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.

@krisv

Just wanted to share my experience with a similar problem. I recently ended up with a pretty bad case of breathing issues that sound a lot like what many are describing. Inability to take a full, satisfying breath which leads to obsessive need to get a full breath - causing constant (every minute, all day long) sighing and yawning. I would be pace around the room in the evening in complete desperation to take these breaths and it was a very debilitating experience. I noticed that it seemed to happen shortly after a particularly nasty business meeting. Never woke up at night and also seems to go away when in a sleepy state (laying in bed awake in the early morning or late night). As soon as I was fully conscious - it started and lasted all day. I would wake up and as soon as I remember about the breathing issue, I would attempt to keep breathing normal and calm as I would be breathing naturally - and this would work until my mind would take over and start to go into the vicious cycle of trying to "take that deep breath". Would not get worse or better with activity. This went on for several weeks. Nothing could distract me from it or take my attention away.

From researching online and from the patterns, I was pretty sure that there was no issue related to lungs or heart. Based on when it seemed to have started, I was pretty sure it was stress related. Decided to avoid going to the doctor as I felt the tests attempting to find a likely non existing issue would just add to the problem and likely help develop a deeper habit that would be even harder to break.

What helped me: I started to work on assuring myself that the problem is phycological and I would not actually suffocate. I would try to "extend" those moments when just waking up (when the problem was not noticeable) by continuing slow and controlled breathing as I was laying awake in bed and use that as "proof" that there is no issue. Problem would still persist as soon as I would get up and stop the breathing 'exercises' but it was important to assure myself of the nature of the problem. Attempted to take some Bendadryl to increase sleepiness in the evening and relax. If it did make me sleepy (which in most cases it did not) - it helped. Little by little, the problem would start to get better. Not much and not for long, but it would give enough reassurance. Used those moments to further "teach myself" that this is just a cycle that needs to be broken. I very much believe that "some reassurance" helped a little, which would improve the issue briefly or a little and then I would pay very close attention to these patterns and use those positive moments to further reassure myself and it would build up and build up and improve. Negative thoughts on the other hand (feeling of desperation often times) would make the issue a lot worse. Ended up going to a wedding and realized that the issue did not come up at all as long as I did not remember about it at the wedding. Still came up a bit in the eve but I was now 100% sure and this reassurance helped remove the problem completely within the next few days. The key I believe was that I was already in a "positive and assured state" that the problem is resolvable by the time of the wedding. I believed it 100% due to the things described above. Until that day or so, nothing could have distracted me from the breathing issues.

I wanted to share this in case anyone is experiencing something similar. Obviously causes of the same issues can be varied so please do not skip out on medical attention if you feel you need it.

Jump to this post

Interestingly enough also, I spoke about this problem to a couple of people and two of them mentioned that they started to experience the same thing several days later. As if its something that creeps into your mind and causes a problem.

I suspect also that the initial trigger may have been stress itself as I mentioned OR just simply really fast and over-stimulated speaking at the business meeting that ended up in a conflict. Then perhaps I needed to catch a breath but continued to speak in such a way and it caused something that I later noticed and once I noticed it - the pattern began. I imagine that the same thing can happen with exercise?

Its difficult to describe it, it is so strange.

REPLY

I found this thread while searching for an answer to my own breathing problems...has anyone found a conclusive solution?

I had an endoscopy done last month, which found a hiatal hernia.. something that has been a common trait among people suffering from SOB it seems.

I was also diagnosed with anxiety by multiple docs, and prescribed Sertraline to deal with it, in the hopes my breathing issues would subside. However, nearly 2 months on anti-anxiety meds, I definitely still have breathing issues. Which leads me to believe the anxiety was caused BY the breathing problems, rather than vice-versa.

I just want to find a solution, and am looking for answers..

REPLY
@eric27

I found this thread while searching for an answer to my own breathing problems...has anyone found a conclusive solution?

I had an endoscopy done last month, which found a hiatal hernia.. something that has been a common trait among people suffering from SOB it seems.

I was also diagnosed with anxiety by multiple docs, and prescribed Sertraline to deal with it, in the hopes my breathing issues would subside. However, nearly 2 months on anti-anxiety meds, I definitely still have breathing issues. Which leads me to believe the anxiety was caused BY the breathing problems, rather than vice-versa.

I just want to find a solution, and am looking for answers..

Jump to this post

Hiatus Hernia can cause acid reflux which can cause acids form the stomach to go into the lungs while you sleep. This can lead to shortness of breath and also the development of asthma.

REPLY
@eric27

I found this thread while searching for an answer to my own breathing problems...has anyone found a conclusive solution?

I had an endoscopy done last month, which found a hiatal hernia.. something that has been a common trait among people suffering from SOB it seems.

I was also diagnosed with anxiety by multiple docs, and prescribed Sertraline to deal with it, in the hopes my breathing issues would subside. However, nearly 2 months on anti-anxiety meds, I definitely still have breathing issues. Which leads me to believe the anxiety was caused BY the breathing problems, rather than vice-versa.

I just want to find a solution, and am looking for answers..

Jump to this post

@eric27 In my case the hiatal (sliding) hernia caused shortness of breath. Mine became very large and pulled my stomach into my chest. I had a Nissen Fundoplication in 2001.. it failed. A repair in 2007 that failed. I had an undo and repair (lost most of my fundus so another Nissen could not be done) in 2013 and it failed. I had a gastric bypass in 2014 and had complications and had to have another surgery in 2015 to repair the damage. So far doing okay. 🥳

They should be able to tell from test if your cause of shortness of breath is a hernia. I also have asthma and allergies that cause some shortness of breath.

REPLY
@fourof5zs

@eric27 In my case the hiatal (sliding) hernia caused shortness of breath. Mine became very large and pulled my stomach into my chest. I had a Nissen Fundoplication in 2001.. it failed. A repair in 2007 that failed. I had an undo and repair (lost most of my fundus so another Nissen could not be done) in 2013 and it failed. I had a gastric bypass in 2014 and had complications and had to have another surgery in 2015 to repair the damage. So far doing okay. 🥳

They should be able to tell from test if your cause of shortness of breath is a hernia. I also have asthma and allergies that cause some shortness of breath.

Jump to this post

@fourof5zs Thanks for the post and letting us know your cause. I have always suspected my hiatal hernia to be the direct cause of my SOB, but have never had that medically confirmed. Back in 2012 it was a "slight" hiatal hernia, so doctors couldn't conclude that it caused it, but I still have a sneaking suspicious it has something to do with it.

REPLY

I recently discovered this group while trying to finds a reason /cure for my breathing problems. I have some of the same symptoms described by people posting here. I have been suffering from this condition for about 14 years now. I become short of breath while exercising. I cannot ride a bicycle or enjoy hiking because of my inability to breathe. I cannot even leisurely walk in the woods without having to stop and catch my breath. I become short of breath using the stairs. I can't do anything outside once the sun begins to set, and forget doing something outside after dark. I have certain days where I have the feeling that I have to keep taking a deep breath, which sometimes I can't complete. At the same time I have to yawn constantly to get a deep breath. Half the time I can't complete the yawn. This problem almost always with a change of weather. I have had chronic sinusitis for 15 years and when my sinuses begin to drain, my sinuses swell, my nasal passages swell, my teeth hurt, my eyes feel like they are popping out of my head and my entire face hurts. This is when I have this air hunger. Nothing relieves it! When the weather system passes, it gets better.

I have been to pulmonologists, allergists, asthma specialists, cardiologists, ENT's, gastroenterologists and even speech pathologists in Boston, Rochester, NY and even in Penang, Malaysia. Some have said I had asthma. Some have said I have COPD and others say they simply don't know. I have been prescribed every known inhaler and nasal spray on the market. I've tried special diets, yoga and special exercises. Nothing has helped. I have been tested for allergies and came up negative. I've had sinus surgery, which did nothing for me. I've tried acupuncture, which didn't help. I'm sick and tired of being seen by specialists and telling my story over and over only to have them prescribe the same damn inhalers or other medication that I have tried without effect. Some of these inhalers cost 3 or 4 hundred dollars each, only to offer no help.

I am at the point now where I realize modern medicine cannot do anything for me. But I keep researching, looking for answers. This is what led me to this site. I know nothing will help, but I felt the need to vent. Thanks for allowing me to rant.

REPLY

Hi, I'm now 53 years old and live in Spain (Europe), so please keep that in mind in case I don't always choose the right word along the story.

In high school I was interested in sports and particularly in track and field events. One day, after doing running series I came across my first bout. As in @tonyagregg's case, my air hunger didn't start while exercising but a few hours later, while resting at home. This first bout was extremely agressive, probably because I insisted on running on the following days as I thought I just needed to get used it. Eventually I stopped running altogether and the breathing issues went away in a few days.

Since those high school years I had a long SOB story but to make it short I will say that my bouts were almost always associated to aerobic exercise as stated above. Surprisingly, exercising with weights has not sparked these symptoms so far. I'm not sure why but I suspect that there might be a recovery issue behind my SOB (I've always needed very long time spans between weight sets). When it comes to doing weight exercise, you decide how long you wait before initiating another set... and at the same time a resistance set requires little oxygen for a short period of time

The kind of air hunger I'm referring to is characterized by 1.) About every 3-5 deep breaths would satisfy it, only for it to return a minute later (I just copy-paste it from @gabrielm post because that's exactly right in my case). 2.) I hardly experience this condition while exercising but I do a few hours later, while resting -this situation is similar to the one described by @tonyagregg, and 3.) If I insist on exercising on the following days the symptoms keep worsening day after day, initially only while resting but later on... I have to struggle all day long, no matter if I'm resting, walking, standing or lying down.

Although I feel that @Gabriel's issues and my symptoms are closely akin, I feel there's a few differences. The first one is the intensity. He comments that he can do long walks while doing light runs along the way or something like that... In my case I cannot run at all. I mean, I can, but if I try one day I will then have to deal with the hard SOB for many days, weeks or months. The second difference with @Gabriel's experience is that he said that his symptoms worsen when he lies down. This is not my case but it called my attention because while searching for answers on the Internet one day I stumbled across some diaphragma muscle-related disease where the sitting pulmonary function test differ from the supine one.

Finally, I would like to sum up my workup so far. Heart (several electrocardiograms, 2 ecocardiograms); Lung ( 2 spirometries and 1 pulmonary/cardiac stress test); Neurology (2 electromyograms, dry blood test for Pompe disease and right now waiting for a muscular biopsy result); Other (Blood tests, MRIs, Ecography, allergy & intolerance tests,). No significant or worth-mentioning findings on those tests except very high levels of CPKs (usually related to a broad range of potential neurological disorders). Next thursday I have an appointment with the neurologist to get the results from the muscular biopsy. I hope that this biopsy can shed light on the underlying cause of the condition.

REPLY
@steveso

I recently discovered this group while trying to finds a reason /cure for my breathing problems. I have some of the same symptoms described by people posting here. I have been suffering from this condition for about 14 years now. I become short of breath while exercising. I cannot ride a bicycle or enjoy hiking because of my inability to breathe. I cannot even leisurely walk in the woods without having to stop and catch my breath. I become short of breath using the stairs. I can't do anything outside once the sun begins to set, and forget doing something outside after dark. I have certain days where I have the feeling that I have to keep taking a deep breath, which sometimes I can't complete. At the same time I have to yawn constantly to get a deep breath. Half the time I can't complete the yawn. This problem almost always with a change of weather. I have had chronic sinusitis for 15 years and when my sinuses begin to drain, my sinuses swell, my nasal passages swell, my teeth hurt, my eyes feel like they are popping out of my head and my entire face hurts. This is when I have this air hunger. Nothing relieves it! When the weather system passes, it gets better.

I have been to pulmonologists, allergists, asthma specialists, cardiologists, ENT's, gastroenterologists and even speech pathologists in Boston, Rochester, NY and even in Penang, Malaysia. Some have said I had asthma. Some have said I have COPD and others say they simply don't know. I have been prescribed every known inhaler and nasal spray on the market. I've tried special diets, yoga and special exercises. Nothing has helped. I have been tested for allergies and came up negative. I've had sinus surgery, which did nothing for me. I've tried acupuncture, which didn't help. I'm sick and tired of being seen by specialists and telling my story over and over only to have them prescribe the same damn inhalers or other medication that I have tried without effect. Some of these inhalers cost 3 or 4 hundred dollars each, only to offer no help.

I am at the point now where I realize modern medicine cannot do anything for me. But I keep researching, looking for answers. This is what led me to this site. I know nothing will help, but I felt the need to vent. Thanks for allowing me to rant.

Jump to this post

I know what you mean, I'm so sick of all those inhalers, etc. Threw them all away-Let the Lord handle it!!!!

REPLY
@steveso

I recently discovered this group while trying to finds a reason /cure for my breathing problems. I have some of the same symptoms described by people posting here. I have been suffering from this condition for about 14 years now. I become short of breath while exercising. I cannot ride a bicycle or enjoy hiking because of my inability to breathe. I cannot even leisurely walk in the woods without having to stop and catch my breath. I become short of breath using the stairs. I can't do anything outside once the sun begins to set, and forget doing something outside after dark. I have certain days where I have the feeling that I have to keep taking a deep breath, which sometimes I can't complete. At the same time I have to yawn constantly to get a deep breath. Half the time I can't complete the yawn. This problem almost always with a change of weather. I have had chronic sinusitis for 15 years and when my sinuses begin to drain, my sinuses swell, my nasal passages swell, my teeth hurt, my eyes feel like they are popping out of my head and my entire face hurts. This is when I have this air hunger. Nothing relieves it! When the weather system passes, it gets better.

I have been to pulmonologists, allergists, asthma specialists, cardiologists, ENT's, gastroenterologists and even speech pathologists in Boston, Rochester, NY and even in Penang, Malaysia. Some have said I had asthma. Some have said I have COPD and others say they simply don't know. I have been prescribed every known inhaler and nasal spray on the market. I've tried special diets, yoga and special exercises. Nothing has helped. I have been tested for allergies and came up negative. I've had sinus surgery, which did nothing for me. I've tried acupuncture, which didn't help. I'm sick and tired of being seen by specialists and telling my story over and over only to have them prescribe the same damn inhalers or other medication that I have tried without effect. Some of these inhalers cost 3 or 4 hundred dollars each, only to offer no help.

I am at the point now where I realize modern medicine cannot do anything for me. But I keep researching, looking for answers. This is what led me to this site. I know nothing will help, but I felt the need to vent. Thanks for allowing me to rant.

Jump to this post

@steveso Thanks for sharing your experience. It's very difficult, but one thing I wanted to to discourage you from is saying that 'nothing will help.' Though we haven't found a cure yet, I'm confident that there's an answer out there somewhere, we just haven't found it yet. 🙂 It's difficult to have the positive mentality when we've been suffering for so long, but I feel like having hope and knowing that there is an answer keeps us going and always gives us hope. So don't lose hope my friend! There is an answer. I think being positive about it contributes to feeling a bit better and eases the suffering a bit; we just have to be persistent!

REPLY
@gabrielm

@steveso Thanks for sharing your experience. It's very difficult, but one thing I wanted to to discourage you from is saying that 'nothing will help.' Though we haven't found a cure yet, I'm confident that there's an answer out there somewhere, we just haven't found it yet. 🙂 It's difficult to have the positive mentality when we've been suffering for so long, but I feel like having hope and knowing that there is an answer keeps us going and always gives us hope. So don't lose hope my friend! There is an answer. I think being positive about it contributes to feeling a bit better and eases the suffering a bit; we just have to be persistent!

Jump to this post

@gabrielm - Great answer. One thing that is so frustrating about SOB is that whatever causes this also causes stress and anxiety which makes this a two edged sword. Two edged because both can cause the other, so you get a double whammy. Let me give a basic understanding of the differences between stress and anxiety. I'm sure that most of you will know this, but just in case. Also this clarification might help you manage your SOB.
Stress is basically a normal response our bodies have to any change. Such changes can be either positive or negative. The less control we have over the situation, which is creating the stress we are experiencing, the more intense the stress reaction will most likely be. We experience stress as a response to even positive changes in our lives; but the stress reaction, itself, is also positive at times.
Anxiety can be a result of prolonged stress, along with depression and panic attacks. But stress is not, necessarily, anxiety; nor does it automatically, or consistently, result in anxiety in all people. Stress and anxiety certainly share some common characteristics, which may account for why they are confused at times. So one is physical and one is emotional.
I believe that that there is a cause for every reaction and action. And I strongly agree with @gabrielm that there is an answer, somewhere. I know that this is very scary and frustrating. There really isn't much scary than not being able to take a breath and find that you can't, at least not the way you expect. Unless your fingernails and lips and toes aren't turning blue, you are getting enough oxygen. If you have any new symptoms hop over to your ER so that you can stop the lack of oxygen as soon as possible so it won't cause any damage.

@steveso- Have you found anything that helps you manage your anxiety?
@mario1966- Welcome to Connect. I am so glad that you have found us. What have you found that works for you?
@krisv- Welcome to Connect. I hope that all of you have read this person's post!

REPLY
Please sign in or register to post a reply.