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 | Jan 12 9:51pm

In reply to @jenh1128 "No I’m not fully recovered. I first commented on this thread years ago. I’ve ruled out..." + (show)

I considered this surgery a few years ago, as my sinuses were also inflamed and still are to some degree. I'm sorry that this hasn't helped (at least yet). But maybe not being fully recovered means there's still a bit of hope that it could still help to some degree.

Since you first posted, has there been any improvement at all even intermittently and have you done any sort of breathing exercises?

Gabe, Volunteer Mentor | @gabrielm | Jan 12 10:02pm

In reply to @robertob62 "Hi Gabriel I stumbled on your post after more than three years doing research for the..." + (show)

@robertob62

Hi Gabriel

I stumbled on your post after more than three years doing research for the (exact) same issues you've described to the T!
In 2018 I suffered a pulmonary embolism that nearly took my life, and the root cause was attributed to a genetic blood clotting anomaly calmed Factor VIII. I later rebounded from this catastrophic even and within 8 months, I was back at the same athletic performance prior the PE, although I'll be taking blood thinners for the rest of my life as the factor VIII is a permanent condition. Please note that I've omitted to mention that I exercised and still do, 5 to 6 days per week and am in relatively excellent health otherwise. Back to the main issue, 12 months after the PE, I suffered a sudden onset of arterial fibrillation, for no apparent reason I was sitting at my desk at the office and my heart rate went from +/-45bpm to +/-130, started feeling faint, unwell, sweating, I was headed out of office for a meeting, but that never happened as my girlfriend called an ambulance and I was transported urgently at the hospital. There I was quickly checked by the ER personnel, immediately referred to a cardiologist specialising in electrophysiology of the heart, and recommended a transcatheter ablation. I quickly have consent and the intervention was done the morning after, completely restauring regular heart rhythm. Sadly, after taking note of my health history and lifestyle, the cardiologist attributed the sudden Afib to a constant over exertion of the heart, by constant intense training, apparently there's a link between excessive exercise workloads and sudden out progressive onset of Afib. Now, having said that, a month or so later I started to develop and I quote, (the exact same symptoms) you've described. At first the cardiologist suggested that there was a remote possibility that when they did the ablation using RF(radiofrequency), they may have caused some intra esophageal damage that may be causing the symptoms, needled to say I was alarmed that I would have to deal with this for the rest of my life. However, I was trying through a battery of tests, pulmonary function tests, stress test ECGs, transesophageal echocardiogram, asthma test, CO2 tests, basically the lot of available tests out there, and all turned out normal. I was followed for 3 years following the ablation and was referred to the same tests 12 months after the initial tests, also referred to a pneumologist and did methacholine test and some other pulmonary function tests and nothing, I was declared to be in perfect health. However, the pulmonologist did mention that he had one other case in the past that displayed the same symptoms we both had and it was attributed to a form of anxiety attributed to a traumatic experience, a form of PTSD if you'd like. I reject this assessment at the time, because I was never an anxious individual, I managed stress extremely well, the sports definitely gave me calm and good sleep, so I brushed it aside. The issues you described however, never ceased. Slowly over time, it was talking a psychological toll. In the past six months, I have been doing similar breathing exercises as you described, in order to retain my breathing, using the 4-4-4-4 method, breath in though nose for 4 seconds, hold breath for 4 seconds, exhale through mouth for 4 seconds, again hold for 4 seconds and repeat. Over time this has had some meaningful impact, not 100% but better move the less. I was recommended some antidepressants which I refused to take. I'm not fully convinced that this is an anxiety issue and a part of me still believes it's a physiological issue. I'm constantly doing research on this issue and won't give up. Any little improvement is an added bonus and any post similar to yours, tells me in not alone dealing with this, is a form of relief of sort.
So Gabriel, of there's anything else you come across that has improved your status, or if there's anyone else that lives with these similar issues, please post. Even if you think it's of no significance, as a community we may stumble upon something of importance that could lead to some answer and added well-being.

Thanks a bunch
Roberto

Jump to this post

Hi Roberto. I'm sorry you've dealt with so much, but glad you're at least doing ok and are recovering from your multiple ordeals. I hope you've gotten a chance to at least skim through as many pages of comments as possible form this thread. There are a lot, but many people have shared various possible solutions over the years. I'm glad the breathing exercise you're doing are having some impact. Seems it could indeed be helping and I would recommend maintaining a routine of doing those exercises daily and monitoring improvement. I think it also might help with any anxiety that may be a part of your symptoms- sometimes not being able to breathe can spur on a feeling of anxiety, which breathing exercises also help with.

It looks like your heart issues have contributed to a lot of your health issues, and possibly to the breathing symptoms. Do you think there might be a correlation there? You mentioned about tests coming back normal. I wonder if the heart issues have led to any blood flow issues that could impact blood oxygen and therefore breathing. I don't know if or how blood thinners would affect blood or oxygen flow, but you think there might be an issue of bloodflow and lack of oxygen being efficiently delivered throughout your body?

tahiristan | @tahiristan | Jan 13 11:57am

In reply to @tahiristan "It's helping me but I do everything self-guided. I disagree about it being a waste of..." + (show)

I should clarify, that you don't need to see an AT teacher but it can be helpful.
Regardless, as Gabe mentioned, the nice thing about this thread is that there are multiple possible solutions. There's no "one" solution but here, we can exchange different ideas and possibilities and allow people to choose a path that works for them!

yessir321 | @yessir321 | Jan 15 7:16pm

In reply to @jenh1128 "ENS?" + (show)

Empty nose syndrome. Causes terrible symptoms. I’m no expert in that though. Nose surgery I’ve heard is one of the worst decisions. But look that was just my impression online

yessir321 | @yessir321 | Jan 15 7:22pm

In reply to @tahiristan "It's helping me but I do everything self-guided. I disagree about it being a waste of..." + (show)

Look I paid for that LNB thing and i went through the different stages and it really disappointed me. I don’t remember specifics, but I do remember feeling very hard done by. But look it was a mistake on my journey to here.

As for the troll comment, you could not be further from the truth. I come back to this forum to help people. Because I was so close to losing it all, and I don’t want anyone suffering when I know how to get your life back on track with this awful feeling.

As I say again to those who deny it’s anxiety. Think of it as somatic/physical anxiety that’s come out of the blue, a false alarm that’s been ringing non stop for months/years. Only way to stop it ringing is by not caring that it’s ringing and live life fully.

yessir321 | @yessir321 | Jan 15 7:28pm

In reply to @codygirl "I think to an extent you may be right. My anxiety is not conscious, but could..." + (show)

Thank you. Remember it is a paradox rather than a quick fix. Don’t go oh it’s still here so it’s not anxiety. It’s about not caring anymore and bringing it with you as you live life fully. “You’ll never get better until you stop trying to get better”(referencing the symptoms).
The anxiety paradox on instagram, Shaan kassam on YouTube, Claire weekes book, at last a life-book.

When you look these up don’t go oh they didn’t mention breathing symptom. One common complaint is heart palpitations. Some suffer non stop for months with that. Nothing in there head but the fear and dread of their symptom returning. Symptom is not unique. So keep an open mind when you read about “Physical Anxiety” as it’s sometimes referenced as. Be patient. Trust the process. Go live fully again and enjoy yourself.

bjan | @bjan | Jan 21 8:50pm

I find that I have that symptom if the humidity is below 49% and above 60%.

jenh1128 | @jenh1128 | Jan 22 10:33am

In reply to @bjan "I find that I have that symptom if the humidity is below 49% and above 60%." + (show)

Interesting. I was in NJ all weekend and had very few “episodes”. I live in Florida so pretty humid all of the time.

marcuscurypko | @marcuscurypko | Feb 3 2:09pm

In reply to @gabrielm "Please do let me know how it goes and if there's anything I can do to..." + (show)

Hi Gabe,
I have now been doing Buteyko for a little over a month and my control pause is stable at 45-50 seconds, and there are times when it can be 50+. Unfortunately, the SOB remains. For how long did you practise Buteyko before you felt some change or improvement?
Having recently seen an ENT and been cleared, there is literally nowhere else to look for physical issues which means this must be mental / emotional. Whilst that's a relief, this SOB is still hugely frustrating and at time debilitating.

marcuscurypko | @marcuscurypko | Feb 3 2:18pm

In reply to @yessir321 "Thank you. Remember it is a paradox rather than a quick fix. Don’t go oh it’s..." + (show)

I now think it's likely that my SOB is anxiety related, but weirdly, I don't feel stressed or anxious. The onset occurred during a hugely stressful period of life and despite a lot of the stressors going away, the SOB has not. What's your advice for dealing with sub conscious anxiety?

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