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.

I have found my people!!! TL;DR - I have a semi-solution and still working on it.

I have this issue too for many years - it started (or I started noticing it) after I had bronchitis in 2015 or so. Afterwards I had air hunger and breathing dysfunction like this and it became permanent. At first I was treated for asthma but the inhaler did not work for these symptoms and so I moved on from that. Then I explored anxiety but - same as you - nothing seemed to correlate with when I would suffer the symptoms. Sometimes I would notice I was breathing normally and as soon as I would notice it, the noticing would make it dysfunctional. It was maddening. I saw an ENT and was treated for GERD, but it did not improve even when the scope showed the reflux had improved (our trajectory is so similar!)
Then I was unemployed for 6 months during lockdown and did a lot of reading. I read The Oxygen Advantage and the wheels started turning… so it seemed I was an overbreather and my body had developed a low CO2 tolerance?
I was just beginning down the path.
Then I read Breath by James Nestor.
This put together a lot of puzzle pieces for me — it discussed the issues of mouth breathing vs nasal breathing, and of a narrowed airway in response to retractive orthodontics, which I had as a child (pulling my 4 bicuspids and making my mouth smaller to solve crowded teeth). So, at this point my issue was not solved but I had a fresh Avenue of inquiry. I should mention that I also had chronic tension of the neck, jaw, and shoulders, clenched my teeth at night, and suffered frequent headaches. I learned that these symptoms, as a grouping, can often be the result of the tongue not resting properly in the mouth, in my case from my arch being too small from the orthodontics, and, before that, from a tongue tie that I was soon to be diagnosed with! (Stay with me cause I will get back to the breathing)… these can also lead to a narrow airway. So now I had an Avenue of inquiry that touched on many chronic issues I had had for years and always suspected may be related.

I began seeing Dr Zaghi at The Breathe Institute in LA, and Dr Hang at Face Focused Orthodontics. Both wonderful doctors I am lucky to have in my home city.

I will try to shorten this story by a lot!
I am now mid-way through a 2-year course of orthodontic treatment to completely reverse the earlier orthodontics, broaden the arch, replace the missing teeth with implants, AND have just 2 weeks ago had my tongue tie released.

HERE IS THE RELEVANT PART for y’all:

I did not know what to expect with the tongue tie release with respect to my breathing but I was hoping it would at least release a lot of the tension I had. Then I planned to work on the breathing with my Myofunctional therapist (look it up!) afterward.

The tongue tie release surgery was a WILD experience. With each snip of the scissors my body was shaking uncontrollably but the doctor assured me this was my body releasing all the tension. By the end of the brief procedure, I suddenly realized even my calves and ankles were looser than ever before.
The next day, my entire body felt different — all the tension in my neck and shoulders, down to my feet, was gone. I woke up feeling more refreshed than ever before and did not grind my teeth that night.
The following day …
I realized… wait…. My breathing is totally relaxed, light as a feather, NORMAL. I felt that ability to create full negative pressure on the exhale to fuel a full inhale. It felt amazing.
WOW!
Here is my theory - because I felt this in my whole body - it seemed like my sympathetic nervous system had been elevated my whole life… I always had a hard time relaxing. It felt like someone had finally found the “OFF” switch. The parasympathetic system was able to take over, including the relaxed breathing.

HOWEVER, in the past two weeks since the surgery, my symptoms have been sloooowly creeping back in…. I am clenching again when I sleep… and the air hunger issue has 50% returned. Like I have some ability to relax it and breathe lightly, and halfway it is not in my control.

So: I am still working on these things with my Myofunctional therapist, and trying to figure it out for myself. But in my personal experience I now understand this issue as being a dysfunction of my nervous system…I saw that it could disappear overnight by finding the “off” switch. (As opposed to it being a CO2 intolerance that I needed to gradually re-train).

Feel free to reach out! I understand the struggle.

Would also love to know an update on anyone… Gabriel, Buteyko is definitely a big part of Myofunctional therapy… probably something I will need to dig into in my coming sessions.

Right now I am working on breathing while speaking, as this is a related challenge for me.

REPLY
@cccritter

I have found my people!!! TL;DR - I have a semi-solution and still working on it.

I have this issue too for many years - it started (or I started noticing it) after I had bronchitis in 2015 or so. Afterwards I had air hunger and breathing dysfunction like this and it became permanent. At first I was treated for asthma but the inhaler did not work for these symptoms and so I moved on from that. Then I explored anxiety but - same as you - nothing seemed to correlate with when I would suffer the symptoms. Sometimes I would notice I was breathing normally and as soon as I would notice it, the noticing would make it dysfunctional. It was maddening. I saw an ENT and was treated for GERD, but it did not improve even when the scope showed the reflux had improved (our trajectory is so similar!)
Then I was unemployed for 6 months during lockdown and did a lot of reading. I read The Oxygen Advantage and the wheels started turning… so it seemed I was an overbreather and my body had developed a low CO2 tolerance?
I was just beginning down the path.
Then I read Breath by James Nestor.
This put together a lot of puzzle pieces for me — it discussed the issues of mouth breathing vs nasal breathing, and of a narrowed airway in response to retractive orthodontics, which I had as a child (pulling my 4 bicuspids and making my mouth smaller to solve crowded teeth). So, at this point my issue was not solved but I had a fresh Avenue of inquiry. I should mention that I also had chronic tension of the neck, jaw, and shoulders, clenched my teeth at night, and suffered frequent headaches. I learned that these symptoms, as a grouping, can often be the result of the tongue not resting properly in the mouth, in my case from my arch being too small from the orthodontics, and, before that, from a tongue tie that I was soon to be diagnosed with! (Stay with me cause I will get back to the breathing)… these can also lead to a narrow airway. So now I had an Avenue of inquiry that touched on many chronic issues I had had for years and always suspected may be related.

I began seeing Dr Zaghi at The Breathe Institute in LA, and Dr Hang at Face Focused Orthodontics. Both wonderful doctors I am lucky to have in my home city.

I will try to shorten this story by a lot!
I am now mid-way through a 2-year course of orthodontic treatment to completely reverse the earlier orthodontics, broaden the arch, replace the missing teeth with implants, AND have just 2 weeks ago had my tongue tie released.

HERE IS THE RELEVANT PART for y’all:

I did not know what to expect with the tongue tie release with respect to my breathing but I was hoping it would at least release a lot of the tension I had. Then I planned to work on the breathing with my Myofunctional therapist (look it up!) afterward.

The tongue tie release surgery was a WILD experience. With each snip of the scissors my body was shaking uncontrollably but the doctor assured me this was my body releasing all the tension. By the end of the brief procedure, I suddenly realized even my calves and ankles were looser than ever before.
The next day, my entire body felt different — all the tension in my neck and shoulders, down to my feet, was gone. I woke up feeling more refreshed than ever before and did not grind my teeth that night.
The following day …
I realized… wait…. My breathing is totally relaxed, light as a feather, NORMAL. I felt that ability to create full negative pressure on the exhale to fuel a full inhale. It felt amazing.
WOW!
Here is my theory - because I felt this in my whole body - it seemed like my sympathetic nervous system had been elevated my whole life… I always had a hard time relaxing. It felt like someone had finally found the “OFF” switch. The parasympathetic system was able to take over, including the relaxed breathing.

HOWEVER, in the past two weeks since the surgery, my symptoms have been sloooowly creeping back in…. I am clenching again when I sleep… and the air hunger issue has 50% returned. Like I have some ability to relax it and breathe lightly, and halfway it is not in my control.

So: I am still working on these things with my Myofunctional therapist, and trying to figure it out for myself. But in my personal experience I now understand this issue as being a dysfunction of my nervous system…I saw that it could disappear overnight by finding the “off” switch. (As opposed to it being a CO2 intolerance that I needed to gradually re-train).

Feel free to reach out! I understand the struggle.

Would also love to know an update on anyone… Gabriel, Buteyko is definitely a big part of Myofunctional therapy… probably something I will need to dig into in my coming sessions.

Right now I am working on breathing while speaking, as this is a related challenge for me.

Jump to this post

This problem seems to be more related to the stomach and larynx. I suggest you use pantoprazole for a while and see a laryngeal specialist. Because the best doctors in the world are there and tell us the result

REPLY
@cccritter

I have found my people!!! TL;DR - I have a semi-solution and still working on it.

I have this issue too for many years - it started (or I started noticing it) after I had bronchitis in 2015 or so. Afterwards I had air hunger and breathing dysfunction like this and it became permanent. At first I was treated for asthma but the inhaler did not work for these symptoms and so I moved on from that. Then I explored anxiety but - same as you - nothing seemed to correlate with when I would suffer the symptoms. Sometimes I would notice I was breathing normally and as soon as I would notice it, the noticing would make it dysfunctional. It was maddening. I saw an ENT and was treated for GERD, but it did not improve even when the scope showed the reflux had improved (our trajectory is so similar!)
Then I was unemployed for 6 months during lockdown and did a lot of reading. I read The Oxygen Advantage and the wheels started turning… so it seemed I was an overbreather and my body had developed a low CO2 tolerance?
I was just beginning down the path.
Then I read Breath by James Nestor.
This put together a lot of puzzle pieces for me — it discussed the issues of mouth breathing vs nasal breathing, and of a narrowed airway in response to retractive orthodontics, which I had as a child (pulling my 4 bicuspids and making my mouth smaller to solve crowded teeth). So, at this point my issue was not solved but I had a fresh Avenue of inquiry. I should mention that I also had chronic tension of the neck, jaw, and shoulders, clenched my teeth at night, and suffered frequent headaches. I learned that these symptoms, as a grouping, can often be the result of the tongue not resting properly in the mouth, in my case from my arch being too small from the orthodontics, and, before that, from a tongue tie that I was soon to be diagnosed with! (Stay with me cause I will get back to the breathing)… these can also lead to a narrow airway. So now I had an Avenue of inquiry that touched on many chronic issues I had had for years and always suspected may be related.

I began seeing Dr Zaghi at The Breathe Institute in LA, and Dr Hang at Face Focused Orthodontics. Both wonderful doctors I am lucky to have in my home city.

I will try to shorten this story by a lot!
I am now mid-way through a 2-year course of orthodontic treatment to completely reverse the earlier orthodontics, broaden the arch, replace the missing teeth with implants, AND have just 2 weeks ago had my tongue tie released.

HERE IS THE RELEVANT PART for y’all:

I did not know what to expect with the tongue tie release with respect to my breathing but I was hoping it would at least release a lot of the tension I had. Then I planned to work on the breathing with my Myofunctional therapist (look it up!) afterward.

The tongue tie release surgery was a WILD experience. With each snip of the scissors my body was shaking uncontrollably but the doctor assured me this was my body releasing all the tension. By the end of the brief procedure, I suddenly realized even my calves and ankles were looser than ever before.
The next day, my entire body felt different — all the tension in my neck and shoulders, down to my feet, was gone. I woke up feeling more refreshed than ever before and did not grind my teeth that night.
The following day …
I realized… wait…. My breathing is totally relaxed, light as a feather, NORMAL. I felt that ability to create full negative pressure on the exhale to fuel a full inhale. It felt amazing.
WOW!
Here is my theory - because I felt this in my whole body - it seemed like my sympathetic nervous system had been elevated my whole life… I always had a hard time relaxing. It felt like someone had finally found the “OFF” switch. The parasympathetic system was able to take over, including the relaxed breathing.

HOWEVER, in the past two weeks since the surgery, my symptoms have been sloooowly creeping back in…. I am clenching again when I sleep… and the air hunger issue has 50% returned. Like I have some ability to relax it and breathe lightly, and halfway it is not in my control.

So: I am still working on these things with my Myofunctional therapist, and trying to figure it out for myself. But in my personal experience I now understand this issue as being a dysfunction of my nervous system…I saw that it could disappear overnight by finding the “off” switch. (As opposed to it being a CO2 intolerance that I needed to gradually re-train).

Feel free to reach out! I understand the struggle.

Would also love to know an update on anyone… Gabriel, Buteyko is definitely a big part of Myofunctional therapy… probably something I will need to dig into in my coming sessions.

Right now I am working on breathing while speaking, as this is a related challenge for me.

Jump to this post

Hi @cccritter, thank you for sharing your journey with this struggle. Very interesting solutions that others would benefit from looking into. I've never heard of a Myofunctional therapist, so I'm glad you brought that up as something that has helped you.

Yes, Buteyko method has definitely helped me and I continue to utilize it. There's varying degrees of it and many exercises to choose from. While it hasn't completely made the issue go away, it helps with keeping symptoms at bay and reassuring me that I'm in control of my breathing.

I remember looking into the sympathetic/parasympathetic nervous system some time back and had a similar theory; that maybe there is something causing the sympathetic nervous system to take over and go into "overdrive" for whatever reason. Breathing exercises I think help to get the body to go back into "normal" mode. How it's all connected is complicated, but having a variety of tools in the toolbox (various therapies, breathing exercises, mental exercises, etc.) allows us to choose a helpful solution.

How long have you been seeing the therapist?

REPLY

I just stumbled across your post and created an account just so I could comment. In 2018, I started experiencing severe vertigo, and that in conjunction with some heart issues for my daughter, caused me to develop severely debilitating anxiety. Thankfully, I’m much better now than I was then, but I still suffer from anxiety and one of my big problems is shortness of breath and hunger for air. I noticed you said you don’t really suffer from anxiety, but I would imagine you are anxious about your sob. Even when you had periods where it seemed better, if you’re like me, you were probably just on edge waiting for it to return. I too have had many tests and am currently taking monthly b12 injections as well as a daily iron supplement. Everything else was relatively normal and I have even been seeing a pulmonologist. I think I will mention the sob to my pcp again at my next appointment though, because I feel like it’s affecting my daily life by keeping me so anxious, which only exacerbates the sob.

REPLY

I too had shortness of breath for many years, it got worse each year but I did not find the cause until I had a bout of acute respiratory failure. I made it to emergency and passed out. I was also not myself due (i believe) to low brain oxygen. The hospital put me on oxygen (and a face mask) and I got the best sleep in many years that first night. A sleep study showed severe sleep apnea even though I thought my poor sleep was due to myprostate and bladder. It wasn't when I started to get sleep (with oxygen in the ventilator) I started to get better. I still have some shortness of breath but it is getting better each month.

REPLY
@jlewis0081

I just stumbled across your post and created an account just so I could comment. In 2018, I started experiencing severe vertigo, and that in conjunction with some heart issues for my daughter, caused me to develop severely debilitating anxiety. Thankfully, I’m much better now than I was then, but I still suffer from anxiety and one of my big problems is shortness of breath and hunger for air. I noticed you said you don’t really suffer from anxiety, but I would imagine you are anxious about your sob. Even when you had periods where it seemed better, if you’re like me, you were probably just on edge waiting for it to return. I too have had many tests and am currently taking monthly b12 injections as well as a daily iron supplement. Everything else was relatively normal and I have even been seeing a pulmonologist. I think I will mention the sob to my pcp again at my next appointment though, because I feel like it’s affecting my daily life by keeping me so anxious, which only exacerbates the sob.

Jump to this post

@jlewis0081, thank you for taking the time to share your experience. I'm glad that your anxiety is not as severe! What did you do to help it since when it was worse?

At the time I posted, I didn't have anxiety that I knew of, but as you said, I think just having bad bouts of the air hunger made me have some anxiety about it. But now that the air hunger is more stable and not as severe, the anxiety is not really there. I've learned to expect it when it comes but to not worry about it since I know it will get better again.

Did you get tested for any GI issues, such as GERD? I know that's been a common symptom for a lot of people with this issue. Some have found help with dealing with the GERD.

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@kenandshanah

I too had shortness of breath for many years, it got worse each year but I did not find the cause until I had a bout of acute respiratory failure. I made it to emergency and passed out. I was also not myself due (i believe) to low brain oxygen. The hospital put me on oxygen (and a face mask) and I got the best sleep in many years that first night. A sleep study showed severe sleep apnea even though I thought my poor sleep was due to myprostate and bladder. It wasn't when I started to get sleep (with oxygen in the ventilator) I started to get better. I still have some shortness of breath but it is getting better each month.

Jump to this post

Thank you for sharing your experience!

REPLY

Thank you, I am still short of breath in many respects but I have recovered enough that I can play a little golf. I believe my restless sleep is also caused by not having a mask that I am comfortable with. But I am working on that too.

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@kenandshanah

Thank you, I am still short of breath in many respects but I have recovered enough that I can play a little golf. I believe my restless sleep is also caused by not having a mask that I am comfortable with. But I am working on that too.

Jump to this post

@kenandshanah, I invite you to join the discussions in the Sleep Health group https://connect.mayoclinic.org/group/sleep-health/ Members may have helpful suggestions regarding CPAP and mask fit. Feel free to ask questions there.

REPLY

Hi Gabe,

I just came across your post and read it thoroughly. I haven't read the comments but I do plan to.

Here's my story: So one fateful day while at work at the time (Lowe's), I accidentally cut some pressure treated lumber. A few weeks prior, a co-worker had told me to never do that because of the "toxic chemicals" they use to treat the wood.
I did it anyway, and immediately after, I started having trouble breathing. I freaked out. I had asthma as a child and my last Asthma attack had been at least 6-7 years prior. So I ran to the pharmacy next door and got my inhaler refill. But nothing improved. After months of many ER visits, misdiagnoses and doctor visits, I concluded I may have VCD after doing research. I finally saw an ENT and SLP and they said "I likely had it". I guess it meant they couldn't trigger it while they did the Laryngoscopy.

Eventually I got better but the breathing issue was always there, running the background. Sometimes it would get worse. Bad air, running, getting sick would all trigger it. but it had been manageable. I could still hike, run short distances, workout, etc..

However, about two months ago, I was shopping at Lowe's and I walked by the Lumber area, just to reminisce where it all started. And guess what? This issue is back and as worse as it was in 2013. The poor air quality here in Salt Lake City hasn't helped either.
Mine isn't life threatening. I have monitored my O2 for years and my O2 never goes below 92. So It obviously won't kill me. But it is uncomfortable and I am really worried what happens one day when I can no longer get the "breath in" and I pass out.

I am questioning if I have some other psychological issue? I get the throat tightness and difficulty inhaling but no stridor. I have to yawn or sigh to "force the breath in".

I want to add this, I don't know if VCD is considered a type of Dystonia but I also have Dystonia. I find it hard to believe I would have two very rare neurologic disorders. My Dystonia is "multifocal" so it mainly occurs in my eyelids, facial muscles and sometimes abdomen. These are involuntary muscle spasms. Those spasms aren't constant but can be triggered as well.

I recently just tried taking muscle relaxers and it's only been one day, so hard to say if it makes a difference.

Currently I have found no breathing exercises that have done anything to help. I can relate to your story and I really question what is going on. I can't imagine living the rest of my life like this.

Tahir

REPLY
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