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.

@zoelife

Hello, do you recall having any dental procedures prior to the initial shortness of breath came on? Someone I know had an extraction last year and then one week later started to have shortness of breath. They never had an issue with shortness of breath prior to that.

Jump to this post

@zoelife no I didn’t have any dental procedures when this first came up.

REPLY

So I've been taking pantoprazole for about a month now and have seen little improvement so I'm skeptical that it's totally acid related. But however i did come across a International Journal of Pulmonary and Respiratory Sciences Study/Opinion article that this is actually a common side effect from Covid-19 called Vagal neuropathy more specifically Postviral vagal neuropathy, here's a few links if anyone is interested:

https://juniperpublishers.com/ijoprs/pdf/IJOPRS.MS.ID.555641.pdf <--- (this one is interesting and similar to a lot of people in this post)

https://pubmed.ncbi.nlm.nih.gov/11464321/

Most of the foods in one of the article that they say to stay away from, I usually ingest multiple times a week like Flavored sodas, Bottled iced tea and tomato sauce so that might explain a bit.

Has anyone here checked out the possibilities that this could be some sort of vocal cord dysfunction with the vocal fold not closing correctly?

REPLY

Wanted to share some info after reading this entire thread. This will be lengthy as I have many thoughts on this issue.
Like a few posters on here, I am medical and have experience seeing this issue but I also have dealt with it myself and currently am dealing with it.
I developed very mild symptoms last summer, knew what it was (because I have had it before), didn't worry about it and no big deal but it worsened when I developed some other symptoms and I because I worry about what symptoms can mean (b/c of my medical knowledge) it spiraled out of control and a few months later I am still dealing with it even though my initial worry about something organic being the problem has resolved through reassuring tests.
The majority of posters on here deal with unexplained shortness of breath/air hunger; medical evaluation, often very thorough, is unrevealing.
The general terms applied to this condition is dysfunctional breathing; hyperventilation is also used.
There are several different ways this can manifest; true hyperventilation syndrome manifests with episodes of very rapid breathing and other symptoms due to blowing off CO2.
A lot of posters have another form characterized by the ongoing need to get more air- the constant perception of air hunger which results in exaggerated inspirations/sighs. For most on here, it is chronic rather than episodic.
There is some insight to what may cause this, with the thought that there is some derangement in the respiratory drive, and things can affect this like emotion. Some believe that in overbreathing, patients maintain a low CO2 and then enter a state where they become very sensitive to rises in CO2, which is what drives the excess breathing.
One easy way to check your tolerance to CO2 by inhaling, exhaling, then holding your breath after exhale. If your time is less than 20 secs, that is typical.
The "root" cause that everyone would like to know is unclear but without question, there is a psychological component to this.
Generally when I have experienced it there is an underlying stressor, whether recognized or not. And certainly if there is stress related to the condition that will not help.
Many posters mention GERD/LPR ("silent reflux"). I have it. Is it related? It is unclear. I know there is a blog that mentions esophagitis as a cause of "pseudodyspnea". You won't find that in the traditional medical literature. Those conditions are common anyway and most don't have this breathing thing. Acid reflux can worsen with stress, so is it reflective of the underlying stress? I don't know, but I don't believe this is simply a function of acid reflux.
Many on here feel they are being dismissed if this is attributed to anxiety but I think that is because they perceive that they are being told the symptoms aren't "real."
Whether a symptom is organic in origin, or psychogenic, it is "real." Your mental health plays a huge role in your physical health/symptoms.
What is clear is there is no simple fix. A few things are clear: when a multitude of tests are normal, accepting that this disorder is not a function of something organic is helpful. The typical causes of dyspnea are readily diagnosable including pulmonary and cardiovascular causes. While negative results are normally reassuring, most probably are left questioning "why do I feel so bad?" and most doctors don't do well explaining symptoms like this in the face of negative tests.
It is difficult, but the focus can't be on the symptom- it will just perpetuate it. Many mention distraction helps and this isn't coincidental.
A nurse posted recently and that has become her philosophy- accept it and move on and over time it will be less intrusive in your life and will eventually fade.
I encourage everyone to, as best they can, lead their life as normally as they can and don't make accommodations for this. If you let it in, it can overtake your life.
Posters have mentioned a pulse oximeter- they are cheap. I encourage obtaining one and no matter how short of breath or hungry for air you feel, if you check your oxygen level it should be normal- 95% or higher- that can be reassuring. That means your heart and lungs are working effectively to oxygenate your blood which is the most important aspect. People with heart disease or pulmonary disease who get short of breath will often not maintain their oxygen level.
Various things work for various people. Some people get better with GERD treatment; some improve with antidepressants/anxiety treatment. Some mention supplements/diet. At this point, there is not one simple fix.
Regardless of whether it is a placebo response or "real" response, it doesn't matter. Placebo responses are real, and in a condition like this, I suspect that believing that the treatment will work is probably as important as anything.
This condition reflects that there is a mind/body connection. I have had instances of literally worrying myself sick when I would get such severe symptoms that I "knew" I absolutely had to have something wrong with me. Over time, with reassurance, these episodes would fade and I would get back to normal. Unfortunately, I am prone to worry/anxiety related to health and if something is going on psychologically, this can manifest with "real" symptoms but there is no organic cause. This can cause worry and the cycle can begin.
It is unfortunate but reality that as common as this condition is, little is known about it. I'm in a position to know and I have no idea who I could see that would deal with this condition. The various specialists are good at ruling out diseases and that plays a role in this condition; when there is no evidence of disease, they don't always have good explanations.
I appreciate all who have shared their stories. There is some comfort knowing how common this is. I gleaned some information reading through the stories.
My advice is accept that despite how bad your symptoms might be, if you have had those reassuring tests, tell yourself you are healthy. You may not feel healthy, but you are. Live your life, exercise, etc. If you have depression/anxiety, get it treated; same for reflux. If you want to follow a diet, do it. If you believe you will get better, you will. You will hopefully find stretches where you forget about the symptoms and those become more and more frequent and eventually the problem fades.

REPLY
@sal51

Wanted to share some info after reading this entire thread. This will be lengthy as I have many thoughts on this issue.
Like a few posters on here, I am medical and have experience seeing this issue but I also have dealt with it myself and currently am dealing with it.
I developed very mild symptoms last summer, knew what it was (because I have had it before), didn't worry about it and no big deal but it worsened when I developed some other symptoms and I because I worry about what symptoms can mean (b/c of my medical knowledge) it spiraled out of control and a few months later I am still dealing with it even though my initial worry about something organic being the problem has resolved through reassuring tests.
The majority of posters on here deal with unexplained shortness of breath/air hunger; medical evaluation, often very thorough, is unrevealing.
The general terms applied to this condition is dysfunctional breathing; hyperventilation is also used.
There are several different ways this can manifest; true hyperventilation syndrome manifests with episodes of very rapid breathing and other symptoms due to blowing off CO2.
A lot of posters have another form characterized by the ongoing need to get more air- the constant perception of air hunger which results in exaggerated inspirations/sighs. For most on here, it is chronic rather than episodic.
There is some insight to what may cause this, with the thought that there is some derangement in the respiratory drive, and things can affect this like emotion. Some believe that in overbreathing, patients maintain a low CO2 and then enter a state where they become very sensitive to rises in CO2, which is what drives the excess breathing.
One easy way to check your tolerance to CO2 by inhaling, exhaling, then holding your breath after exhale. If your time is less than 20 secs, that is typical.
The "root" cause that everyone would like to know is unclear but without question, there is a psychological component to this.
Generally when I have experienced it there is an underlying stressor, whether recognized or not. And certainly if there is stress related to the condition that will not help.
Many posters mention GERD/LPR ("silent reflux"). I have it. Is it related? It is unclear. I know there is a blog that mentions esophagitis as a cause of "pseudodyspnea". You won't find that in the traditional medical literature. Those conditions are common anyway and most don't have this breathing thing. Acid reflux can worsen with stress, so is it reflective of the underlying stress? I don't know, but I don't believe this is simply a function of acid reflux.
Many on here feel they are being dismissed if this is attributed to anxiety but I think that is because they perceive that they are being told the symptoms aren't "real."
Whether a symptom is organic in origin, or psychogenic, it is "real." Your mental health plays a huge role in your physical health/symptoms.
What is clear is there is no simple fix. A few things are clear: when a multitude of tests are normal, accepting that this disorder is not a function of something organic is helpful. The typical causes of dyspnea are readily diagnosable including pulmonary and cardiovascular causes. While negative results are normally reassuring, most probably are left questioning "why do I feel so bad?" and most doctors don't do well explaining symptoms like this in the face of negative tests.
It is difficult, but the focus can't be on the symptom- it will just perpetuate it. Many mention distraction helps and this isn't coincidental.
A nurse posted recently and that has become her philosophy- accept it and move on and over time it will be less intrusive in your life and will eventually fade.
I encourage everyone to, as best they can, lead their life as normally as they can and don't make accommodations for this. If you let it in, it can overtake your life.
Posters have mentioned a pulse oximeter- they are cheap. I encourage obtaining one and no matter how short of breath or hungry for air you feel, if you check your oxygen level it should be normal- 95% or higher- that can be reassuring. That means your heart and lungs are working effectively to oxygenate your blood which is the most important aspect. People with heart disease or pulmonary disease who get short of breath will often not maintain their oxygen level.
Various things work for various people. Some people get better with GERD treatment; some improve with antidepressants/anxiety treatment. Some mention supplements/diet. At this point, there is not one simple fix.
Regardless of whether it is a placebo response or "real" response, it doesn't matter. Placebo responses are real, and in a condition like this, I suspect that believing that the treatment will work is probably as important as anything.
This condition reflects that there is a mind/body connection. I have had instances of literally worrying myself sick when I would get such severe symptoms that I "knew" I absolutely had to have something wrong with me. Over time, with reassurance, these episodes would fade and I would get back to normal. Unfortunately, I am prone to worry/anxiety related to health and if something is going on psychologically, this can manifest with "real" symptoms but there is no organic cause. This can cause worry and the cycle can begin.
It is unfortunate but reality that as common as this condition is, little is known about it. I'm in a position to know and I have no idea who I could see that would deal with this condition. The various specialists are good at ruling out diseases and that plays a role in this condition; when there is no evidence of disease, they don't always have good explanations.
I appreciate all who have shared their stories. There is some comfort knowing how common this is. I gleaned some information reading through the stories.
My advice is accept that despite how bad your symptoms might be, if you have had those reassuring tests, tell yourself you are healthy. You may not feel healthy, but you are. Live your life, exercise, etc. If you have depression/anxiety, get it treated; same for reflux. If you want to follow a diet, do it. If you believe you will get better, you will. You will hopefully find stretches where you forget about the symptoms and those become more and more frequent and eventually the problem fades.

Jump to this post

@sal51- Welcome to Mayo Clinic Connect and where have you been? lol. Most of us are not in the medical field at all. Connect's members are patients who help other patients with support and personal experiences.

Thank you for your information. May I ask what field are you in?

REPLY
@sal51

Wanted to share some info after reading this entire thread. This will be lengthy as I have many thoughts on this issue.
Like a few posters on here, I am medical and have experience seeing this issue but I also have dealt with it myself and currently am dealing with it.
I developed very mild symptoms last summer, knew what it was (because I have had it before), didn't worry about it and no big deal but it worsened when I developed some other symptoms and I because I worry about what symptoms can mean (b/c of my medical knowledge) it spiraled out of control and a few months later I am still dealing with it even though my initial worry about something organic being the problem has resolved through reassuring tests.
The majority of posters on here deal with unexplained shortness of breath/air hunger; medical evaluation, often very thorough, is unrevealing.
The general terms applied to this condition is dysfunctional breathing; hyperventilation is also used.
There are several different ways this can manifest; true hyperventilation syndrome manifests with episodes of very rapid breathing and other symptoms due to blowing off CO2.
A lot of posters have another form characterized by the ongoing need to get more air- the constant perception of air hunger which results in exaggerated inspirations/sighs. For most on here, it is chronic rather than episodic.
There is some insight to what may cause this, with the thought that there is some derangement in the respiratory drive, and things can affect this like emotion. Some believe that in overbreathing, patients maintain a low CO2 and then enter a state where they become very sensitive to rises in CO2, which is what drives the excess breathing.
One easy way to check your tolerance to CO2 by inhaling, exhaling, then holding your breath after exhale. If your time is less than 20 secs, that is typical.
The "root" cause that everyone would like to know is unclear but without question, there is a psychological component to this.
Generally when I have experienced it there is an underlying stressor, whether recognized or not. And certainly if there is stress related to the condition that will not help.
Many posters mention GERD/LPR ("silent reflux"). I have it. Is it related? It is unclear. I know there is a blog that mentions esophagitis as a cause of "pseudodyspnea". You won't find that in the traditional medical literature. Those conditions are common anyway and most don't have this breathing thing. Acid reflux can worsen with stress, so is it reflective of the underlying stress? I don't know, but I don't believe this is simply a function of acid reflux.
Many on here feel they are being dismissed if this is attributed to anxiety but I think that is because they perceive that they are being told the symptoms aren't "real."
Whether a symptom is organic in origin, or psychogenic, it is "real." Your mental health plays a huge role in your physical health/symptoms.
What is clear is there is no simple fix. A few things are clear: when a multitude of tests are normal, accepting that this disorder is not a function of something organic is helpful. The typical causes of dyspnea are readily diagnosable including pulmonary and cardiovascular causes. While negative results are normally reassuring, most probably are left questioning "why do I feel so bad?" and most doctors don't do well explaining symptoms like this in the face of negative tests.
It is difficult, but the focus can't be on the symptom- it will just perpetuate it. Many mention distraction helps and this isn't coincidental.
A nurse posted recently and that has become her philosophy- accept it and move on and over time it will be less intrusive in your life and will eventually fade.
I encourage everyone to, as best they can, lead their life as normally as they can and don't make accommodations for this. If you let it in, it can overtake your life.
Posters have mentioned a pulse oximeter- they are cheap. I encourage obtaining one and no matter how short of breath or hungry for air you feel, if you check your oxygen level it should be normal- 95% or higher- that can be reassuring. That means your heart and lungs are working effectively to oxygenate your blood which is the most important aspect. People with heart disease or pulmonary disease who get short of breath will often not maintain their oxygen level.
Various things work for various people. Some people get better with GERD treatment; some improve with antidepressants/anxiety treatment. Some mention supplements/diet. At this point, there is not one simple fix.
Regardless of whether it is a placebo response or "real" response, it doesn't matter. Placebo responses are real, and in a condition like this, I suspect that believing that the treatment will work is probably as important as anything.
This condition reflects that there is a mind/body connection. I have had instances of literally worrying myself sick when I would get such severe symptoms that I "knew" I absolutely had to have something wrong with me. Over time, with reassurance, these episodes would fade and I would get back to normal. Unfortunately, I am prone to worry/anxiety related to health and if something is going on psychologically, this can manifest with "real" symptoms but there is no organic cause. This can cause worry and the cycle can begin.
It is unfortunate but reality that as common as this condition is, little is known about it. I'm in a position to know and I have no idea who I could see that would deal with this condition. The various specialists are good at ruling out diseases and that plays a role in this condition; when there is no evidence of disease, they don't always have good explanations.
I appreciate all who have shared their stories. There is some comfort knowing how common this is. I gleaned some information reading through the stories.
My advice is accept that despite how bad your symptoms might be, if you have had those reassuring tests, tell yourself you are healthy. You may not feel healthy, but you are. Live your life, exercise, etc. If you have depression/anxiety, get it treated; same for reflux. If you want to follow a diet, do it. If you believe you will get better, you will. You will hopefully find stretches where you forget about the symptoms and those become more and more frequent and eventually the problem fades.

Jump to this post

@sal51 Wow, thank you so much for this post. This is incredibly helpful and insightful. Reassures us that our state of mind can play a huge role in how we feel. I’ve found that working in improving an area of my life (exercise, diet, getting help for allergies, etc.) one at a time helps to some degree. Thanks for providing a point of view from a medical professional not normally perceived by most medical professionals.

REPLY
@itsnotanxiety

So I've been taking pantoprazole for about a month now and have seen little improvement so I'm skeptical that it's totally acid related. But however i did come across a International Journal of Pulmonary and Respiratory Sciences Study/Opinion article that this is actually a common side effect from Covid-19 called Vagal neuropathy more specifically Postviral vagal neuropathy, here's a few links if anyone is interested:

https://juniperpublishers.com/ijoprs/pdf/IJOPRS.MS.ID.555641.pdf <--- (this one is interesting and similar to a lot of people in this post)

https://pubmed.ncbi.nlm.nih.gov/11464321/

Most of the foods in one of the article that they say to stay away from, I usually ingest multiple times a week like Flavored sodas, Bottled iced tea and tomato sauce so that might explain a bit.

Has anyone here checked out the possibilities that this could be some sort of vocal cord dysfunction with the vocal fold not closing correctly?

Jump to this post

@isnotanxiety. After a few months of being on this site, it's hard for me to keep people straight. Didn't you say something in one of your early posts about coming in contact with someone you thought had Covid about the time your symptoms appeared? This could well be the cause of your SOB, etc. I've gotten interested in the underlying role histamines and amines play in causing health problems and have it on my to-do list to read more about it and the anti-histamine diet to reduce inflammation. It might be interesting and valuable to you to look at what you are eating and drinking and eliminate those things that have have histamines and amines to see if that helps. Maybe the article you referred to that mentioned food said something about that. We're benefiting from the knowledge you are finding and sharing with us as you try to understand what's going. Thanks! Take care. Nancy

REPLY
@gabrielm

@sal51 Wow, thank you so much for this post. This is incredibly helpful and insightful. Reassures us that our state of mind can play a huge role in how we feel. I’ve found that working in improving an area of my life (exercise, diet, getting help for allergies, etc.) one at a time helps to some degree. Thanks for providing a point of view from a medical professional not normally perceived by most medical professionals.

Jump to this post

@sal51 @gabrielm. I'll second this WOW and everything Gabriel said including Thanks. It's easy to forget doctors are humans usually trying their best to help their patients. They become frustrated when they can't find reasons for our symptoms and their inability to help us, just as we become frustrated by not being helped. I have hope someday doctors and scientists will find answers to help people with these symptoms. I remember visiting several doctors decades ago to no avail when I was feeling like death warmed over. Doctors at the time didn't know anything about chronic fatigue or fibromyalgia and tended to discount and dismiss me and my symptoms. Now they are both widely recognized illnesses with treatment protocols. I really like your common sense approach and will remember it in the future. Thanks for your post and good luck in your journey to better health. Take care. Nancy

REPLY
@sal51

Wanted to share some info after reading this entire thread. This will be lengthy as I have many thoughts on this issue.
Like a few posters on here, I am medical and have experience seeing this issue but I also have dealt with it myself and currently am dealing with it.
I developed very mild symptoms last summer, knew what it was (because I have had it before), didn't worry about it and no big deal but it worsened when I developed some other symptoms and I because I worry about what symptoms can mean (b/c of my medical knowledge) it spiraled out of control and a few months later I am still dealing with it even though my initial worry about something organic being the problem has resolved through reassuring tests.
The majority of posters on here deal with unexplained shortness of breath/air hunger; medical evaluation, often very thorough, is unrevealing.
The general terms applied to this condition is dysfunctional breathing; hyperventilation is also used.
There are several different ways this can manifest; true hyperventilation syndrome manifests with episodes of very rapid breathing and other symptoms due to blowing off CO2.
A lot of posters have another form characterized by the ongoing need to get more air- the constant perception of air hunger which results in exaggerated inspirations/sighs. For most on here, it is chronic rather than episodic.
There is some insight to what may cause this, with the thought that there is some derangement in the respiratory drive, and things can affect this like emotion. Some believe that in overbreathing, patients maintain a low CO2 and then enter a state where they become very sensitive to rises in CO2, which is what drives the excess breathing.
One easy way to check your tolerance to CO2 by inhaling, exhaling, then holding your breath after exhale. If your time is less than 20 secs, that is typical.
The "root" cause that everyone would like to know is unclear but without question, there is a psychological component to this.
Generally when I have experienced it there is an underlying stressor, whether recognized or not. And certainly if there is stress related to the condition that will not help.
Many posters mention GERD/LPR ("silent reflux"). I have it. Is it related? It is unclear. I know there is a blog that mentions esophagitis as a cause of "pseudodyspnea". You won't find that in the traditional medical literature. Those conditions are common anyway and most don't have this breathing thing. Acid reflux can worsen with stress, so is it reflective of the underlying stress? I don't know, but I don't believe this is simply a function of acid reflux.
Many on here feel they are being dismissed if this is attributed to anxiety but I think that is because they perceive that they are being told the symptoms aren't "real."
Whether a symptom is organic in origin, or psychogenic, it is "real." Your mental health plays a huge role in your physical health/symptoms.
What is clear is there is no simple fix. A few things are clear: when a multitude of tests are normal, accepting that this disorder is not a function of something organic is helpful. The typical causes of dyspnea are readily diagnosable including pulmonary and cardiovascular causes. While negative results are normally reassuring, most probably are left questioning "why do I feel so bad?" and most doctors don't do well explaining symptoms like this in the face of negative tests.
It is difficult, but the focus can't be on the symptom- it will just perpetuate it. Many mention distraction helps and this isn't coincidental.
A nurse posted recently and that has become her philosophy- accept it and move on and over time it will be less intrusive in your life and will eventually fade.
I encourage everyone to, as best they can, lead their life as normally as they can and don't make accommodations for this. If you let it in, it can overtake your life.
Posters have mentioned a pulse oximeter- they are cheap. I encourage obtaining one and no matter how short of breath or hungry for air you feel, if you check your oxygen level it should be normal- 95% or higher- that can be reassuring. That means your heart and lungs are working effectively to oxygenate your blood which is the most important aspect. People with heart disease or pulmonary disease who get short of breath will often not maintain their oxygen level.
Various things work for various people. Some people get better with GERD treatment; some improve with antidepressants/anxiety treatment. Some mention supplements/diet. At this point, there is not one simple fix.
Regardless of whether it is a placebo response or "real" response, it doesn't matter. Placebo responses are real, and in a condition like this, I suspect that believing that the treatment will work is probably as important as anything.
This condition reflects that there is a mind/body connection. I have had instances of literally worrying myself sick when I would get such severe symptoms that I "knew" I absolutely had to have something wrong with me. Over time, with reassurance, these episodes would fade and I would get back to normal. Unfortunately, I am prone to worry/anxiety related to health and if something is going on psychologically, this can manifest with "real" symptoms but there is no organic cause. This can cause worry and the cycle can begin.
It is unfortunate but reality that as common as this condition is, little is known about it. I'm in a position to know and I have no idea who I could see that would deal with this condition. The various specialists are good at ruling out diseases and that plays a role in this condition; when there is no evidence of disease, they don't always have good explanations.
I appreciate all who have shared their stories. There is some comfort knowing how common this is. I gleaned some information reading through the stories.
My advice is accept that despite how bad your symptoms might be, if you have had those reassuring tests, tell yourself you are healthy. You may not feel healthy, but you are. Live your life, exercise, etc. If you have depression/anxiety, get it treated; same for reflux. If you want to follow a diet, do it. If you believe you will get better, you will. You will hopefully find stretches where you forget about the symptoms and those become more and more frequent and eventually the problem fades.

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@sal51 thank you so much for your information and experience. Just reading this made me feel like I was not crazy, or on my own in the way I feel. I will take on board your suggestions and hopefully start to feel much better. Thank you again

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@nla4625

@isnotanxiety. After a few months of being on this site, it's hard for me to keep people straight. Didn't you say something in one of your early posts about coming in contact with someone you thought had Covid about the time your symptoms appeared? This could well be the cause of your SOB, etc. I've gotten interested in the underlying role histamines and amines play in causing health problems and have it on my to-do list to read more about it and the anti-histamine diet to reduce inflammation. It might be interesting and valuable to you to look at what you are eating and drinking and eliminate those things that have have histamines and amines to see if that helps. Maybe the article you referred to that mentioned food said something about that. We're benefiting from the knowledge you are finding and sharing with us as you try to understand what's going. Thanks! Take care. Nancy

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@isnotanxiety. Here are some article about histamines. If you scroll way down to the article on Histamine Intolerance, you'll see they list shortness of breath as a symptom. Every breadcrumb might lead to something valuable. https://www.medicalnewstoday.com/articles/low-histamine-diet

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@merpreb

@sal51- Welcome to Mayo Clinic Connect and where have you been? lol. Most of us are not in the medical field at all. Connect's members are patients who help other patients with support and personal experiences.

Thank you for your information. May I ask what field are you in?

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I am allergy and immunology. I see pts with a variety of breathing problems and this issue is not uncommon to see.
Many posters question a role for allergy.
Academically speaking, this condition is absolutely NOT allergy-related. Allergy affects your eyes and nose (itchy, sneezy, watery, congestion); beyond that, if you have asthma, it can trigger asthma but you will have evidence of asthma on evaluation.
Many talk about going to an allergist, having allergy testing, testing allergic, and receiving treatment.
In this case, the allergist is simply treating your test result, but not this particular problem. Patients who have this condition may have any number of conditions, including allergy but finding evidence of that condition does not imply causation.
In patients searching for a cause of mysterious symptoms, to be told you have evidence of a condition, such as allergy, in some sense can be relieving if you believe, "Finally, they have discovered the problem." You may even improve with treatment directed at that condition but that is likely more a function of believing the treatment will work (and I don't dismiss the importance otherwise).
Until proven otherwise, I believe this condition stems from the brain and some type of aberrant response of your respiratory drive. Because there are no tests for this, all the usual tests for shortness of breath come out normal.
There are various factors which likely affect this aberrant response, with emotion playing a huge role.
The question is how to fix that response that is going haywire and there is no one good answer.
I have wondered about a potential relationship to migraine disorder. That condition can manifest in a number of ways such as irritable bowel (the two diseases are likely related to the same disease manifesting in different parts of the body). In patients with migraine, they generally are hypersensitive to various stimuli that end up triggering symptoms- an example would be someone who reacts to odors with a headache or other symptoms. Migraine is a dysfunction of the nervous system.
Several posters mention symptoms that might be attributable to migraine, such a facial pressure, ear pain, etc. After reading the posts and knowing this condition is more common in females, I've wondered if this is not some odd manifestation of that condition.
I would be curious if any of the posters have been diagnosed with migraine disorder or if they have wondered if they might have it.
Indications of this condition might include "normal" migraines, IBS, other types of headaches including tension and sinus, as well as things like vertigo or odor sensitivity. If it might be related to that, that might suggest treatments targeting migraine could potentially have a role.
There is no evidence to support this idea, just something I've wondered about and I appreciate the wide variety of ways migraine disorder manifests in patients.

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