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.

@deanna1015- Good morning and welcome to Connect. I'm glad that you have joined us. I'm not surprised that you feel panicked when you have SOB. Who wouldn't? I think that we assume that we will have a steady flow of air in and out and when that is disrupted it is time to panic.There are many grounding techniques to help with panic attacks. You can google them or try this:
I am using a mindfulness exercise in grounding to try to bring myself back to a normal breathing pattern.
Seeing 5 things and say their names out loud
Feeling 4 things and say the names out loud
Hearing 3 things and I say the names out loud
Smelling 2 things and I say the names out loud
Also purposefully slow your breathing down and inhale from deep deep- your stomach should expand. Your shoulders should not raise up if you do this correctly. Breathe in through your nose and exhale through your mouth which should be in a pursed position.
When I was short of breath as a result of my lung cancer I would get all upset when I couldn't catch my breath too. This breathing technique really helped me.
Please make sure that you visit a GI guy. There won't be any guessing games after you see him. You will have less to worry about, one thing settled.
By the way I take Claritin too (loratadine) is a non-sleepy antihistamine. Unless you have allergies you might want to check with your doctor to see if it will help.

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I have suffered from this same condition on and off for the last 20 or so years. When it first started occurring, I visited a doctor, he ran several tests and suggested an inhaler, I don't believe it helped (was 20 years ago) because I didn't continue using it. Then, because my right ear plugs up when my heart rate goes high from intense exercise he suggested athletes induced asthma, but again no change in what he prescribed. When it occurs, it lasts for days, sometimes weeks and then goes away, usually for long enough that I forget about it until it happens again. I happen to have a doctors appointment later this week, so I intend to discuss it with her, however, my deductible is so ridiculous I doubt I will be able to do much for testing.
I'm currently in the middle of a bout of this and am exhausted, and as ridiculous as this may sound, I am going to try past life regression; I'm willing to try anything at this point. If anyone has had any further luck or recommendations for testing I would love to hear them!

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@ajminn- Welcome to Connect. I'm glad that you found us. You sound extremely frustrated and I don't blame you. It sounds as if you have't seen a doctor in a while. I think that you need to see at least an new ENT and pulmonologist. There is a thing called exercise induced asthma. I have it. I am a 22 year lung cancer survivor and I know SOB very well. Have you read more than one or two posts? I think that you will benefit from many other suggestions and learn what everyone has found to be helpful.
I don't think that going back into your childhood will get you to breath breathe better but it could be very interesting.

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Here I am again after a long absence. Now past 3 years since I started having this condition. Latest is spyrivia which is doing nothing. I'll take one more month of it & quit. Some how, somewhere, there has to be a cure.

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Hi @boredsilly, thank you for the update. That must be so frustrating to find no affective treatment over the past three years.

I wanted to tag fellow Connect members @deanna1015 @gabrielm and @burrkay may be able to offer you support as you continue to search for treatment.

Back to you @boredsilly, how long have you been on spyrivia? What other treatments have you tried?

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@gabrielm

Hello, I am happy and sad to see this post. You have listed everything I am going through to a T. I have a few other things wrong with me, but I really hate to think this is a hyperventilation issue. I have been short of breath for about 5 years.

I cant say what brought it on, or why it comes and goes. It is the worst it has ever been right now. I usually use albuterol to help but it isnt even helping much now. Nobody knows whats wrong. I had all the tests and bloodwork done... the only thing that was abnormal was my C02 was low and my ddimer a bit elevated. I have a few different health issues. Sleep apnea being one. I really need aome answers soon.

When im sob my nasals are horribly clogged. I have chest tightness, upper back pain, and feel as if there is a lump in my throat. Swallowing also feels weird. I feel that laying or sitting makes it better. Lifting makes it worse, along with walking, or any acrivity really. I do notice i try to breathe more to see if its better which aint helping. I use my chest and shoulders whixh is wrong. But I didnt just start doing this for no reason???? Its so stupid. I used mucinex nasal spray a lot in my life. Now im scared that might have something to do with it all. It has to have a reason this is happening to us all. I cant believe this is due to a brain issue like forgetting how to breathe, and if it is i have a rough road ahead of me. Im really scared.

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@gabrielm

Hopefully they help get some answers @tonyagregg. I don't have answers yet, and been trying to find some since 2012. It's manageable and more stable, but I'd still like to get to the bottom of it so it doesn't get worse again. Let us know if you find out anything.

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@gabrielm
My next test is the hormone progesterone, and asking about ovarian cysts.

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@tonyagregg

@gabrielm hi, thought I would give you an update. I was seen by my doctor and she obtained some blood work and a xray this far. Chest xray was normal and i have not gotten my results from my bloodwork yet. She also put me on Protonix and I have to say I am 90% better and have been on it for 1 week. I do not feel so much the need to take a deep breath. I am also going to have an ultrasound of my thyroid bext week and let you know the results of that. TBH...it was hard for me to belive it was "silent reflux " because in my mind how did it get so bad that it effected my breathing without ANY other symptoms ie: heartburn, fullness and any other symptoms that people complain of. After a lot of reading on it that the pepcid damaged my esophageal never so therefore I felt nothing until my gasping for a deep breath and that made since to me. Now, is that the whole problem, I dont know because I am awaiting other test and it that comes back normal I will go see an ENT. I hope this helps and I will let you know the other results as I get them.

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Did u say you couldnt feel yourself take a breath??? Tbats what im at. So i deep breatge to feel it.

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@jessby

Hey everybody! So thankful I stumbled across this page. I have also been experiencing the exact same symptoms. They started a little over a week ago. I have had GI issues in the past but never anything this severe. I dealt with it for about 4 days until my boss/husband suggested I go to the ER. I am 35 years old and healthy! I only go to the doctor for my yearly physical. In other words, I don’t like going to the doctor. I did go see a chiropractor back to back days before I went to the ER. I was thinking maybe it was muscle tightness and something was preventing me from expanding my diaphragm all the way. Long story short, they did an EKG, chest x-ray and some lab work to rule out gallbladder issues. Everything came back fine! I was relieved but frustrated at the same time. They said it was anxiety/stress related which I’m having a hard time buying that. Seems like that’s the diagnosis everyone has gotten too. I’ve started Zantac in the morning and in the evening. I’ve lost 7 lbs this past week from not being able to eat/drink much at all due to discomfort in my chest and underneath my breastbone. Have also had a burning/nagging sensation in between my shoulder blades. I feel like I’m struggling to live in my own body. I was thinking I could have possibly had a hiatal hernia as well but that should have shown up on a chest x ray right? The excessive yawning and really exerting myself to catch a deep breath has gotten to me. The only time I can really get comfortable is if I lie on my side. Haven’t been sleeping well either because of worrying. I’ll be praying for you all and believing for healings/answers. ❤️

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@jessby i also have the burning or fist like sensation in my back! Wonder what this could be?

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@aea1205

@gabrielm

Hello, I am happy and sad to see this post. You have listed everything I am going through to a T. I have a few other things wrong with me, but I really hate to think this is a hyperventilation issue. I have been short of breath for about 5 years.

I cant say what brought it on, or why it comes and goes. It is the worst it has ever been right now. I usually use albuterol to help but it isnt even helping much now. Nobody knows whats wrong. I had all the tests and bloodwork done... the only thing that was abnormal was my C02 was low and my ddimer a bit elevated. I have a few different health issues. Sleep apnea being one. I really need aome answers soon.

When im sob my nasals are horribly clogged. I have chest tightness, upper back pain, and feel as if there is a lump in my throat. Swallowing also feels weird. I feel that laying or sitting makes it better. Lifting makes it worse, along with walking, or any acrivity really. I do notice i try to breathe more to see if its better which aint helping. I use my chest and shoulders whixh is wrong. But I didnt just start doing this for no reason???? Its so stupid. I used mucinex nasal spray a lot in my life. Now im scared that might have something to do with it all. It has to have a reason this is happening to us all. I cant believe this is due to a brain issue like forgetting how to breathe, and if it is i have a rough road ahead of me. Im really scared.

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@aea1205- I have abused nose spray before and it will turn itself around and bite you if you don't take it. Have you seen an ENT guy? There are things that can help get your nasal passages cleared if they haven't been damaged.
I know how scared you must feel because SOB is very scary. I'm a 22 yr lung cancer survivor and am very familiar with this.
I would suggest reading back on these posts and make an appointment with an ENT.
Do you think that you will do this?

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