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.

mcno | @mcno | Dec 13, 2020

In reply to @annajeab "Hi everyone! I wanted to share my story hoping that it may help someone out there..." + (show)

@annajeab

Hi everyone! I wanted to share my story hoping that it may help someone out there or at least give them some hope. I want to start out by saying I still have my "breathing issue" BUT I can say I feel about 60% better & have gotten back to enjoying my life again (something I never thought would be possible). I also want to say I believe that people here have a variety of different health problems causing similar symptoms on this thread & this is just my personal journey.

My breathing problem started April 19th 2020 while I was at work, I don't remember the exact minute that it started but at some point I felt like I wasn't getting enough oxygen. The term I can use to best describe this is "air hunger". I'm a nurse & work at a hospital so I instantly checked my oxygen level which was fine. It was though my brain was telling my body you need to take deeper satisfying breaths & fill your lungs all the way up in order to get enough air. I describe the sensation as the feeling you get when you're underwater & are on your last little bit of air & need to come up. The sensation of suffocation was there 24/7, every minute of every day except for when I was asleep. I checked myself into the ED thinking I had COVID (which was negative) & they sent me home. In the months that followed I struggled to get through every single day. I had nearly every test possible: Chest X ray x2, Pulmonary function test, EGD, 3 in depth blood work panels & Throat CT. I had Chiropractic adjustments, learned buteyko breathing & tried hypnotherapy four times. I had an allergy consult (revealing seasonal allergies which I take Claritin for). I saw GI doctor who performed an EGD which did reveal esophagitis, I took omeprazole for 2 months to heal that- but no change in my breathing. Grasping at straws, I saw a homeopathic doctor who did a full work up, the only thing found was low iron levels, I took iron supplements for a while but no improvement. I kept hitting dead ends & every doctor after finding no physical cause would say the same thing, "I think this is just anxiety". I didn't agree, but decided it was worth a shot so I took buspar for three months (did not help my breathing).

When this first began, I was obsessed with discovering the cause of my issue, as a nurse I couldn't wrap my mind around how I could feel like this for so long with no physical explanation & no break from the hell I was living in. My inability to solve the mystery coupled w the feeling that I was suffocating 24/7 caused me to spiral into a dark place. I have never been anxious or depressed in my entire life but I developed severe anxiety & depression. Multiple times in the first month, I contemplated suicide, as it seemed the only way to end what felt like a living nightmare. To people around me, I looked perfectly normal & it was frustrating to try to explain what I was experiencing to people. They would offer responses like "Just stop taking the deep breaths, it's not hard".

It's been 9 months & I am still conscious of my breathing & feel the need to take deeper than normal breaths to satisfy a sensation that returns again & again. I wish that I was writing this saying I am 100% better-- but though I am not "back to normal", I have made incredible progress & am feeling much better & I honestly feel that in time I will slowly find my way back to natural breathing. I have come to terms that this isn't one of those things that is going to disappear suddenly. Instead, my breathing gradually finds its balance as I stop trying to control it & one day I believe I will realize I am breathing without noticing ( the way it should be). After having every possible physical cause ruled out I truly believe that my breathing issue started from a place of severe stress/anxiety that I didn't even allow myself to feel which manifested into a physical symptom that has now become a habit/compulsion of sorts. The key to me moving forward & enjoying my life again, has been letting go of trying to "get better". I stopped searching for magic cures & researching for hours on the internet reading anecdotal stories. I notice that with each day I am able to focus on other things more & for the most part when I am busy & distracted with friends or work I hardly notice it all. It took me time to get to where I am. I spent months crying myself to sleep every night wondering why is this happening to me. Some things I do that have helped me on my journey to healing---I work out 4-5 times per week, eat healthy, speak positive affirmations outloud, meditate/do yoga daily & talk with my psychologist weekly for support. And most importantly I do my best to let go more each day & allow myself to not dwell on it.

I remind myself that no matter what, I will grow stronger through this & grow deeper compassion for those suffering around me. I remind myself that everything in life is temporary. That no matter how bleak things can seem, it won't stay this way forever & that my best days are yet to come. Everyone reading this that feels hopeless, that feels things will never get better. Don't quit. You are stronger than you know. Hugs xx

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I appreciate this so much! I have experienced this on and off for several years. It started after having an important relationship turn toxic, so a lot of anxiety was present. My doctor did blood work and since it and my vitals were fine, she determined it was anxiety or allergy induced. My counselor used to be a physical therapist and told me to try breathing from my diaphragm, and that does help a lot. I am not sure anxiety is the initial trigger, but it absolutely does not help! I have not been eating well the last few days, so I am interested in the comments about acid reflux. I tend to burp a lot when this sensation is present, but I never know if it’s the cause or the result of “gulping for air.” But after reading your post, I remembered that I hardly dealt with “air hunger” in the spring/early summer when I was exercising regularly and eating well. As a first-year teacher in grad school studying for state exams, I haven’t had time but it looks like I should make time! I will add that sometimes a little cry helps. I instantly felt some (not complete) relief after just a mini-cry a while ago, which is my main reason for thinking anxiety and stress play a part.

Thank you for what you do and for your transparency and encouragement here! You are strong!

mcno | @mcno | Dec 13, 2020

In reply to @itsnotanxiety "Just wanted to update about a month after my original post, I have made an appointment..." + (show)

It may not be the same, but several years ago, I had irritating tingling under and below my right shoulder blade very often for long periods of time. My doctor sent me to a physical therapist who said I was just had weak back muscles. The exercises were great and I haven’t had it since! I do notice that my air hunger is a little worse when I’ve had bad posture, so I try to be mindful of that when I am sitting for long periods.

Have you gotten any further yet?

yaramarthe | @yaramarthe | Dec 13, 2020

In reply to @anned "Hi @gabrielm I have never posted on one of these forums before but your original post..." + (show)

@anned

Hi @gabrielm I have never posted on one of these forums before but your original post describing the inability to get a good deep breath or a satisfying yawn intrigued me and I thought I would share my experience.

I am 41F and had these health conditions long before this started for me:
Life-long chronic asthma (usually triggered by illness)
Non- allergic rhinitis (so many symptoms always negative allergy tests)
Migraines
Prone to viruses and infections since childhood

Then came the mysterious SOB, chest tightness and unsatisfying yawns from out of no where. Makes me miserable. Like difficulty focusing on anything else and exhausted from not even sleeping well because of it.

Pulmonologist/immunologist prescribed Prednisone which, I think, helped some but the miserable inability to breathe deeply came right back when the meds were gone. Back to the same Dr and she trys adding a new inhaler to my daily regimen. I want that to help so much but nope, I still can't get no satisfaction. Back to the same Dr who starts sending me for every test imaginable. Lungs, heart, ENT, allergies, CT scans, lung function, stress test, a gazillion labs. Honestly nothing is showing up, my asthma is not that severe and seems pretty well under control. The only exception are the labs for my immune system were not great. She confirmed that I had been properly vaccinated as a child and then said the tests showed some kind of immuno-dysfunction. So she sent me to get a test vaccine to see what would happen. First labs after that were fine, I still had immunity. My doctor all throughout this has been thorough and kind, she says we have to wait to see over time to see if I retain my new immunity.

The pulmonologist believes me regarding the breathing problem, which is something at least. She has me start steroid nasal rinses. If you haven't done those every morning, you are really missing out, let me tell you. The pulmonologist wonders could it be vocal chord dysfunction and sends me to a voice therapist while we wait to retest. The voice therapist is great and compares notes with the ENT but rules out VCD. She however suggests Prilosec in case it's GERD. Sure why not? I'm just a test subject now anyway.

Meanwhile, I am still miserable and feeling like I can't breathe well, even though the results of the all the tests so far show I'm supposedly fine. It's slightly comforting to know you aren't dying when it feels like you are. Discouraged and desperate. I started searching online for clues. I try breathing exercises, calming exercises. Changing diet. Making sure I am not stressed. Drinking more water. And searching the most remote forums of the medical internet. I find a lot of people complain of similar symptoms but no one has an answer. Such a mystery. And then one day, I stumbled on to something. The article talked about Mast Cell Activation Syndrome. I was like, oh great another one of those internet conditions that people use as an excuse for why they can't eat gluten or dairy or any other foods that people all over the globe have consistently eaten for millennia. Nope I definitely don't want to have that. But the symptoms list included a bunch of stuff that I had always struggled with AND the feeling like you couldn't get a satisfying breath. Consider me curious. Not enough to buy the books sold by internet doctors but definitely wondering if there was anything that others had found worked to help the breathing thing. Remarkably the treatment seemed consistent across multiple sites and it wasn't some kind of expensive supplement or exclusive diet. It was a regimen of antihistamines. What??? No way that would do anything. But gosh...it can't hurt to ask the Dr., right?

So when I went back for blood work the Dr asked how I was doing? I said I was still feeling that struggle to breathe deeply and I couldn't remember the last time I had a satisfying yawn. And she stopped what she was doing and said, "the mind and the body are very connected. What has been going on at home lately? Have you thought about seeing a therapist?" I was immediately so frustrated and felt tears welling up in my eyes. Not the best way to prove I was emotionally and mentally sound. Lol However I got myself together and firmly said, "Look everything at home is fine. Except me, because I feel like I can't breathe. And not being able to yawn, as freaking crazy as that sounds, is what is making me miserable and it's not the other way around at all. But I assured her I was willing to try ANYTHING and would call a therapist. However, I finally mustered up the nerve to tell her I also had an idea I wanted to run by her. So I told her about my internet research. And learning about MCAS. That is all the doctor's very favorite thing, when their patients google the things they spent years and years and years of their lives studying. I'm sure she was just patiently humoring me and didn't think it was going to work. But she agreed that the extra doses of antihistamines wouldn't be dangerous even if they didn't help.

So I went home and got my meds together. I decided to do Claritin, Zyrtec and Zantac (instead of Prilosec) twice a day and just see what would happen. Yeah that was before we knew about Zantac's evil cancer causing properties. I ended up switching that out for Pepcid. Honestly I don't think I had my hopes all that high that it was going to help and for the first couple days I don't think it did. But a few days in and started noticing a sneaky good yawn. Not every time, but just here and there, every so often I would feel that satisfaction of a really good deep breath. At first I thought it was a fluke. But by the second week, it was happening more and more often. Ahhhh. Relief. I could breathe fully again.

Going back to the pulmonologist, I was like there's no way she is going to believe me. But she did! She didn't have great news for me about my immunity. And she wanted to start me on treatment for that. But when I described how much the antihistamines were helping me, she was really glad for me. I said I didn't think it even made any sense why they would have worked and she said oh it actually does make sense to me and then some Dr mumbo jumbo or other. I was ready to ditch the new inhaler right then and there and she could see I obviously felt much better and she told me she was really glad but we'd continue all that we were doing for the time being and hope it kept working.
So... over a year later... I'm happy to say it's still working. I have had some brief times where my breathing has been a little sketchy but I think it is connected to allergic type triggers. And overall I am doing so much better!!!! I am still using the asthma meds and have also added quercetin twice daily and Nasal Crom spray as needed.

Obviously I'm not a doctor. But OMG it's working for me. Nothing in this post is speculating that anyone else has the same diagnosis as I do or that what my doctor and I have tried for me will help you. What I hope to convey with this post, is that your health is worth fighting for. If at first you don't succeed, keep trying until you get the answers you need. And if your doctor is unwilling to help you adequately, then find a new doctor. You are paying them and nobody has time for that crap.

I would be glad to answer any questions y'all might have for me.

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How did you take the medication? I’m experiencing the same problem

yaramarthe | @yaramarthe | Dec 13, 2020

In reply to @annajeab "Hi everyone! I wanted to share my story hoping that it may help someone out there..." + (show)

@annajeab

Jump to this post

How did you take the antihistamine because I’m experiencing the sane issue

yaramarthe | @yaramarthe | Dec 13, 2020

In reply to @anned "Hi @gabrielm I have never posted on one of these forums before but your original post..." + (show)

@anned

I would be glad to answer any questions y'all might have for me.

Jump to this post

Please can you tell me how you were taking the antihistamines medication? I’m going through something similar

Merry, Alumni Mentor | @merpreb | Dec 13, 2020

In reply to @mcno "I appreciate this so much! I have experienced this on and off for several years. It..." + (show)

@mcno- Welcome to Mayo Clinic Connect. Thank you for joining us. Sometimes the answer is not about "getting rid of something" but coping with it and finding ways to cope.

I know that you are busy but I agree that you need to see a doctor about your SOB. There are a lot of us who have GERD (acid reflux)) who also have SOB.

Please let me know how you fare!

lyonsbrew | @lyonsbrew | Dec 19, 2020

I can’t tell you how validating it is to finally have found someone with (what sounds like) the exact same sensation I’ve been experiencing for about a month or 2 now. I’m 45 and healthy, moderately active, etc. those I’ve described it to always think I mean I can’t catch my breath as in after a hard workout but it’s not that at all!
I DO, however, suffer from anxiety and depression for my entire adult life, though this presentation of symptoms is entirely new so it’s distressing. I am definitely going to try the exercises and supplements you mentioned to see of it offers any relief.
So while I don’t have advice to offer, I do offer thanks for your post, and look forward to any insights from you or others.

jforero12 | @jforero12 | Dec 19, 2020

In reply to @tonyagregg "30 years ago did you see a doctor and blood test taken? If so, what did..." + (show)

Hello
I just joined this group. How is everyone feeling with the SOB? I started with this constant every day w a lot of yawning about 3 months ago. I have a lot of digestive issues. SIBO, fungus and very deficient in nutrients. Along low acid on stomach. Can low acid trigger short of breath?

Gabe, Volunteer Mentor | @gabrielm | Dec 19, 2020

In reply to @jforero12 "Hello I just joined this group. How is everyone feeling with the SOB? I started with..." + (show)

Hi @jforero12 , I think there are many things that can cause the feeling of air hunger. Many have not found a direct cause but are at least managing symptoms.

mayohealing | @mayohealing | Dec 19, 2020

Hi Gabriel

Just a thought/suggestion. Have you considered having a stress test (heart, arteries, etc).?

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