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.

Your symptoms / tests/ trials are so similar to mine.. I thought it was from cholesterol meds which a pulmonologist suggested. I quit taking them and started red rice yeast. I still have it exactly as you do. Just over 5 years, sporadic no pattern to link it to.

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@darkhorseranch

Your symptoms / tests/ trials are so similar to mine.. I thought it was from cholesterol meds which a pulmonologist suggested. I quit taking them and started red rice yeast. I still have it exactly as you do. Just over 5 years, sporadic no pattern to link it to.

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@darkhorseranch, have you done anything to manage the symptoms over the 5 years?

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@gabrielm

@darkhorseranch, have you done anything to manage the symptoms over the 5 years?

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I’m trying the breathing exercises again . Going to stay consistent and see if it keeps it at bay, nothing has worked

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Hello,

Thank you all for sharing your stories. I just discovered this group and have been reading through the comments all day. Not my most productive day at work!

Apologies if this has been discussed already, but my SOB seems to only affect the right side of my lungs, meaning that its the ride side that either feels restricted or feels relief when I am able to breathe deeply. Is this in line with how everyone else experiences SOB? Sorry if its a silly question but I haven't seen anyone specify whether it affects one or both sides of their chest.

Thank you in advance.

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@glenjr

Hello,

Thank you all for sharing your stories. I just discovered this group and have been reading through the comments all day. Not my most productive day at work!

Apologies if this has been discussed already, but my SOB seems to only affect the right side of my lungs, meaning that its the ride side that either feels restricted or feels relief when I am able to breathe deeply. Is this in line with how everyone else experiences SOB? Sorry if its a silly question but I haven't seen anyone specify whether it affects one or both sides of their chest.

Thank you in advance.

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Hi @glenjr, that's interesting that it feels like it's only on one side. I've never heard of that before. I would've thought that even if one side is restricted the the other or both lungs would compensate for that. Does it feel like a sharp sudden stitch when taking in a breath or is it more a softer restriction?

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Hi everyone,

I have not been here for over year, I thought I would say hello.
For the most part, I have been feeling better having longer periods ( weeks) with minimal symptoms. Having said that, I still have the odd days when my symptoms are stronger/more active: air hunger and the inability to take a deep breath or yawn, at least it takes a few attempts until my lungs expand so that I can complete deep breaths or yawns. Over the last two years, I have undergone a number of exams: chest x-ray, lung function test (3 different kinds), lungs CT scan (lungs), and ENT; all came back normal.

A question for you:
Can you guys imagine a scenario that despite all those tests, which came back normal, my lungs/airways are still damaged? What I mean is that in my dark moments, I tend to have this idea (Paranoia?) that my lungs do have some damage/issues, it is just that the issues are not major enough for the tests to show them.

I also tend to blame myself for my SOB. When my symptoms started 2 years ago, they showed up right after I used a vape pen. I only had 3 puffs on that night (when my SOB started) and prior to that I vaped on 3-4 occasions (about 3 puffs per occasion). So once again, I had just been introduced to vaping a few weeks prior to my symptoms started ( a friend thought it could help my anxiety). I then got so terrified that I have never vaped again. So once again, I am not sure if those 4-5 occasions of vaping could be responsible for my SOB or it was just a coincidence, but when I feel down, I tend to think that I must have damaged my lungs even though the tests do not support that theory.
Thank you

REPLY
@gabe79

Hi everyone,

I have not been here for over year, I thought I would say hello.
For the most part, I have been feeling better having longer periods ( weeks) with minimal symptoms. Having said that, I still have the odd days when my symptoms are stronger/more active: air hunger and the inability to take a deep breath or yawn, at least it takes a few attempts until my lungs expand so that I can complete deep breaths or yawns. Over the last two years, I have undergone a number of exams: chest x-ray, lung function test (3 different kinds), lungs CT scan (lungs), and ENT; all came back normal.

A question for you:
Can you guys imagine a scenario that despite all those tests, which came back normal, my lungs/airways are still damaged? What I mean is that in my dark moments, I tend to have this idea (Paranoia?) that my lungs do have some damage/issues, it is just that the issues are not major enough for the tests to show them.

I also tend to blame myself for my SOB. When my symptoms started 2 years ago, they showed up right after I used a vape pen. I only had 3 puffs on that night (when my SOB started) and prior to that I vaped on 3-4 occasions (about 3 puffs per occasion). So once again, I had just been introduced to vaping a few weeks prior to my symptoms started ( a friend thought it could help my anxiety). I then got so terrified that I have never vaped again. So once again, I am not sure if those 4-5 occasions of vaping could be responsible for my SOB or it was just a coincidence, but when I feel down, I tend to think that I must have damaged my lungs even though the tests do not support that theory.
Thank you

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@gabe79, thanks for coming back and updating! I’m glad you’re symptoms are less. Your body is doing its best to adjust to normal as much as possible like mine.

Obviously I can’t know for sure, but it would seem strange to me if the little vaping you’ve done would cause long term damage. I don’t know much about vaping so I suppose it’s possible but seems you’ve only done it in very few occasions. I would think damage could occur with heavy vaping daily much like smoking.

Have you gotten any sleep studies done? That could rule out things like sleep apnea or changes in breathing in general while sleeping

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@gabrielm

@gabe79, thanks for coming back and updating! I’m glad you’re symptoms are less. Your body is doing its best to adjust to normal as much as possible like mine.

Obviously I can’t know for sure, but it would seem strange to me if the little vaping you’ve done would cause long term damage. I don’t know much about vaping so I suppose it’s possible but seems you’ve only done it in very few occasions. I would think damage could occur with heavy vaping daily much like smoking.

Have you gotten any sleep studies done? That could rule out things like sleep apnea or changes in breathing in general while sleeping

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Thank you Gabe for your reply. I have not done sleep studies yet. My pulmonologist was planning to order one for me, but it has not happened yet for some reason.
My family doctor has issued a prescription for biofeedback which I am considering doing. Does anyone have experience with biofeedback?

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@gabrielm

Hi @glenjr, that's interesting that it feels like it's only on one side. I've never heard of that before. I would've thought that even if one side is restricted the the other or both lungs would compensate for that. Does it feel like a sharp sudden stitch when taking in a breath or is it more a softer restriction?

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@gabrielm Thanks for replying! I'd say more of a softer restriction, almost like something is preventing it from expanding or something is blocking the air from getting in. I've been to the ER where everything (blood tests, oxygen levels, x-rays) came out normal. My doctor prescribed albuterol which didn't help. I did test for H Pylori recently and it came out positive. Just started antibiotic treatment for that so we'll see if that helps.

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@gabe79

Thank you Gabe for your reply. I have not done sleep studies yet. My pulmonologist was planning to order one for me, but it has not happened yet for some reason.
My family doctor has issued a prescription for biofeedback which I am considering doing. Does anyone have experience with biofeedback?

Jump to this post

Interesting! I've not heard much about biofeedback but a quick Google search definitely makes me want to look into it more. I'd be very interested to see how that goes if you do end up deciding to do it.

Have you done or considered breathing exercises in the meantime as you're searching for answers?

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