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

Hi @alureon! I've pretty much eliminated most caffeine save for the occasional soda at a restaurant. Don't seem to notice a difference. But as far as progress- I feel like my breathing has stabilized to where it's manageable. I do still have the SOB and sometimes it's pretty bad but it's usually because of sinus inflammation, which I'm not sure the cause of; maybe allergies, but I've constant sinus inflammation for about a couple of years. Some days it's better than others. So I'm able to get a deep breath most of the time, but I still have that feeling quite frequently. But it is more stable than it was a year ago, so I guess I consider that progress though I'm by no means rid of it.

Exercise also helps me. I believe that is what is keeping it stable and not getting worse. I noticed a few years ago that when I stopped exercising for an extended period of time, SOB came back fierce! I believe exercise helps because of the Bohr effect (look it up), which is basically a better O2/CO2 exchange in your blood because of the CO2 being produced by exercise. That's the premise behind the Buteyko Breathing Method, the method that has also helped stabilize my breathing and improved it.

I took Vitamin B12 and Iron supplements back in 2012 when this all first started. For some reason, right after taking those the breathing problem completely went away but it was short-lived. I was a bit anemic at that time and maybe that's why the supplements helped, but not sure why it didn't make the breathing problem go away completely.

Do keep us posted! Everyone here has been real good about sharing what's worked for them. It's always worth a shot to try what other people are doing. Good luck to you and I pray and hope you find answers and a cure.

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@gabrielm I would encourage you to get tested for allergies as a cause contributing to your breathing problem. Mold spores cause lung tissue to swell and when you're producing phlegm it's worse. That is the perfect breeding ground for lung infections. You can do saline nasal rinses for your sinuses, but make sure the water is clean or sterile...not tap water right from the tap. I use bottled water for this and I sterilize my nasal rinse bottle right before I use it. Look for sources of possible allergy problems inside your home like damp sponges or the inside of a drain or garbage disposal that can be growing mold. Dust is an accumulation of everything. I use HEPA filters all the time at home with carbon filtration and some 3M disposable surgical masks when I am cleaning and stirring up dust that filter out 99% of particles up to .01 microns. A big issue for me is my cats because of the dander, so I have to use a HEPA filter blowing on me while I sleep. I do allergy shots for lots of stuff including cats, and I wipe them down and vacuum at lot, and cover the bed and change it often. Using allergy pillow and mattress covers help a lot. Dust mites accumulate and trigger my asthma, so prevention is the key. Over time, lungs can be permanently changed from allergy exposure or infections, and you should try to prevent that. What I have learned to do when I get an infection in sinuses or my airways is to use Mupiroicin (Bactroban) topical antibiotic salve in my nose. Mayo had me do this before I had surgery, to prevent post-op infections, and I tried it when I had a respiratory infection and it worked, so my doctor gave me a prescription for it. What I notice when I get a respiratory infection is that I might have a slightly sore throat and my pulse rate goes up when I walk around, so I know I'm not getting enough air. I treat the infection for several days and my lungs get cleared and I feel fine again. Exercise is great, and kudos to you for doing it. It helps me, but not enough if I have too much inflammation from an infection or allergies.

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@gabrielm - Spores and mold can be extremely irritating and cause scaring of your lungs and surrounding tissues. In RI, where I live we have had an incredible amount of moisture this year and that means that these things will flourish. I would see if you have allergies or even asthma now.
https://www.webmd.com/lung-cancer/lung-cancer-and-mold#1

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@merpreb

@laurasue, @jerry6966- Good morning and Welcome to Mayo Connect. SOB is a terrible feeling. I am a 22 years lung cancer survivor and know well the feeling. There are many many causes. Here are some:
Shortness of breath has many causes affecting either the breathing passages and lungs or the heart or blood vessels. An average 150-pound (70 kilogram) adult will breathe at an average rate of 14 breaths per minute at rest. Excessively rapid breathing is referred to as hyperventilation. Shortness of breath is also referred to as dyspnea.

Doctors will further classify dyspnea as either occurring at rest or being associated with activity, exertion, or exercise. They will also want to know if the dyspnea occurs gradually or all of a sudden. Each of these symptoms help to detect the precise cause of the shortness of breath.

Causes of shortness of breath include asthma, bronchitis, pneumonia, pneumothorax, anemia, lung cancer, inhalation injury, pulmonary embolism, anxiety, COPD, high altitude with lower oxygen levels, congestive heart failure, arrhythmia, allergic reaction, anaphylaxis, subglottic stenosis, interstitial lung disease, obesity, tuberculosis, epiglottitis, emphysema, pulmonary fibrosis, pulmonary artery hypertension, pleurisy, croup, polymyositis, Guillain-Barré syndrome, sarcoidosis, rib fracture, carbon monoxide poisoning, and aerobic exercise.

Shortness of breath can be associated with symptoms of chest pain, pain with inspiration (pleurisy), anxiousness, fatigue, dizziness, fainting, cough, wheezing, bloody sputum, neck pain, and chest injury. (https://www.medicinenet.com/shortness_of_breath/symptoms.htm)

Have either of you seen a GI guy? The reason that I ask is that some people on here have solved their issues because of stomach problems. I hope that you all ga back and read the numerous posts. A lot of your questions can be answered on them, including tips and other suggestions.

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@merpreb There's one more thing that I would add to your list of things that affect breathing....Thoracic Outlet Syndrome... because for me it causes tightness in the chest and can prevent the muscles from fully expanding the rib cage properly. It involves the scalene muscles which are accessory muscles for breathing and emergency breathing in the neck. I have had muscle spasms that cause ribs to twist slightly. TOS can be caused by poor posture or an injury like a whiplash. It's like living in a straight jacket and can even cause a functional scoliosis of the spine. I did have that, but physical therapy helped straighten it out and later MRIs don't mention it anymore. Physical therapy with myofascial release often helps TOS and get the body moving better. I've been doing MFR for a few years.
Here are some links that reference breathing issues with Thoracic Outlet Syndrome and MFR treatment.

https://trainingandrehabilitation.com/how-truly-treat-thoracic-outlet-syndrome/
https://www.painscience.com/articles/respiration-connection.php
http://www.med.umich.edu/1libr/CVC/997ThoracicOutletSyndrome.pdf
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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@jenniferhunter

@merpreb There's one more thing that I would add to your list of things that affect breathing....Thoracic Outlet Syndrome... because for me it causes tightness in the chest and can prevent the muscles from fully expanding the rib cage properly. It involves the scalene muscles which are accessory muscles for breathing and emergency breathing in the neck. I have had muscle spasms that cause ribs to twist slightly. TOS can be caused by poor posture or an injury like a whiplash. It's like living in a straight jacket and can even cause a functional scoliosis of the spine. I did have that, but physical therapy helped straighten it out and later MRIs don't mention it anymore. Physical therapy with myofascial release often helps TOS and get the body moving better. I've been doing MFR for a few years.
Here are some links that reference breathing issues with Thoracic Outlet Syndrome and MFR treatment.

https://trainingandrehabilitation.com/how-truly-treat-thoracic-outlet-syndrome/
https://www.painscience.com/articles/respiration-connection.php
http://www.med.umich.edu/1libr/CVC/997ThoracicOutletSyndrome.pdf
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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I have never heard of this but it sounds very interesting. I've had shortness of breath from things like pneumonia before but what I've been experiencing for the last four years is a different type of shortness of breath if that makes sense. What is the physical therapy for TOS like? Is this something your doctor finally diagnosed and sent you to therapy for ? Did you have immediate results after the first pt session?

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@gabrielm

@laurasue Definitely share the Mayo Clinic's findings. Another option, which I haven't pulled the trigger on yet, is https://www.crowdmed.com/, where a group of specialists work on your case when you submit it and provide a report on what they link is the likely cause. I will probably submit my case soon, but wanted to mention it as an option if the Mayo Clinic turns up short.

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I'm going to try this. Thank you for posting.

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Hello all. I recently came across this thread and decided to comment since I have had similar symptoms. When I was a child in elementary school I developed asthma after a bout of pneumonia. I have also been very sensitive to allergens and get severe upper respiratory infections from time to time. A say the least I was not a very healthy child growing up. It did not help that the house I grew up in had very dusty carpets. I took a control inhaler and an antihistamine and my symptoms improved as I got older. My immune system also improved. However, around the time that I began to go to high school from around 2009-2010, I began to experience some of the symptoms described in this thread. I would have to get up pretty early for the bus and would ride it with my older brother. I remember that it felt like I was not getting enough blood to my head and felt quite dizzy. I told my brother and he dismissed it so I did not really make much of a fuss. The symptoms were more manageable then. However,by the end of high school and early college the symptoms began to get worse. I would get lightheaded, dizzy, numbness in my hands and face, and SOB. It got so bad that I told my parents, but I insisted in not going to the ER since I knew that the symptoms would pass as normal after an hour or so. Other symptoms that seem to be related are an extreme thirst (I once drank an entire pack of water bottles in like and hour at a friends house), heart palpitations, loss of finger dexterity, and strong pulsating veins in my forehead and nose.

The symptoms seem to come in waves where it will affect me hard for like a week and then go away, only to return a week or two later. I finally went to the health clinic at school last semester when I was having trouble breathing. They tested the blood oxygen level and it was like 98%. The doctor referred me to an allergist. The allergy test that I took showed that I am sensitive to dust mites, but not much else. I have not gotten a chance to return yet since I am quite busy as a graduate student. However, it has been bothering me hard this week and I have been looking into it. I typed into google "difficulty taking a deep breath" and the suggestions included "... and yawning". I would say that I am pretty bad as describing symptoms to a doctor on the spot and for some reason I did not think to mention that it feels like I have an uncontrollable urge to yawn, but the yawn stalls out before the deep breath part. I included the yawning part in the search and it helped bring me to this page. I would also like to note that my symptoms seem to be worse when I am tired or after a big meal. Sorry for the long winded (funny since we are having trouble taking deep breaths) post, but I felt it necessary to share my story.

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@allisonl

I have never heard of this but it sounds very interesting. I've had shortness of breath from things like pneumonia before but what I've been experiencing for the last four years is a different type of shortness of breath if that makes sense. What is the physical therapy for TOS like? Is this something your doctor finally diagnosed and sent you to therapy for ? Did you have immediate results after the first pt session?

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@allisonl My experience has been that getting results from physical therapy for thoracic outlet syndrome takes a long time. There are multiple layers of tight tissue and fascia that need to be addressed and that is a slow process, but progressively you get to deeper layers. The doctor that diagnosed was at a teaching medical center and he told me it would probably take 3 years of physical therapy to rehab TOS. I was able to tell that the MFR work was helping immediately. but it's something that you need to keep working on and you can do a lot at home after the PT shows you what to do. Mayo is a good place for TOS diagnosis. There is surgery for TOS, but it can make it worse because of surgical scar tissue that compounds the problems of tight fascia, and MFR is used to treat surgical scar tissue. My PT can tell by looking at me where my body ids too tight or twisted out of shape and she begins there. We have also done some strengthening to try to hold better body mechanics and function after releasing tight tissues. When the scalene muscles are tight, they pull the rib cage up, and it doesn't relax and let the ribs relax and it holds the chest taught. MFR is like kneading bread dough where you sink in and push to create a shear and you hold it against the barrier. It will start sliding and you follow it or change direction as it changes. There is a provider finder and a lot of information in the MFR discussion. What I notice is my chest wall moves better after I've had physical therapy.

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@robert95

Hello all. I recently came across this thread and decided to comment since I have had similar symptoms. When I was a child in elementary school I developed asthma after a bout of pneumonia. I have also been very sensitive to allergens and get severe upper respiratory infections from time to time. A say the least I was not a very healthy child growing up. It did not help that the house I grew up in had very dusty carpets. I took a control inhaler and an antihistamine and my symptoms improved as I got older. My immune system also improved. However, around the time that I began to go to high school from around 2009-2010, I began to experience some of the symptoms described in this thread. I would have to get up pretty early for the bus and would ride it with my older brother. I remember that it felt like I was not getting enough blood to my head and felt quite dizzy. I told my brother and he dismissed it so I did not really make much of a fuss. The symptoms were more manageable then. However,by the end of high school and early college the symptoms began to get worse. I would get lightheaded, dizzy, numbness in my hands and face, and SOB. It got so bad that I told my parents, but I insisted in not going to the ER since I knew that the symptoms would pass as normal after an hour or so. Other symptoms that seem to be related are an extreme thirst (I once drank an entire pack of water bottles in like and hour at a friends house), heart palpitations, loss of finger dexterity, and strong pulsating veins in my forehead and nose.

The symptoms seem to come in waves where it will affect me hard for like a week and then go away, only to return a week or two later. I finally went to the health clinic at school last semester when I was having trouble breathing. They tested the blood oxygen level and it was like 98%. The doctor referred me to an allergist. The allergy test that I took showed that I am sensitive to dust mites, but not much else. I have not gotten a chance to return yet since I am quite busy as a graduate student. However, it has been bothering me hard this week and I have been looking into it. I typed into google "difficulty taking a deep breath" and the suggestions included "... and yawning". I would say that I am pretty bad as describing symptoms to a doctor on the spot and for some reason I did not think to mention that it feels like I have an uncontrollable urge to yawn, but the yawn stalls out before the deep breath part. I included the yawning part in the search and it helped bring me to this page. I would also like to note that my symptoms seem to be worse when I am tired or after a big meal. Sorry for the long winded (funny since we are having trouble taking deep breaths) post, but I felt it necessary to share my story.

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@robert95- Good morning and welcome to Connect. So many people are allergic to dust mites. Dust mites are microscopic, insect-like pests that commonly live in house dust. They feed on flakes of dead skin, or dander, that are shed by people and pets. It's so very important to keep your home as dust free as possible. I'm very sensitive to the mites too because I have had 4 lung cancers. We got rid of all natural rugs, curtains, etc.If you can email your doctor please do so or call back and let his nurse know what you forgot to say. I know that if I don't make a list before I go tot he doctor about what's going on I sit there like a zombie and think, uh? lol.
Has he changed any of your medicines? You O2 is great. As the earth heats up more molds, spores, etc. are growing and more and more people are experiencing more problems. DO you think that this could be part of your problem?

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@gabrielm

Hi @alureon! I've pretty much eliminated most caffeine save for the occasional soda at a restaurant. Don't seem to notice a difference. But as far as progress- I feel like my breathing has stabilized to where it's manageable. I do still have the SOB and sometimes it's pretty bad but it's usually because of sinus inflammation, which I'm not sure the cause of; maybe allergies, but I've constant sinus inflammation for about a couple of years. Some days it's better than others. So I'm able to get a deep breath most of the time, but I still have that feeling quite frequently. But it is more stable than it was a year ago, so I guess I consider that progress though I'm by no means rid of it.

Exercise also helps me. I believe that is what is keeping it stable and not getting worse. I noticed a few years ago that when I stopped exercising for an extended period of time, SOB came back fierce! I believe exercise helps because of the Bohr effect (look it up), which is basically a better O2/CO2 exchange in your blood because of the CO2 being produced by exercise. That's the premise behind the Buteyko Breathing Method, the method that has also helped stabilize my breathing and improved it.

I took Vitamin B12 and Iron supplements back in 2012 when this all first started. For some reason, right after taking those the breathing problem completely went away but it was short-lived. I was a bit anemic at that time and maybe that's why the supplements helped, but not sure why it didn't make the breathing problem go away completely.

Do keep us posted! Everyone here has been real good about sharing what's worked for them. It's always worth a shot to try what other people are doing. Good luck to you and I pray and hope you find answers and a cure.

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Any food allergies? Dairy? I found that I have a food allergy to dairy. It was causing me one sinus infection after another. Once off dairy = no sinus headaches or infection.

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@helena4000

I'm going to try this. Thank you for posting.

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@helena4000- How are you feeling? Are the medicines working? Are you having any particular problems while you heal?

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