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Mysterious shortness of breath: What has helped you?
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.
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Hi @lizbralish217, I'm sorry you've been dealing with this. I'm glad that you've found relief in this thread, knowing that you're not alone. I know it's somewhat comforting to know that others are dealing with similar symptoms so that you know you can at least look to those who've struggled for any solutions.
There are a lot of comments on this thread, but if you skimmed through at least a few pages, you may find some valuable information and possible things you can try to alleviate symptoms.
For the Buteyko method, there are online resources and books that teach various parts of the method. The most "traditional" method was a class I took through https://www.learnbuteykoonline.net/. That's just one resource, but definitely search around to see what you might find.
Have you gotten bloodwork done through the various doctors you've seen? Any deficiencies that any of them have noted?
Man, I was the exact same. I said the EXACT SAME line. It’s the symptom giving me the anxiety not the other way around. I had zero mental anxiety while I had the symptom, nothing. So yes I believed the same, can’t be anxiety. Notice how the symptom is on and off? Do you wonder why that has happened? Well I did too. I wondered if I ate something or drank more or less or something, I was convinced something caused it and it was about figuring it out to fix it. What made it go away personally for me was I was falling behind on work and everything was falling apart so I said to myself I’m not gonna let this thing derail me no matter how awful. And I woke up everyday with that determined can do attitude and worked. And the more I was focused the less I felt of it, until eventually I stopped feeling it but I barely noticed I was so focused again on my life.
Months later it came back and stayed and I hit my worst a few months later when I was determined to figure it out and fix it and ofc that made it more noticeable more prevelant and to the point I could not leave my house I’m not even joking. No idea it was anxiety and whenever I would hear that suggested by doctors I would dismiss it instantly.
This is my story. This is what it was for me and What I believe a lot of people here have.
It’s anxiety. If you can’t subscribe to that belief I could give you some fancy term (a lot of you love the term sighing dyspnea so I’ll give a fancy term) pseudodyspnea, somatic anxiety, physical anxiety,
It is not your fault but it’s your responsibility to accept what it is and start living your life again.
So what makes this go away. It’s basically by doing the opposite of what you’ve presumably try everytime you feel it. You try to fix and get rid and figure out and resist the feeling. Stop doing that. Allow it, let it be, ask for its worst. But letting it be is passive you don’t DO it. It happens when you don’t DO ANYTHING. You focus on life with all your being. Focus on living to the fullest. Going out more, seeing the world seeing your friends. Do it all. And you don’t live your life to the fullest for the sake of getting rid of this thing. You do it because your life is the prize not getting rid of the feeling. I haven’t felt it in years btw. But it wouldn’t matter to me if I did. This is why people feel it again after not feeling it for so long. It’s the caring that’s the issue. Stop caring. It literally is nothing to you if you choose it to be. Live life to the fullest.
This was addressed to you but also anyone reading. Don’t mean to be pushy just trying to tell you something I wish I had been told when I wasted precious years of my life on this symptom. I’m not a doctor or therapist. Doctor is in charge of your health not me. Good luck everyone
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1 ReactionIdk if you read my text, I don’t have this anymore. I’m recovered. I’m no expert in long covid but I believe that gets worse with exertion(walking up stairs or something). Some people here will stop the feeling of breathless ness even for a minute even while or after exercising which goes against all logic hence why it’s called pseudodyspnea i.e false dyspnea.
I’m no doctor though I respect you coming on here
Hi Gabriel @gabrielm ,
do you still have such a kind of SOB?
Have you found out the cause of your anemia? are you still anemic? When was your last CBC?
Persistent anemia could cause such a kind of dyspnea and it is important to know the underlying cause. Are you a vegan?
Do you experience fatigue or muscle weakness? Do you exercise?
You mentioned you woke up in the night. Do you have this SOB while lying down or lying down with legs elevated?
Do you have this SOB after meals and/or excessive drinking?
Hi @skipper01, I've been able to manage my symptoms over the years and now it doesn't bother me as much. I've accomplished this through breathing exercises and physical exercise. I try to share as much as I can through this forum for others who have similar symptoms in hopes that they can learn about various treatment and management options, and through such discussions, perhaps can discover a solution for those going through this same issue.
@gabrielm I am glad to hear that you are able to control this SOB!
What is your personal thoughts about your condition in terms of diagnosis? Do you have any idea about the root cause?
exp
Never really got an "official" diagnosis, just some catch-all ones like Chronic Hyperventilation Syndrome or possibly Vocal Cord Dysfunction, but not with 100% certainty. So I've just stuck with management of symptoms which has gotten me along just fine now.
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3 ReactionsHi Gabe,
I have never been able to explain my story until I read a mirrored version coming from you.
I also, developed this rare form of breathing in 2012 at the age of 60.
I have been a bad asthmatic all my life with chest infections becoming more prevalent and asthma increasing. I have also been in the top 5% fitness levels since I was 25 years old. I am now 75 (next month) and have fallen back due to this complaint to top 10%.
I chose to do Buteyko in 1998, twenty six years ago and for twelve years after, I was drug free. No puffers, no cortisone, no chest infections that needed antibiotics etc. I experienced all kinds of asthma before this and within six weeks, it changed my life forever.
I was warned by my GP that I would always be an asthmatic, and it would show up in different ways. I thought he was of the old school ignoring alternative ways of curing.
My mother died in 2007. At that time it was emotional and the stress came out in neck stiffness big time.
By 2010, I experienced a shortness of breath when tired but nothing to think twice about. My doctor, a specialist, prescribed a preventative puffer once per day and my exercising regime was still on track and very important to my every day.
In 2012, we were experiencing great troubles in our business and ended up having to sell our home to relieve debt. This was hard to accept (internally) and on the outside I put on a brave face, excepting all that came our way. All was not bad as with four children they were so supportive of my husband and I, and while life took twists and turns, I had an inner strength to support my husband and continue with positivity.
This is when I was hit badly with not being able to breathe. (2012) Yet, with all this I felt I was not a victim of 'anxiety'.............
You described that period of your life for five years and I felt I was wearing the same pair of shoes as you. It eventually left me when I realised after being hospitalised, having every test to show all clear, I was talking with a nurse who mentioned it just might be a 'brain to lung' disconnection and maybe I should work on it.
Eventually I was clear for another five years. Off and on I would get symptoms, start Buteyko once again and it would go away.
In 2020 and against the odds we managed to purchase our own home once again.
It didn't matter that COVID came, went, came, went. We were in our own home with no real worries
and our kids living in the States at that time would come and stay for weeks before returning. It was a time that I really thought I had all this mysterious breathing behind me.
2022, things started to change once again, and the stress came back into my life along with the odd breathing.
My husband is now in his 80's with alzheimers and I have been running our business since 2014.
We again have problems and with the flip of a coin we are faced with spiralling downhill.
This is not a sob story. In fact, I have been blessed in life, had an amazing life, four beautiful children, grandchildren and a husband who is kind. I am still positive on an upwards graph but need to say that it has become obvious to me that these challenges do effect my breathing more so the older I get.
As I look back there have always been life's challenges that must have impacted my health and can say it could very strongly be one factor that my mysterious breathing keeps coming back.
After reading all posts, there could be other possibilities that might trigger this as well and I am going to talk
to my specialist this week. I will start by sending him your article, so he can get a better understanding of my
breathing challenges.
I will endeavour to keep you updated.
Thank you for putting this original post up, and your continued support to all those who post.
Thank you,
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1 ReactionThat's quite a story you have @coopstar1949. I'm glad you found us here to share your story. Interesting that you found Buteyko all the way back to 1998. Not many people know of the method, but it's helped a great deal of people so I'm glad it helped me when I came across it, and glad it helped you get your asthma under control.
Also interesting that you were able to link the air hunger episodes with certain stressful events in your life. Stress can definitely cause a certain 'stiffness' in breathing and cause the respiratory system to react by restricting the breath and enabling the flight or fight response, even at a low level.
It's quite a journey you've had. I'm glad that you are choosing to have an upbeat and positive view of your life despite the business stresses you've been dealing with. I've always felt that keeping a positive, hopeful, and overall optimistic outlook helps alleviate symptoms tremendously and keeps you moving forward in hope. There is a large mental aspect to this, as well as other physical issues.
Do you still maintain any Buteyko exercises, or do you just start it up when symptoms return? Definitely interested to hear more of your story as it unfolds! All things considering, I'm glad you are doing well.