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.

Most of you claim you read all the posts and yet can’t figure it out . You all do have either diagnosed or undiagnosed hiatal hernia and associated gastrocardiac syndrome or Roemheld. Incompetence of medical profession these days is just astonishing.

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Hiatal hernia affects the diaphragm because this it exactly where the defect is located.

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@amber1234

Most of you claim you read all the posts and yet can’t figure it out . You all do have either diagnosed or undiagnosed hiatal hernia and associated gastrocardiac syndrome or Roemheld. Incompetence of medical profession these days is just astonishing.

Jump to this post

Amber, you seem very knowledgable on the subject of shortness of breath in relation to a hiatal hernia.
Is this a situation you’ve had to deal with personally? Can you give members some more information on what worked for you?

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I know this is an old thread and I appreciate you sticking around and updating us. I have had a similar if not the exact same issue with SOB since late 2016. In 2017 I started seeing specialists about it after my GP suggested something was wrong but could not say what. I went to a pulmonologist who ran some breathing tests that showed everything normal except for my diaphragm muscles not working as they should. Because it was a muscle response issue, I was sent to a neurologist because the pulmonologist thought I had ALS. I was very young at the time and the neurologist couldn’t find any evidence of ALS in my muscle movements or blood work. From there I was kicked over to an asthma and allergy specialist, who found that I had neither asthma or allergies, but still prescribed nasal spray. After that, I had given up the search to find an answer and just try to live with it, until I came across your post. Thank you for the exercise recommendation. I am going to look into it and see if it helps my situation.

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@loribmt

Amber, you seem very knowledgable on the subject of shortness of breath in relation to a hiatal hernia.
Is this a situation you’ve had to deal with personally? Can you give members some more information on what worked for you?

Jump to this post

What is happening is simply excess stomach or intestinal gas ( or in same cases it’s the matter of sensitivity not necessarily the excess) is triggering vagus nerve response . Any GI condition causing bloating can trigger it. In most people on this forum it’s HH. Surgery to fix HH in those cases, doesn’t usually work because it causes so called bloat syndrome and only adds up to the problem.

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It really is sort of a hybrid between functional dyspepsia and a gas bloat syndrome and any knowledgeable medical professional, if you are fortunate enough to find one, will treat it as such.

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@amber1234

Most of you claim you read all the posts and yet can’t figure it out . You all do have either diagnosed or undiagnosed hiatal hernia and associated gastrocardiac syndrome or Roemheld. Incompetence of medical profession these days is just astonishing.

Jump to this post

I will look into that more but how are you so sure? Have you dealt with that issue specifically? I'd love to learn more but you gotta give us more info

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Hi all,

I'm a 28 year old male.

So since 2013, I've had this unsolved breathing issue. Basically, what it feels like is every couple of breaths, I feel hungry for air and I make myself toyawn or sigh to get a deep breath. Sometimes it won't go through and then I'll wait to try again. But when it does, the feeling of a deep breath passing through the the throat down to the lungs and stomach feels so satisfying.

I can get a tight throat as well and it  almost feels like something is stopping the breath from passing through but there is no noise (no stridor).

All this started after I cut and inhale pressure treated lumber at Lowe's but was that the trigger? I remember it being so but I could be missing a vital piece of info.

For the first few months, this was happening constantly. Then it went from  from being constant to only occurring during exercise or exposure to poor air quality, strong smells, etc.. my dad would panic and send me to the ER but they couldn't do anything. My 02 was always good. They did so many tests (pulmonary function test, blood gas, had me run on treadmills) and nothing. Just mild exercise induced asthma.

Then I started doing my own research as I was taking an anatomy class at the time.  I started thinking to myself, could it be a throat issue? Because I struggled to inhale and my tightness was only in the throat. I advocated for myself and eventually saw an ENT/SLP. They said I may have VCD or Paradoxical Vocal Fold Movement  but they couldn't prove it with a Laryngoscopy.  I did speech therapy for 2 months but by then I had already lived with this issue for over a year. I just kinda started ignoring it and it kinda went away except when I would go running.  When running, I would  focus on getting that deep breath in and if I couldn't for more than 30 seconds, i'd get scared and would stop to get the breath through and then keep running. Eventually I lost the joy of running.

Fast forward to today, 2 months ago I may have been exposed again to the lumber while shopping and since then I've been having the breathing issue  constantly. Even when just sitting down. It gets worse as the day goes on. It does come and go so its not every second but it seems random. Our air quaity in Salt Lake City doesn't help either. Sometimes when I am really focused on a task or into a tv show, I can forget about it.

My new SLP and her ENT are confused. They dont know if its VCD. I have Dystonia in my eyelids and they think it may have progressed to my throat but I have no speech issue nor do I get any muscle spasms. So I am really lost. I have been waiting over 6 months to see a neurologist.

Can anyone relate to me here? Or help me out?

I just want my life back. I love being active and this has made me very sedentary and also affecting my mental health and weight gain. I miss hiking a lot.

Thanks for reading.

Tahir

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I also have been suffering intermittently my whole life, but daily since May 2020 when I thought I had COVID but tested negative. It is tolerable most times, but unsettling at others. I have also had various pulmonary and cardiac tests with normal results. I am mainly dismissed by doctors due to my fitness level and appearance. I am a runner and lift weights. My running pace has declined from averaging 8 minutes per mile to just under 10 and just under 9 on good days. I have to keep my pace down to maintain a tolerable breathing level. I notice steep climbs and a faster pace have to be toned down as the need for air is too strong to overcome. Also simple tasks such as standing from kneeling, climbing stairs, reaching for items in upper cabinets, getting up from a chair, etc. all cause a need for a full breath I cannot achieve. I have decided, as many of you have, to ignore it. I sympathize with you all and hope you find relief as I also pray for myself. It’s at least somewhat comforting, as crazy as it sounds, that others are also dealing with similar symptoms, although I wouldn’t wish it on my worst enemy. Good luck and please share if you find something that cures it for you or if something is found that can be treated. Thanks for reading and take care

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@danicandii

I know this is an old thread and I appreciate you sticking around and updating us. I have had a similar if not the exact same issue with SOB since late 2016. In 2017 I started seeing specialists about it after my GP suggested something was wrong but could not say what. I went to a pulmonologist who ran some breathing tests that showed everything normal except for my diaphragm muscles not working as they should. Because it was a muscle response issue, I was sent to a neurologist because the pulmonologist thought I had ALS. I was very young at the time and the neurologist couldn’t find any evidence of ALS in my muscle movements or blood work. From there I was kicked over to an asthma and allergy specialist, who found that I had neither asthma or allergies, but still prescribed nasal spray. After that, I had given up the search to find an answer and just try to live with it, until I came across your post. Thank you for the exercise recommendation. I am going to look into it and see if it helps my situation.

Jump to this post

hi @danicandii, glad you found this forum. I know it's helped a lot of people and I hope you find useful information throughout the comments. It sounds like you've had most of the tests which all came back normal. Have you had bloodwork done at all, and do you know of any nutrient deficiencies?

Interesting about the diaphragm muscles. I've wondered that about myself. Maybe the diaphragm muscles aren't quite working properly. There still may be some benefit to seeing if you could do some kind of diaphragm exercises to see if that will help strengthen the muscles. Have you looked into the possibility of diaphragm exercises? Let me know what you might come across, I'd be interested in maybe trying something out for me.

Let me know if you have any questions about the Buteyko breathing exercises; they have definitely helped to keep my symptoms under control and I've learned to just breathe through my noses and not my mouth. That also seems to help out quite a bit.

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