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.

@jenh1128

Has anyone considered mold in their homes as a reason for the air hunger? I have been out of town the past 2 weekends and my air hunger is just about non existent while away. I progressively becomes worse with each day once I'm home. On my really bad days I am also very bloated. I don't know if it is related, a coincidence, or I'm causing it by trying to get that deep breath in over and over again.

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I am noticing an improvement after having our air ducts cleaned and my husband could tell the difference immediately. It’s well worth the money spent if you don’t know when it was last done if you moved recently.

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@gabrielm

Hi @eamon11235, that’s a strange symptom that you describe, about the hands and feet turning red and burning. I wonder if it has anything to do with blood circulation or maybe some kind of reaction to something along with the SOB. Have you any other tests done like heart tests, I’d imagine they tested for asthma during your lung function?

I do find that lying down seems to make it a little worse. I can sometimes sleep fine lying down but I do find more comfort in sleeping sitting mostly upright. How about you, do you experience a difference upright vs lying down?

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They did an ECG on my heart and everything was normal. I've had a history of asthma since I was eleven, but I went to see a respirologist and she said my pulmonary function test was essentially fine and that it was likely something else that was contributing to my breathlessness.

She suspected that I might have paradoxical vocal cord disorder -- a condition in which the vocal cords randomly snap shut during inhalation, so I went to see an ENT and the ENT didn't observe it upon examination, however she did notice that there was some redness irritation surrounding my vocal cords. She suspected GERD and put me on pantoprazole; I think it helped my GERD, but it didn't help my SOB. They even put me on 50mg of prednisone for a week to see what would happen and that still didn't help.

My guess for the burning hands/ redness is that there is some kind of compensatory reaction in which my blood vessels spasm when they don't get enough oxygen -- I also have a history of Raynaud's, which is the complete opposite of the burning hand's syndrome (erythromelalgia). My doc suspects that I have some sort of autoimmune disorder or something.

When I lie down it usually makes me breathe better, and when I sit up straight it feels like my diaphragm can't stretch down all the way, which has also lead me to think that I have some sort of hiatal hernia, but I don't exhibit most of the symptoms: mostly just mild GERD and hoarseness.

Sorry for the long run-on paragraphs. I understand how frustrating it is to experience SOB, especially when there are no ostensibly physical causes. My parents and SO all think I'm starting to lose my mind over this, and it really has been taking a toll on my mental health. It's become incredibly difficult to exercise. I used to be able to run half marathons and now I feel like I can barely make dinner sometimes. I have a history of panic attacks once in a blue moon, but they only started after my physical health started to decline, otherwise, I'm a pretty relaxed person. So I also don't think mine's anxiety-related either. Anyways, I understand what it means to struggle with SOB, and it is not a fun experience. I've had a hard time trying to convince the people around me that this isn't some kind of psychogenic disorder. Have you encountered people who try to challenge its validity? If so, what have you done to overcome this?

Best regards & take care,

E

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@gabrielm

@ jenh1128, interesting! I once considered allergens and mold at one point as a possibility for my issue. I don’t have a mold problem here in the desert southwest but could see that being a possibility in Florida. I am getting treated for allergies (allergy shots) to help my sinuses and when they’re clear, I don’t have much of a breathing problem. Even mild sinus inflammation can he a problem for a lot of people with their breathing. I also considered that it could be the area I live in but my symptoms are the same no matter where I am. Though it’s still manageable and tolerable, it doesn’t seem to matter at what elevation or environment I’m in.

That’s interesting that you feel bloated when the problem is worse. I too have noticed that in me. If I eat too much it definitely affects the issue so I try to have a lighter and clean diet (but I have weaknesses, lol!) But even when not food related, as the air hunger worsens, I do notice I feel bloated. Have you tried changes in your diet?

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I have tried changes in my diet. First I tried to eliminate dairy and it did not help my symptoms. I tried to eat pretty "clean" but also did not relieve the symptoms. I wonder if the bloating is from trying so many times to get that deep breath. Are we bloating ourselves?

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@jenh1128

I have tried changes in my diet. First I tried to eliminate dairy and it did not help my symptoms. I tried to eat pretty "clean" but also did not relieve the symptoms. I wonder if the bloating is from trying so many times to get that deep breath. Are we bloating ourselves?

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That's a good question. Sometimes I do think that the feeling of being bloated may be related to breathing too much, like having to do with the diaphragm working a lot. But it's only present when my sinuses are inflamed and I'm breathing more than usual due to the exacerbation of the air hunger. General inflammation might be a factor and I understand there may be certain markers from a medical perspective which might be worth for you to consider as well.

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@eamon11235

They did an ECG on my heart and everything was normal. I've had a history of asthma since I was eleven, but I went to see a respirologist and she said my pulmonary function test was essentially fine and that it was likely something else that was contributing to my breathlessness.

She suspected that I might have paradoxical vocal cord disorder -- a condition in which the vocal cords randomly snap shut during inhalation, so I went to see an ENT and the ENT didn't observe it upon examination, however she did notice that there was some redness irritation surrounding my vocal cords. She suspected GERD and put me on pantoprazole; I think it helped my GERD, but it didn't help my SOB. They even put me on 50mg of prednisone for a week to see what would happen and that still didn't help.

My guess for the burning hands/ redness is that there is some kind of compensatory reaction in which my blood vessels spasm when they don't get enough oxygen -- I also have a history of Raynaud's, which is the complete opposite of the burning hand's syndrome (erythromelalgia). My doc suspects that I have some sort of autoimmune disorder or something.

When I lie down it usually makes me breathe better, and when I sit up straight it feels like my diaphragm can't stretch down all the way, which has also lead me to think that I have some sort of hiatal hernia, but I don't exhibit most of the symptoms: mostly just mild GERD and hoarseness.

Sorry for the long run-on paragraphs. I understand how frustrating it is to experience SOB, especially when there are no ostensibly physical causes. My parents and SO all think I'm starting to lose my mind over this, and it really has been taking a toll on my mental health. It's become incredibly difficult to exercise. I used to be able to run half marathons and now I feel like I can barely make dinner sometimes. I have a history of panic attacks once in a blue moon, but they only started after my physical health started to decline, otherwise, I'm a pretty relaxed person. So I also don't think mine's anxiety-related either. Anyways, I understand what it means to struggle with SOB, and it is not a fun experience. I've had a hard time trying to convince the people around me that this isn't some kind of psychogenic disorder. Have you encountered people who try to challenge its validity? If so, what have you done to overcome this?

Best regards & take care,

E

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I wonder if there are more tests your doctor could do to check for an autoimmune disorder. It sounds like you could also be checked for a hiatal hernia; depending on where it is if you do have one, that could interfere with your diaphragm.

I hear you about it taking a toll on your mental health. Early on when it first started for me, it certainly took a toll on mine as well. Lots of uncertainty and wondering it it would get better. As I did breathing exercises and it improved, it was no longer an issue but when it returned about 4 years ago and has remained, I learned that it's a condition that I may be dealing with for a long time. Since I now have a routine of breathing exercises and physical exercise which helps keep it at bay, my mental health has been steady and improved. I have adopted a 'it is what it is' and acceptance mindset but never losing hope that my breathing will be normal again.

I can't exercise rigorously like I used to, and every now and then like you, I would have to delay some tasks as I experience 'flare ups' of the air hunger. But I have learned to wait it out and tell myself that I will be fine and it will be better again. Knowing that there are ups and downs and knowing that the downs are temporary keeps me sane and my mentality consistent.

When it first started, I did encounter people who thought it was just in my mind or thought it was something else. I don't as much now since those around me know it's something I've been dealing with a for a while, but how I overcame it was simply to relate to people who believed me as well as others who have been dealing with certain conditions, and talk to them about it and not really bring it up to those who didn't believe me.

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@gabrielm

I wonder if there are more tests your doctor could do to check for an autoimmune disorder. It sounds like you could also be checked for a hiatal hernia; depending on where it is if you do have one, that could interfere with your diaphragm.

I hear you about it taking a toll on your mental health. Early on when it first started for me, it certainly took a toll on mine as well. Lots of uncertainty and wondering it it would get better. As I did breathing exercises and it improved, it was no longer an issue but when it returned about 4 years ago and has remained, I learned that it's a condition that I may be dealing with for a long time. Since I now have a routine of breathing exercises and physical exercise which helps keep it at bay, my mental health has been steady and improved. I have adopted a 'it is what it is' and acceptance mindset but never losing hope that my breathing will be normal again.

I can't exercise rigorously like I used to, and every now and then like you, I would have to delay some tasks as I experience 'flare ups' of the air hunger. But I have learned to wait it out and tell myself that I will be fine and it will be better again. Knowing that there are ups and downs and knowing that the downs are temporary keeps me sane and my mentality consistent.

When it first started, I did encounter people who thought it was just in my mind or thought it was something else. I don't as much now since those around me know it's something I've been dealing with a for a while, but how I overcame it was simply to relate to people who believed me as well as others who have been dealing with certain conditions, and talk to them about it and not really bring it up to those who didn't believe me.

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Hi Gabriel, I was also suspicious of sinus problems and I had a CT scan, but the doctor said you have no problem. I have exactly this shortness of breath for 5 years. I am still continuing my research. I am more suspicious of stomach and larynx problems.

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@amirreza

Hi Gabriel, I was also suspicious of sinus problems and I had a CT scan, but the doctor said you have no problem. I have exactly this shortness of breath for 5 years. I am still continuing my research. I am more suspicious of stomach and larynx problems.

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@amirreza how are your symptoms? Are you going to pursue stomach or larynx tests with your doctor?

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@gabrielm

@amirreza how are your symptoms? Are you going to pursue stomach or larynx tests with your doctor?

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My symptoms have improved slightly with the control of stomach problems. I recently found out I have had silent reflux for a long time. I haven't done many tests for my stomach yet, but I plan to do it. But before that, I went to several ENT specialists and the photos of my larynx always showed stomach acid, but they confirmed the health of my larynx. Some of them suggested that I go to a speech therapist. I think it may be the main problem of the stomach that has disturbed the diaphragm, but maybe some speech therapist techniques can help. I also take anti-allergy pills and a history of I have allergies, but my lungs are completely healthy. I have little suspicion of laryngeal problems. A healthy voice is a sign of laryngeal health. Do you have a normal voice?

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@helpnywhereucan

I understand. When I was in the middle of it, I didn't think I'd see my way out. I thought if I survived it, it would always be that way and who would want to live like that. The good news is, I'm about 99% free of it. It will come back, for a few minutes or so, here and there, but it's more background noise at this point. I can notice it but I'm never affected by it. And when I think about it, the last time it came back I was having an argument with my husband. I noticed it, but was able to keep shouting and screaming at him, Lol. A few seconds later it was gone. I think it was stress related. The other times it happened, I hadn't had enough water that day.

I've come a long way. When it first started I couldn't lay flat so I never slept. I paced all night long...literally for hours. I would double over it got so bad. I would cry. One time I almost wrecked my car. It was the most horrible thing I'd ever experienced.

I have previous posts if you'd like to go back and read them. When I couldn't sleep I googled SOB all night and tried to piece together a plan. I incorporated plenty of healthy foods, focused on electrolytes, alkalinity, making sure I drank enough water. I also recommend whole foods based supplements. Synthetic vitamins can be acidic. The whole foods ones, less so.

Conventional medicine has yet to catch up with some of these alternative approaches but giving the body what it needs via diet works and supplementing if you have to. Our Western diet, full of fast and convenience foods is very acidic. We don't follow the food pyramid any longer. Most kids don't know what it is. They eat from the drive through everyday. It's catching up to all of us.

Best wishes to you on your visit to the lung doctor. If nothing is found, try getting as healthy as you can...ultra-healthy if you have to. It's really a can't lose proposition.

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Hi, I also am hearing an acidic ph is a problem, not only for osteoporosis but chronic inflammation and cancer. That means no or very little coffee, no soda, very little red meat, etc. It is such a great alternative to the current and probably future osteoporosis drugs. I follow Dr. Mark Hyman's https://drhyman.com/blog/category/podcasts/. I would love to hear if you have other sources, i.e., saveourbones, etc?

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Gabe, I think I am having the same problem as you. I am a 29 year old female and I am taking no medications. I had been experiencing palpitations and chest pain for about a year so I went to the PCP in January and they did an EKG. It showed an abnormality and I ended up at a cardiologist and they did a full work up on me and everything came back fine. I decided to see a pulmonologist (and this was before I noticed my breathing issue) and the PFT was normal, no asthma, no obstruction. So ever since then I don't know if I just became hyperaware of my breathing but I am constantly taking deep satisfying breaths. I can go a minute or two without, but sometimes I need to 30 seconds later. I notice I do this more when I am at work, or sitting around being lazy. I had a follow up with the pulmonologist and I described the symptoms to her, and she said that deep breathing isn't bad for the lungs. I've done a lot of googling on this and everything I read doesn't show any negative affect this can have on my lungs/heart. It is extremely frustrating and worrisome that I have this frequent urge to inhale deeply. I did read somewhere that it's normal for people to take in a deep breath every 5 minutes or so which is actually very healthy and important for the lungs. I have tried the different breathing methods and they don't really work long term for me. I also want to mention I was diagnosed with LPR by an ENT a year ago, my esophagus was enflamed and I felt like I was getting food stuck in my throat all the time. I went for a second opinion a few months later and there was no inflammation and I was told that a lot of dr's diagnose LPR when they are not sure what the problem really is. I guess that could be the cause but I really don't think it is. But like you, I've had lots of tests done and there was no obvious problem. I can do cardio (I have an airbike) for an hour and not even be out of breath. I still have to take in deep breaths, but less of them when I am working out. Let me know if you have any new information so we can get to the bottom of this!

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