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.

@joey84s

I doubt Anxiety for my case as well. I have this for 2 years up and down.

I will feel better when am happy and worse on sad or depressed.

Do you experience also tight neck upper chest pain some time?

When the medication started to work ?

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have you considered it could be LPR? Laryngopharyngeal Reflux, often called 'respiratory reflux.' LPR can be combined with GERD, some people have both GERD/LPR, some people just have one of the other. It can cause all the symptoms you describe and it is made worst by anxiety also- I am a fellow LPR sufferer and I have a hiatus hernia. Read Dr Jamie Koufman's blog on LPR- https://jamiekoufman.com/silent-reflux/ which lists all the symptoms. I constantly get tightness in my neck and pain around my vocal cords, its like being strangled from inside out and chest pain. To note- anxiety can cause a lot of throat symptoms also like tightness shortness of breath etc. But LPR/symptoms from hiatus hernia are so stressful they then cause the anxiety also so its a vicious cycle!

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@joey84s

I doubt Anxiety for my case as well. I have this for 2 years up and down.

I will feel better when am happy and worse on sad or depressed.

Do you experience also tight neck upper chest pain some time?

When the medication started to work ?

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No i dont feel any pain on my behind neck or chest but if you are
And all of your tests is good
Thats anxiety or depression
These two , can effect on any part of our bodies that we cant imagine
Im on 5th month with medication althought in this 5 months im change my medication untill found that made can help me
Im not completely good
But when im back and see my past year ...
God thanks

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@finn22

Omg! I developed the EXACT same issue a few years ago and have been to many doctors as well. I get SOB, yawn constantly but not necessarily tired and have to sigh throughout day. Just recently I am exploring if this is a result of damage to the genitofemoral nerve attached to Psoas muscle during surgery. Search Psoas Syndrome and Shortness of Breath, very interesting!! Did you by any chance have any abdominal surgery ever? I also have bulging discs in neck and thought it might be because of that. I also have like a numbness on the right side of throat and dull pain in right upper chest right shoulder blade. Hopefully we can get to the bottom of it, I will keep checking this post and will keep updating.

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I developed the same issue after going on a walk on a windy day. Sat down on couch and started loud barking coughs. Dozens of MRIs and gastro visits and blood tests. One blood test came back with lupus marker. RA said it was not that. My cough went away and now I have sorta like a guffaw cough, loud seal bark only once and random once a week maybe. I have terrible achy finger joints, worse in morning. The gastro saw a patch of something in my esophagus and tested me for Barrett’s esophagus. Negative on that. I did have a dentist visit that they accidentally sprayed a bleach combo cleaning solution in my mouth. I was first patient of the day. Maybe from that. I went to see an OMT at the recommendation of my primary. She was trying to move a rib in the front and get a “knot” out of my left shoulder blade. That was a year ago and I have severe pain in my shoulder blade and chest now. The shoulder blade pain keeps me up at night sometimes. Tremendous aching through to my chest. My sob is just like everyone here says. Can’t get it to release and yawning absolutely releases it. Just posting what is going on with me in hopes to piece this together for all of us. FYI i had two Drs. And a specialist write Mayo AZ to get me in. I called weekly for a year said they never received anything. My Drs. faxed them dozens of times. My primary was at a loss. Now we moved to another state and are working on getting insurance.

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@cindajune

I developed the same issue after going on a walk on a windy day. Sat down on couch and started loud barking coughs. Dozens of MRIs and gastro visits and blood tests. One blood test came back with lupus marker. RA said it was not that. My cough went away and now I have sorta like a guffaw cough, loud seal bark only once and random once a week maybe. I have terrible achy finger joints, worse in morning. The gastro saw a patch of something in my esophagus and tested me for Barrett’s esophagus. Negative on that. I did have a dentist visit that they accidentally sprayed a bleach combo cleaning solution in my mouth. I was first patient of the day. Maybe from that. I went to see an OMT at the recommendation of my primary. She was trying to move a rib in the front and get a “knot” out of my left shoulder blade. That was a year ago and I have severe pain in my shoulder blade and chest now. The shoulder blade pain keeps me up at night sometimes. Tremendous aching through to my chest. My sob is just like everyone here says. Can’t get it to release and yawning absolutely releases it. Just posting what is going on with me in hopes to piece this together for all of us. FYI i had two Drs. And a specialist write Mayo AZ to get me in. I called weekly for a year said they never received anything. My Drs. faxed them dozens of times. My primary was at a loss. Now we moved to another state and are working on getting insurance.

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Also, I can’t sit up at a table or in a regular chair for more than 5 minutes or the shortness of breath comes. I have to sit reclined back slightly.

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@cindajune

I developed the same issue after going on a walk on a windy day. Sat down on couch and started loud barking coughs. Dozens of MRIs and gastro visits and blood tests. One blood test came back with lupus marker. RA said it was not that. My cough went away and now I have sorta like a guffaw cough, loud seal bark only once and random once a week maybe. I have terrible achy finger joints, worse in morning. The gastro saw a patch of something in my esophagus and tested me for Barrett’s esophagus. Negative on that. I did have a dentist visit that they accidentally sprayed a bleach combo cleaning solution in my mouth. I was first patient of the day. Maybe from that. I went to see an OMT at the recommendation of my primary. She was trying to move a rib in the front and get a “knot” out of my left shoulder blade. That was a year ago and I have severe pain in my shoulder blade and chest now. The shoulder blade pain keeps me up at night sometimes. Tremendous aching through to my chest. My sob is just like everyone here says. Can’t get it to release and yawning absolutely releases it. Just posting what is going on with me in hopes to piece this together for all of us. FYI i had two Drs. And a specialist write Mayo AZ to get me in. I called weekly for a year said they never received anything. My Drs. faxed them dozens of times. My primary was at a loss. Now we moved to another state and are working on getting insurance.

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I find some positions/ movements may cause my SOB, as well. Have you had any X-rays of your cervical spine?

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@grandma72

I find some positions/ movements may cause my SOB, as well. Have you had any X-rays of your cervical spine?

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Hi! Yes I have had MRIs of everything except my heart. I had 3 MRIs for my spine. Some spurs on my neck and wear and tear on my lowere back as I’m 52. The abdomen MRI showed some of the heart but only a little. I had some white areas on brain because I had a tunnel vision migraine a couple months before. Where my visitor went to a point but o had no pain. Readings said it was vascular in nature. That’s it.

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@cindajune

Hi! Yes I have had MRIs of everything except my heart. I had 3 MRIs for my spine. Some spurs on my neck and wear and tear on my lowere back as I’m 52. The abdomen MRI showed some of the heart but only a little. I had some white areas on brain because I had a tunnel vision migraine a couple months before. Where my visitor went to a point but o had no pain. Readings said it was vascular in nature. That’s it.

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Oh I also had a huge cyst on my right ovary, softball size. Didn’t even know I had it. Popped on it’s own because it was gone next visit. They said they can’t find my right ovary either. 🤣 Don’t know if that has to do with anything but just listing everything in case it helps someone or myself.

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@cindajune

I developed the same issue after going on a walk on a windy day. Sat down on couch and started loud barking coughs. Dozens of MRIs and gastro visits and blood tests. One blood test came back with lupus marker. RA said it was not that. My cough went away and now I have sorta like a guffaw cough, loud seal bark only once and random once a week maybe. I have terrible achy finger joints, worse in morning. The gastro saw a patch of something in my esophagus and tested me for Barrett’s esophagus. Negative on that. I did have a dentist visit that they accidentally sprayed a bleach combo cleaning solution in my mouth. I was first patient of the day. Maybe from that. I went to see an OMT at the recommendation of my primary. She was trying to move a rib in the front and get a “knot” out of my left shoulder blade. That was a year ago and I have severe pain in my shoulder blade and chest now. The shoulder blade pain keeps me up at night sometimes. Tremendous aching through to my chest. My sob is just like everyone here says. Can’t get it to release and yawning absolutely releases it. Just posting what is going on with me in hopes to piece this together for all of us. FYI i had two Drs. And a specialist write Mayo AZ to get me in. I called weekly for a year said they never received anything. My Drs. faxed them dozens of times. My primary was at a loss. Now we moved to another state and are working on getting insurance.

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@cindajune, was the cough associated with any typical sickness like the common cold or Covid 19? Is the chest aching constant or does it come and go?

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@gabrielm

@cindajune, was the cough associated with any typical sickness like the common cold or Covid 19? Is the chest aching constant or does it come and go?

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Hi Gabriel. Fond of the name, my boys name. The cough came after a windy day walk. I had what I believe is Covid in January of 2020. I always get a bronchitis cough yearly. My siblings as well. But I’m only I’ll that once a year. My chest pain is left where the ribs meet upper. It’s a pin point I’ve showed all Drs. Exactly this point. Gastro suggested it might be Cutaneous nerve entrapment. It’s always same spot and after seeing OMT and her pushing by shoulder blade and the front area so hard my shoulder blade permanently aches. The cutaneous nerve area in front didn’t hurt constantly or when I cough or make the goose honking noise. Rarely cough really. More a noise. My original thoughts on this was I coughed a nerve out of place or damaged a nerve. I also thought I inhaled a tree seedling fuzzy on walk. My neurologist asked if I had an MRI for the nerves and veins taken. I said I had dozens of MRIs and dot. All MRIs check for this? We moved and have no insurance yet so the poor new Drs I get will have to answer that for me. I’m a mess.

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@cindajune

Hi Gabriel. Fond of the name, my boys name. The cough came after a windy day walk. I had what I believe is Covid in January of 2020. I always get a bronchitis cough yearly. My siblings as well. But I’m only I’ll that once a year. My chest pain is left where the ribs meet upper. It’s a pin point I’ve showed all Drs. Exactly this point. Gastro suggested it might be Cutaneous nerve entrapment. It’s always same spot and after seeing OMT and her pushing by shoulder blade and the front area so hard my shoulder blade permanently aches. The cutaneous nerve area in front didn’t hurt constantly or when I cough or make the goose honking noise. Rarely cough really. More a noise. My original thoughts on this was I coughed a nerve out of place or damaged a nerve. I also thought I inhaled a tree seedling fuzzy on walk. My neurologist asked if I had an MRI for the nerves and veins taken. I said I had dozens of MRIs and dot. All MRIs check for this? We moved and have no insurance yet so the poor new Drs I get will have to answer that for me. I’m a mess.

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@cindajune, I'm sorry that you have so much going on. It must be overwhelming. It sounds like there's a lot of uncertainty with many of the symptoms as far as not know what they could be or the causes. Do you have any kind of condition, disease, or syndromes that you know for sure that you can start to tackle? I find tackling one issue will help with other issues and symptoms.

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