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

Have you seen a doctor for your hiatal hernia? Depending on how severe it is, they may want to do surgery especially if it's giving you symptoms.

Being involved in an activity does help with the breathing for me. If my mind is concentrating on things like work, hobby, or conversation, I'm not so focused on my breathing so I don't really feel symptoms.

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osea si te concentras en algo ya no tienes la necesidad se respirar profundo?
puedes estar incluso horas sin tener la necesidad de suspirar?

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@dcm8299

Good Morning Gabe. Thank you for the response. As prescribed by the GI doctor after the endoscopy, I take Nexium daily. It's helped the reflux. With regards to the nasal symptoms, I have Flonase and Sinex Severe sprays. They actually help relieve the stuffy congested nose immediately which helps with breathing but seems to reappear shortly after. Maybe I should start some breathing exercises. I'm not sure where to investigate next. What I know is that I've been cleared for most of the major body systems that would cause this even though I'm still feeling the air hunger daily. And it seems to be progressing/worsening becoming more prevalent?? I guess I'll just keep keeping active. I try to run 2-3 miles a day 4/5 per week along with weight training. I climb and descend roughly 300 stairs daily. Ironically, I feel my breathing is vastly improved while I'm exercising or staying active.

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Have you tried yoga? Or meditation? Or acupuncture?

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Hi Gabe, thanks for sharing your story. I have been experiencing periodic shortness of breath for the past 2 years - sometimes more, sometimes less. I notice that I breathe through my mouth a lot - I never seem to get enough air when breathing through my nose (at least, that is how I experience it). I have had a lung x-ray done which showed nothing out of the ordinary. A little less than a year ago I did a spirometry test which showed >100% of predicted values. I also went to an ENT specialist who said I have irritated sinuses, which she says causes post nasal drip. I do have a lot of nose congestion, which likely explains my mouth breathing. She also said my throat has more mucus than usual, but she could not pinpoint where it comes from. I have also been to the doctor multiple times who eventually referred me to a psychologist. While it was nice to talk to someone about how I felt, it didn't really do much for my shortness of breath. I do accept that I spend way too much time thinking about and obsessing over my breathing. I think fear may exacerbate the feeling of shortness of breath, but I am still not convinced that it actually causes my shortness of breath. Just thought I'd share my story. Thanks again for sharing yours

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@sarah66

osea si te concentras en algo ya no tienes la necesidad se respirar profundo?
puedes estar incluso horas sin tener la necesidad de suspirar?

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That's right, I don't feel the need for my body to take a sigh. Sometimes I do get the slight urge but resist if it's not a strong urge. When I get a strong enough urge, I'll take the deep breath and it's usually satisfied. But I do find that deep concentration on something takes my mind off of my breathing so I don't pay attention to or notice the air hunger sensation.

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@stilts15

Hi Gabe, thanks for sharing your story. I have been experiencing periodic shortness of breath for the past 2 years - sometimes more, sometimes less. I notice that I breathe through my mouth a lot - I never seem to get enough air when breathing through my nose (at least, that is how I experience it). I have had a lung x-ray done which showed nothing out of the ordinary. A little less than a year ago I did a spirometry test which showed >100% of predicted values. I also went to an ENT specialist who said I have irritated sinuses, which she says causes post nasal drip. I do have a lot of nose congestion, which likely explains my mouth breathing. She also said my throat has more mucus than usual, but she could not pinpoint where it comes from. I have also been to the doctor multiple times who eventually referred me to a psychologist. While it was nice to talk to someone about how I felt, it didn't really do much for my shortness of breath. I do accept that I spend way too much time thinking about and obsessing over my breathing. I think fear may exacerbate the feeling of shortness of breath, but I am still not convinced that it actually causes my shortness of breath. Just thought I'd share my story. Thanks again for sharing yours

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Hi @stilts15, it sounds like your sinuses are a big part of the problem. Mine can be like that too sometimes. I take nasal sprays for allergies during allergy season, like now, and also nasal rinses every day. This seems to help most of the time, but like you, I also experience more of an air hunger sensation when my sinuses are bothering me. Have any of the doctors prescribed anything for the allergies/sinus issues? Are you currently treating the sinus issues currently?

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Hello, this post made me feel less alone, I started experiencing the exact same symptoms out of the blue in May of 2022 and saw so many specialists and no one could give me answers. My therapist thinks it’s a form of tourettes, I’ve been diagnosed with depression, anxiety, and OCD lol but this kind of came out of left field. I’ve tried doing breathing exercises but nothing is helping and it exhausts me and makes me feel hopeless on fixing my breathing! But I’ve read other stories on this as well and other people have it and it’s been diagnosed to them also as a mental thing but on the plus side some people have learned to manage it so that’s a hopeful thing! I truly hope we get some answers and hope life goes well with you while dealing with this.

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Your mention of short term improvement with B12 supplementation might be the answer. If you have an MTHFR gene mutation it could mean that your body is having issues with methylation of homocysteine. That can cause the shortness of breath you described as well as many of the issues described by others on this thread. With the mutation it involves an issue with the combination of folate and B12 in the formation of an enzyme required to break down homocysteine.

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@yara98

Hello, this post made me feel less alone, I started experiencing the exact same symptoms out of the blue in May of 2022 and saw so many specialists and no one could give me answers. My therapist thinks it’s a form of tourettes, I’ve been diagnosed with depression, anxiety, and OCD lol but this kind of came out of left field. I’ve tried doing breathing exercises but nothing is helping and it exhausts me and makes me feel hopeless on fixing my breathing! But I’ve read other stories on this as well and other people have it and it’s been diagnosed to them also as a mental thing but on the plus side some people have learned to manage it so that’s a hopeful thing! I truly hope we get some answers and hope life goes well with you while dealing with this.

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I’m glad you find a sense of hope here! What kind of breathing exercises have you done and how long have you been keeping that up?

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@billghsv

Yessir321,
Your post is very interesting to me… I went through a year long spell of this air hunger 18 months ago. I had some GI issues and the pain caused my blood pressure to go up a little as well. In addition to the ulser med, I started taking a low dose of a beta blocker for elevated blood pressure. When I asked the Dr what the med was for, he said “it will take the edge off”. The beta blocker works by blocking the action of hormones like adrenaline… when I started the medicine, the breathing problems (air hunger) went away for me. Fast forward 18 months… my blood pressure is in check and I have lost some weight…. I went to the Dr to discuss stopping taking the beta blocker… he said okay, to take 1/2 a pill for a week… so i did, and the damn air hunger is starting back up! And I agree that the more one fixates on it, the worse it gets. I had originally believed that the problem was associated with the GI problem (I.e. ulcers) but I am starting to rethink that, and anxiety as you described it make sense. Thanks for your post.

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Thank you ive returned to see the reaction and you seem to be the only one who can relate. I also recommen DARE it is a book and a program/therapy program. But its the same thing . The most important thing i can tell you is acceptance isnt a doing action if it is then its an attempt to control, living is a doing word. wake up tomorrow and just focus on life engage in your life. stop engaging with anxiety or anxiety recovery because if you do it tells your body to try and see if it can feel a sensation and anxiety can make you feel anything especially if you dont like it. Another thing which goes hand in hand, if you fully accept then you shouldnt be measuring symptoms(im sure you can see how thats not acceptance). But again dont try to not think about it, but just choose to focus on your life instead. If your life is full of free time, i suggest working more, taking up a hobby, doing more to occupy yourself to not focus on anxiety recovery. Andd gradually your body will burn out the adrenaline but will take some time.

@elizabethjoy I would like to respond and say i was addressing the people who have been medically cleared. The people who have fully functioning lungs heart and what not. The people that have been told it could be anxiety but dont believe it because they are not worried about anything but the breathing(just like i did). KEY DIFFERENCE BETWEEN PSEUDODYSPNEA (FALSE) AND DYSPNEA(REAL) IS THAT IS THE BREATHLESSNESS WORSENED BY EXERTION. IF YOUR BREATHING IS CAUSED BY SOMETHING NOT ANXIETY THEN RUNNING FOR A MINUTE WOULD REALLY WORSEN YOU LIKE YOU ARE ABOUT TO PASS OUT. WHILE I AND MANY WOULD FEEL AWFUL JUST SITTING OING NOTHING AND EXERCISING AEROBICALLY WOULD TAKE MIND OFF IT.

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@seniordon09

My shortness of breath happened after the left side of my diaphragm paralyzed !
My breathing is becoming worse and worse every day !
My lungs and heart is OK according to my doctors !
Does anyone know of a doctor in Oklahoma that specializes in the function of the diaphragm ?
Thanks

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Hello, I've had my doubts about this recently. Did you come to a conclusion?

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