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 would think the same thing of me except that I got such severe smoke inhalation four years ago and my acid reflux has calmed down since I quit drinking coffee and wine. I have had difficulty breathing on & off for over a year + coughing on and off for over a year. The last three months my cough has been getting worse too. But, I can't diagnose myself, so I'm going to see a doctor.

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@catmom777- Isn't it awful when things creep back on us after we think that we are better? But Great news, you are taking action to get better and to take care of yourself! I applaud this because when I feel well my mood is so much better. Do you agree?

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@merpreb

@catmom777- Isn't it awful when things creep back on us after we think that we are better? But Great news, you are taking action to get better and to take care of yourself! I applaud this because when I feel well my mood is so much better. Do you agree?

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Agree. Went four days with no afib episodes but last night noticed my heart was being crazy, but it didn't go into full-on tachycardia with the 181 bpm that I had last week when I called the paramedics. It just acted weird. And my chest hurt also, under my left breast, so I had trouble getting to sleep. But this morning it's all fine! So odd. I think maybe I didn't drink enough fluids yesterday.

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@catmom777- Are you on any meds for this? Are you calling your doctor this AM?

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@merpreb

@catmom777- Are you on any meds for this? Are you calling your doctor this AM?

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I'm on Eliquis and Diltiazen, which is supposed to regulate my heart rate. There is nothing more my GP can do for me. I have to wait until I see the cardiologist in two weeks. Even if I go to the ER there is nothing they can do either. I get real scared when this happens, but this morning I woke up fine and my heart rate has been normal all morning. It seems my heart acts up when I'm tired, at night, so I need to try to not get tired until the cardiologist can evaluate me.
So, I just picked up my medical records from the pulmonary function test I had done a year ago and it states on there I might have asthma. It said that on the DLCO maneuver my lung function was less than 85% of vital capacity. My GOP did not tell me that. The rest of the test showed normal pulmonary function. I'm taking these test results to the cardiologist also.
I need to learn to cope with this. It's been a month now since my heart went nuts and I got diagnosed in the ER. It's clear it's not going to fix itself.
Thanks for listening.

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@catmom777

I have shortness of breath also, but I know the reason for mine--growing up in a smoking household, repeated bronchitis, and smoke inhalation four years ago. I have the same symptoms as you though. I never can get a full lung full of air. I have hiked up a steep hill for two days in a row now, and that helps for a little bit, but the next morning my SOB is back and I feel oxygen starved. The big deal for me though is that on 3/8 my heart went crazy, like it couldn't get enough oxygen, and called the paramedics and wound up in the ER where I was diagnosed with atrial fibrillation.
Also, you didn't mention if you coughed up phlegm. I cough up phlegm several times a day and sometimes it has tinges of blood in it.

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@catmom777 it sounds like you bounce in and out of rapid Afib. Your cardiologist should be able to help you titrate you medicine to help with theses spells. A lot of people live in Afib but not rapid afib and are put on blood thinners and the correct medicine and live normal lives. Afib alone can cause you to be short of breath and when its happening i bet you feel as though you have had a good cardio workout. It may help sometimes when you feel you are having AFib to bear down like you are having a bowel movement, this will sometimes convert you back to a sinus rhythm (maybe) . Maybe your doctor will suggest a heart monitor for you to wear so they can see exactly whats going on. Just stay positive and know its treatable and hopefully you will feel be
Better soon.

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@catmom777

That would not be a bad idea. I think a lot of my problems go back to feeling such tremendous guilt and shame over what happened to my daughter and what he put me through as well. I had three bad relationships in a row over 25 years and my kids got caught in the middle of them. But, the horrible pervert was the worst, and he had me trapped. I couldn't find a decent place to live so it was real hard to get out, even when living with him became unbearable. He was really messed up. A Vietnam vet and a psychopath--on mission to destroy us. I should have recognized he was messed up at the beginning and tried harder to stay away from him. But, I didn't. It's been along process of rebuilding our lives--13 years now. But, we are moving forward. My daughter doesn't blame me per se. She's resentful and doesn't trust me because I threw her under the bus. I did. There's no getting around it. But I drank to escape. Not much, just a glass or two of wine after work. I thought it helped me cope. So many years later I wind up with afib and some kind of lung issue. It's all related. One thing led to another. But, I'm dealing with that too. I have a busy week planned.
I hope you have a good week. Thanks for all your advice and being a listening ear.

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@catmom777 , here is something I think could help. Your biography becomes your biology. This book talks about the relationship between adverse childhood trauma and later the development of diseases such as heart and autoimmune diseases and tells you how you can heal and overcome this. I bought this book and think highly of it. Give it a look. https://donnajacksonnakazawa.com/childhood-disrupted/

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@jenniferhunter

@catmom777 , here is something I think could help. Your biography becomes your biology. This book talks about the relationship between adverse childhood trauma and later the development of diseases such as heart and autoimmune diseases and tells you how you can heal and overcome this. I bought this book and think highly of it. Give it a look. https://donnajacksonnakazawa.com/childhood-disrupted/

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OK, thanks. My sister is very much into that connection. On the ACES continuum we are six (she says seven). We had significant trauma. I"ll look into this book and tell my sister. She is doing better than I am at dealing with it all. I try to avoid it, she confronts it head-on, but I think gets obsessed about it and stuck. She mentioned just the other day that my health problems (while I've tried to hard to be healthy) are directly connected to our childhood. I have struggled with poor self-esteem my entire life and have always felt a need to escape reality because it's just too painful. But, I'll look for this book.

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@tonyagregg

@catmom777 it sounds like you bounce in and out of rapid Afib. Your cardiologist should be able to help you titrate you medicine to help with theses spells. A lot of people live in Afib but not rapid afib and are put on blood thinners and the correct medicine and live normal lives. Afib alone can cause you to be short of breath and when its happening i bet you feel as though you have had a good cardio workout. It may help sometimes when you feel you are having AFib to bear down like you are having a bowel movement, this will sometimes convert you back to a sinus rhythm (maybe) . Maybe your doctor will suggest a heart monitor for you to wear so they can see exactly whats going on. Just stay positive and know its treatable and hopefully you will feel be
Better soon.

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Yes, I have had a few tachycardia incidents since that first one on 3/8, but not since I went on this Diltziem last Thursday. Now my heart goes out of rhythm, like it did the night before last, which lasts a long time, hours, but I've had no racing/pounding heart since last Thursday (even though the Diltziem isn't supposed to act that fast). So, last night someone on one of these posts mentioned they drink V8 juice to balance the electrolytes when they feel an afib attack coming on. I went out and bought some, had a glass of it with my dinner, and NO afib incidents all night long. I still haven't had any, so I'm going on Day 2 of no incidents. I wonder if an electrolyte imbalance was the culprit all along? I did say earlier that I would up in the hospital a couple weeks ago because I felt so sick I thought I was dying and my sodium level was only 127 when it's supposed to be 136. Once they got my sodium level up to 132 I felt a lot better.
After my diagnosis they said hydrate, so I did, but I overdid it apparently and washed the sodium out of my body.

What a journey. And yes, I do feel short of breath and tired after an afib episode. I have tried the vagal maneuver but it didn't seem to help. Splashing my face several times with very cold water helped slow my heart down though.

Less than two weeks now until my cardiologist appointment. I hope he can help me. I feel a lot better today for whatever reason (the V8 juice or no afib episodes for over 48 hours?) so I feel like I'm going to live through this now.

Thanks for the comments. They are all helping me along, to figure out what might be going on, to help me cope, and for my sanity.

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I have had these issues. It started when I was around 12. It was on and off for a few years seemed to get worse during pregnancy and after. I thought I was anemic and started taking iron. Seemed to help for years. Then about a month and a half ago it started again very bad. Like everyone else some days are better than others and I feel a lot better. Other days is very bad. I wanted to check and see how many people taking the prilosec felt it helped. I dont understand why after 12 years it suddenly returned. I dont think it's in my head, I just want relief. I'm praying for all and hopefully something will help. I have had my heart checked and lungs everything is good, so they say. I am worried because my 10 year old son asked me if I ever felt like I couldn't get a good breath. I do not want him to suffer like I have. I also have a twin who does the same thing. He does complain about heartburn so hopefully that is all it is and taking something for it will help. I hate anyone has this but glad you started this page so I know there are others that might can help.

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@catmom777

Thank you. I'm making an appointment on Monday. This is not right. Today was awful. I have had the hardest time breathing today of all, and I went on a short hike up a steep hill to try to expand my lungs, but it didn't help. I have had this feeling of dread so much over the past three weeks between my heart and my difficulty breathing. I wonder how long of a life I will have and then feel sad and want someone to talk to, but no one I know is going through anything like this. I would be going crazy inside my head if it weren't for these forums.

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I agree I feel the same way. Just knowing you're not alone, but not wanting people to experience this, helps in some way.

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