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.

@jenniferhunter

@catmom777 Coughing up blood in your phlegm is a symptom of pneumonia which will also cause shortness of breath and a rapid heartbeat. I sent my dad to the emergency room when this happened many times and he would be treated with antibiotics. If this is happening to you, it would be best to have it checked out. Your doctor is the best resource on this, and coughing up blood is not normal, so you should consult your doctor. Allergies cause a lot of phlegm too, and I've had trouble with that, but I made changes with my air filter at home so it blows right on me at night and it helped a lot. This made a huge difference for me because my cats were triggering my asthma. We can coexist now, and I can breathe because of the precautions I'm taking. We are most vulnerable at night because it traps phlegm since we are not moving around. If you also have allergies, getting them under control will help your heart.

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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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@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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It's really awful not knowing what's going on. Since I've been diagnosed with "possible" pericarditis I'm getting heart flutter, trouble taking deep breaths, chest pain.....your symptoms sound similar but I'm not coughing. I hope the doctors will help you.

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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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Hey. Do you have a Facebook we should add eachother. I will talk whenever u need some help. I have the same issues. Although I have slightly overcame the shortness of breath

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@gabrielm Hello. I have had the same background (raised in smoking household) and I've had the same symptoms as you. My heart palpitations turned out to be superventricular tachycardia (SUV) I have had that off and on for 40 yrs. Was put on a heart med and told that if that didn't work then ablation may be a posibility. I found that the antihistamines I had been using were the major culprit of causimg rapid heartbeat. I had to have my heart stopped and restarted twice in the last five yrs due to hbpm being at 180 and rising. At 190, the paramedics stopped it & restarted it. I too used to enjoy a nightly cocktail. I think that combined with the antihistamines was a bad mix. I also have similar history and symptoms as you with your lungs. I went misdiagnosed for many years. My SOB and constant cough and phlegm turned out to be bronchiectasis with avium bacterium (mac) infection. All of my pulmonologists over the years missed the mac and pseudomonas infections because they never tested me for it. The next time you have a lot of phlegm, you can go in to your Dr's office and request a sputem test. Ask to be tested for mac & pseodomonas. Also, you could possibly have bronchiectasis; which can be diagnosed with a CT scan. I found that once I got the infectioms cleared out, the heart also straightened out. I still have SOB, some times are worse than others. I find that exercise helps a lot. I am mentioning the possibility of bronchiectasis because you have suffered with GERD for many years and a hietal hernia. Same here. It turns out that many acid reflux sufferers end up with bronchiectasis because they inhale stomach acid while they sleep. Please visit my group here on Connect called 'Mac and Bronchiectasis' and read through our threads. You may gain more insight. BTW, coughing up blood tinged phlegm is one of the symptoms of mac.I hope you can get to feeling better.

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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- Good morning. I am very concerned that you are coughing up blood. I know that it's scary when you see this. I remember the first time that I saw this and thought- not good. Have you been tested for COPD? With your history it might be likely. There are several reasons why a person coughs up blood. Some are not life threatening at all. I just read that you will be calling your doctor tomorrow. It's good that you are on top of this. It's very important not to put off seeking help when your heath changes. Have you had a CT before? What did it show? When was this? Please let me know what you find out. I'm here for you.
https://www.nhs.uk/conditions/coughing-up-blood/

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@laurasue

Hey. Do you have a Facebook we should add eachother. I will talk whenever u need some help. I have the same issues. Although I have slightly overcame the shortness of breath

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@laurasue- Good morning. We have private messaging on Connect but we hope that the two of you stay in this forum because what you discuss might help someone who might need your knowledge very much. Please reconsider.
for PM's go to that person't homepage by clicking on their name. On top it will say private message. Click on that and tada!

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@merpreb

@catmom777- Good morning. I am very concerned that you are coughing up blood. I know that it's scary when you see this. I remember the first time that I saw this and thought- not good. Have you been tested for COPD? With your history it might be likely. There are several reasons why a person coughs up blood. Some are not life threatening at all. I just read that you will be calling your doctor tomorrow. It's good that you are on top of this. It's very important not to put off seeking help when your heath changes. Have you had a CT before? What did it show? When was this? Please let me know what you find out. I'm here for you.
https://www.nhs.uk/conditions/coughing-up-blood/

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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- Try not to feel messy. It's just a state of confusion. You will get past it. Keep digging into your health with your doctor, CT scans, blood work, etc.

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@merpreb

@catmom777- Try not to feel messy. It's just a state of confusion. You will get past it. Keep digging into your health with your doctor, CT scans, blood work, etc.

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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

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- 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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