditions-and-treatments/related-conditions/mcas

My shortness of breath is due to lung cancer and damage to and loss of lung tissue from cancer itself and treatments. I also feel SOB when I exert myself beyond what I should. But, hey, why not try? lol. I also love the deep cleansing breaths when they come!

It makes sense that SOB can be an allergic reaction, even to our own bodies. I think that since it's so hard to pinpoint causes for this means that not everyone responds to the same treatments. A lot of times, as we can see in this group, it's a trial by error.

MCAS is definitely much more complex than what I have described. A scientist might shake his head at my post and tell me to go back to gardening or painting. Does any of this make sense? Did I miss it completely?

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@tonyagregg @gabrielm
I also suffer from SOB and have GERD. I found this discussion very interesting and also comforting to know I am not the only one feels the way you both do. I find if I stop thinking about my SOB it relaxes a bit and I don’t feel the feed yo take a deep breathe however I also notice I suffer more after eating?? Do you also feel this way?

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@bizzy12

@tonyagregg @gabrielm
I also suffer from SOB and have GERD. I found this discussion very interesting and also comforting to know I am not the only one feels the way you both do. I find if I stop thinking about my SOB it relaxes a bit and I don’t feel the feed yo take a deep breathe however I also notice I suffer more after eating?? Do you also feel this way?

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@bizzy12- Welcome to Mayo Clinic Connect. What you are experiencing is very common, as you have seen for yourself from our posts When did this begin for you? Have you saught any treatments?.

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