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.

@merpreb

@pandakay727- I can understand your reluctance to see any physician because of your traumatic experience as a child. But science has changed. Your problem was enough for you to have come to Connect, which is very good. It should also be enough to seek out medical advice. If you can put your fear aside it will help reduce any chance of this getting worse. I hope that you will reconsider going to a doctor..??

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@pandakay727 @merpreb I understand fear of the medical community. My childhood had many traumatic events as well with doctors and dentists, and this was something I had to learn to overcome. It is difficult, but we have to live with the consequences of the choices we make. It's easy to avoid something out of fear, but that can change your health status and even cause permanent disability that could have been prevented. It is life changing when you can defeat your fears, and it empowers you to live healthy and it feels good. It's a process that begins with one small step. You have to decide that you will no longer let fear make your choices for you. Ask all the questions you need to understand why your fear controls you, and to understand the health issues that you have. If you commit yourself to this, you can do it. I had to choose between facing my fear or a life of certain disability, and I know how difficult it has been for my parents to live in wheelchairs with their disabilities. This is why I am responding to you now to let you know that it is possible. We get trapped into our childhood thinking that we are defenseless and at the mercy of an authority who will cause pain to us and who won't listen. We are vulnerable and powerless. As adults, we get to make our own choices, and this childish thought pattern doesn't really serve us anymore. We can weigh the pros and cons and choose our best possible outcome. That is empowering. Sometimes we don't know how much courage we have inside until we are tested.

Music is healing, and since you have a song you've connected with, use it every chance you get. If you read my Mayo story, I used art to calm my fears. I also used music that I could loose myself in along with deep relaxed breathing and I learned to lower my blood pressure. Music can take your mind somewhere else when you need to escape.

Here's my story. https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/

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@gabrielm

Wow @tonyagregg, that's great that you found the answer! So glad you are back to normal! Crazy that a food could cause such a symptom as SOB, but that's the way it goes. I will definitely look into food allergies; it's certainly possible I have been eating something consistently that could be the cause. Worth a shot to look into. Thanks for the good news update!

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@gabrielm @tonyagregg Food allergies absolutely can cause shortness of breath. That is true for me, and I have a whole list of foods I'm allergic too. Gluten is a big one, but also a lot of others. I figured it out with an elimination diet. I pretty much eat to lower inflammation and avoid the things that specifically cause problems.

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@jenniferhunter

@pandakay727 @merpreb I understand fear of the medical community. My childhood had many traumatic events as well with doctors and dentists, and this was something I had to learn to overcome. It is difficult, but we have to live with the consequences of the choices we make. It's easy to avoid something out of fear, but that can change your health status and even cause permanent disability that could have been prevented. It is life changing when you can defeat your fears, and it empowers you to live healthy and it feels good. It's a process that begins with one small step. You have to decide that you will no longer let fear make your choices for you. Ask all the questions you need to understand why your fear controls you, and to understand the health issues that you have. If you commit yourself to this, you can do it. I had to choose between facing my fear or a life of certain disability, and I know how difficult it has been for my parents to live in wheelchairs with their disabilities. This is why I am responding to you now to let you know that it is possible. We get trapped into our childhood thinking that we are defenseless and at the mercy of an authority who will cause pain to us and who won't listen. We are vulnerable and powerless. As adults, we get to make our own choices, and this childish thought pattern doesn't really serve us anymore. We can weigh the pros and cons and choose our best possible outcome. That is empowering. Sometimes we don't know how much courage we have inside until we are tested.

Music is healing, and since you have a song you've connected with, use it every chance you get. If you read my Mayo story, I used art to calm my fears. I also used music that I could loose myself in along with deep relaxed breathing and I learned to lower my blood pressure. Music can take your mind somewhere else when you need to escape.

Here's my story. https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/

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@jenniferhunter- Good afternoon Jennifer. I am familiar with most of your story and am really sorry that you had to endure so much growing up. Look at you now! You have overcome so much. I remember a long long time ago I had to have a tooth pulled. I have n idea which one. I hated my dentist. He was my mother's cousin and "old". My mom felt obliged because he was family. He pulled out, what I thought were pliers, put his hand on my chest and told me to open my mouth- and out came my tooth. I have blanked out any other visits I ever had with him. Until I had cancer I gagged every time I had to go to the dentist and bit my dentist on a couple of occasions.
Eventually he had to give me gas. Anyway I'm an excellent patient now but I can still see his office.
@pandakay727-Do you think that you can try to put your horrible situation in perspective and get help?

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@merpreb

@jenniferhunter- Good afternoon Jennifer. I am familiar with most of your story and am really sorry that you had to endure so much growing up. Look at you now! You have overcome so much. I remember a long long time ago I had to have a tooth pulled. I have n idea which one. I hated my dentist. He was my mother's cousin and "old". My mom felt obliged because he was family. He pulled out, what I thought were pliers, put his hand on my chest and told me to open my mouth- and out came my tooth. I have blanked out any other visits I ever had with him. Until I had cancer I gagged every time I had to go to the dentist and bit my dentist on a couple of occasions.
Eventually he had to give me gas. Anyway I'm an excellent patient now but I can still see his office.
@pandakay727-Do you think that you can try to put your horrible situation in perspective and get help?

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@merpreb Thanks, Merry. You've had quite a story too. I'm sorry you went through so much. When I was little and got my first cavity, the dentist was an older guy too and had no patience for me. Now that I have a new perspective, it's interesting when my doctors are younger than me and when they love their jobs, it helps me be comfortable as a patient. I'm a good patient now too. I had to have a procedure with an oral surgeon at the time I was working on the painting for my Mayo surgeon and I took the painting into his office and showed him the work in progress and told him the story, and my oral surgeon liked it. He was so nice to me, that I did a portrait drawing for him. He came to one of my art shows last fall and brought his kids. That meant a lot to me. I think it meant a lot to him too. Everyone likes to be appreciated, and I think that positive interaction helps me get great care as a patient. Medical professionals can have very stressful jobs, and I as a patient can do something about that and it helps me too. I find that if I am engaged on a personal level with my doctors, it helps me because I can think about them as a person outside of their profession instead of focusing on the procedure that I need.

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Today my breathing has returned to normal and the pain has faded. I got a great nights sleep last night. I’m not sure still what caused the SOB the other night but I’ve logged it into my migraine calendar to see if I can identify a trigger. I also had an albuterol inhaler called in from my doctor. Thank you to everyone for all of your support and advise. I’ll continue to follow the post and update as I seek medical treatment.

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@pandakay727

Today my breathing has returned to normal and the pain has faded. I got a great nights sleep last night. I’m not sure still what caused the SOB the other night but I’ve logged it into my migraine calendar to see if I can identify a trigger. I also had an albuterol inhaler called in from my doctor. Thank you to everyone for all of your support and advise. I’ll continue to follow the post and update as I seek medical treatment.

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I'm getting treated with Albuterol too and my hopes are high.

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@pandakay727- Hooray for you! I'm taking a great deep breath in celebration! What do you think finally turned the tide for you?

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@merpreb

@pandakay727- Hooray for you! I'm taking a great deep breath in celebration! What do you think finally turned the tide for you?

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I think that it was really allergy based that caused it. I was off work for a week and I did a lot of yard work and spring cleaning. I do randomly get issues through the year but nothing as bad as that first night.

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33/male in overall decent health (annual physical and blood work only says I'm overweight and high cholesterol but manageable). I've had the exact same symptoms as the first poster - on and off again for a decade, but it's come back hard the last few months. Some days I definitely find myself hyperventilating and other days it's not as bad.

One thing I've noticed lately for the first time is the slight lump when I swallow or breathe in. I wonder if it's GI related like so many posts alluded too. I realized I've been eating a lot of berries past few months (3x servings/day) so wonder if that's triggering it.

Hope you all find solace in that you're not the only one with this issue - hoping that we beat this together!

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@pleasebreath- Good morning. What a fitting sign in name! Welcome to Mayo Connect. I think, like many others on here, that you need to seek out a GI appointment. Can you get some reliable recommendations? One thing that makes my breathing harder (I'm a lung cancer survivor) is if I gain weight. I urge you to do that because, no matter what is causing your symptoms being overweight is never a good thing and it can exacerbate many things. I don't mean to scold you but when I gain just 5 lbs I find that I feel awful and my breathing is very strained with bouts of more severe breathing incidents.
Eating berries can be caustic to your inners so if you suspect that those are partially to blame tht I would stop them for a week and then eat what is more reasonable. You might want to check this out: https://www.register3.diet.mayoclinic.org/?utm_source=search&gclid=Cj0KCQjw7sDlBRC9ARIsAD-pDFqvH-vGHzgYk5wWhRlTvxymPPoH7hI5axQ6r6pLWCHyP7jCyVn9FXMaAhJfEALw_wcB&promo=52-qtr&utm_campaign=topbrandedexact&utm_medium=google_wix3a. It can be just a guideline to help.
Even if your SOB stops after you cut back on the berries and the lump in your throat stops I think that you should look into the cause of it. Or have you already?

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