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.

@merpreb

@grandma72- It does sound like an X-ray is a good idea now. What does your doctor say?

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My thoughts for X-ray was for others to explore as I am just 3 months out of my ACDF surgery for C5/6… I need to allow myself to finish therapy and give my body time to heal with hopes that the trying to get a breath resolves itself. I show minimal anterolesthesis at C4/5 in my latest post op X-ray. If I’m not better in 9 months, I will be asking questions for sure about that.

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@merpreb

@haleynicole1223- You certainly are having a difficult time. I have had dyspnea for a long time and am taking Omeprazole. My GI doctor suggested that when I have "breakthroughs" to take FD Guard. It's for recurring indigestion. It is caraway oil and l-menthol. It works for me. It is pricey but well worth it for me.

Another thing that I noticed is that you lift heavyweights. This can actually be a problem as the higher weight that you lift the more pressure you put on your body, asking it to perform, perhaps too much. Have you tried lifting less weight? Maybe going back to the weight that you were using prior to your dyspnea? Have you considered using less weight and increase the number of reps you do?

When you reduced the types of food that you stopped eating did you do it one food at a time? I'm worried that you might not be getting enough protein. Do you take any supplemental protein?

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I really haven’t started lifting more it’s been pretty steady for about 2 years now. It might be the combination of night shift and just lifting heavy in general that may be causing more stress than I was experiencing before. It was three weeks ago I switched to nights and prior to that I was on days for 3 months. Before switching to this job I actually worked nights for 3 years in the ICU (way more stressful of a job than I do now). Granted I do have stress being that I’m learning a new role. In terms of protein intake I have an app that gives me a set amount of grams to I take based on my weight and activity level. I may try to go “lighter” on weight but if it a hernia I am nervous that any weight will make me feel SOB.

I’m thinking that I should maybe get a chest X-ray to rule out PE and possibly a GI doc to rule out hiatal hernia. I know that some of it is probably anxiety but I don’t think it’s a symptom of anxiety, I think the anxiety comes from feeling like I can’t get a good breath.

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@gabrielm

@haleynicole1223 , it’s definitely worth a try to do the breathing exercises daily. As part of the method, I learned to breathe only through my nose most of the time and exercise while nose breathing. This helped me improve quite a bit in the beginning.

What sorts of tests have you had done so far, if any?

I too have been taking PPIs for a long time and even though it helps with the heartburn, it didn’t improve the breathing issue. But I have this inkling in the back of my head that GERD could still contribute because PPIs just deal with the heartburn symptom
and not the underlying problem. So I’m exploring dietary options and trying to improve gut health.

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I’ve also started looking into adult onset asthma, it’s actually pretty common. It’s interesting that the breathing methods work for you which is also a common breathing method for asthmatics. Also with being a night shifter, I am more at risk. You can also have acid reflux which causes asthma which could also be our issue with the GI problems many of us are facing.

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@haleynicole1223

I really haven’t started lifting more it’s been pretty steady for about 2 years now. It might be the combination of night shift and just lifting heavy in general that may be causing more stress than I was experiencing before. It was three weeks ago I switched to nights and prior to that I was on days for 3 months. Before switching to this job I actually worked nights for 3 years in the ICU (way more stressful of a job than I do now). Granted I do have stress being that I’m learning a new role. In terms of protein intake I have an app that gives me a set amount of grams to I take based on my weight and activity level. I may try to go “lighter” on weight but if it a hernia I am nervous that any weight will make me feel SOB.

I’m thinking that I should maybe get a chest X-ray to rule out PE and possibly a GI doc to rule out hiatal hernia. I know that some of it is probably anxiety but I don’t think it’s a symptom of anxiety, I think the anxiety comes from feeling like I can’t get a good breath.

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@haleynicole1223- If this were me I would definitely seek some medical expertise, get some tests done and see where they lead you. Who knows, it might help?

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@haleynicole1223

After reading this post I am curious if maybe it’s something I am eating as well. I do lift heavy at CrossFit and I’m curious if I’m more susceptible to a certain food. I don’t eat any type of nuts but the one thing I can think of that I consistently eat is peanut butter. Maybe I’ll try and cut it out for a week and see how I feel. I actually took a food intolerance test a while back for skin/breakout issues and since then I’ve cut out beef and tuna and my skin has completely cleared up. I know first hand how closely related skin and gut health is but seems like I am cutting out so many foods just to feel “normal” which is really stressful.

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I’ve wondered the same. Every day after my coffee and lactose free milk I would cough on
and off throughout the morning. I purchased Propolis Raw Honey Throat Spray, began using it and had immediate relief from the cough and reduced reflux.

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@gabrielm

Yes @tonyagregg, I'd like to keep in touch with you. Sounds like what you have is pretty similar to me. It's been much worse before, but it's stabled out. Still not gone by any means, but I can at least live with it. Let's stay in touch. Maybe we can tag team our research or let each other know if we find some kind of answers.

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Hi Gabe, thank you so much for sharing your story! I hope you are well. It helps me know that I am not the only one with the same condition. My breathing issue started 2 years ago. I feel this urge of constantly taking a deep breath, which 90% of the time it doesn’t work from the first try. I have visited all possible doctors, even psychotherapist. I took antidepressants as they were thinking this is anxiety. It didn’t help. I am doing breathing exercises which help from time to time but the problem comes back again. Sometimes i cry from frustration and anger because it disturbs me and just comes without a warning. I have excellent blood, lung and heart results, however they diagnosed me with a stress induced asthma which to me is wrong, as I don’t have any cough, wheezing and stuff like that. I dont have any allergies and i am very active person. Nevertheless, the breathing issue bothers me sometimes when I exercise (especially with cardio exercises), but sometimes it doesn’t occur at all. There are times when it’s more intense and times where is manageable. I have done also hormonal tests and everything there was also fine. I am about to try the inhalers to see if this would help but I doubt it, as I don’t even take any medications in general. What i have noticed is that sometimes if i eat a bit more or the urge of taking a deep breath was already there, then i feel my stomach bloated and the issue gets more intense. Anyway, I wanted to share with you and thank you for telling us your story. I gave up on checking and trying to find out what is wrong with me as even the doctors don’t know any longer…I am trying to find a way of how to learn to live with it. Keep us posted and stay strong!

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@kjuryit

Hi Gabe, thank you so much for sharing your story! I hope you are well. It helps me know that I am not the only one with the same condition. My breathing issue started 2 years ago. I feel this urge of constantly taking a deep breath, which 90% of the time it doesn’t work from the first try. I have visited all possible doctors, even psychotherapist. I took antidepressants as they were thinking this is anxiety. It didn’t help. I am doing breathing exercises which help from time to time but the problem comes back again. Sometimes i cry from frustration and anger because it disturbs me and just comes without a warning. I have excellent blood, lung and heart results, however they diagnosed me with a stress induced asthma which to me is wrong, as I don’t have any cough, wheezing and stuff like that. I dont have any allergies and i am very active person. Nevertheless, the breathing issue bothers me sometimes when I exercise (especially with cardio exercises), but sometimes it doesn’t occur at all. There are times when it’s more intense and times where is manageable. I have done also hormonal tests and everything there was also fine. I am about to try the inhalers to see if this would help but I doubt it, as I don’t even take any medications in general. What i have noticed is that sometimes if i eat a bit more or the urge of taking a deep breath was already there, then i feel my stomach bloated and the issue gets more intense. Anyway, I wanted to share with you and thank you for telling us your story. I gave up on checking and trying to find out what is wrong with me as even the doctors don’t know any longer…I am trying to find a way of how to learn to live with it. Keep us posted and stay strong!

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Hi @kjuryit. Thank you for posting and sharing your story. I’m sorry you’ve been dealing with this. Sounds very similar to me. If I can give you any hope, being persistent in breathing exercises and trying to find answers does help or become manageable over the long term. I was like you where it was quite up and down but over the past few years it’s been more stable. What sorts of breathing exercises do you do? How intense is your regular exercise when you’re able to do it?

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@gabrielm

Hi @kjuryit. Thank you for posting and sharing your story. I’m sorry you’ve been dealing with this. Sounds very similar to me. If I can give you any hope, being persistent in breathing exercises and trying to find answers does help or become manageable over the long term. I was like you where it was quite up and down but over the past few years it’s been more stable. What sorts of breathing exercises do you do? How intense is your regular exercise when you’re able to do it?

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Hi @gabrielm! Thanks for getting back to me. I was told by the doctors to use breathing techniques such as breathing with your “stomach” like the singers. You basically have to inhale and expand your stomach by counting till 4 and exhale through your mouth by counting till 6. This is actually the right way for people to breathe, not with the chest. Also, i was told to do meditation to relax the upper muscles in order to calm the breathing. If i do intense cardio exercises when i am able, i have managed to track my heart rate which can go up between 150-190. It is good to test your heart from time to time. However, i am thinking of making an appointment for MRI and maybe also visit gastroenterologist just to exclude any issues perhaps related to parasites. I would like to check also if maybe something is not right with the diaphragm. I wanted to ask you if you have your issue when you are sleeping? Also, did they tell you any specific diagnosis? Did they call your breathing issue dyspnea? The only thing in my blood test results that i have is a slight increase of my white blood cells( the norm is about 5% and mine are 6%). Did they also run some blood tests on you? Greetings from Austria

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@kjuryit

Hi @gabrielm! Thanks for getting back to me. I was told by the doctors to use breathing techniques such as breathing with your “stomach” like the singers. You basically have to inhale and expand your stomach by counting till 4 and exhale through your mouth by counting till 6. This is actually the right way for people to breathe, not with the chest. Also, i was told to do meditation to relax the upper muscles in order to calm the breathing. If i do intense cardio exercises when i am able, i have managed to track my heart rate which can go up between 150-190. It is good to test your heart from time to time. However, i am thinking of making an appointment for MRI and maybe also visit gastroenterologist just to exclude any issues perhaps related to parasites. I would like to check also if maybe something is not right with the diaphragm. I wanted to ask you if you have your issue when you are sleeping? Also, did they tell you any specific diagnosis? Did they call your breathing issue dyspnea? The only thing in my blood test results that i have is a slight increase of my white blood cells( the norm is about 5% and mine are 6%). Did they also run some blood tests on you? Greetings from Austria

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@kjuryit, I had to reduce my cardio exercise and focus on lifting weights. This has actually helped my breathing. I control my breathing while exercising and don’t overdo it. Same thing with running; I go for light runs every so often and but I don’t push myself and I think this also helps my breathing. I once over did it with running and made the dyspnea worse. I agree with you that we’re really supposed to breathe with our our bellies and not the chest. I’ve had to learn how to do that.

I’ve gotten blood tests over the year which are mostly normal and nothing that doctors could correlate to breathing problems.

When it first started, I didn’t have any issues sleeping. I didn’t notice the issue when sleeping but now these days my sleep can be interrupted by my breathing if I’m particularly stuffy, which is something I also deal with. If my sinuses are somewhat clear, I am able to sleep better.

How about you? Does it affect your sleep?

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@gabrielm Were you tested for h-pylori? I had the exact same breathing problem for years! Had low hemocrit for years, elevated A1C levels to the level of being diabetic and couldn't climb a flight of stairs without being out of breath. Had an endoscopy with biopsies. H-pylori treated with high dose antibiotics. Breathing issues resolved. Low hematocrit resolved and A1C returned to better than normal.
H-pylori blocks your body from absorbing red blood cells and other nutrients. So, once the h-pylori was treated, the body is able to absorb the red blood cells which then allows more oxygen in your system and my breathing issue resolved. I hope your issue is that simple too. Just took 20 years to figure out.

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