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, everyone. Thanks for opening this thread. I have suffered from this specific type of SOB for the last 4 years and this thread seemed like an oasis in the desert for me. Makes me feel less lonely or crazy knowing there are other people out there suffering from the same thing.

Just wanted to ask everyone (and hopefully help you) if you have checked any of your hormone levels , specifically cortisole ( the stress hormone ) and also thyroid hormones as well as testosterone/estrogen. I will explain why I am asking shortly.

My SOB started about 4 years ago when I also tested positive for PCOS (polycystic ovary syndrome - increased androgens in women which affect our period).
Initially, the SOB came and went. First year, I had for some days here and there. I also had some trouble burping here and there, like the burp wouldn't come out. Second year, SOB for a week or two here and there. Third year, I got severely sick for about a month with some sort of gastroenteritis which stressed the hell out of me and after that the SOB is constantly around with some days just being better than others. I also can't finish yawns and manage to take a deep breath in 1 out of 4.
I have been stressed a lot in the past ten years. I had panic attacks just by drinking a lot of coffee and energy drinks around the exams period in uni. So it makes sense to me that all this could be because of accumulated stress.

I was just looking at some old blood tests of mine and I stumbled upon one that I had 4 years ago when I was undergoing all these tests to check for PCOS. It seems that my cortisol was a bit elevated, above the normal range. I was pretty sure then my lack of period was because of stress as I had just lost my dad, and I always had problems with my period when stressed. I never had insulin resistance or inflammation to blame for my PCOS, like other women do. So maybe that could have been the first sign for me.
Now I was on the pill for about 2 years and going on and off of it gave me some fluctuations on my SOB as there is some correlation between cortisol and estrogen.

Now I know this isn't the case for everyone but maybe a cortisol test could help as it affects our flight or fight response and consequently SOB.

Having being tested by 4 Pulmonologists (3 spirometries), 1 Cardiologist, 2 Pathologists, 1 Gastroenterologist ( I even had 1 gastroscopy as I was told initially that my symptoms were due to GERD as many of you - came out clear , no damage to esophagus or anywhere else) and 1 endocrinologist throughout these years, apart from having PCOS (high androgens and recently some thyroid nodules) all my blood tests are beyond great and healthy. I am now very sure that this is because of anxiety.

I have measured my blood sugar many times, I have measured my blood pressure, my pulse, my oxygen saturation, even my saturation while working out (always above 96!). Even though it's difficult for me to work out I have noticed that my breathing is kinda better sometimes while dancing(!). So considering my tests, readings and not getting any worse I assume it's not heart or lungs.

The last pulmonologist I visited said that a lot of people, and particularly young people, had similar feeling of SOB after COVID. He told me that if it was asthma I wouldn't have the feeling ALL day but it would just come and go. Trying an inhaler didn't help either. When I left his office I was really calm and the SOB had gone away for some weeks. I was really happy. Then I went to the gym and overexerted myself and it came back (maybe cortisol rise?)
Cardiologist said I wouldn't be able to do the slightest at the gym if it was heart, but even though I had SOB I dint feel tired lifting weights or anything.
My pathologist was the first one to tell me it was anxiety and that I should drop taking Omeprazole and other medicine for GERD as I had none of it. Am so glad I listened to her as she was right and I was missing on so much great food for so long.

Am kinda ashamed of having been through all that but I really hope that this can help someone else to skip dragging oneself through this suffering and seek the right help.

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PS I wanted to comment some things that I read on other posts:

1. If you take a pill, like a vitamin for example, and you think it works right away , it probably works like a placebo as most of them need at least a month to see a noticeable difference

2. There is a difference of phase between the stress and the symptoms. You will, mostly , not feel the SOB while you are stressed but right after.

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@dampiera

I am VERY fortunate, yes. Just as things could always be better they can also always be worse.

I’m exploring dietary changes, starting with cutting out dairy. I’m also going to look into the alternative for a CPAP (Inspire). I don’t mind using the CPAP at all, but I do believe that it is causing issues with my esophageal sphincter.

Since this began 30 years ago but has steadily worsened in the last few years I think that diet would only be a factor if something has changed physiologically. I’m betting on either a hernia or reflux. It’s a direction, though. I didn’t even have that until finding this forum, so thank you so much for sharing your experience!

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Definitely keep us informed on your journey, especially when you get checked for a hernia or reflux. It's always good to know what people find out to possibly learn of any connection to the breathing issues which may help others look into similar things.

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@barry98888

I had a holter monitor hooked up to me for a day, some years ago. Based on what I now know about my test results my mistake at the time was to rest every time I started becoming out of breath. It turns out that when I don't stop to have a rest my heart rate just keeps rising to dangerous levels. Resting seemed to keep my heart rate in a normal range so the test failed to prove anything at the time.

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Wow that's interesting. It seems it was a good tool and worthwhile to do. It's definitely a good thing to keep in mind especially if anyone suspects something might be going on with their heart. I'd imagine that doctors wouldn't have caught this without the device; you now know to rest more!

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@dcm8299

Has anyone looked into Mullein Leaf?? Traditionally, has been used to help relax the inflammation in the bronchioles. Even as far back as ancient Greece, there are indications that it was used to treat respiratory conditions. Like many on this thread, I suffer from constant air hunger, sigh breath, yawning efforts to take a deep breath. Once again, I had a CT scan of the chest come back completely normal. PFT's at Johns Hopkins have ruled out any possibility for obstructive and/or restrictive lung disease. I've been cleared by Cardiology. They're interested in looking at allergic asthma. My next step is to get allergy tested. Long story short, an associate overheard a conversation I was having about asthma and familiarized me with the Mullein Leaf supplement. He said that he's suffered from asthma his entire life and would NEVER leave the house without his inhaler and used multiple times throughout the day, every day. Since taking the supplement he hasn't used his inhaler in 5 months. He's lost weight, the air hunger has become totally unnoticeable, has more energy and his body feels better. Apparently, Mullein Leaf has a beneficial effect on inflammation. Of course, I ordered it immediately as I'm willing to try anything to help resolve this. It was at my front door this morning. I started taking it this morning. We'll see. Give it a few days to a week.

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Hi @dcm82999, thank you for sharing. This is great, especially for those who want to focus on more natural treatments. Please check in and let us know how your health is with this supplement. It'd be great to know if it improves your symptoms and overall health.

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@arikalisanne

I am going through something amazingly similar. The inability to take a deep breath. Forcing a yawn- when I even can. It was on and off for a while and I thought it was GERD and I went on Prevacid and a million other gerd medications for 2 years. At first I thought I had solved it. But then it came back. I have been to a million doctors who first said, yeah it could be GERD but then said no, doesn’t really sound like GERD as I have no other gerd symptoms. Thought it was post nasal drip but now I’m on an antihistamine and 2 nasal sprays and while the post nasal drip is much better, the SOB is about the same. I have been to my primary care doctor, cardiologist, 2 ENTs, 2 allergists, psychiatrist, and chiropractor. The main answer I have gotten is “it’s anxiety.” Well I do have anxiety but I’m on medication for it and the breathing issue does not seem to be timed to my anxiety and and often times the breathing issue IS the cause of the anxiety. This problem occurs intermittently all day long and also when I’m sleeping at night. I don’t notice it when I’m distracted, exercising and talking seem to improve it. I find it’s easier to breathe when I’m leaning slightly forward. But it’s a real thing, I’m not making it up. I’m worried it’s impacting my health in some way. And everyone I know is tired of hearing about it and writing it off to my hypochondria. But I need some help. Has anyone solved this?

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Hi @arikalisanne, have you gotten a blood test done?
At least you ruled out many things by getting the tests done. The symptoms don't seem to line up with your anxiety- are you aware of anything that it could align with or does it come and go seemingly randomly?
Also, what kind of exercise do you do?

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@gabrielm

Wow that's interesting. It seems it was a good tool and worthwhile to do. It's definitely a good thing to keep in mind especially if anyone suspects something might be going on with their heart. I'd imagine that doctors wouldn't have caught this without the device; you now know to rest more!

Jump to this post

Actually no. The holter monitor is a fairly passive investigation, where you pace yourself through the day. At the time I was still able to walk about a hundred metres at a time before I needed to stop and rest for a while and I was able to do this while wearing the monitor. That was my mistake. It didn't find any evidence of a problem at the time and the cardiac ward wouldn't allow me to perform the cardiac stress test because I was out of breath from the moment they began to speed up the machine. For myself, it wasn't until I finally performed the 6 minute monitored walk as part of pulmonary function testing that the problem became apparent. Unlike the holter monitor I treated the test as a de facto opportunity to perform the cardiac stress test. The result was that the test had to be discontinued due to my heart rate reaching dangerous levels because I wasn't trying to pace myself but kept pushing myself to keep walking no matter how out of breath I became.

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@gabrielm

Hi @arikalisanne, have you gotten a blood test done?
At least you ruled out many things by getting the tests done. The symptoms don't seem to line up with your anxiety- are you aware of anything that it could align with or does it come and go seemingly randomly?
Also, what kind of exercise do you do?

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Yes had lots of blood works, all came back normal. Seems come and go randomly. I walk - both on the treadmill and outside and I do Pilates once a week. Thanks!!

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@mari015

Hi, everyone. Thanks for opening this thread. I have suffered from this specific type of SOB for the last 4 years and this thread seemed like an oasis in the desert for me. Makes me feel less lonely or crazy knowing there are other people out there suffering from the same thing.

Just wanted to ask everyone (and hopefully help you) if you have checked any of your hormone levels , specifically cortisole ( the stress hormone ) and also thyroid hormones as well as testosterone/estrogen. I will explain why I am asking shortly.

My SOB started about 4 years ago when I also tested positive for PCOS (polycystic ovary syndrome - increased androgens in women which affect our period).
Initially, the SOB came and went. First year, I had for some days here and there. I also had some trouble burping here and there, like the burp wouldn't come out. Second year, SOB for a week or two here and there. Third year, I got severely sick for about a month with some sort of gastroenteritis which stressed the hell out of me and after that the SOB is constantly around with some days just being better than others. I also can't finish yawns and manage to take a deep breath in 1 out of 4.
I have been stressed a lot in the past ten years. I had panic attacks just by drinking a lot of coffee and energy drinks around the exams period in uni. So it makes sense to me that all this could be because of accumulated stress.

I was just looking at some old blood tests of mine and I stumbled upon one that I had 4 years ago when I was undergoing all these tests to check for PCOS. It seems that my cortisol was a bit elevated, above the normal range. I was pretty sure then my lack of period was because of stress as I had just lost my dad, and I always had problems with my period when stressed. I never had insulin resistance or inflammation to blame for my PCOS, like other women do. So maybe that could have been the first sign for me.
Now I was on the pill for about 2 years and going on and off of it gave me some fluctuations on my SOB as there is some correlation between cortisol and estrogen.

Now I know this isn't the case for everyone but maybe a cortisol test could help as it affects our flight or fight response and consequently SOB.

Having being tested by 4 Pulmonologists (3 spirometries), 1 Cardiologist, 2 Pathologists, 1 Gastroenterologist ( I even had 1 gastroscopy as I was told initially that my symptoms were due to GERD as many of you - came out clear , no damage to esophagus or anywhere else) and 1 endocrinologist throughout these years, apart from having PCOS (high androgens and recently some thyroid nodules) all my blood tests are beyond great and healthy. I am now very sure that this is because of anxiety.

I have measured my blood sugar many times, I have measured my blood pressure, my pulse, my oxygen saturation, even my saturation while working out (always above 96!). Even though it's difficult for me to work out I have noticed that my breathing is kinda better sometimes while dancing(!). So considering my tests, readings and not getting any worse I assume it's not heart or lungs.

The last pulmonologist I visited said that a lot of people, and particularly young people, had similar feeling of SOB after COVID. He told me that if it was asthma I wouldn't have the feeling ALL day but it would just come and go. Trying an inhaler didn't help either. When I left his office I was really calm and the SOB had gone away for some weeks. I was really happy. Then I went to the gym and overexerted myself and it came back (maybe cortisol rise?)
Cardiologist said I wouldn't be able to do the slightest at the gym if it was heart, but even though I had SOB I dint feel tired lifting weights or anything.
My pathologist was the first one to tell me it was anxiety and that I should drop taking Omeprazole and other medicine for GERD as I had none of it. Am so glad I listened to her as she was right and I was missing on so much great food for so long.

Am kinda ashamed of having been through all that but I really hope that this can help someone else to skip dragging oneself through this suffering and seek the right help.

Jump to this post

Omg my experience was so similar. I was extremely stressed out from the Covid of it - never had Covid but still mask indoors, and it was during the pandemic this all manifested.
Also have been to a lot of doctors, also was on a ppi for years for no reason (though sometimes I Still wonder if it’s gerd bc for a while the meds seemed to help - placebo effect I think. For me exercises helps a bit and doesn’t make it worse. Will start looking into cortisol i don’t know if I’ve ever had that checked but it would make sense…

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@arikalisanne

I tried Zoloft and lexapro - not for this specific issue but for anxiety in general and both made everything worse - turns out I can’t do SSRIs. I’m on an anxiolytic called Buspar right now but I’m worried it’s losing its effectiveness. But it is helpful to know that solving that piece worked for you. Thank you.

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Has your physician been watching your liver enzyme tests? I had a really negative response to the antidepressants which I was put on, when they misdiagnosed my liver failure as psychological, and it took ages to establish what occurred. Buspirine (Buspar) is regarded as a relatively safer antidepressant for people with liver issues.

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