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.

Have they tried a Holter Monitor on you for a week. This will probably give them a good reading of your breathing problem, and help them make a diagnosis.
Gina5009

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@dampiera

I haven’t. Not since my inhaler stopped working several years ago. It disappears for a few weeks to a couple of months, then returns for anywhere between a few hours and a week. I am going to see an ENT doctor to find out if there is any damage to my esophagus that would point to “silent reflux”. I’ve been taking Omeprazole but it isn’t helping really.

I’ve never spoken with anyone who has had similar symptoms and I’m so excited to have found even one person who can relate to it, let alone several!

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I'm also happy you found others who have gone through what you're experiencing. It always helps when you discover others who have been through similar circumstances. It's definitely tough having these symptoms but I'm also glad that you can have longer stretches of normal breathing. I'm wondering if there's something dietary that serves as a trigger that sets off a cascade of symptoms leading to air hunger. Many others on here I know struggle with symptoms on a consistent and even daily basis. Definitely good that yours is not daily!

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@gina5009

Have they tried a Holter Monitor on you for a week. This will probably give them a good reading of your breathing problem, and help them make a diagnosis.
Gina5009

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Interesting! I haven't heard of this monitor. Usually most people are familiar with a standard EKG at the doctor's office, but this is definitely an interesting test. Kind of like a sleep study where you're hooked up to a monitor aways from a doctor's office. These tests are good for catching any abnormalities away from a doctor's office where symptoms don't always occur. Thanks for sharing!

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@gabrielm

I'm also happy you found others who have gone through what you're experiencing. It always helps when you discover others who have been through similar circumstances. It's definitely tough having these symptoms but I'm also glad that you can have longer stretches of normal breathing. I'm wondering if there's something dietary that serves as a trigger that sets off a cascade of symptoms leading to air hunger. Many others on here I know struggle with symptoms on a consistent and even daily basis. Definitely good that yours is not daily!

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I am VERY fortunate, yes. Just as things could always be better they can also always be worse.

I’m exploring dietary changes, starting with cutting out dairy. I’m also going to look into the alternative for a CPAP (Inspire). I don’t mind using the CPAP at all, but I do believe that it is causing issues with my esophageal sphincter.

Since this began 30 years ago but has steadily worsened in the last few years I think that diet would only be a factor if something has changed physiologically. I’m betting on either a hernia or reflux. It’s a direction, though. I didn’t even have that until finding this forum, so thank you so much for sharing your experience!

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@gabrielm

Interesting! I haven't heard of this monitor. Usually most people are familiar with a standard EKG at the doctor's office, but this is definitely an interesting test. Kind of like a sleep study where you're hooked up to a monitor aways from a doctor's office. These tests are good for catching any abnormalities away from a doctor's office where symptoms don't always occur. Thanks for sharing!

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I had a holter monitor hooked up to me for a day, some years ago. Based on what I now know about my test results my mistake at the time was to rest every time I started becoming out of breath. It turns out that when I don't stop to have a rest my heart rate just keeps rising to dangerous levels. Resting seemed to keep my heart rate in a normal range so the test failed to prove anything at the time.

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Has anyone looked into Mullein Leaf?? Traditionally, has been used to help relax the inflammation in the bronchioles. Even as far back as ancient Greece, there are indications that it was used to treat respiratory conditions. Like many on this thread, I suffer from constant air hunger, sigh breath, yawning efforts to take a deep breath. Once again, I had a CT scan of the chest come back completely normal. PFT's at Johns Hopkins have ruled out any possibility for obstructive and/or restrictive lung disease. I've been cleared by Cardiology. They're interested in looking at allergic asthma. My next step is to get allergy tested. Long story short, an associate overheard a conversation I was having about asthma and familiarized me with the Mullein Leaf supplement. He said that he's suffered from asthma his entire life and would NEVER leave the house without his inhaler and used multiple times throughout the day, every day. Since taking the supplement he hasn't used his inhaler in 5 months. He's lost weight, the air hunger has become totally unnoticeable, has more energy and his body feels better. Apparently, Mullein Leaf has a beneficial effect on inflammation. Of course, I ordered it immediately as I'm willing to try anything to help resolve this. It was at my front door this morning. I started taking it this morning. We'll see. Give it a few days to a week.

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@gabrielm

Interesting! I haven't heard of this monitor. Usually most people are familiar with a standard EKG at the doctor's office, but this is definitely an interesting test. Kind of like a sleep study where you're hooked up to a monitor aways from a doctor's office. These tests are good for catching any abnormalities away from a doctor's office where symptoms don't always occur. Thanks for sharing!

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They even have one you can wear at home in bed at night.
Gina5009

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I am going through something amazingly similar. The inability to take a deep breath. Forcing a yawn- when I even can. It was on and off for a while and I thought it was GERD and I went on Prevacid and a million other gerd medications for 2 years. At first I thought I had solved it. But then it came back. I have been to a million doctors who first said, yeah it could be GERD but then said no, doesn’t really sound like GERD as I have no other gerd symptoms. Thought it was post nasal drip but now I’m on an antihistamine and 2 nasal sprays and while the post nasal drip is much better, the SOB is about the same. I have been to my primary care doctor, cardiologist, 2 ENTs, 2 allergists, psychiatrist, and chiropractor. The main answer I have gotten is “it’s anxiety.” Well I do have anxiety but I’m on medication for it and the breathing issue does not seem to be timed to my anxiety and and often times the breathing issue IS the cause of the anxiety. This problem occurs intermittently all day long and also when I’m sleeping at night. I don’t notice it when I’m distracted, exercising and talking seem to improve it. I find it’s easier to breathe when I’m leaning slightly forward. But it’s a real thing, I’m not making it up. I’m worried it’s impacting my health in some way. And everyone I know is tired of hearing about it and writing it off to my hypochondria. But I need some help. Has anyone solved this?

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@arikalisanne

I am going through something amazingly similar. The inability to take a deep breath. Forcing a yawn- when I even can. It was on and off for a while and I thought it was GERD and I went on Prevacid and a million other gerd medications for 2 years. At first I thought I had solved it. But then it came back. I have been to a million doctors who first said, yeah it could be GERD but then said no, doesn’t really sound like GERD as I have no other gerd symptoms. Thought it was post nasal drip but now I’m on an antihistamine and 2 nasal sprays and while the post nasal drip is much better, the SOB is about the same. I have been to my primary care doctor, cardiologist, 2 ENTs, 2 allergists, psychiatrist, and chiropractor. The main answer I have gotten is “it’s anxiety.” Well I do have anxiety but I’m on medication for it and the breathing issue does not seem to be timed to my anxiety and and often times the breathing issue IS the cause of the anxiety. This problem occurs intermittently all day long and also when I’m sleeping at night. I don’t notice it when I’m distracted, exercising and talking seem to improve it. I find it’s easier to breathe when I’m leaning slightly forward. But it’s a real thing, I’m not making it up. I’m worried it’s impacting my health in some way. And everyone I know is tired of hearing about it and writing it off to my hypochondria. But I need some help. Has anyone solved this?

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I was put on Zoloft for depression. The Zoloft got rid of the inability to get a deep breath. I, too, was constantly hungering for air, forcing a yawn, just couldn’t get a deep breath. The Zoloft helped for years then suddenly quit working. I went off the Zoloft and was put on Lexapro but the Lexapro didn’t help. A couple of weeks ago I started back on the Zoloft and I’m doing much better. I don’t know if this will help you but it is certainly helping me. Hope you can find some relief soon as this disorder is terrible and definitely took away my quality of life.

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I tried Zoloft and lexapro - not for this specific issue but for anxiety in general and both made everything worse - turns out I can’t do SSRIs. I’m on an anxiolytic called Buspar right now but I’m worried it’s losing its effectiveness. But it is helpful to know that solving that piece worked for you. Thank you.

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