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.

Gabe, Volunteer Mentor | @gabrielm | Apr 22, 2023

In reply to @fefemagee "Hi there, so I thought I was the only person in the world with SOB issues...." + (show)

I know how you feel @fefemagee. It's definitely very frustrating especially when doctors aren't familiar with chronic air hunger. Sounds like you've had pretty much all the tests done. Have you had any bloodwork done to determine any nutrient deficiencies or other possible problems?

It sounds counterintuitive, but after a while of me going through this many years ago, I determined that trying to get a deep breath all the time and sighing and yawning seemed to make the issue worse. I narrowed it down to chronic hyperventilation syndrome, where you're basically hyperventilating trying to get all this air.

The Buteyko Breathing Method taught me to really slow and reduce the volume of my breathing, which greatly helped with the air hunger and also assured me that I don't need to try to take deep breaths all the time. I would suggest looking to incorporate what you can of the method. There are many books by Patrick McKeown on the subject that are worth looking into.

Try resisting the urge to take a deep breath as much as you can. It's uncomfortable at first but over time your body should adjust and not trigger the need (even falsely) to take a large volume of air.

What kind of exercise do you do? Would you say you do intense exercise, or light?

Gabe, Volunteer Mentor | @gabrielm | Apr 22, 2023

In reply to @rovelaris21 "Hi! This may sound weird. I've had this going on for about 20 years now. I..." + (show)

Interesting @rovelaris21! Thank you sharing this. I've never heard of POTS, but doing a quick Google search I see that the principles are very similar to what the Buteyko method is. Very similar approach to treatment which focuses on ways to reduce and normalize the volume of air we breathe. Have you tried any of the methods as far as incorporating any of them to help your air hunger symptoms?

sarah66 | @sarah66 | Apr 22, 2023

In reply to @gabrielm "@sarah66, have you tried breathing exercises? Just slowing down my breathing and getting into the habit..." + (show)

No me funciona, simplemente si controlas la respiracion no estas respirando en automatico, la pregunta es por que tenemos ganas de suspirar a cada rato? esto no es normal tampoco es ansiedad, hay algo raro aquí, estoy en esta situacion por culpa de los medicos son unos incompetentes la medicina nos ha fallado

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Gabe, Volunteer Mentor | @gabrielm | Apr 22, 2023

In reply to @sat1677 "o m g this has been my life since 2018… no doctor can find anything and..." + (show)

Hi @sat1677, I'm glad you found others who are also experiencing this. I'm definitely sorry that you're going through it though. I know it feels like it's ruining things, but if I can offer hope, I believe there are many ways to cope with it and reduce the symptoms enough that you can live a pretty normal life. Have you done as many tests as you can at this point? Anything that any doctors are saying that it could be?

Gabe, Volunteer Mentor | @gabrielm | Apr 22, 2023

In reply to @sarah66 "No me funciona, simplemente si controlas la respiracion no estas respirando en automatico, la pregunta es..." + (show)

I hear you. It's frustrating to not know why we have the feeling of needing to sigh. Even if it's not anxiety, some anxiety coping strategies may also help with breathing. Controlling the breathing from time to time might lead to a permanent change in the breathing, much like getting the body to breathe using the diaphragm through controlled exercises will allow the body to take over automatically.

Does your air hunger keep you from doing many things in your day to day life?