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 7 12:45pm

In reply to @jenh1128 "Has anyone tried endoscopic sinus surgery? I am 8 weeks out of surgery and still not..." + (show)

Hi @jenh1128, are you considered fully recovered from the surgery? Do you feel any relief at all with regard to your sinus issues? Sinus inflammation could be one piece of the puzzle and there may be other issues/causes.

yessir321 | @yessir321 | Jan 9 7:15pm

In reply to @jenh1128 "Has anyone tried endoscopic sinus surgery? I am 8 weeks out of surgery and still not..." + (show)

I’m no expert. But can that cause ENS. Do your research. ENS is terrifying.

yessir321 | @yessir321 | Jan 9 7:32pm

In reply to @codygirl "Hi team I am kind of relieved to have found this thread because I thought I..." + (show)

You say it’s not anxiety with such confidence. So did us all who recovered from this. Idk how to convince people that it is. Because unfortunately there’s not this be calm no symptom relationship. You feel it 24/7. It’s atrocious. I get why you say it’s not anxiety. You look for something to credit when it’s not there and something to blame when it is. Was it the amount of water I drank, the position I sat, the food I ate etc. It is random, it had no correlation to anything in your day.

TO ANYONE WHO DOESNT THINK ITS ANXIETY WHEN SIGNS POINT THAT WAY, think about it this way. Mental anxiety do you think people get that after stressful events, or don’t some people get it just speaking to a new person, crossing the road, cooking a meal. These people aren’t much different to normal people. They feel fear and try to fix it try to avoid it try to reason with it. In the same way physical anxiety came in the form of a feeling, a very uncomfortable feeling. And you all who have this breathing, tried to fix, tried to figure out, tried to avoid feeling etc. this is why you still feel it. If you just let it be and live life. Your body/brain forgets about it. It’s not important to you means it’s not important to it.

I’m not a therapist or doctor.
This advice is for people with false shortness of breath who’ve been cleared for lungs/heart etc.

I wish you all knew how bad I was, that I’m not a different case. I couldn’t leave house for 6 months I felt like I was suffocating every minute basically. I hope someone else takes my advice, the hypochondriac health gaslighting scares me. Listen to your general doctor who has nothing to gain from expensive procedures done by consultants. Be wary of consultants just taking your money by telling you what you want to hear.

jenh1128 | @jenh1128 | Jan 9 11:20pm

In reply to @gabrielm "Hi @jenh1128, are you considered fully recovered from the surgery? Do you feel any relief at..." + (show)

No I’m not fully recovered. I first commented on this thread years ago. I’ve ruled out gastro, allergies, heart, lungs, chiropractic, and mental health. I really thought this was the answer.

jenh1128 | @jenh1128 | Jan 9 11:21pm

In reply to @yessir321 "I’m no expert. But can that cause ENS. Do your research. ENS is terrifying." + (show)

ENS?

robertob62 | @robertob62 | Jan 10 7:14am

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

codygirl | @codygirl | Jan 10 3:12pm

In reply to @yessir321 "You say it’s not anxiety with such confidence. So did us all who recovered from this...." + (show)

I think to an extent you may be right. My anxiety is not conscious, but could be somatic. I am exploring this as an option…

grandma72 | @grandma72 | Jan 11 8:46am

Please have your spine checked for any herniated discs possible pinched nerves as I had a breathing problem ( shortness of breath upon minimal exertion ) that was finally relieved by having a spacer put in at C5/6. I also had this other breathing problem as we all described here and it was worse after surgery then better but seems to kick in depending on position in bed or chair.
Good luck to Amy who explore the spine and please let us know. I’m 74 and not sure I want another surgery but I don’t want to live like this when the breathing problem hits (as you all know) it is horrible … it may get one feeling anxious about it but doesn’t cause mine.

tahiristan | @tahiristan | Jan 12 5:41pm

In reply to @yessir321 "I did. I laugh to myself I wasted such money. If you read my other posts..." + (show)

@yessir321

I did. I laugh to myself I wasted such money. If you read my other posts you’ll see what I did. It was anxiety. Doesn’t matter how you don’t have anxious thoughts or issues on your mind. Somehow or another this feeling is happening and the only reason it continues to happen and happens with such misery and strength. Is because you treat it importantly. And of course you would it felt like you couldn’t breath properly and that threatened your existence. But once you get the all clear from doctors for your health. I didn’t believe mine when they said it was anxiety. The people who have recovered fully do now or they might call it somatic disorder or some other variation they accept. But the way to freedom. Do nothing. How? How can this be the solution? Well each and everyone of these people with clean bills of health from their doctors have tried to breath through stomach breathe less box breath, eat differently take this vitamin that vitamin etc etc etc. And did it go away forever no. Maybe a few minutes, a glorious hour/hours. But the only significant time it’ll go away before you accept it is when you forgot about it, when life got much more important. When something was so interesting in life you didn’t care if you felt like you were suffocating. People make the mistake of then trying to talk to someone so they don’t feel it, read something so they don’t feel it, no no no. So when you go onto lnb or whatever that thing is called, you may spend few minutes or while doing it and going did that make my breathing issue go? And it never truly will. Doing something to get rid of something that isn’t really there just tells your body there is something there that we are in danger. So it’ll look again and again and it will find that uncomfortable feeling everytime. Let me cut to the chase, how did I and others recover from pseudo dyspnea(false shortness of breath). I’ll put it into many terms. 1) Do nothing about the anxiety the more you try to fix the more of a problem it is. 2) you will never get better until you stop trying to get better. Similar, trying to rid makes you body look for it. 3) engage fully in life. Your life is for the living right here right now. Engaging in life is an active process, acceptance of this feeling is passive, you don’t do anything per say. 4) float rather than swim with how you feel. Most anxiety sufferers struggle they fight and it gets them no where as you all must know you’ve been struggling for years some. But if you just let it be, feel what you feel you’ll be suprised that nothing bad will happen. 5) don’t accept anxiety to try rid yourself of symptoms. Accept anxiety so you can live your life fully again. Your life is the prize. It’s waiting for you to live it fully again. It is the goal. Not no symptom anymore don’t make that your goal focus on life goals.6) show no importance to anxiety and all importance on life. 7) don’t care. Hard to do but simple. Don’t let it make decisions for you. Show it who’s in charge. Perhaps someone doesn’t want to go somewhere or be somewhere cause of this anxiety symptom well then do that thing. Take you symptoms by the hand and lead it into your life again it’s the only way your brain sees huh there’s no threat I’ll stop sending this throbbing signal now.

Jump to this post

It's helping me but I do everything self-guided. I disagree about it being a waste of money but to each their own. I also feel like @yessir321, the way you articulate your thoughts makes you seem like a troll. Regardless, I think there is importance in what you're saying, about not letting your anxiety control your life. Ironically, that's exactly what LNB teaches you to do. Though I disagree with doing nothing. That did work for me for a while but then it came back in full force. To each their own.

Personally, I think LNB is amazing and I think it can be used as a platform for changing the habits of breathing tension. Simon and Amira do amazing work and they put more effort into the course than what you're paying. They could easily be charging a lot more. With their course, you don't really need to see an AT teacher because that can be expensive.

tahiristan | @tahiristan | Jan 12 5:45pm

In reply to @jasullivan3 "Thank you so much for posting this. I would also love to read your article." + (show)

I will think of how to share it! It's just on a Word document. Simon also has a very in-depth article about his journey as well.

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