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.

@palmtrez123

@merry I wasn't taking any new med's when I tried the Prilosec. It was so weird that my hands were shaking like crazy after only 5 days. And stopped again after I stopped taking it.

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@palmtrez123- That is very weird. Did you ask your doctor what might have caused tremors?

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@greff

palmtrez123, my ENT stated that there are several medications in the same class of drugs. My ENT and pharmacist checked my other medications to ensure that it would not interact with my smorgasbord of meds. Just a thought. Also, when he scoped my throat,. My vocal cords were severely irritated, which is why he told me to gargle everytime (to get the inhalant medication rinsed off of the cords). He also mentioned that I get a bronchoscope done. I think I will once I see if these meds work.

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I just tried to call my md, but she's off today. My pharmacist knows me very well and all the med's I'm on, so I'll ask her what she thinks. I'm also seeing my new holistic dr's office on Tues. so that will be interesting to see if they found anything by reviewing all my prior tests.

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@merpreb

@palmtrez123- That is very weird. Did you ask your doctor what might have caused tremors?

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The only new med I took was the Prilosec. It was so weird. I looked up side effects and hand shaking is one of them. As soon as I stopped taking it, they went away. Forget about trying to talk to specialists. Where I live it takes months just to get an appointment. I see them for the first visit, they prescribe something new and say come back in two months. My allergist did that to me and after the two months were up he said he has no clue and told me to go to a pulmonologist. So, I went to a pulmo and he did the exact same thing. He did some blood tests, gave me some meds to try and after 2 months were up he said he don't know what else to try and gave up. So, in the meantime I just suffer with SOB. It's frustrating.

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@greff

I'll pray for you. This stuff ain't much fun is it.
Keep searching for answers. God bless.

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No, not fun at all. It's interesting that so many people have this. I've done so much research on my own and it's overwhelming. There are so many things that have the same symptoms. Thank you for the prayers. I'm keeping everyone in my thoughts and prayers as well.

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@palmtrez123

The only new med I took was the Prilosec. It was so weird. I looked up side effects and hand shaking is one of them. As soon as I stopped taking it, they went away. Forget about trying to talk to specialists. Where I live it takes months just to get an appointment. I see them for the first visit, they prescribe something new and say come back in two months. My allergist did that to me and after the two months were up he said he has no clue and told me to go to a pulmonologist. So, I went to a pulmo and he did the exact same thing. He did some blood tests, gave me some meds to try and after 2 months were up he said he don't know what else to try and gave up. So, in the meantime I just suffer with SOB. It's frustrating.

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@palmtrez123- Be fearless in your search for answers! Don't give up, ever. Keep looking for answers and get more opinions! I know how frustrating this is, but just keep on trying!

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@uzairkashtwari92

Hey Max! Please do let me know once you find out what it is.

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Will definitely because this always tired in my breath is ruining the quality of my life too

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Good site on google says that warm honey non caffineade tea, ginger root, gargling with warm salt water and resting ones vocal cords might help with SOB caused by vocal cord damage caused by acid refulx

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@palmtrez123

Hi everyone. I'm new on here as I just found this site today. I started having severe SOB daily since May, 2019. I have a history of asthma, however this is nothing like asthma. Albuterol has always helped with the asthma, but not this SOB. I've been to an allergist (nothing out of the ordinary for me), cardiologist (all tests were fine), CT Scan, chest xray, many bloods tests for everything imaginable which all came up fine. one pulmonolgist just plain gave up at my 2nd appt. and told me to go to the Mayo Clinic, my new pulmo put me on 10 days of doxycycline and switched me from Symbicort to Trelegy (which made it worse so I switched back to Symbicort - not that it helps but I just feel like I need to take something/anything. I've been to a nutritionist, acupuncturist, tried holistic IV therapy and nothing is helping. I eat healthy, and before this I had some anxiety and take meds for it, but this feels so different. Some days I feel like I won't wake up in the morning because I feel so bad and kind of surprised when I do. I just started going to yet another dr's office that does allopathic and holistic medicine. Not sure yet what they will come up with. I went to a gastro dr. who put me on Prilosec but I started getting tremors on it after 5 days so I stopped taking it. He didn't seem very concerned that I'm struggling to breathe, so I won't go back to him. I just don't know what is happening to my body. I was fine and then one day just woke up with this last May and have been suffering since then. I feel like my quality of life is down to about 10 percent. My chest hurts all the time and it's such a struggle to breathe. I have another appt. with the pulmo dr. in 2 weeks, I'll see what he suggests at that time.

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@palmtrez123 You may want to consider if a physical problem that could be interfering with breathing mechanics. I know this because I do this myself and start using my neck and upper chest muscles to breathe when I'm having trouble. I have thoracic outlet syndrome which affects my breathing and also allergies and asthma. Breathing like this causes anxiety.

You might want to have a physical therapy evaluation, and I would recommend a PT who also has the John Barnes myofascial release training. All the ribs and muscles need to be able to expand properly which creates a vacuum that allows the lungs to expand fully. If anything impairs movement of the rib cage, it can impair breathing. I do have asthma and thoracic outlet syndrome which causes neck and chest tightness under the collar bone where the nerves are passing on their way to the lungs. There are different nerves involved in breathing for the upper and lower parts of the lungs. I am also a cervical spine surgery patient, so I have some scar tissue near this area that will tighten if I don't keep working on it. I know I have a habit of sleeping on my right side, and my body is too tight on the left, so I have been reversing this to try to stretch out my tight left side. I think our habits can contribute to things like this. Physical therapy and MFR has helped me resolve some of these problems.

Thoracic outlet syndrome is more common than doctors think it is, and most doctors don't understand it because it isn't covered well in medical schools. Sometimes they don't consider a physical problem and how that might cause symptoms. It is worth asking a physical therapist about it, and tests for it will be Doppler imaging to see if the blood supply to the arms is cut off by raising the arm or with a change of head and neck position. Neurologists can diagnose it. Usually physical therapy is recommended for TOS. Doctors who understand it are usually at interdisciplinary medical centers like Mayo and it will be listed as a condition they treat. You might find that physical therapy will help even if you don't go through a lot of diagnosis. MFR works on tight muscle and tissue all over the body and once you learn how it works, you will be able to do a lot on your own at home. The therapist will be able to feel the tight pathways through your body.

Here are some links that may be of interest. I have also included our discussion on Myofascial Release that has a lot of information on where to find information and MFR therapists.

https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988
https://www.painscience.com/articles/respiration-connection.php
https://trainingandrehabilitation.com/how-truly-treat-thoracic-outlet-syndrome/

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@palmtrez123

Hi everyone. I'm new on here as I just found this site today. I started having severe SOB daily since May, 2019. I have a history of asthma, however this is nothing like asthma. Albuterol has always helped with the asthma, but not this SOB. I've been to an allergist (nothing out of the ordinary for me), cardiologist (all tests were fine), CT Scan, chest xray, many bloods tests for everything imaginable which all came up fine. one pulmonolgist just plain gave up at my 2nd appt. and told me to go to the Mayo Clinic, my new pulmo put me on 10 days of doxycycline and switched me from Symbicort to Trelegy (which made it worse so I switched back to Symbicort - not that it helps but I just feel like I need to take something/anything. I've been to a nutritionist, acupuncturist, tried holistic IV therapy and nothing is helping. I eat healthy, and before this I had some anxiety and take meds for it, but this feels so different. Some days I feel like I won't wake up in the morning because I feel so bad and kind of surprised when I do. I just started going to yet another dr's office that does allopathic and holistic medicine. Not sure yet what they will come up with. I went to a gastro dr. who put me on Prilosec but I started getting tremors on it after 5 days so I stopped taking it. He didn't seem very concerned that I'm struggling to breathe, so I won't go back to him. I just don't know what is happening to my body. I was fine and then one day just woke up with this last May and have been suffering since then. I feel like my quality of life is down to about 10 percent. My chest hurts all the time and it's such a struggle to breathe. I have another appt. with the pulmo dr. in 2 weeks, I'll see what he suggests at that time.

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Hi @palmtrez123, hang in there. I know how it feels. It's quite terrible, but don't ever give up looking for answers! Check out the Buteyko breathing method; http://learnbuteykoonline.com/. It's helped my symptoms greatly. It takes persistence and learning, but well worth it. It's totally natural since it's just breathing exercises, but I think it will help you manage your symptoms.

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@uzairkashtwari92

Thanks Gabriel! I am developing anxiety issues which is causing me panics and deep thoughts! I hope we all get healthy soon!

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Especially before coronavirus hits. That could spell lots of trouble for those with shortness of breath.

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