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Mysterious shortness of breath: What has helped you?
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.
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To answer a few questions-
There is a spectrum of disease due to COVID-19. Most people do not have lung involvement or damage- the few who end up hospitalized or passing away often do. There is a significant number of patients who are even asymptomatic or minimally symptomatic and they will not have lung involvement. In my case, I have chills, fatigue, headache, etc but no cough or other respiratory symptoms.
In terms of treatment, there is really no set treatment and that is part of the problem; again, this only applies to those who have normal testing for the usual causes of shortness of breath. As I mentioned, if you read posters, you will read a wide variety of things tried with varying degrees of success. If someone has underlying reflux, including laryngopharyngeal reflux, treating that is reasonable. There is debate about the varying breathing exercises that are mentioned; it does make some sense to me to try to avoid overbreathing to break the cycle you can get into- in other words, when you are driven to sigh/take that deep breath, try not to do it because you really don't "need" to do it from a physiologic perspective.
A trial of an antidepressant is reasonable. SSRI/SNRIs are the most commonly used medications; there is a paper regarding the benefit of amitriptyline in hyperventilation; amitriptyline is an older antidepressant which has positive effects in a number of conditions.
I think psychotherapy may be helpful for some.
At the end of the day, accepting the problem and then trying not to focus on it is probably as important as anything and over the time the hope is that it will fade.
In terms of some of the medical causes that have been mentioned- I'm not aware of any medical condition in which an isolated high bilirubin would play a role; that being said, if a lab abnormality is found, it should be explained.
Many mention allergy testing- airborne allergy does not cause this condition. If testing is performed and you are found to be allergic, treatment would address the typical allergic rhinitis symptoms (nasal/eye) but would be very unlikely to matter from a perspective of this breathing condition (outside of a possible placebo benefit).
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3 ReactionsThank you so much. Great information.
@peterson- Welcome to Mayo Clinic Connect. I'm so sorry that you are having all these problems plus doctors who don't agree on the cause. It's enough to give anyone added stress. I would think that after your test results show more problems with your heart that you might want to follow up with your cardiologist.
Mayo Clinic has a wonderful explanation and video explaining all about tachycardia and how why it causes SOB.
https://www.mayoclinic.org/diseases-conditions/tachycardia/symptoms-causes/syc-20355127
What did your cardiac physician say would be your follow-up? After watching this video and reading the blog, what do you think?
Thank you so much. This is very very helpful and reassuring.
I think you are absolutely right especially in the light of Dr. Sal51's comments.
My cardiologist said that I should make an appointment with a cardiologist at The Mayo Clinic where the pulmonologist and cardiologist work together , I have a appointment on June 26. The video was very helpful. It gave me some hope that a cardiologist might figure out what was wrong
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1 Reaction@peterson- Good morning. I'm glad to hear this. Videos often help me understand things. I like demonstrations, they stick like almond butter.
Will you let me know how things go? What does your doctor say about how to deal with this until your appointment?
My cardiologist quit so my pcp has been monitoring me. He put me on ditizem which is helping. I see a pulmonologist next week. I don’t particularly trust the pulmonologist. He just dismissed the cardiology symptoms as nothing to be concerned about. My pcp is wonderful though.
@peterson- I had to look up your medication as I don't have heart problems. "Diltiazem is used to treat high blood pressure and to control angina (chest pain). Diltiazem is in a class of medications called calcium-channel blockers. It works by relaxing the blood vessels so the heart does not have to pump as hard. It also increases the supply of blood and oxygen to the heart.
It's always wonderful when I find a doctor who I trust and really like and who is upfront with me. Since your heart is so important do you think that you will be looking for another cardiologist? I recommend that. PCP's are terrific, and some are brilliant but they aren't specialists. You need a heart specialist. Can you get a recommendation for one? And also for a new pulmonologist?
I see a pulmonologist from A large pulmonary group that is well known on May 9 th and a cardiologist from the Mayo Clinic June 26 th. It’s hard to wait so long to see a good cardiologist
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