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Mysterious shortness of breath: What has helped you?
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.
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@churlgurl, I'm sorry you've been dealing with this. Seems like you need to really have that looked at. Oxygen in the 80s is not normal. I wouldn't give up with your doctors though, you might have to push them a bit and advocate for yourself. Do you have plans for any follow ups especially regarding the low O2?
I have been actively seeking care for about 6 months. Most doctors I have seen just change the subject and avoid discussing tracheobronchomalacia. Maybe this is due to not being familiar with condition. Only my primary physician has tried to help. I’ve had other medical complications during this period. Most possible causes of the sudden onset of my current breathing difficulties have been ruled out.
Get your spine checked for narrowing between the discs… I had a pinched nerve which caused problems. No pain just breathing problems.
Try leaving the weight lifting out for a couple of weeks and see if you get improvement. Also, try less jogging and just stick to walking and see what happens. Strenuous exercise has something to do with oxidative stress which you could delve into. Polyphenols combat OS a bit but you need to research.
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1 ReactionUnfortunately many doctors avoid discussing things that may be out of their realm. In those cases, we sometimes have to be our own advocates. That's good that your primary doctor has tried to help. It definitely helps to have someone who will listen and direct you in the right direction. Have you looked into breathing remedies, like breathing exercises or meditation?
Hi gabe.
I had more blood tests, ecg and ct scan and nothing
I had a nasal endoscopy today which unfortunately I had to tap out as the pressure in my sinus was unbearable😑
Can you tell me more about the breathing my technique you are using please?
Hope you are doing well
Hi Alex. Good to hear from you. I'm glad the tests at least ruled some things out. Probably still frustrating that it didn't lead to anything definitive, but also good that these tests rule things out.
Was the sinus pressure something you've dealt with, or just due to the endoscopy? I too had an endoscopy done a while back, but they were able to numb my airways. Though I still did feel pressure, it wasn't unbearable. So I'm wondering if there's some sinus inflammation there. If so, that could lead to breathing issues.
So to answer your question about the breathing technique I'm using- it's the Buteyko Breathing Method. I believe you may have tried it out to no avail. But I just wanted to offer that if you decide to give it a second chance, the "true" way of doing it involves commitment, determination, and learning. When I treated it like a bandaid and just did to alleviate symptoms, that didn't do much for me at least long term, but when I applied the techniques diligently and throughout the day, that is what helped me.
I went through learnbuteykoonline.net, which is an organization based in the UK I believe, and they have practitioners that know the method as taught by Dr. Buteyko. There are other practitioners all around and books written about the method, but I wanted to learn as much of the full method as possible. So just something to consider.
When I first started learning, I would apply what I learned in class; that is- focusing on nasal breathing only, taping my mouth shut at night to avoid mouth breathing, light to moderate weight lifting using only nasal breathing, no extremely heavy cardio exercise, the "rescue" exercises, steps (while breath holding) exercise, measuring Control Pause, etc. So there's definitely a lot, but when all put together I believe there is some benefit there. It may or not my cure you per se (I hope it does!) but certainly would help in managing symptoms to where they may not be bothersome anymore. But as I said, learning the true method takes devotion and patience, as these things would need to be done throughout the day until your body becomes used to the new breathing habits.
This is such a frustrating issue, seems like thousands and thousands of people have it yet we don't even know what it is.
I have had it for 6yr, began after taking pristiq. Buteyoko method sort of helped. I was diagnosed with sleep apnea after a sleep study. Also diagnosed with gerd after reporting painful acid reflux at night that coincided with a my worst ever period of bad breathing. I finally committed to using cpap every night once I learned it would both help sleep apnea and gerd.I have been taking ppi and sleeping inclined for a few months now, but the improvement seems to be wearing off. Endoscopy a week ago turned up nothing.
I have also found that smoking weed or vaping seems to have profound effects. It often gives immediate releif for one or a few breaths, then leads to periods lasting hours or days of either better or worse symptoms. I have a feeling that it may be just related to the feelings in the lungs simulating nerves involved in feeling a full breath. But I am also afraid it has made things worse over the long term and currently most days I inhale nothing but air. I would like to know if it is safe to have some vape/weed on special occasions when I especially want to be okay or during the most severe episodes.
I know it is somewhat linked to stress and has caused an unbearable feedback loop at my job that led me to drain my savings to take an entire year off work. I would like to be hospitalized and studied by experts until my life can be fully recovered. The effort involved in breathing excersise is quite extreme for the overall meh results it gives me. I feel like I've had other good periods lasting weeks where I put barely any effort into breathing methods, and maybe I was just smoking the right kind of weed or somethng, but it never really lasted.
I hear you—this whole thing is incredibly frustrating, especially when so many people seem to struggle with it, yet no one can give us a clear answer. It sounds like you’ve been through a lot trying to figure this out, and I really respect how much effort you’ve put into managing it.
It’s interesting that your symptoms started after taking Pristiq. Have any doctors acknowledged a possible connection, or has it been more of a personal observation?
It also sounds like you’ve tackled this from multiple angles—sleep apnea, GERD, breathing exercises, and even experimenting with vaping/weed. I can understand the temptation to use something that gives even a moment of relief, but I totally get your concern about long-term effects. Have you noticed if certain strains or methods of use (like edibles vs. vaping) make a difference in whether it helps or worsens things?
Taking a year off work must have been a huge decision. Has it helped at all in terms of stress reduction and your symptoms, or has it been more of a mixed bag? I really wish there was a way for you (and all of us dealing with this) to get the kind of deep medical investigation that could finally connect the dots.
You’re not alone in this, and I’m really glad you shared your story. Hoping we can all piece this puzzle together one step at a time.
Thank you, yes my doctors seem to accept that pristiq was a sort of trigger for it to begin. The medication itself also came with "excessive yawning" listed as a side effect. My neurologist is ready to prescribe me a new serotonin drug to see if it affects the issue but I am not ready to try it right now, I think I need to exhaust other options first.
One personal theory is that yawning a lot formed some sort of dysfunctional neural circuit, where my body has decided that the releif from a yawn is necessary to deal with discomfort caused by other sources.
Vaping a menthol flavour seems like the best option for immediate releif with the least harmful results. Smoking fancy expensive weed from a dispensary has had the best lasting releif but still sometimes seems to hurt. Vaping weed at a low temperature feels like the safest option with a very thin vapor that provides some immediate releif. Dabbing extract has the most powerful effect with intense immediate releif but also I suspect has led to some pretty bad periods, depending on temperature, cleanliness, and the type of extract. Higher temperature mostly intensifies the effect. Having the nail not be completely clean seems to make things worse. And more full spectrum extracts like live resin seem to be more helpful than somethng like shatter or distillate. I haven't paid much attention to strain. My weed habits have been mostly just about getting high, as I don't really feel like I can justify it as a proper treatment for a breathing issue. I don't think edibles help at all, however I have an unusual high tolerance for edibles.
Taking time off work was a very mixed bag. It was very helpful in proving to myself that I still have some control of my life, and I don't have to make myself suffer extra when I am at my worst. But it was very much not a solution, and I am back at work now with flexible part time hours. Sleep was also a huge factor in this, as when I left this issue was affecting sleep the worst, while currently I have been able to get lots of full nights of effective sleep in a row.
Also, I owe it to claude.ai for learning about the connection/possible connection to GERD. When I get the chance I may feed some of the stories from this thread to it and see if there are any more insights.
I have more info posted here, as well as some simple tips/techniques that have helped me a ton.
Reddit user u/yawn_problem
Thank you and good luck to you too.