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.

@xzigalia

I would add that a thyroglossal duct cyst may also be a possibility. If you are a lady but have an Adam's apple, it's most likely a thyroglossal duct cyst.

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Hi there @xzigalia - What kind of stretches did you do to find relief? Since I'm willing to try anything and everything I would be interested to know what you utilized. Thanks for the comment!

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Hi @scrappy2020 – Welcome to Mayo Clinic Connect! It can be frustrating and terrifying not being able to see a doctor because of COVID, but you have come to the right place to talk with people who have similar experiences. I encourage you to read the posts here about shortness of breath, and see what others have done to improve it.

How long have you been experiencing shortness of breath, and how often does that happen, if you don’t mind sharing?

Hi @xzigalia and welcome to Mayo Clinic Connect! I am so glad to hear that you’ve identified the culprit and are feeling much better. Like @robkern3, I am curious about the kind of stretches you did – it is amazing that you’re able to find relief through stretching!

Do you have any lingering shortness of breath, or has that all been cleared?

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@scrappy2020

Hello, I was wondering if you have been tested for allergies. I have this same breathing issue and after talking with my brother who suffers with allergies he has it as well. The doctors gave him a puffer, unfortunately for me, COVID has prevented me from seeing a doctor, so no help or chance of relief.

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@scrappy2020- Good morning and welcome to Mayo Clinic Connect. Have you considered a teleconference with your doctor about this? How long have you had SOB? I gather that you have not been seen by anyone for this. Are you ill in any other way?

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I've had multiple appointments and testing. Most are fine. I do have an elevated diaphragm on the left, two liver lesions TBD and a rare neuromuscular disease multi-focal motor neuropathy.

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What if we are looking at SOB in the wrong way? What if it's not one thing that is causing your SOB but many or two or maybe it's being caused by something that hasn't been discovered yet? There are a lot of common symptoms with SOB as testimonies in this discussion show. And unfortunately we, as patients of some sort or another don't always connect things that may need to be connected like being overweight and SOB, an unusual structure in your chest, or unusual disease. What if we don't remember all of the exercises that we did and that something different showed up weeks later like exercise-induced asthma.
I don't know everything that causes my SOB because I'm stage 4 lung cancer, PTSD, COPD emphysema, chemo damage, and radiation damage, the list goes on and on. What if it's pressure from something inside of me is causing it and scans or X-rays don't pick it up?
We have learned a lot from COVID-19 and that there are connections in our bodies that we have never seen before, a climate that warms the earth and allows for living small things to move into new neighborhoods, strong winds that blow new air into our neighborhood that you aren't aware of, new pollutions caused by new chemicals that aren't being regulated.
If you have one major underlying condition, illness, disease, or cancer, and some minor things come up, like a cold. Maybe it changes your chemistry enough to cause a reaction, like SOB?
So thinking along these lines can you see any possibilites that it might be causing your SOB?

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@dominodad

I've had multiple appointments and testing. Most are fine. I do have an elevated diaphragm on the left, two liver lesions TBD and a rare neuromuscular disease multi-focal motor neuropathy.

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@dominodad- Do you think that any of these alone, or together might be causing your SOB? Have you asked a doctor these questions?

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@merpreb

@scrappy2020- Good morning and welcome to Mayo Clinic Connect. Have you considered a teleconference with your doctor about this? How long have you had SOB? I gather that you have not been seen by anyone for this. Are you ill in any other way?

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Hi Merry,

I called the doctor about it and they blew it off as anxiety. I know it's not anxiety, it's not year round for me. My left ear clogs in and out, chest gets a heaviness feeling to it when it acts up, a few child-like symptoms that are alleviated with Reactine. The SOB has been going on for weeks now... it's frustrating. Thank you for asking.

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@merpreb

What if we are looking at SOB in the wrong way? What if it's not one thing that is causing your SOB but many or two or maybe it's being caused by something that hasn't been discovered yet? There are a lot of common symptoms with SOB as testimonies in this discussion show. And unfortunately we, as patients of some sort or another don't always connect things that may need to be connected like being overweight and SOB, an unusual structure in your chest, or unusual disease. What if we don't remember all of the exercises that we did and that something different showed up weeks later like exercise-induced asthma.
I don't know everything that causes my SOB because I'm stage 4 lung cancer, PTSD, COPD emphysema, chemo damage, and radiation damage, the list goes on and on. What if it's pressure from something inside of me is causing it and scans or X-rays don't pick it up?
We have learned a lot from COVID-19 and that there are connections in our bodies that we have never seen before, a climate that warms the earth and allows for living small things to move into new neighborhoods, strong winds that blow new air into our neighborhood that you aren't aware of, new pollutions caused by new chemicals that aren't being regulated.
If you have one major underlying condition, illness, disease, or cancer, and some minor things come up, like a cold. Maybe it changes your chemistry enough to cause a reaction, like SOB?
So thinking along these lines can you see any possibilites that it might be causing your SOB?

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Merry, I am so sorry to hear of your stage 4 diagnosis and all the other issues going on. How are you managing? I had breast cancer, two years out now, no chemo, 21 radiation treatments and the lovely Tamoxifen to hopefully keep it at bay. The last time I remember my SOB being this awful was a month or so after I finished radiation. Spring season, that's why I feel it's allergies or pollen causing the SOB. Mind back then I went to emerge, was told I had a blood clot and stage 4 cancer. Turned out the ER was thankfully wrong, but sometimes I wonder if the spot on my lung is cancer and causing the SOB....

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@scrappy2020

Merry, I am so sorry to hear of your stage 4 diagnosis and all the other issues going on. How are you managing? I had breast cancer, two years out now, no chemo, 21 radiation treatments and the lovely Tamoxifen to hopefully keep it at bay. The last time I remember my SOB being this awful was a month or so after I finished radiation. Spring season, that's why I feel it's allergies or pollen causing the SOB. Mind back then I went to emerge, was told I had a blood clot and stage 4 cancer. Turned out the ER was thankfully wrong, but sometimes I wonder if the spot on my lung is cancer and causing the SOB....

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@scrapy2020- That's scary, a wrong diagnosis! Do you feel that you should be re-tested? How long ago was the CT scan that was taken to disprove the clot and cancer? DO you feel that you should be re-tested?

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@gabrielm

@katgts @ashleyh Thanks for sharing your struggles. I hope it helps us to all convene here to help each other find a solution. I made the original post a while back, but I still deal with the SOB. I will say that it's been better and more stable, but it goes up and down somewhat here and there. So I'm still hoping to find an answer. As I said in the original post, EVERYTHING came back normal from blood tests, to asthma tests, to lung function tests, sleep studies, regular checkups, heart check, lung/chest x-ray, swallow test, etc., etc. It may have to do with a hiatal hernia that I was diagnosed with some years ago, but I don't know how that would play into SOB. I also do have allergies I've been dealing with for a while now, but I still had the breathing problems even when I didn't have allergies.

Anyway, good luck to you and I hope you find an answer. Please do post here and talk about your progress- I'm sure someone here can help with something at some point. We WILL get to the bottom of this, I'm confident! 🙂 BTW, congrats on your recent marriage!

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I’m a 43 yrs old so they say healthy fella. I do take low dose 1mg a day a Xanax for anxiety. High pressure life I guess. Sucks but that’s the truth. I don’t smoke anymore (quit 2011) I don’t do drugs, and I have a glass of wine maybe 4 times a month. I’m 178lbs and 5’8 probably should be my normal 165 but that metabolism change and laziness. I’ll fix that.

I came across your original post. And after reading all the reply’s I think I feel like what people feel when they go to any group with something in common. Like AA or something that they can share completely without judgement. I’ve never been to a meeting or anything like that. But is it weird to say that for the ten minutes of resting I could breathe with grabbing my hips for that satisfied breath. There is no way to explain this to anyone if they haven’t experienced it. My 13 yr old daughter asks me what do mean you can’t breath?

This has been going on since 2011. In my life any situation that was stressful I would get anxiety and have a 20 second hit of SOB. But now, today it’s even in my sleep. It’s weird because it used to be I woke up gasping for air, room literally spinning for 2 minutes before the oxygen got back to me. Now that has changed to the daytime. About 3 minutes or less after I wake up and take that first deep breath. I’ve been in the hospital, Er, and every specialist except sleep study for sleep apnea. Just haven’t got there yet. Heart Stress test, Pulmonoligist, Gastro doctor (on nexium) for acid reflux that was giving me kidney area pain when I ate. Take one every 2-3 days and it keep it in check. Bought my one oxygen proximity sensor and it always at 98 or higher.

I’ll be sitting having a good week, good week meaning I’m not trying to satisfy a good breath every 3 minutes. And out of nowhere i actually feel that one HEAVY breath that triggers what I know is going to be a long week or weeks of struggle. I have fear of passing out and nobody being there. My chest hurts, heavy. Left arm And neck pain (never a heart attack thank god) been to the Er at least 6-7 times in the past 5 yrs. I try to go for a walk but I can’t have a conversation with my wife because walking and talking is labored. I’m invited to go places like fishing or riding, can’t because I have a pattern I do when I can’t breath and it’s my laying down at my house. How ridiculous is this? This thing has restricted me from playing knee hockey with my son and so many more things that makes me wanna cry. I guess the worst part is nobody can help. Nobody. If it goes away for a day or a week that’s like Xmas to me. But lately with the covid and being home more or less it’s been worse. Go figure my safe place has become a trigger now because I feel it everyday. When I talk with my staff sometimes that ask me if I’m ok, because they can see me trying to catch my breath. I was ok for a day last week and I help my neighbor carry a 50lb raft I to his backyard. As we were carrying it I felt the heavy chest and breathing like the air was thicker. It’s like a slower heavy intake that never gets to the full satisfactory part. I know I’m bouncing around I just never had anyone to talk to that understands. Only doctors or family members that only hear me but can’t truly know. Again I’ll say it, I could breath fine writing this entire post. Once I get up you all know what’s next.

Thanks for letting me ramble and I hope every last one of you find peace with this. Because it’s an actual living prison with no release date.

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