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.

@sunny3

@gabrielm Were you tested for h-pylori? I had the exact same breathing problem for years! Had low hemocrit for years, elevated A1C levels to the level of being diabetic and couldn't climb a flight of stairs without being out of breath. Had an endoscopy with biopsies. H-pylori treated with high dose antibiotics. Breathing issues resolved. Low hematocrit resolved and A1C returned to better than normal.
H-pylori blocks your body from absorbing red blood cells and other nutrients. So, once the h-pylori was treated, the body is able to absorb the red blood cells which then allows more oxygen in your system and my breathing issue resolved. I hope your issue is that simple too. Just took 20 years to figure out.

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Hi @sunny3, I have not been tested for that. Something to look into, thank you!

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Hi to all who have or had issues with 'catching a deep breath'.
I had a telephone apt with my 'new' dr. two weeks ago.
I discussed this with him and for the the moment he's thinking it might be anxiety. (which I beg to differ with)
So he prescribed a very low dose of Ativan - one for three days.
I didn't want to go this route and was quite anxious about it.. lol
So after a few days thinking about it I decided NOT to. Now, after almost two months, my breathing issue subsided substantially.. you're all welcome to figure that out. 😁
I will be seeing my dr this Friday!

Julia

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Did you ever try supplementary oxygen to see if it helped? Did you ever measure blood oxygen with an oxymeter during SOB attacks? Maybe it would help distinguish if the actual reason for SOB was low blood oxygen or something else.

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OMG, I am experiencing the same for past 7 months. I am an under 50 overweight male with a history of GERD and OSA. Both are well managed. For GERD, I had the LINX implant fitted. For OSA, I use a CPAP machine for last 8 years. My breathing problems started within a month 7 months back and they became so severe that I could not talk in full sentences or eat without getting food in my wind pipe. A whole circle of testing you can imagine was done (ER room diagnostic, Chest X Ray, Chest CT, Lung Function Test, EKG and Electrocardiography & Treadmill test, ENT, GI Surgeon, Speech specialist, Anxiety medication, overdose of acid medicines, sleep specialist and adjustment of CPAP machine, lung specialist and cardiologists. No diagnosis yet, other than one doctor thought it as a possible "deconditioning". It has been 7 months. Same thing.. good on few days in a row and worse for few days in a row... I also noticed that if I use my CPAP machine for less hours than it gives me relief. I also started skipping a day sometimes to get me relief. I've shared all these findings with the doctors but no conclusive diagnosis has been made yet. :). Not sure what to do.

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@petepete

OMG, I am experiencing the same for past 7 months. I am an under 50 overweight male with a history of GERD and OSA. Both are well managed. For GERD, I had the LINX implant fitted. For OSA, I use a CPAP machine for last 8 years. My breathing problems started within a month 7 months back and they became so severe that I could not talk in full sentences or eat without getting food in my wind pipe. A whole circle of testing you can imagine was done (ER room diagnostic, Chest X Ray, Chest CT, Lung Function Test, EKG and Electrocardiography & Treadmill test, ENT, GI Surgeon, Speech specialist, Anxiety medication, overdose of acid medicines, sleep specialist and adjustment of CPAP machine, lung specialist and cardiologists. No diagnosis yet, other than one doctor thought it as a possible "deconditioning". It has been 7 months. Same thing.. good on few days in a row and worse for few days in a row... I also noticed that if I use my CPAP machine for less hours than it gives me relief. I also started skipping a day sometimes to get me relief. I've shared all these findings with the doctors but no conclusive diagnosis has been made yet. :). Not sure what to do.

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Hi Pete and welcome to Mayo Connect. I'm sorry that you are having such a tough time. When I became a Mentor for this group I became so frustrated with this symptom because there are so many different reasons why people can get this. So I asked my own pulmonologist and he said that in recent years obesity has surpassed heart problems for dyspnea.

I'm sure that you have heard every rant and rave about being overweight even if you haven't reached obesity. You don't mention this in your post. Are you on a diet to help bring your weight down?

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I’ve been dealing with this for the past 2 years straight. Every time I google symptoms, it points to anxiety which I didn’t want to believe as I’m. It an anxious person. Pulmonary workup says I’m fine. I do have reflux so waiting in an egd to check into a hiatal hernia or h pylori. However, after looking more into “sigh dyspnea”, I’m honestly starting to believe this is more of a tic than a serious problem. In hindsight, I had random tics as far as I can remember, as a kid, sometimes it was a cough, other times compulsive blinking, as an adult, a lot of muscle twitching to get a stretch in. They would last a while and then go away and would not be present if I were asleep or distracted. Maybe anxiety could have brought it on as this started for me at the beginning of Covid and knowing I’d be having to take care of patients without proper PPE. Had the pleasure of reusing contaminated masks and storing them in brown paper bags when we had none nor did we have much understanding of the disease, so sure I guess that was traumatic. After digging deeper, it seems there are more instances if this and other tics as a result of the mental health fallout post Covid. I am now trying to force nose breathing (I think I did tons of mouth breathing in masks which also contributed to this) and reassure myself that I don’t always need to take deep breath or yawn. This is suppressing the urges and making it better. Knowing nothing seriously is wrong helps too. I can deal with an annoying tic that should hopefully pass on its own.

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@penny52

I’ve been dealing with this for the past 2 years straight. Every time I google symptoms, it points to anxiety which I didn’t want to believe as I’m. It an anxious person. Pulmonary workup says I’m fine. I do have reflux so waiting in an egd to check into a hiatal hernia or h pylori. However, after looking more into “sigh dyspnea”, I’m honestly starting to believe this is more of a tic than a serious problem. In hindsight, I had random tics as far as I can remember, as a kid, sometimes it was a cough, other times compulsive blinking, as an adult, a lot of muscle twitching to get a stretch in. They would last a while and then go away and would not be present if I were asleep or distracted. Maybe anxiety could have brought it on as this started for me at the beginning of Covid and knowing I’d be having to take care of patients without proper PPE. Had the pleasure of reusing contaminated masks and storing them in brown paper bags when we had none nor did we have much understanding of the disease, so sure I guess that was traumatic. After digging deeper, it seems there are more instances if this and other tics as a result of the mental health fallout post Covid. I am now trying to force nose breathing (I think I did tons of mouth breathing in masks which also contributed to this) and reassure myself that I don’t always need to take deep breath or yawn. This is suppressing the urges and making it better. Knowing nothing seriously is wrong helps too. I can deal with an annoying tic that should hopefully pass on its own.

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Hi @penny52, I’m sorry that you’ve been dealing with this. That’s definitely an interesting take on it. It’s very plausible because none of us are dying from it- it’s more of an uncomfortable sensation. I also try to suppress the urge as much as I’m
able and that has helped me.
Have you had other tests done like heart exams, bloodwork, etc?

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@penny52

I’ve been dealing with this for the past 2 years straight. Every time I google symptoms, it points to anxiety which I didn’t want to believe as I’m. It an anxious person. Pulmonary workup says I’m fine. I do have reflux so waiting in an egd to check into a hiatal hernia or h pylori. However, after looking more into “sigh dyspnea”, I’m honestly starting to believe this is more of a tic than a serious problem. In hindsight, I had random tics as far as I can remember, as a kid, sometimes it was a cough, other times compulsive blinking, as an adult, a lot of muscle twitching to get a stretch in. They would last a while and then go away and would not be present if I were asleep or distracted. Maybe anxiety could have brought it on as this started for me at the beginning of Covid and knowing I’d be having to take care of patients without proper PPE. Had the pleasure of reusing contaminated masks and storing them in brown paper bags when we had none nor did we have much understanding of the disease, so sure I guess that was traumatic. After digging deeper, it seems there are more instances if this and other tics as a result of the mental health fallout post Covid. I am now trying to force nose breathing (I think I did tons of mouth breathing in masks which also contributed to this) and reassure myself that I don’t always need to take deep breath or yawn. This is suppressing the urges and making it better. Knowing nothing seriously is wrong helps too. I can deal with an annoying tic that should hopefully pass on its own.

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Good morning and welcome to Mayo Connect. You bring up an interesting angle, as Dana mentioned. Have you thought about seeing a neurologist concerning tics? I'm not saying that there is a connection between breathing and your tics but there could be.

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@penny52

I’ve been dealing with this for the past 2 years straight. Every time I google symptoms, it points to anxiety which I didn’t want to believe as I’m. It an anxious person. Pulmonary workup says I’m fine. I do have reflux so waiting in an egd to check into a hiatal hernia or h pylori. However, after looking more into “sigh dyspnea”, I’m honestly starting to believe this is more of a tic than a serious problem. In hindsight, I had random tics as far as I can remember, as a kid, sometimes it was a cough, other times compulsive blinking, as an adult, a lot of muscle twitching to get a stretch in. They would last a while and then go away and would not be present if I were asleep or distracted. Maybe anxiety could have brought it on as this started for me at the beginning of Covid and knowing I’d be having to take care of patients without proper PPE. Had the pleasure of reusing contaminated masks and storing them in brown paper bags when we had none nor did we have much understanding of the disease, so sure I guess that was traumatic. After digging deeper, it seems there are more instances if this and other tics as a result of the mental health fallout post Covid. I am now trying to force nose breathing (I think I did tons of mouth breathing in masks which also contributed to this) and reassure myself that I don’t always need to take deep breath or yawn. This is suppressing the urges and making it better. Knowing nothing seriously is wrong helps too. I can deal with an annoying tic that should hopefully pass on its own.

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Hey @penny52, I have the same exact thing you seem to be having, except I also get throat tightness. For me it started after I cut pressure treated lumber, which was the mental trigger because I was told to never do that. But I also just got diagnosed with Tourette's Syndrome, so may be it is a tic. I don't want to believe it is, but it makes sense. I want to find a solution but I just haven't been able to yet. I have been chasing straws.

I will look more into "sigh dyspnea" and see the breathing exercises they recommend for that.

I am also chasing the HH idea but I am waiting forever to get a swallow study or an endoscopy done.

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@tahiristan

Hi Gabe and everyone else

So I just got diagnosed with Tourette's syndrome. For the longest time, I thought I had Dystonia but turns out it was Tourette's. I am now wondering if these breathing issues are related at all with Tourette's, which is honestly pretty shitty. I am having an endoscopy done as well in two months to rule out a Hiatal Hernia. We'll see if the treatment they have me on will help with my breathing issues as well.

Does anyone know anyone who has Tourettes?

Thanks

Tahir

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@tahiristan- Ah, ha! So it wasn't just simple tics that you've lived with your whole life. I'm very glad that you sought an answer- enough is enough, eh? Please keep all of us involved with your other tests. The best of luck!

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