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.

@catmom777

I've never had a CT before. A year ago I had a pulmonary function test and although I had trouble breathing into the machine, never heard anything back so assumed all was normal. Now I need to go pick up those results to show my cardiologist when I see him for the first time on the 16th.
Thanks for your message. I struggle every day now. I wake up in the middle of the night and think how just a few months ago I felt good as was healthy. Now I'm a mess.

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@catmom777 Def request a ct scan, it can reveal so much more than an x-ray. You may want to ask them to check for bronchiectasis just in case they are not used to looking for that. Please keep me posted.

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@windwalker

@catmom777 Def request a ct scan, it can reveal so much more than an x-ray. You may want to ask them to check for bronchiectasis just in case they are not used to looking for that. Please keep me posted.

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Thank you. I have never heard of that, but it makes sense that I would have it. My throat sometimes feels like it's burning so I wonder if some gastric fluids went down into my airways. Is there any cure?

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@catmom777

Thank you. I have never heard of that, but it makes sense that I would have it. My throat sometimes feels like it's burning so I wonder if some gastric fluids went down into my airways. Is there any cure?

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@catmom777 No. There is no cure for bronchiectasis (lungs), but you can remedy the acid reflux. Once lung tissue is damaged it is not reversable. But you can halt the progression and ease symptoms. Follow the rules of dealing with acid reflux. Do not eat or drink (except a little water) three hours before bedtime. Should raise head of bed 6" so that gravity helps you to keep your stomach acid down in your stomach. Avoid acid forming foods such as tomatoes and eggplants, alcohol and coffee, as well as others. You can Google the list. It will also tell you what foods you should eat to help alkinize your body. The root of most disease is inflammation, and that can be neutralized with proper diet. Acid reflux can cause all kinds of problems. Like I said, it can get inhaled into your lungs while you sleep and erode tissue there. It can erode your esophagus and cause Barrett's syndrome which can lead to esophageal cancer. My esophagus used to burn so bad that I couldn't walk. For some strange reason, it hurt worse when I moved. A scan showed that the stomach acid was coming up and eroding the tissue in my esophagus. I was told that I was on my way to Barrett's syndrome if I don't get a grip on it. I followed protocol and it pretty much went away.

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@catmom777 - trust me I know how you feel with the uncertainty and not knowing if there's a cure or if/when you get better. I felt the same way when my SOB was at its worst. I know it's hard, but be patient. You will find answers and you will get better. Yes it takes work and it's difficult dealing with the uncertainty, but out bodies our self-healing machines when we give it the right environment. If you haven't already done so, change your diet- eliminate sugar, caffeine, refined foods, alcohol. Fasting is good for healing- intermittent fasting and long-term fasting are good. But make sure you consult with your doctor about that. Don't lose hope! You will get better! Just keep searching for answers and different ways to cope with the condition.

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@gabrielm

@catmom777 - trust me I know how you feel with the uncertainty and not knowing if there's a cure or if/when you get better. I felt the same way when my SOB was at its worst. I know it's hard, but be patient. You will find answers and you will get better. Yes it takes work and it's difficult dealing with the uncertainty, but out bodies our self-healing machines when we give it the right environment. If you haven't already done so, change your diet- eliminate sugar, caffeine, refined foods, alcohol. Fasting is good for healing- intermittent fasting and long-term fasting are good. But make sure you consult with your doctor about that. Don't lose hope! You will get better! Just keep searching for answers and different ways to cope with the condition.

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@catmom777

Do you think I'll ever feel good again? I feel so rotten every day. I wonder if it's the Eliquis although the doctor said the drug was not supposed to cause any of the symptoms I described.

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@catmom777 To answer your question, Yes, you can feel good again. I felt like death warmed over for many years. I couldn't breathe very well, I coughed non-stop, and just about every muscle in my torso was pulled from constant and oftentimes violent coughing. Once I got the proper care and my lungs cleared from mac infection, my life totally changed. I never imagined that I could feel well again. In fact, I was certain I would die at the age of 58 like my mother did. Just take control of your health. Learn all you can about it, and do a mental check with yourself. Even if you cannot fully recover from something; you still have to tell yourself that you will. You would be amazed at the power of your own mind. Oftentimes, you become what you believe.

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@merpreb

@catmom777- Awww, I certainly hope so. Make your call to the doctor's first thing in the AM and get an early appointment as you can. That will help. You have to find out what is causing the blood in your cough. Hang tight, it's only a few hours from not. If you are in pain, bad pain then go to the ER! Please pay attention to coughing up blood. If you do go, which I think right now I'm inclined to think would be a good idea make sure that you bring the doctors up to date on everything. Be honest, don't hide anything.
Please let me know what you find out.

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I have been very honest with the docs. I told them I drank an average of 1.5 glasses of wine a night and every now and then two but that I also didn't have any wine some nights. I told them about the smoke inhalation four years ago, but you know ER docs, they just want to get your stabilized and move on to the next patient. We'll see what happens. Just talked to a friend and she wondered if my sodium and electrolytes got out of whack in all this. A couple weeks ago I felt like I was going to die I felt so badly and took a cab to the ER where they kept me in the hospital overnight because my sodium was so low (127 when normal is at least 136). They told me to pick up some Gatorade when they released me. It's a puzzle--a maze, trying to get through this. One thing leads to another and you get locked in this vortex of health problems that relate to each other and there seems to be no way out to get back to your former self. We all keep trying though.

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@windwalker

@catmom777 To answer your question, Yes, you can feel good again. I felt like death warmed over for many years. I couldn't breathe very well, I coughed non-stop, and just about every muscle in my torso was pulled from constant and oftentimes violent coughing. Once I got the proper care and my lungs cleared from mac infection, my life totally changed. I never imagined that I could feel well again. In fact, I was certain I would die at the age of 58 like my mother did. Just take control of your health. Learn all you can about it, and do a mental check with yourself. Even if you cannot fully recover from something; you still have to tell yourself that you will. You would be amazed at the power of your own mind. Oftentimes, you become what you believe.

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You are right. I posted something to my FB page about believing in yourself and thinking positive. Now I need to practice that on myself.

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@catmom777

I have been very honest with the docs. I told them I drank an average of 1.5 glasses of wine a night and every now and then two but that I also didn't have any wine some nights. I told them about the smoke inhalation four years ago, but you know ER docs, they just want to get your stabilized and move on to the next patient. We'll see what happens. Just talked to a friend and she wondered if my sodium and electrolytes got out of whack in all this. A couple weeks ago I felt like I was going to die I felt so badly and took a cab to the ER where they kept me in the hospital overnight because my sodium was so low (127 when normal is at least 136). They told me to pick up some Gatorade when they released me. It's a puzzle--a maze, trying to get through this. One thing leads to another and you get locked in this vortex of health problems that relate to each other and there seems to be no way out to get back to your former self. We all keep trying though.

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Now @catmom777 Listen to what you are saying about "no way" to get back to normal. You don't want that to come true do you? Of course not, so stop saying it. Terri is absolutely right about the powers of the mind and what a patient can do for themselves by advocating for their health, taking all the steps you can to get there, and believing you can do it. There is medicine in that.... good medicine. You do become what you believe. I have. I am on here trying to help patients learn how to do all this and how to face their fears and achieve their health goals. I wasn't this person before my life taught me these lessons. If you keep telling yourself that your health will fail and you expect to die, what do you think you are doing to your health by believing that? You have to take control of your thoughts, and in doing this, you take control of your health. No one can do this for you, and you have to want to get well. When people decide to die, their health fails and eventually they do. When people decide they want to live their fullest most positive life, it gives them energy to make that happen.

There is a lot you can control about the environment you live in, the healthy or unhealthy food you eat, the risks you take, the people who's opinions you listen to, and what you believe. I saw my aunt do this with cancer years ago. After receiving what should have been a fatal dose of chemotherapy from a medical mistake, she recovered from that and even had to learn how to walk again because of the nerve damage it caused. Her cancer had spread throughout her body. She could have easily given up. She was able to enjoy the rest of her life because she believed she could beat cancer, and she did for a long time. It should have taken her life in a year or two, and she lived ten years past that. She could have given up and decided that her life wasn't worth living, but she looked for ways to be positive. She had been a nurse and a school teacher, and was a kind, caring person. She'd lost her first husband to failing health, and then she married again to a friend they had known for years as a couple. I made her wedding cake. She did all of that living while she had cancer because she wanted to live, and live well.

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