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.

Hi Gabe. I was lucky to find your post late last night after googling for the umpteenth time symtpoms I've had on and off for years. I will keep this brief, but I have all of the symptoms you have, and have had them for about 12 years. They come and go, but after years of searching, I believe it is liver related, like you mentioned at the end of your op.

I have one genetic variant for Alpha 1 Anti-trypsin deficiency. I had this tested through 23andme. You should definitely check for this. I find that I can eliminate my symptoms if I liver cleanse. First I'll fast for about 24 hours. Then when I resume eating, it's mostly fruits, vegetables, and non-processed foods. I don't over eat when doing this, and I also stick to water only. Then I'll feel better. But I haven't been doing this as of late, and of course my symptoms have been present.

I should mention I'm only 28 years old. I've had an ultrasound done a few years ago that showed my bile ducts in my liver were plugged. I'm almost positive this is related to the genetic condition I mentioned above, as this condition can cause your liver to back up as you lack a gene that codes for something to remove a protein (?). I'm not a medical professional as you can probably tell but that is my layman understanding of it.

I would recommend you get a 23andme test, or some type of genetic test, to check for this. Best of luck.

EDIT: I didn't mention everything else as I wanted to be brief, but I should probably also mention that I have GERD as well, and have had it for about 10 years. I also have had chronic nostril inflammation for about 15 years. Again, I think this is liver related because everything is backing up as the liver is plugged. Please get tested for Alpha 1 Anti-trypsin deficiency if you haven't already.

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@stm1

Hello,
I will gladly answer any questions!
When it comes to the symptoms I described, I am not diagnosed with anything at all. I am just trying some over-the-counter GERD medicines myself, but I haven’t seen gastroenterologist. I have changed my diet as well, I stopped eating anything that could trigger GERD. I don’t eat any processed foods, sugar, anything roasted. I eat pretty much most basic foods now, like grains, boiled meats, fruits and vegetables. I feel like GERD is gone now, but that didn’t improve any other symptoms at all.
The episode in March happened on a totally usual day. I didn’t experience any particular stress or didn’t do any training before it, didn’t start new medications either. I remember having same episode (extreme headache and trouble focusing my eyes) many years ago, around 2014-2015, and that was triggered by lifting a heavy weight.
The most bothersome symptoms are constant difficulty breathing and shortness of breath for sure. I cannot even talk in long sentences anymore without needing to catch a breath.

Jump to this post

Regarding GERD or any reflux, it is better not to drink too much of any liquid (even water) with your meal. When you have a full stomach adding liquids makes the liquid rise up the esophagus and causes GERD etc. Avoid spicy foods and eat small meals many times.
As for shortness of breath, chest pain, etc., talk to your doctor about pure Oxygen therapy. Also, the breathing issue may be due to some problem with the lungs - X-Ray, CT imaging of the lungs and pulmonary function test will identify the problem and then suitable medication may be prescribed. Good luck.

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@vrajan41

Regarding GERD or any reflux, it is better not to drink too much of any liquid (even water) with your meal. When you have a full stomach adding liquids makes the liquid rise up the esophagus and causes GERD etc. Avoid spicy foods and eat small meals many times.
As for shortness of breath, chest pain, etc., talk to your doctor about pure Oxygen therapy. Also, the breathing issue may be due to some problem with the lungs - X-Ray, CT imaging of the lungs and pulmonary function test will identify the problem and then suitable medication may be prescribed. Good luck.

Jump to this post

I meant to add more, but cannot edit it now. Hence, I am replying again below:

Regarding GERD or any reflux, it is better not to drink too much of any liquid (even water) with your meal. When you have a full stomach adding liquids makes the liquid rise up the esophagus and causes GERD etc. Avoid spicy foods and eat small meals many times. Sip a small amount of liquid at a time after the meal. This should help.
As for shortness of breath, chest pain, etc., talk to your doctor about pure Oxygen therapy. Also, the breathing issue may be due to some problem with the lungs - X-Ray, CT imaging of the lungs and pulmonary function test will identify the problem and then suitable medication may be prescribed. Do you have other medical problems and are taking medications? These can cause pulmonary, cardiac, and/or other medical problems.
Good luck.
ps: The above is based on my current experience.

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Thank you for sharing your story. I too have this weird air hunger with desiring deep breaths only for it to repeat after a few breaths. But not as severe as you. Knowing other people experience this is comforting to know I'm not alone. Thanks again...

REPLY
@stm1

Hello,
I will gladly answer any questions!
When it comes to the symptoms I described, I am not diagnosed with anything at all. I am just trying some over-the-counter GERD medicines myself, but I haven’t seen gastroenterologist. I have changed my diet as well, I stopped eating anything that could trigger GERD. I don’t eat any processed foods, sugar, anything roasted. I eat pretty much most basic foods now, like grains, boiled meats, fruits and vegetables. I feel like GERD is gone now, but that didn’t improve any other symptoms at all.
The episode in March happened on a totally usual day. I didn’t experience any particular stress or didn’t do any training before it, didn’t start new medications either. I remember having same episode (extreme headache and trouble focusing my eyes) many years ago, around 2014-2015, and that was triggered by lifting a heavy weight.
The most bothersome symptoms are constant difficulty breathing and shortness of breath for sure. I cannot even talk in long sentences anymore without needing to catch a breath.

Jump to this post

Have you had any bad headaches since then? I'm wondering if there is some sort of inflammation that is triggering many symptoms. Not sure what would cause it, but I've explored inflammation for myself. It's something I don't have a big understanding of, but interesting to learn and could connect a lot of the symptoms.

How's your exercise- do you push pretty hard when weightlifting? Do you do any running/cardio?

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@antevy

Thank you for sharing your story. I too have this weird air hunger with desiring deep breaths only for it to repeat after a few breaths. But not as severe as you. Knowing other people experience this is comforting to know I'm not alone. Thanks again...

Jump to this post

@antevy, I'm glad you found others here who are going through this as well and that you're not alone. I know there's a lot of content on this thread now, but if you have time it's worth it to skim through as much as possible to see what has helped people. Or if you have any questions, I know there are many people who are willing to help.

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@wings

Hi Gabe. I was lucky to find your post late last night after googling for the umpteenth time symtpoms I've had on and off for years. I will keep this brief, but I have all of the symptoms you have, and have had them for about 12 years. They come and go, but after years of searching, I believe it is liver related, like you mentioned at the end of your op.

I have one genetic variant for Alpha 1 Anti-trypsin deficiency. I had this tested through 23andme. You should definitely check for this. I find that I can eliminate my symptoms if I liver cleanse. First I'll fast for about 24 hours. Then when I resume eating, it's mostly fruits, vegetables, and non-processed foods. I don't over eat when doing this, and I also stick to water only. Then I'll feel better. But I haven't been doing this as of late, and of course my symptoms have been present.

I should mention I'm only 28 years old. I've had an ultrasound done a few years ago that showed my bile ducts in my liver were plugged. I'm almost positive this is related to the genetic condition I mentioned above, as this condition can cause your liver to back up as you lack a gene that codes for something to remove a protein (?). I'm not a medical professional as you can probably tell but that is my layman understanding of it.

I would recommend you get a 23andme test, or some type of genetic test, to check for this. Best of luck.

EDIT: I didn't mention everything else as I wanted to be brief, but I should probably also mention that I have GERD as well, and have had it for about 10 years. I also have had chronic nostril inflammation for about 15 years. Again, I think this is liver related because everything is backing up as the liver is plugged. Please get tested for Alpha 1 Anti-trypsin deficiency if you haven't already.

Jump to this post

@wings, thanks so much for sharing. Definitely valuable information to consider. I have a liver condition called Gilbert's Syndrome, which my doctor informed me is harmless and in my condition it's mild. But it's interesting nonetheless because maybe there's a a connection to what you bring up. I will have to look into that more, but I'm glad that you found an answer and a solution to help manage your symptoms!

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@gabrielm

@wings, thanks so much for sharing. Definitely valuable information to consider. I have a liver condition called Gilbert's Syndrome, which my doctor informed me is harmless and in my condition it's mild. But it's interesting nonetheless because maybe there's a a connection to what you bring up. I will have to look into that more, but I'm glad that you found an answer and a solution to help manage your symptoms!

Jump to this post

No problem. I also forgot to mention that I also have Gilbert’s syndrome. We seem to be identical, which is why I think you should get tested for Alpha-1 Antitrypsin Deficiency. All the best.

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Hi, I have had very similar problems. I am an avid cyclist and for the last ten years I have had breathing problems. I even wake up at night in a major panic attack, and have to go outside in the cooler air for a while to be able to breath properly…
I can’t yawn as deep as I used to, and when I breathe I can’t get that full feeling in my lungs.
Ihave been to a pulmonologist and a cardiologist, and they can’t find any problems or reasons that I should have these episodes of abnormal breathing.
When I ride on my bicycle, and the rest of the group accelerate, I can’t go with them as I feel as if I can’t breathe.
I saw a GP a few years back, and she said that I had emphysema, but the pulmonologist ruled that out.

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@grandma72

Please get an X-ray and possibly MRI if can of your spine. I was short of breath upon minimal exertion for 91/2 years due to a pinched nerve at C5/6. I do have this other ‘trying to get a breath’ sometimes here and there during a day and I’m wondering if it might be a pinched nerve as well since I have had extensive testing of everything for years and I’m ‘normal’;) just an observation that’s easy to check out. Good luck !

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Hello,

I have already done it, too. I got an MRI scan of my entire spine (lower back, chest segment and neck). Although there definitely were some problems, neurologist told me it wasn't that bad. I think I should get a second opinion about it.

Have you fixed your problem with a pinched nerve? If yes, how did you do it?

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