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.

@sueinmn

Welcome to Mayo Connect - We are a large and varied support community, so I am not surprised you didn't find the asthma group right away!
Here we are:
https://connect.mayoclinic.org/discussion/adult-onset-asthma/
To me, who has had asthma most of my adult life, six months seems soon to be starting an injectible therapy for newly diagnosed asthma, but I am not completely familiar with the most current protocols.

What treatments has the doctor tried so far? A few years ago, when I was not getting good results from my long-time therapy, my pulmonologist tried Symbicort (actually the generic version) and it has really helped me. Others in the asthma group have found relief from Trelegy or other inhalers originally intended to treat COPD.

What symptoms are you trying to control?

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My treatment consists of twice daily nebulizer with Albut and Ipratropium, followed by Wixela 500-50 and an Albut Rescue inhaler.
I have been to the ED twice, once in Dec and again in February. I have continued to have coughing, wheezing pretty much every day. My normal sat is now 94, but frequently decreases. I have chest heaviness and SOB most days at varying degrees. My energy level is low and I feel fatigued. I have been on Steroids and antibxs after each ED visit. I have a couple of days feeling some improvement, then boom, it's back. I have been in regular contact with my Pulmonologist who believes it will go away if it's Post Covid Asthma. Mine persists and can be very scary when I can't get a breath. My Pulmonologist says it's getting difficult to manage and that's why he suggested the bio-therapy as my next option. I will be seeing an Allergist for testing. I will do that before I make any other decisions. As you know the coughing can be so intense. My 2 grandchildren are scared to be around me, so my time with them is limited which is the worst. I also think getting this diagnosis at this age, which has become chronic, was hard bc I didn't know much about asthma. I didn't understand that some people will suffer every single day, as I have. I didn't know how sick I could become bc it was all new. I am so appreciative of your input and expertise and everyones willingness to share. I am so grateful for the Mayo Clinic groups as I have learned so much in such a short time. It was so helpful to read what other people experience that were similar to mine, but I couldn't put into words.
I was diagnosed with Rosacea about a year ago, also new to me. But I find my Rosacea is worse since my asthma diagnosis. I am on ATC antibxs for that. Anyone else notice a corelation?

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@thompaud

My treatment consists of twice daily nebulizer with Albut and Ipratropium, followed by Wixela 500-50 and an Albut Rescue inhaler.
I have been to the ED twice, once in Dec and again in February. I have continued to have coughing, wheezing pretty much every day. My normal sat is now 94, but frequently decreases. I have chest heaviness and SOB most days at varying degrees. My energy level is low and I feel fatigued. I have been on Steroids and antibxs after each ED visit. I have a couple of days feeling some improvement, then boom, it's back. I have been in regular contact with my Pulmonologist who believes it will go away if it's Post Covid Asthma. Mine persists and can be very scary when I can't get a breath. My Pulmonologist says it's getting difficult to manage and that's why he suggested the bio-therapy as my next option. I will be seeing an Allergist for testing. I will do that before I make any other decisions. As you know the coughing can be so intense. My 2 grandchildren are scared to be around me, so my time with them is limited which is the worst. I also think getting this diagnosis at this age, which has become chronic, was hard bc I didn't know much about asthma. I didn't understand that some people will suffer every single day, as I have. I didn't know how sick I could become bc it was all new. I am so appreciative of your input and expertise and everyones willingness to share. I am so grateful for the Mayo Clinic groups as I have learned so much in such a short time. It was so helpful to read what other people experience that were similar to mine, but I couldn't put into words.
I was diagnosed with Rosacea about a year ago, also new to me. But I find my Rosacea is worse since my asthma diagnosis. I am on ATC antibxs for that. Anyone else notice a corelation?

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Two things come to mind - What does CT imaging show is going on in your lungs? Since the infections are recurring, has the pulmonologist taken a sputum sample and had it cultured to see what is caus I ng the infection, or referred you to an infectious disease specialist? It is possible that you have an unusual bacterial or fungal infection that is not responding to standard antibiotics.

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@stew80

I have the same problem. Shortness of breath with no explanation. It's been an issue for years but is getting worse now. I wake up breathless and often have to leave the bed to get better breathing when I'm upright. It's scary at times. I've had all the tests and no doctor can explain why. I play tennis and really push the limit for exercise. The breathing is actually a bit better when I do that. The SOB is at its worst when I am idle and at rest.
It is more than annoying. It's impacting my quality of life. One doctor said it may be because of my body type, chest etc. I'm actually long and lean and underweight if anything. So frustrating ...

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Get an x-ray of your spine and look for a herniated disc perhaps? That is what happened to me and it caused me problems for 12 years. I was at doctors all over, had every test possible and was healthy and strong working out at the gym… a neurosurgeon did X-ray and put in a spacer at C5/6 and I was fine after healing.

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@grandma72

Get an x-ray of your spine and look for a herniated disc perhaps? That is what happened to me and it caused me problems for 12 years. I was at doctors all over, had every test possible and was healthy and strong working out at the gym… a neurosurgeon did X-ray and put in a spacer at C5/6 and I was fine after healing.

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Thanks for this tip, 72. I'll follow up with an x-ray. I'll try anything. I'm glad you found the culprit.

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I’m not sure you’re still posting, but I have the same symptoms. Have had many tests as well with no diagnosis.
Do you still experience SOB or have you found something that has helped?

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To Gabe: I’m not sure you’re still posting, but I have the same symptoms. Have had many tests as well with no diagnosis.
Do you still experience SOB or have you found something that has helped?

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@loumary

To Gabe: I’m not sure you’re still posting, but I have the same symptoms. Have had many tests as well with no diagnosis.
Do you still experience SOB or have you found something that has helped?

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Hi @loumary, I am still posting indeed! I do still experience air hunger but it's manageable. I've been able to manage symptoms using a variety of strategies, summarized in this post; https://connect.mayoclinic.org/discussion/living-with-mysterious-air-hunger-my-journey-and-tips-for-managing/

Feel free to take a read and let me know if you have any questions.

How long have you been dealing with your air hunger?

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@qmama

I had this so terribly bad in 2020. I started Lexapro and it vanished within a couple months. Now it’s kind of back. It’s more yawning and being able to complete the yawn. If I’m distracted it disappears. But when I’m focused it’s AWFUL. Just constant trying to yawn and yawn and yawn until I feel satisfied. It’s so annoying. I’ve had a million tests when it first appeared but now I’m wondering if I need to run the gamut again 🙃🥴

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Hi @qmama, seems like anxiety may have played a pretty big part of your breathing symptoms. Are you regularly taking the Laxapro still?

I get what you mean by not being able to complete the yawn. I too find that being distracted diminishes the symptoms, or at least the perception of symptoms. Definitely part of my routine of managing symptoms; I like to keep busy!

What sorts of tests were done when you had them? I assume lung and heart tests- how about bloodwork, or allergy testing, etc.?

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@stew80

I have the same problem. Shortness of breath with no explanation. It's been an issue for years but is getting worse now. I wake up breathless and often have to leave the bed to get better breathing when I'm upright. It's scary at times. I've had all the tests and no doctor can explain why. I play tennis and really push the limit for exercise. The breathing is actually a bit better when I do that. The SOB is at its worst when I am idle and at rest.
It is more than annoying. It's impacting my quality of life. One doctor said it may be because of my body type, chest etc. I'm actually long and lean and underweight if anything. So frustrating ...

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Hi @stew80, I'm sorry you're dealing with this. I know the struggle- waking up breathless and having to get up right. I, too, went through many tests and doctors with no explanation. It's indeed frustrating- you almost hope they diagnose you with something so at least there's an explanation! But some symptoms are mysterious and don't seem to be attached with anything specific.

Over the years, I've found sort of a routine of various things that help me manage my symptoms. I also found that when I used to exercise intensely, especially cardio, that I would temporarily feel better then would get worse as I rested. I ultimately concluded for myself that intense exercises may have been doing me more harm than good. But what has helped me is light to moderate weight lifting with slow, nasal breathing, and daily walks. I no longer run like I used to. I do bicycle now and then with my kids but don't push myself too hard.

Do you breathe through your mouth when exercising? I've found that controlled nasal breathing especially during exercise helps keep symptoms at bay.

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Gabe - I appreciate your sharing. I've tried all the suggested breathing techniques. At rest I do breath nasally but sleeping, I'm a mouth breather. I can tell that because my mouth is very dry. As you say, exercise can lessen the problem which is weird. After a long time with this issue I have come to the realization that I just have to manage and live with it. There have been a few scary times in the dead of night when I just can't get my breath. I guess the good news is that all the tests I have had don't show anything dire but, as you also say, sometimes you wish a reason is identified (just not a reason that can't be fixed).

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