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.

@aloninc

I also believe I may have developed allergies. I need to blow my nose every morning after waking up to clear the nose.

How do you manage your allergies?

Breathing from my nose is not difficult but I would say performance has diminished since this mystery began!

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So I did flonase for a while, and at one point was doing flonase and Azelastine together. But now I pretty much just do a saline rinse every morning and night with a Neilmed bottle and saline solution. That helps keep the sinuses clear, though it's not perfect because I still get inflammation. But I do notice that as my sinuses flare up, so too does my breathing. It becomes more difficult, but when my sinuses are clear, I don't notice the air hunger nearly as much. I would still try to breathe through your nose as much as reasonably possible, and also with your diaphragm as much as possible and not so much the chest.

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@gabrielm

On one hand, you almost want a test to discover something wrong with your breathing so that it can be fixed, but on the other hand, it's good to also know that you're health according to the tests. Catch 22!

I wonder if you've developed allergies around the time of covid. I developed some sinus inflammation a few years ago that may be due to allergies but have also been managing that. Do you feel like it's pretty difficult to breathe normally through your nose? I've noticed that when I get sinus flare ups, it definitely increases the feeling of air hunger and gives me a hard time trying to breathe normally.

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I also believe I may have developed allergies. I need to blow my nose every morning after waking up to clear the nose.

How do you manage your allergies?

Breathing from my nose is not difficult but I would say performance has diminished since this mystery began!

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@aloninc

@gabrielm I performed lung function, asthma, cardiology, blood tests, scans etc. All was normal. Other symptoms that I seem to have include increased sneezing and increased congestion since I got covid several months ago.

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On one hand, you almost want a test to discover something wrong with your breathing so that it can be fixed, but on the other hand, it's good to also know that you're health according to the tests. Catch 22!

I wonder if you've developed allergies around the time of covid. I developed some sinus inflammation a few years ago that may be due to allergies but have also been managing that. Do you feel like it's pretty difficult to breathe normally through your nose? I've noticed that when I get sinus flare ups, it definitely increases the feeling of air hunger and gives me a hard time trying to breathe normally.

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@grandma72

Has anyone had their spine checked out for pinched nerve? I spent 9 1/2 years short of breath upon minimal exertion until I had other symptoms develop ( off balance with a numb left thumb) it was found that I had a herniated disc. I had anterior cervical discectomy with fusion at C5/6 which relieved all symptoms. Before the surgery, I could barely take two steps and was panting … after the surgery I went straight up 72 steps !
However, I had also developed this ‘trying to catch a breath’ sensation the last year before the surgery like everyone posting here on this site and it wasn’t relieved and I’m just wondering now if perhaps this other breathing problem might be a pinched nerve at C4/5 ? I’m waiting til I’m completely healed to see if perhaps I’ll be all better from both problems as it’s only been 7 months and nerve endings take time to heal. It’s just a thought and one that’s easy to explore. I had so many work ups that were invasive for 9 1/2 years at three major hospitals and around our area with no one being able to figure out why I was short of breath with minimal exertion. My husband asked a doctor finally if he could do an X-ray of my spine which showed a herniated disc … and it was a pinched nerve. Good luck. Keep us posted!

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@grandma72 I'm glad surgeons were able to help you with your herniated disc! Let us know if it improves further when it's completely healed. Definitely interested to see how the surgery helps your breathing issue in the long term.

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@gabrielm

@aloninc, were you able to get tests done from the various doctors you saw? I assume results were normal, but were there any results that stood out to the docs? I remember early on that shortness of breath was a symptom of Covid in a lot of people. I didn't hear much about that symptom after the first few months of it. So not sure if was a main symptom anymore. But maybe you got a stronger form of it since with your timeline, that seemed pretty early in the Covid days. Are there any other symptoms you've developed since then besides the breathing issue?

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@gabrielm I performed lung function, asthma, cardiology, blood tests, scans etc. All was normal. Other symptoms that I seem to have include increased sneezing and increased congestion since I got covid several months ago.

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@arandompenguin

Hello @gabrielm,

I've been suffering from this for almost two years now that it got me into OCD and depressive state. I suffer a lot from stomach issues with it and my diaphragm is always tight and my body automatically gasps and yawns. It always get worse when I first wake up, I wake up with a very tight chest and messed up mood but during the evening and night it gets better. I'm not sure if this is related to sleeping or allergies. Almost everything was good when I done the test. Though, I had H.Pylori when they checked my gut and I have tested negative from it last two months. I still suffer from the symptoms now still and anxiety is literally increasing for no reason. Every day I feel like the restart button is being pressed and I go through the activities Anxiety again (even though I literally just done the activities the day before). I was also diagnosed with OCD and Anxiety and I take sertraline for about a year now. When I walk a lot or head to the gym the symptoms get worse at the beginning but eventually get better and again the next day the reset happens. I really don't know if this is gluten or dairy related or if it's really related to the stomach and whether Anxiety causes the stomach disturbance or the other way around.

Sometimes it just makes me hopeless because I really don't know what to do, I'm starting to do Buteyko method and hopefully it'll help. But since you've been through this longer please tell me how did you get through it and how you're feeling now. And if anyone that recovered is reading this please don't hesitate to tag me, I would like to know how to get off this dark hole.

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@arandompenguin, I'm so sorry you are going through all this. Trust me, I know exactly how you feel! When it first started for me, I was in a similar dark place. I would like to offer a ray of hope that if you pursue methods of dealing with this situation, you WILL get through it until you find a solid answer. I know how it is about the anxiety. I too felt a lot of anxiety over this and even had a couple of panic attacks early on when I was really struggling with the symptoms. A few years ago, the problem seemed to have disappeared, came back, disappeared again, and came back once more but this time it wasn't as bad as when it first came about.

The fact that it gets better at night is a good thing. Hold on to that feeling and knowledge especially in the morning when it's worse. You have to tell yourself in your mind that you will overcome this and it will get better. Training your mind to believe this is, I think, a big factor in dealing with it for however long you have it.

When you are exercising, how intensely are you doing it? Part of the Buteyko method has you handle as much exercise as you can while only breathing through your nose. If you have to breathe through your mouth, it's too intense. This has helped me greatly. Moderate weight lifting while nasal breathing and controlling the breath is a large part of my "maintenance" routine and keeping symptoms at bay.

Do you have any GI issues- heartburn/reflux, intestinal issues, esophageal inflammation, etc.? Do you feel any restriction in your esophagus when breathing?

If you can, sign up for a class here for the Buteyko method;
https://www.learnbuteykoonline.net. This is where I learned pretty much everything I know. You will also learn 'rescue' exercises where you do breath-holding techniques while you're experiencing symptoms and then calming your breathing as much as possible. I know there's far more information, but hopefully these things will help you in the meantime. Let me know any other questions you have, happy to help. You WILL get through this!

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A new way of having breathing problems; thanks

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Has anyone had their spine checked out for pinched nerve? I spent 9 1/2 years short of breath upon minimal exertion until I had other symptoms develop ( off balance with a numb left thumb) it was found that I had a herniated disc. I had anterior cervical discectomy with fusion at C5/6 which relieved all symptoms. Before the surgery, I could barely take two steps and was panting … after the surgery I went straight up 72 steps !
However, I had also developed this ‘trying to catch a breath’ sensation the last year before the surgery like everyone posting here on this site and it wasn’t relieved and I’m just wondering now if perhaps this other breathing problem might be a pinched nerve at C4/5 ? I’m waiting til I’m completely healed to see if perhaps I’ll be all better from both problems as it’s only been 7 months and nerve endings take time to heal. It’s just a thought and one that’s easy to explore. I had so many work ups that were invasive for 9 1/2 years at three major hospitals and around our area with no one being able to figure out why I was short of breath with minimal exertion. My husband asked a doctor finally if he could do an X-ray of my spine which showed a herniated disc … and it was a pinched nerve. Good luck. Keep us posted!

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@kka

Just wanted to give an update on my situation. As I mentioned earlier, I had covid around Jan of this year. Since then I've been experiencing the air hunger feeling. All of my test results have come back normal. In fact, I'm pretty sure that this condition is not lung related since I can workout, run, and otherwise perform normally. My doctor believed it could be related to acid reflux triggered by covid. I tried omeprazole for one month and it helped a little bit, but I gave up on it believing that it couldn't be acid reflux since I had no other symptoms. I also tried anxiety medications and inhalers with no improvement. Then one day out of the blue, I was sitting at my desk and I started feeling acid coming up into my mouth. I called my doctor and he prescribed me pantoprazole. I've been taking pantoprazole now for almost a month and I feel it has improved my condition about 90%. Definitely much more improvement than from omeprazole. It took some time to feel the difference. It wasn't an overnight thing but rather a slow healing. I also gave up drinking coffee, soda and eating late dinners. If I take a deep breath I still don't feel it's always full 100% of the time. However, the nagging air hunger feeling is completely gone. I think there's definitely a connection with acid reflux since it can be triggered and worsened by illness, anxiety, diet, etc. Once the cycle starts, it's hard to break it. I'm planning to stay on the pantoprazole and will post another update in a month.

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@kka, wonderful to hear that you found something that greatly helps! It's always great to hear when people find improvement with their symptoms and ways to manage them. It's interesting what you bring up because I have always had a hunch that there might be a connection with this breathing issue and GERD or acute acid reflux. I, too, take omeperazole and have been taking it for quite some time, and every now and then I feel a little burning in the upper esophagus as if there's "breakthrough" reflux every once in a while. You have definitely give me something to think about- possibly switching to pantoprazole. I think it also gives others something to think about who suffer with GI issues. It's worth a shot to try a different medication. Thank you for sharing!

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@aloninc

February 2019 I got extremely sick with either Covid or h1n1.. steered about month after that (March 2019). Symptoms have worsened.

I have spent hours reading all of the comments. I’ve seen all kinds of doctors and no one has the answer. I’m convinced that managing and hopefully resolving this horrible condition will come with the help of people like you and the various individuals whom we share these symptoms with.

I will continue to research and outreach other groups and hope that if anything comes up, you’ll have me in mind. I wake up every night because of lack of air. My days are extremely tough, but I’m hanging in.

I will also begin the breathing exercises mentioned.

I pray!

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@aloninc, were you able to get tests done from the various doctors you saw? I assume results were normal, but were there any results that stood out to the docs? I remember early on that shortness of breath was a symptom of Covid in a lot of people. I didn't hear much about that symptom after the first few months of it. So not sure if was a main symptom anymore. But maybe you got a stronger form of it since with your timeline, that seemed pretty early in the Covid days. Are there any other symptoms you've developed since then besides the breathing issue?

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