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.

@pc72

I’ve read every word of this thread, as I have the many of these symptoms and frustrations. I wish no one else had to deal with this, but I appreciate that all of you posted, as I learned a lot from your words.

Here’s my story. I’ve been having “air hunger” for the past couple months, which has worsened greatly in the past 2 weeks. I never feel like I can take a deep breath, there’s immense pain in the center of my chest, and my heart rate/BPM via my Apple Watch fluctuates between 37 & 210 at rest. I’ve also fainted twice (out of nowhere) and feel dizzy when the breathlessness hits.

I’ve had 2 ER visits and an overnight stay at the hospital in the past week. The tests — focusing on pulmonary embolism, heart valve, congestive heart failure — came back negative. I have a premature bear, which they said isn’t uncommon. In fact, the cardiologist said my heart is really strong, which makes sense because I exercise a lot and have a healthy diet. I had diverticulitis 3 months ago on my right side, which is unusual — a sharp pain in that area next to my hip has lingered since then.

It seems like my symptoms kick into gear while eating and then linger most of the day. I easily did a bootcamp class 3 weeks ago and now have trouble walking my dog around the block.

I’m seeing a GI doc this Friday, but the pulmonology test isn’t available for another couple months. The thought of struggling like this is overwhelming. Any advice would be appreciated. Thank you!

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p.s. Typo above: premature beat, not bear! I think I may rather have the bear at this point, though. 😉

Also, I don’t have stress beyond what I’ve always had.

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@jwiegers17

Let me know please if you ever have a break through I’ve been living with this for 7 years straight and I don’t want to deal with this for the rest of my life. Frustrating isn’t the right word, it’s much more than that. Honestly makes really angry that no one can help me...

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@jwiegers17- I certainly can understand your anger. It also sounds as if you have lost hope. This is the worst feeling. It always makes me feel crazy and out of touch. It's really an overwhelming feeling. As you can see in all of these threads, it's not unusual to spend years finding a solution to SOB. You mentioned a couple of posts ago that you hadn't given your inhaler a chance to work. Inhalers take time to work. They aren't miracle drugs. There are some new inhalers out there that are very very good. You also mentioned that you were going to get a referral to a couple of people and a chiropractor. Have you met any of them? Is your weight as low as it could be? Have you looked into exercise-induced asthma and been tested for it?

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@helena4000

Only thing that has helped me is Advair and emergency inhalers. I get bronchospasms apparently. But I don't have asthma. This has been going on since I was diagnosed with pericarditis in February, 2019. I never had these types of breathing problems at any time in my life.

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@helena4000- Good morning. Bronchospasms are scary and awful. I had a bad one trying to get off a very crowded plane. I thought that a lung had collapsed. I couldn't breathe. I had to stop, hold up traffic and take slow breaths. No one was happy getting off the plane. Advair and rescue inhalers are great in helping with breathing constrictions. Have viral infections been ruled out as a cause of your Pericarditis? What other treatments have you had?

https://www.mayoclinic.org/diseases-conditions/pericarditis/symptoms-causes/syc-20352510
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@merpreb

@helena4000- Good morning. Bronchospasms are scary and awful. I had a bad one trying to get off a very crowded plane. I thought that a lung had collapsed. I couldn't breathe. I had to stop, hold up traffic and take slow breaths. No one was happy getting off the plane. Advair and rescue inhalers are great in helping with breathing constrictions. Have viral infections been ruled out as a cause of your Pericarditis? What other treatments have you had?

https://www.mayoclinic.org/diseases-conditions/pericarditis/symptoms-causes/syc-20352510

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That's the worst part, when I get these bronchospasms it's like I can't get a deep breath down. The Advair has made them MUCH more manageable so I can actually function. It's awful not being able to take a complete breath. Never had this stuff before the heart issue.

I was tested for everything, and nada. They think a virus got into my heart and caused inflammation. They also found heart scarring that they thought looked like myocarditis.... I feel like the doctors ultimately looked at me and shrugged. But at least I can function now. I get heart flutters which worries me a bit. I've had a little bit of trouble paying off my medical bills so I'm trying to avoid the cardiologist until I can.

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@pc72- Good morning and welcome to Mayo Connect. It looks like you have had a rough time. All of this can really be overwhelming. I am assuming that one of your doctors is a Cardiologist? What other tests have you had done? Any chance that you've had a stress test? I
Do you remember what proceeded with your first instance of this? Did it start with a diverticulosis flare-up?
https://www.drugs.com/health-guide/diverticulosis-and-diverticulitis.html

Seeing a new doctor can be very nerve-racking. I always have all of my previous tests and notes from any doctors that might help the new dr. I also write down any and all questions that you have.

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@helena4000

That's the worst part, when I get these bronchospasms it's like I can't get a deep breath down. The Advair has made them MUCH more manageable so I can actually function. It's awful not being able to take a complete breath. Never had this stuff before the heart issue.

I was tested for everything, and nada. They think a virus got into my heart and caused inflammation. They also found heart scarring that they thought looked like myocarditis.... I feel like the doctors ultimately looked at me and shrugged. But at least I can function now. I get heart flutters which worries me a bit. I've had a little bit of trouble paying off my medical bills so I'm trying to avoid the cardiologist until I can.

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@helena4000- Is it possible to ask family or friends to help you see a cardiologist? Are there any clinics to help get you started?

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@merpreb

@pc72- Good morning and welcome to Mayo Connect. It looks like you have had a rough time. All of this can really be overwhelming. I am assuming that one of your doctors is a Cardiologist? What other tests have you had done? Any chance that you've had a stress test? I
Do you remember what proceeded with your first instance of this? Did it start with a diverticulosis flare-up?
https://www.drugs.com/health-guide/diverticulosis-and-diverticulitis.html

Seeing a new doctor can be very nerve-racking. I always have all of my previous tests and notes from any doctors that might help the new dr. I also write down any and all questions that you have.

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Hi, Merry. Thank you for the reply! One of my doctors is a cardiologist — I was on the cardiology floor at the hospital for a couple days last week. I had a chest x-ray, CT angiogram, stress test and echocardiogram done — all good, although the stress test was done when I wasn’t short of breath.

I do think this started with diverticulitis, as I never really rebounded fully. I have some auto-immune conditions, notably hypothyroidism and mild vitiligo — I wonder if those play a role, too.

My sister today said, “If the doctors here [in Chicago] can’t figure it out, let’s go up to Mayo for a couple days.”

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@pc72

Hi, Merry. Thank you for the reply! One of my doctors is a cardiologist — I was on the cardiology floor at the hospital for a couple days last week. I had a chest x-ray, CT angiogram, stress test and echocardiogram done — all good, although the stress test was done when I wasn’t short of breath.

I do think this started with diverticulitis, as I never really rebounded fully. I have some auto-immune conditions, notably hypothyroidism and mild vitiligo — I wonder if those play a role, too.

My sister today said, “If the doctors here [in Chicago] can’t figure it out, let’s go up to Mayo for a couple days.”

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@pc72- You are very welcome. I'm here when you want me! It looks like you covered everything in all of your doctor's visits. Seeing a GI doctor is, of course, the best thing at this point. I'm glad that you have an appointment. As far as vertigo and hypothyroidism go I find that when there are things wrong with us our stress levels go up which does quicken our breathing and maybe we don't take as deep a breath.
Here is a patient's guide to Mayo Clinic: https://www.mayoclinic.org/patient-visitor-guide
https://www.mayoclinic.org/patient-visitor-guide/all-about-appointments

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@merpreb

@jwiegers17- I certainly can understand your anger. It also sounds as if you have lost hope. This is the worst feeling. It always makes me feel crazy and out of touch. It's really an overwhelming feeling. As you can see in all of these threads, it's not unusual to spend years finding a solution to SOB. You mentioned a couple of posts ago that you hadn't given your inhaler a chance to work. Inhalers take time to work. They aren't miracle drugs. There are some new inhalers out there that are very very good. You also mentioned that you were going to get a referral to a couple of people and a chiropractor. Have you met any of them? Is your weight as low as it could be? Have you looked into exercise-induced asthma and been tested for it?

Jump to this post

Unfortunately the medical community here in America does not take this issue seriously at all. I look completely normal on the outside, and present myself normally , have normal blood tests and scans, so they assume I’m all good and get tired of me when I come back. But this really has affected my quality of life, like really. I just feel uncomfortable all the time because of it. I lose my breath when I speak. I’m jealous of everyone else who can breathe freely without thought. I’ve left multiple jobs becuase of this. If this is anxiety, it is the weirdest manifestation of anxiety ever. I know people with anxiety and they only feel short of breath sometimes. Not 247 like me.

Again, mine is a constant feeling of chest tightness and can only take a satisfying breath it seems every so often. Like a cycle my body is stuck in. It’s confusing , maybe my body wants to breath shallowly, or maybe for some reason it literally physically can’t breathe normally for some reason . Not painful just uncomfortable.

On the plus side it isn’t as bad as it was a few years ago. There were times I literally wouldn’t get out of bed because sleep was my only escape. Crazy how this has happened, I’m just a 27 year old normal guy from California. thank you for your kind words and concern, maybe I’ll give another inhaler a try but idk about that. I’ll let you know if I ever figure it out.

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@jwiegers17

Unfortunately the medical community here in America does not take this issue seriously at all. I look completely normal on the outside, and present myself normally , have normal blood tests and scans, so they assume I’m all good and get tired of me when I come back. But this really has affected my quality of life, like really. I just feel uncomfortable all the time because of it. I lose my breath when I speak. I’m jealous of everyone else who can breathe freely without thought. I’ve left multiple jobs becuase of this. If this is anxiety, it is the weirdest manifestation of anxiety ever. I know people with anxiety and they only feel short of breath sometimes. Not 247 like me.

Again, mine is a constant feeling of chest tightness and can only take a satisfying breath it seems every so often. Like a cycle my body is stuck in. It’s confusing , maybe my body wants to breath shallowly, or maybe for some reason it literally physically can’t breathe normally for some reason . Not painful just uncomfortable.

On the plus side it isn’t as bad as it was a few years ago. There were times I literally wouldn’t get out of bed because sleep was my only escape. Crazy how this has happened, I’m just a 27 year old normal guy from California. thank you for your kind words and concern, maybe I’ll give another inhaler a try but idk about that. I’ll let you know if I ever figure it out.

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@jwiegers17- Good morning. I would like to suggest something. My SOB is caused by lung cancer but it is SOB, nevertheless. My pulmonologist suggested that I go to Pulmonary rehab to learn to control my breathing in all instances of life. It changed my life even though I couldn't get rid of the SOB. Check to see if any hospitals or clinics have programs like this.
I wish that I could help every single person on this thread breathe. I wish that I had a simple answer and that all would be well with everyone. I spoke with my Pulmonologist recently and he said that being overweight is the number one reason now for SOB. Is it possible that weight could be the problem?

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