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.

@tonyagregg

@gabrielm just an update. As of now my need to take a deep breath and yawning is gone. One doctor told me that it may be a tick and to resist the urge to take a deep breath especially when my oxygen levels are good and I have no major organs that is causing it. I thought at first that is silly, but I was desperate and decided to do it and it was hard at first not to do it, but it worked! As for now I am back to normal and pray it never comes back. I write not to boast, but to tell you what helped me and hopefully help others. Please keep me updated

Jump to this post

@tonyagregg Thank you for the update! I'm glad that your SOB has gone away, hopefully for good.

REPLY
@godislove

@gabrielm So here is my story, about 3 months ago I started feeling like I could not catch my breath. I went to the ER they thought it was my heart or my lungs, they did contrast Ct scan, and a nuclear stress test on my heart. All tests came back normal but still having issues with breathing, went to see my GI doctor because they wanted to do an endoscopy for suspected celiac, while he was scoping he said I have grade c esophagitis. He put me on 40 mg of omeprazole twice a day. This is about a month and a half of taking them with no relief of the SOB. I just had an appointment with my GI doctor told him my breathing still sucks, he told me the reason was silent reflux and to keep taking the meds and come see him in 6 months...At one point I felt I was getting better than suddenly I feel worse. I feel like I have to constantly clear my throat and that I have some type of congestion in my chest with not mucus or coughing. I am in desperate need of some type of relief as I feel I can't even work anymore without being out of breath. I have an appointment with the lung doctor next month and these appointments are so spread out. I have asthma but the inhaler is not responsive and does nothing to help the shortness of breath. Thanks for all the support here and this thread I have been watching it all the time for some type of help. I appreciate everyone here.

Jump to this post

@godislove Glad you're here. Read through the comments (I know there are a lot) and I think you'll be able to find some coping mechanisms to help you get through it until you find answers. Keep us posted on what the docs say please!

REPLY
@nycmom

This is an interesting concept. Did you just resist the urge to take a deep breath even though you wanted to and feel the SOB and eventually it became normal again? @tonyagregg- did you have a stressful event prior to the supposed "tick" of starting? I read about something else posted earlier about sighing dyspnea which sounds like it could overlap with an OCD related type of behavior. In sighing dyspnea, a stressful event/time usually precedes the episodes in which the patient suddenly feels as though they cannot breathe. It is not a panic attack. A panic attack is acute and as we know our SOB is not an acute event it is more chronic (As is the condition I am describing, sighing dyspnea). I wonder if somehow my CO2 levels are all out of whack because I have been been struggling to take deep breaths for over a month now.
I went on a run yesterday and my breathing was fine even though it was 86 degrees and humid. However, this morning and last night (as I was up 3 times in night nursing a baby) my breathing is bad again. In stillness I notice I have to take deep breaths that can't be satisfied. The fact that I am able to go on a run might signify that there is no physical pathology going on? Anyone else okay during exercise but not good at night or other times? I do also feel a tightness in my chest which confuses the issue for me--reinforcing my anxiety that in fact there is some (terrible) underlying disease. For reference, I am a 41 year old woman (full time working mom of three young kids...so sleep deprived and with plenty of stress to go around).

Jump to this post

@nycmom Back when the SOB first started back on 2012, I also did the best I could to resist taking a deep breath. This, combined with breathing exercises and only breathing through my nose, made the SOB go away for a good year. But for whatever reason it came back. So I think CO2 levels has something to do with it and for whatever reason, breathing gets out of sorts. Mine has been present consistently for a couple of years, but this time it persists no matter what I do, though I have been able to manage it to a tolerable level using breathing exercises. But I'm going to try to resist taking a deep breath as much as I can and maybe over time I'll get out of the habit of taking deep breaths even when I don't really need to.

REPLY
@srifkin

Hello Everyone, I am 52. I have had this same issue for about 16 months (air hunger; not being able to complete a full breath). It started about 3 months before I was diagnosed with Kidney Disease. Kidney disease is under control but breathing issue persists. I have been tested for just about everything as I am in a NIH study for my Kidney disorder. Docs or baffled. I do have slight anemia; this seems to be the one constant for me throughout this ordeal. I am having trouble getting back to my pre-kidney issue aerobic shape (e.g. I get winded from running quickly). This can be explained, in part, by the fact that the kidney disease took a toll but I feel like I should be making better progress and attribute my lack of fitness to the air hunger issue. This is frustrating and annoying, but does not limit my day to day. I feel generally good. I am clear headed and generally have good energy.

Any advice or thoughts are appreciated.

Thanks!

Jump to this post

@srifkin Welcome to the forum, and sorry you're going through this but you're in good company! I too had slight anemia when I was first checked for the SOB. I've always wondered if there was a connection. Though I have not had anemia the last few tests, I wonder if the affects of it remain in the form of SOB, but I'm not sure. There just seems to be a lot of us that have had anemia as well as GI issues, so what link there is there I'm not sure. But breathing exercises and trying to resist the urge to deep breathe seem to help a lot of us at least cope with it until we find answers.

REPLY
@tonyagregg

@nycmom yes I just resisted the urge to take a deep breath and it eventually went away. Although it was not easy I kept reminding myself I was getting the oxygen I needed. Not sure if you have read my story, but this feeling of my need to take a deep breath started back in November when I got a treadmill and started running. I was 43 at the time. As far as running I felt good doing so it would be later on that evening that i would feel the need to take a deep breath. I did not feel stressed out or worried about anything, so i dont know why it started. After many test to make sure it was no major organ causing this, I kept talking it over with a doctor friend of mine and he was the one thst mention a tick. I am a mother of 3 and maybe subconsciously I was stressed, but didnt realize it. To be honest before I decided to resist the urge I would sometimes get worked up trying to get that deep satisfying breath and it would make it worse. I am still running and every now and then I feel the urge to sigh or breath deep and I resist it and dont even worry about it anymore. I hope this helps.

Jump to this post

Hope I'm not bothering you with too many questions...I really appreciated your feedback. Do you recall how long your episodes of SOB lasted? Like was it a few months? or more like days? I'm going on over a month. Did. you find that your anxiety heightened significantly while you felt like you had to take a deep breath? I went on a run this morning and then did strength training. Only after that am I having a pretty bad day in terms of SOB. I am just so confused as to whether it is an underlying disease or truly a tick or some kind of psychosomatic event. Also, when my episodes get bad I notice a mild/moderate pain above my heart when I breathe in. I was checked out by a cardiologist and he said all was fine. I wonder if the constant deep breathing is exacerbating my lungs and causing irritation.

REPLY
@gabrielm

@nycmom Back when the SOB first started back on 2012, I also did the best I could to resist taking a deep breath. This, combined with breathing exercises and only breathing through my nose, made the SOB go away for a good year. But for whatever reason it came back. So I think CO2 levels has something to do with it and for whatever reason, breathing gets out of sorts. Mine has been present consistently for a couple of years, but this time it persists no matter what I do, though I have been able to manage it to a tolerable level using breathing exercises. But I'm going to try to resist taking a deep breath as much as I can and maybe over time I'll get out of the habit of taking deep breaths even when I don't really need to.

Jump to this post

@gabrielm -thanks for your feedback. Do you feel that there is ever any chest tightness when you have episodes? Were you able to exercise through it? If anything, exercise makes mine better. I'm not sure if that is a good sign or not.

REPLY
@nycmom

Hope I'm not bothering you with too many questions...I really appreciated your feedback. Do you recall how long your episodes of SOB lasted? Like was it a few months? or more like days? I'm going on over a month. Did. you find that your anxiety heightened significantly while you felt like you had to take a deep breath? I went on a run this morning and then did strength training. Only after that am I having a pretty bad day in terms of SOB. I am just so confused as to whether it is an underlying disease or truly a tick or some kind of psychosomatic event. Also, when my episodes get bad I notice a mild/moderate pain above my heart when I breathe in. I was checked out by a cardiologist and he said all was fine. I wonder if the constant deep breathing is exacerbating my lungs and causing irritation.

Jump to this post

Could be pleurisy if you are getting a sharp stabby pain.

REPLY
@helena4000

Could be pleurisy if you are getting a sharp stabby pain.

Jump to this post

Yes, that’s what they thought when I was in ER. But I have no cough or wheeze. Just SOB and occasional pain when I breathe in. I did have a sinus infection prior to this whole thing though. I wonder if there is a connection.

REPLY
@nycmom

@gabrielm -thanks for your feedback. Do you feel that there is ever any chest tightness when you have episodes? Were you able to exercise through it? If anything, exercise makes mine better. I'm not sure if that is a good sign or not.

Jump to this post

I haven't really felt chest tightness lately. I did feel the tightness back in 2013 when the SOB returned. But I haven't had that in a while. Previously, I was able to exercise just fine and not experience SOB. I would say when you exercise you are building up a lot of CO2 which is a good thing. I wouldn't go too crazy with the exercise. I would also try just breathing through your nose when you exercise and even when breathing normally throughout the day, to slowly build up CO2, which aids in getting more O2 (look up the Bohr effect).
And like @tonyagregg suggested, try resisting the urge to take a deep breath as much as possible. That's what made my SOB go away completely back in 2012.

REPLY

I'm going to go ahead and declare victory on this one. It has been a gut wrenching couple of months but I'm finally sleeping through the night and have resumed my normal activities. I used a variety of things (see my previous posts). My SOB started after a cold. I did have it during physical activity. And my iron level was slightly low. I also had sinus congestion.

For anyone seeking options, I think my issue was related to electrolytes since the ER stated my potassium was a little low. I incorporated more potassium rich foods, I started taking whole foods vitamin c, exercised and drank plenty of water. I noticed the SOB was worse when I was dehydrated (which throws off your electrolytes), and I think the final thing that made a difference was I started eating more salt. Whenever I felt it acting up I would make sure I added sea salt (Himalayan sea salt) to my meals since it's loaded with minerals and it would stop. Sodium should be balanced with potassium so don't eat too much salt without eating enough potassium rich foods.

Another thing that helped was focusing on alkalinity. If the body becomes too acidic from not eating enough fruits and vegetables, it can throw your body into survival mode (alkalosis) which will cause shortness of breath, weird C02 levels and a whole lot of bad things. If you deal with heartburn this could be your situation. Research the terms alkalosis and acidosis to learn more.

I switched to a whole foods multivitamin since conventional ones can be acidic.

I walk at a gentle pace since I read it can normalize C02 overtime.

I'm not sure what the connection is with those of us with low iron but I did research the work of Morley Robbins who states that there is a complex relationship between iron in the body and low iron tests could mean there's too much iron in the tissues and that creates an acidic body which will also cause SOB. A few of his recommendations resonated with me so I incorporated them and felt better right away ie, whole foods vitamin C.

Everyone's body is different. I decided to follow the route of improving my overall general health and would encourage anyone to try that first. I'd also encourage everyone to do their own research. The human body is very complex and sometimes doctors don't know or don't take the time and are quick to dismiss patient symptoms. SOB is a life altering symptom of a deeper issue. If it's related to anxiety...that can be traced back to diet, exercise, mineral status, stress management etc. If it's relate to GERD or silent reflux, again that's an issue with acidity and that can be balanced by a change in diet to include more alkalizing foods and minerals. Be determined to find a solution and get your life back. Prayers and best wishes to all of you. Thanks to all of you for your contribution to this board. We never know how many people will stumble across this board and find the solution to their problem here.

REPLY
Please sign in or register to post a reply.