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.

@brockstrickland

I’m experiencing shortness of breath along with chest wall , back jaw, headache,and shoulder pain and tingling pinky and ring finger does anyone know what this can be..? Was in super health prior to this 56 year old male -also have bad fatigue in the AM when I’m normally full of energy have had it for 5 months now.. thanks!

Jump to this post

Hi Brock, you'll notice that I removed your personal phone number from your message. Mayo Clinic Connect is a public forum and we suggest not posting personal contact information unless by private message so you don't get spam.

It sounds like you have a number of issues going on. Have you talked to your doctor about these symptoms? Have you been to any specialists for further investigation?

REPLY

But...what to do if you cannot get help from Mayo Clinic?

I followed the suggestions from some in this forum and contacted Mayo to be able to explain my wife's case. First of all, after completing a long form, it took more than TWO long weeks before I was able to have a telephone meeting with someone who, supposedly, was going to listen to her case and suggest how to best proceed.

I never knew if Mayo read my explanations about my wife's issues as contained in the form. The person I talked with just limited herself to suggest to see a Cardiologist. I asked her why not, instead, a Pulmonologist or an Internal Medicine doctor? I further asked why she was suggesting a Cardiologist when not even her story and much less her medical records had been reviewed? No answer from her side.

I explained to her that all tests (and they are endless) ran to this date and ordered by her Primary Care Physician, Pulmonologists (2), Cardiologist (2), Gastro doctors (2) , Allergy doctor and Pain doctor, show no positive results which could have helped to determine the cause of her shortness of breath.

I tried to explain that our aspiration was that, perhaps, her case was thoroughly evaluated by an Internal Medicine doctor who would work with a multidisciplinary group of doctors able to evaluate, as a group, her case. She did not appear to understand that that approach could be possible but after a lot of explanations from my side, finally, she suggested that I could fax her records to the Cardiology Department for a "Courtesy Evaluation".

I am now trying to get SHANDS (UF Hospital) in Gainesville, FL to share her records with Mayo in Jacksonville. Yet, numerous questions still remain. Perhaps the most relevant one is if there will be a thorough evaluation of the results given the fact that this will be merely a "courtesy revision" as it was explained to me.

Very discouraging and that, frankly, is an understatement.

REPLY
@pedrito

But...what to do if you cannot get help from Mayo Clinic?

I followed the suggestions from some in this forum and contacted Mayo to be able to explain my wife's case. First of all, after completing a long form, it took more than TWO long weeks before I was able to have a telephone meeting with someone who, supposedly, was going to listen to her case and suggest how to best proceed.

I never knew if Mayo read my explanations about my wife's issues as contained in the form. The person I talked with just limited herself to suggest to see a Cardiologist. I asked her why not, instead, a Pulmonologist or an Internal Medicine doctor? I further asked why she was suggesting a Cardiologist when not even her story and much less her medical records had been reviewed? No answer from her side.

I explained to her that all tests (and they are endless) ran to this date and ordered by her Primary Care Physician, Pulmonologists (2), Cardiologist (2), Gastro doctors (2) , Allergy doctor and Pain doctor, show no positive results which could have helped to determine the cause of her shortness of breath.

I tried to explain that our aspiration was that, perhaps, her case was thoroughly evaluated by an Internal Medicine doctor who would work with a multidisciplinary group of doctors able to evaluate, as a group, her case. She did not appear to understand that that approach could be possible but after a lot of explanations from my side, finally, she suggested that I could fax her records to the Cardiology Department for a "Courtesy Evaluation".

I am now trying to get SHANDS (UF Hospital) in Gainesville, FL to share her records with Mayo in Jacksonville. Yet, numerous questions still remain. Perhaps the most relevant one is if there will be a thorough evaluation of the results given the fact that this will be merely a "courtesy revision" as it was explained to me.

Very discouraging and that, frankly, is an understatement.

Jump to this post

@pedrito I am sure this is all incredibly challenging. I think it may be good to see what the "courtesy evaluation" may bring and then go from there. Will you come back and share your experience once you hear more?

REPLY

SOB back after about 1.5 months of ZERO symptoms. Before that I had SOB for five months. Been a week so far of nonstop SOB. Had a very bad anxiety attack Sunday that I think MAYBE triggered it — but before that was outside all day Saturday so could have been something in the air? Not stressed/depressed. Nothing else has really changed but I did start drinking caffeine and alcohol again so I’ll go ahead and cut those back out for good.

For me it feels like my lungs are restricted, kind of like a flare up, deep in the middle of my chest, and when I breathe I sometimes wheeze. Sometimes I cough and it’s dry.

Not doing more tests because they found nothing last time. Lungs are great, no blood clot, heart ok but not suspected cause of this, anxiety under control except for Sunday because I didn’t feel well, stress at an all time low.

Doing breathing exercises helped as well as walking and distracting myself from discomfort. My main goal is to not let my SOB trigger more anxiety attacks.

I can wish I could pinpoint the cause of the SOB flare ups. I forgot just how exhausting dealing with it daily can be.

REPLY
@j178452

SOB back after about 1.5 months of ZERO symptoms. Before that I had SOB for five months. Been a week so far of nonstop SOB. Had a very bad anxiety attack Sunday that I think MAYBE triggered it — but before that was outside all day Saturday so could have been something in the air? Not stressed/depressed. Nothing else has really changed but I did start drinking caffeine and alcohol again so I’ll go ahead and cut those back out for good.

For me it feels like my lungs are restricted, kind of like a flare up, deep in the middle of my chest, and when I breathe I sometimes wheeze. Sometimes I cough and it’s dry.

Not doing more tests because they found nothing last time. Lungs are great, no blood clot, heart ok but not suspected cause of this, anxiety under control except for Sunday because I didn’t feel well, stress at an all time low.

Doing breathing exercises helped as well as walking and distracting myself from discomfort. My main goal is to not let my SOB trigger more anxiety attacks.

I can wish I could pinpoint the cause of the SOB flare ups. I forgot just how exhausting dealing with it daily can be.

Jump to this post

Hmm... I think you may be your own diagnostician on this SOB issue. Keeping an informal journal might help. I am glad you have found your own coping strategies, because that SOB sensation can be so frightening!
Look at all the possible triggers:
Outdoors all day Saturday - reacting to pollen, pollution, sun, humidity or heat. Do you have known allergies?
Caffeine
Alcohol
Anxiety attack
Now you can introduce these factors one at a time, at least 7 days apart (except the anxiety!) and see what happens.

Good luck, and let us know how it goes.
Sue

REPLY

Update on my breathing; it’s been doing pretty good. I still have good days and bad days, but more good than bad. I’ve taken a broad approach and have tried to fight other things that may play a part for my breathing including a healthier diet, maintaining exercise, breathing exercises, relaxation techniques, and treating allergies. While I’m not cured, I’m far better than I was when I started this post and better than I was when this first started in 2012. Trying different things and never giving up has worked well for me and I suggest others to do the same if you ever feel stuck. How are you all faring? Any improvement or ideas?

REPLY

Any body found anything to help this

REPLY
@nickntn20

Any body found anything to help this

Jump to this post

@nickntn20- Welcome to Mayo Connect. As you can see there are hundreds and people who experience some form of SOB and each person's symptoms are a bit different. But the prevalent thinking about this seems to be anxiety, of some form.

Can you tell me more about your history and when this started for you?

REPLY

My SOB started about 4 months ago, 2 weeks after my second COVID vaccine shot. But it happens only after playing tennis continuously for 30 to 90 minutes. The X-rays image showed possible paralyzed diaphragm (elevated right side diaphragm) but sniff test and CT scan were normal so my doctors are ordering more tests (pulmonary functions test, echocardiogram, calcium score test). While waiting for further tests to find out, my SOB is mysterious to me at this moment. However the difference between my mysterious SOB and yours is that my problem only appears after 30-60 minutes of vigorous exercises.

REPLY
@kevintran

My SOB started about 4 months ago, 2 weeks after my second COVID vaccine shot. But it happens only after playing tennis continuously for 30 to 90 minutes. The X-rays image showed possible paralyzed diaphragm (elevated right side diaphragm) but sniff test and CT scan were normal so my doctors are ordering more tests (pulmonary functions test, echocardiogram, calcium score test). While waiting for further tests to find out, my SOB is mysterious to me at this moment. However the difference between my mysterious SOB and yours is that my problem only appears after 30-60 minutes of vigorous exercises.

Jump to this post

@kevintran- Have you thought about Exercise-induced asthma? I have it and nothing on my lung tests suggests that I have asthma.

https://www.mayoclinic.org/diseases-conditions/exercise-induced-asthma/symptoms-causes/syc-20372300
REPLY
Please sign in or register to post a reply.