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.

Hi jerry. I thought hyperventilation syndrome is when u are over breathing ? I do only nose breath and for the last six months I am calmly breathing and don’t over do it. How’s was your breathing before ?

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@alureon

Since it's been almost a year since your original post - I'm curious - have you made any progress? I'll have to try the caffeine thing, although my caffeine intake is pretty consistent, so it wouldn't explain the whole good days / bad days thing. Like you, I have been journaling for about a month now and there is honestly no rhyme or reason to it that I can discern. I just went on vacation recently and completely changed almost everything. Diet, activity level, climate, etc. It was the same! I had some good days and some bad days.

It's definitely a really frustrating problem and my heart goes out to all of you in this thread. The only thing that I have found that makes ANY real difference is exercise. On days where my activity level is really high it seems to be a lot less. I'm not sure that it works that way for everyone else, but typically a lot of activity cures my SOB. The problem with this is that I'm a student and I have a desk job, so it's very difficult for me to get a lot of movement in. It can't be quick either, it has to be like 30 minutes of sustained movement. Usually on days where I'm very active, the SOB gives up at some point and I feel better. It doesn't give up without a fight though, it's usually there fighting for a while. On the weekend I jog on the treadmill for about 30 minutes. Sometimes the SOB is annoying during the entire workout, but it's usually better by the end. Other than that, I haven't found any magic pill. I should also note that I've been exercising for years so I doubt that it's just going to "go away" randomly because I was out of shape. I guess it just gets the blood pumping and opens my lungs giving me temporary reprieve.

Anyway, I'll keep trying things and keeping everyone posted. I was hoping the climate change, diet change, the vitamins I started taking, fish oil, meds from the doc, or SOMETHING would yield some serious results I could report back but I've got nothing.

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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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@laurasue

Hi jerry. I thought hyperventilation syndrome is when u are over breathing ? I do only nose breath and for the last six months I am calmly breathing and don’t over do it. How’s was your breathing before ?

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It is caused by overbreathing but can also also occur when you're just thinking about your breathing and manually controlling it. This is because the body usually takes very small breaths, because that's all the oxygen it needs. When you think about your breathing, you have a tendency to think you need larger breaths or breath faster therefore taking in more oxygen than you need. You're still breathing slowly, but because you're mentally controlling your breathing rather than letting your body control it automatically, taking in too much oxygen is the result. Even if you think you are breathing normally just the fact you are controlling it calmly can cause you to hyperventilate. When I say hyperventilate I don't mean gasping for breath I just mean the feeling of not being about to take a deep breath. Because you feel like you haven't gotten a deep breath, you are likely to try to take even deeper breaths. This will just cause you to hyperventilate more, as you continue to take in too much oxygen. Lots of people have hyperventilation syndrome and don't even know - it's only that we have become hyperaware of our breathing. My breathing was totally normal before this started - have never had an issue with breathing/ anxiety/sleeping and then it all hit me at once!

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@allisonl

Hi! I'm new to the group but I must share my story! I began exercising and losing weight. After 7 months of this new lifestyle I decided to reduce my smoking from a pack a day to 1 cigarette a day. I then went on vacation and the day I came back I went for a run and had this feeling I couldn't take a deep breath. Its been 4 years now and this sob hasn't gone away. I've had every test possible. Lung function, ct scan of lungs, thyroid, so much blood work, MRI of the back and head, hormone testing, put on allergy meds, xanax, acupuncture, breathing therapy, vocal cord function tests, swallow study, omeprazole, diet changes, and probably more that I'm forgetting. Nothing has helped my sob. I never felt it was anxiety but after an awful year of deaths in the family and all sorts of other stressors my breathing didn't get worse or better. Xanax also doesn't help. I haven't smoked in 3 years now. I'm not a drinker. I eat healthy and organic and I don't drink alcohol. I've tried everything. I have another appt coming up with my allergist to try a different set of meds. I don't have sneeze or anything but I was told from the skin test o have some allergies. I've had my house reinspected, water tested, and air quality tested. I don't know what else to do. I have good days and bad days but the sob is always there just sometimes its worse than others. Its a feeling I can't get a good satisfying breath and then I force it and sometimes o get one and sometimes I don't. If I don't I start to get dizzy and start yawning. Its very depressing to struggle with this. I'm also sick of being told its anxiety when I've had this all day every day from the second I wake up til I go to bed for four years. The few times I have drank I still have this...and I'm def not anxious when I've been drinking. I've also been to the gi and had a colonoscopy and abdominal ultrasound. Also an EKG and echo. All check out fine. Please help!

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@allisonl - your story reads just like mine. I too had a bunch of tests done to no avail. They did find a slight hiatal hernia and also GERD/acid reflux. While PPIs have helped with the heartburn, they haven't helped with the SOB. I know just how you feel though. At one point it was so bad for me that I was having multiple panic attack since I was in a constant state of suffocation. Have you looked into the Buteyko Breathing method? That has been the only thing that has helped me thus far, along with light to moderate exercise, mostly lifting weights. You might try the method. I was taught the original method through this organization; https://learnbuteykoonline.net. You just have to be persistent with the exercises. I did them every single day, 3-4 times per day for months or a year. My breathing is stabilized enough that moderate daily exercise and one Buteyko exercise per day or even every other day keeps my breathing somewhat under control, though I still do struggle with SOB daily. It's at least not as bad and is manageable. Look into that if you haven't; it helps me a great deal. Let us know how you are doing.

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@laurasue

Allison hello. I have been going through the exact same thing as you. I as well lived a healthy lifestyle and stopped smoking and a few weeks later woke up with the feeling of air hunger. I have seen many specialists as did you. I was told by many of them they don’t think it’s anxiety but they could find nothing wrong. I am very discouraged. I feel like my life has no joy anymore. It’s all suffering. I have been dealing with this for over a year. That being said I am going to the Mayo Clinic in May and hoping to find answers. Good luck to you and if anything get resolved I will share for sure

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@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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@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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What's the cost for crowd med? It wasn't clear on the website. Sounds interesting and I'm feeling desperate

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@allisonl

What's the cost for crowd med? It wasn't clear on the website. Sounds interesting and I'm feeling desperate

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@allisonl I know how you feel. Looks like there are three pricing tiers which you probably saw. When I do it, I think I will do the $299 option, so $299 a month with the average case being closed I think in 2 months. I believe if they solve the case, you pay a $400 dollar bonus. It's not completely clear to me either but that's what I've gathered from it. So it might be around $1000 for a completed case.

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@jerry6966

It is caused by overbreathing but can also also occur when you're just thinking about your breathing and manually controlling it. This is because the body usually takes very small breaths, because that's all the oxygen it needs. When you think about your breathing, you have a tendency to think you need larger breaths or breath faster therefore taking in more oxygen than you need. You're still breathing slowly, but because you're mentally controlling your breathing rather than letting your body control it automatically, taking in too much oxygen is the result. Even if you think you are breathing normally just the fact you are controlling it calmly can cause you to hyperventilate. When I say hyperventilate I don't mean gasping for breath I just mean the feeling of not being about to take a deep breath. Because you feel like you haven't gotten a deep breath, you are likely to try to take even deeper breaths. This will just cause you to hyperventilate more, as you continue to take in too much oxygen. Lots of people have hyperventilation syndrome and don't even know - it's only that we have become hyperaware of our breathing. My breathing was totally normal before this started - have never had an issue with breathing/ anxiety/sleeping and then it all hit me at once!

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So all of a sudden you just felt SOB ? That’s what happened to me. It’s hard to describe the feeling I have. It’s like I’m in the bottom of a swimming pool and can’t get to the top. Every once in awhile I can get a deep breath but it doesn’t help relieve my feelings. Did you ever have head pressure that came along with it ?

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@laurasue

So all of a sudden you just felt SOB ? That’s what happened to me. It’s hard to describe the feeling I have. It’s like I’m in the bottom of a swimming pool and can’t get to the top. Every once in awhile I can get a deep breath but it doesn’t help relieve my feelings. Did you ever have head pressure that came along with it ?

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Yes it came from nowhere. I woke up in the middle of the night and felt like I couldn't take a deep breath. Managed to eventually get back to sleep but had worked myself up about it. When I woke up that morning it's the first thing I thought about and I haven't stopped thinking about it since. Before that I'd basically never had a sick day. Had never been anxious or worried about anything and slept like a baby. This has really thrown me. Like I said earlier though I have basically tried everything but the amitriptyline seems to be the only thing that is working. I'm starting to feel normal again and it's just so great to not have that overwhelming feeling that I need to breath deeply constantly. No I've never had head pressure - just pressure in my chest.

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@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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