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.

Profile picture for domanic509 @domanic509

@gabrielm I also have all the same symptoms as you and basically everyone else on here. I have had CT scan of my chest and abdominal area, ultrasound of my neck, sleep study, all kinds of blood work, and now I am waiting on a MRI of my head and to see an allergist! So far I have found out that I have sleep apnea, fatty liver disease, and Thyroiditis with a Nodule on my thyroid but apparently my doctor says that these things alone should not be causing my constant shortness of breath so we will see what the allergist and MRI find if anything! I wanted to ask though do you also constantly have mucus/phlegm in your throat?

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@domanic509, I'm sorry that you're dealing with this. It can be frightening and disheartening. I hope your doctors can start uncovering some possibilities.

I have some phlegm/mucus much of the time interestingly. I think this might be due to my chronic GERD (which is being managed) but still produces phlegm. I don't know if that links with the air hunger, but can interrupt breathing patterns and might make symptoms worse.

How long have you been dealing with the breathing issue? Was it sudden onset or gradual over time?

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Profile picture for Gabe, Volunteer Mentor @gabrielm

@domanic509, I'm sorry that you're dealing with this. It can be frightening and disheartening. I hope your doctors can start uncovering some possibilities.

I have some phlegm/mucus much of the time interestingly. I think this might be due to my chronic GERD (which is being managed) but still produces phlegm. I don't know if that links with the air hunger, but can interrupt breathing patterns and might make symptoms worse.

How long have you been dealing with the breathing issue? Was it sudden onset or gradual over time?

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@gabrielm Yes for me the phlegm and air hunger is constant and has not once stopped completely! It will be a little bit better at certain times but most of the time it's very severe!! It started about almost 5 months ago now and it was very sudden out of no where while I was just laying in bed. The worst part about it for me though is that I have 3 young kiddos 9yrs, 7yrs, and 4yrs old and I have a wife who had a blood clot that went to her brain and caused a massive stroke 4 years ago just 2 weeks after we had our daughter and she never fully recovered, she is not able to communicate very well, she is partly paralyzed on her right side and blind in her right eye, so going through this constant air hunger makes it so hard to do all that I need to do. Oh I also wanted to ask has your eyes been affected at all through this.......like mine have extremely bad red spider leg veins all over the white parts of my eyes going into the color parts! I know it's weird but have your's also done this?

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Profile picture for domanic509 @domanic509

@gabrielm Yes for me the phlegm and air hunger is constant and has not once stopped completely! It will be a little bit better at certain times but most of the time it's very severe!! It started about almost 5 months ago now and it was very sudden out of no where while I was just laying in bed. The worst part about it for me though is that I have 3 young kiddos 9yrs, 7yrs, and 4yrs old and I have a wife who had a blood clot that went to her brain and caused a massive stroke 4 years ago just 2 weeks after we had our daughter and she never fully recovered, she is not able to communicate very well, she is partly paralyzed on her right side and blind in her right eye, so going through this constant air hunger makes it so hard to do all that I need to do. Oh I also wanted to ask has your eyes been affected at all through this.......like mine have extremely bad red spider leg veins all over the white parts of my eyes going into the color parts! I know it's weird but have your's also done this?

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@domanic509
Are you sure stress is not causing the breathing issues - I know it causes my SOB for sure. I stress myself over issues. Sometimes just going to the dentist starts it. 1/2 mg of a short-term relief Rx stops it !! Now I know what it is I don't need any meds and have been ok for over 6 months.

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Profile picture for isabeltoronto @isabeltoronto

@domanic509
Are you sure stress is not causing the breathing issues - I know it causes my SOB for sure. I stress myself over issues. Sometimes just going to the dentist starts it. 1/2 mg of a short-term relief Rx stops it !! Now I know what it is I don't need any meds and have been ok for over 6 months.

Jump to this post

@isabeltoronto I definitely think stress plays a huge role in it for sure!! But I know that my untreated sleep apnea that I am waiting on the breathing machine for and also the Thyroiditis that I am waiting to get checked out is definitely part of it as well but my doctor said the sleep apnea and thyroid shouldn't be causing this severe of air hunger so she wants to do more tests. What do you mean by 1/2mg of short-term relief Rx though because I would definitely like to try it to see if it helps me for now?

REPLY
Profile picture for domanic509 @domanic509

@gabrielm Yes for me the phlegm and air hunger is constant and has not once stopped completely! It will be a little bit better at certain times but most of the time it's very severe!! It started about almost 5 months ago now and it was very sudden out of no where while I was just laying in bed. The worst part about it for me though is that I have 3 young kiddos 9yrs, 7yrs, and 4yrs old and I have a wife who had a blood clot that went to her brain and caused a massive stroke 4 years ago just 2 weeks after we had our daughter and she never fully recovered, she is not able to communicate very well, she is partly paralyzed on her right side and blind in her right eye, so going through this constant air hunger makes it so hard to do all that I need to do. Oh I also wanted to ask has your eyes been affected at all through this.......like mine have extremely bad red spider leg veins all over the white parts of my eyes going into the color parts! I know it's weird but have your's also done this?

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@domanic509 You certainly have your hands full. Stress, worry and exhaustion can be contributing to your health issues. Have you been to your doctor? Do you have help in caring for your wife and children? Lack of sleep and coughing can cause the bloodshot eyes. I take a low dose anti-anxiety prescription at night to help with sleep. It doesn't knock you out so can wake up easily if necessary. God bless and keep us posted.

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Profile picture for isabeltoronto @isabeltoronto

@domanic509
Are you sure stress is not causing the breathing issues - I know it causes my SOB for sure. I stress myself over issues. Sometimes just going to the dentist starts it. 1/2 mg of a short-term relief Rx stops it !! Now I know what it is I don't need any meds and have been ok for over 6 months.

Jump to this post

@isabeltoronto What's the short-term Rx, please?

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Profile picture for domanic509 @domanic509

@isabeltoronto I definitely think stress plays a huge role in it for sure!! But I know that my untreated sleep apnea that I am waiting on the breathing machine for and also the Thyroiditis that I am waiting to get checked out is definitely part of it as well but my doctor said the sleep apnea and thyroid shouldn't be causing this severe of air hunger so she wants to do more tests. What do you mean by 1/2mg of short-term relief Rx though because I would definitely like to try it to see if it helps me for now?

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@domanic509
Not sure if I s hould say this but 1/2 mg Lorazapam and it stops it. Only used when SOB was bad to the point of throwing up. Don't need now I know what was causing it.

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Profile picture for gerry26 @gerry26

@domanic509 You certainly have your hands full. Stress, worry and exhaustion can be contributing to your health issues. Have you been to your doctor? Do you have help in caring for your wife and children? Lack of sleep and coughing can cause the bloodshot eyes. I take a low dose anti-anxiety prescription at night to help with sleep. It doesn't knock you out so can wake up easily if necessary. God bless and keep us posted.

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@gerry26 thank you!! I did just start an anxiety medication yesterday that hasn't seemed to help yet but it has just been 1 day so I know I need to give it about at least a week or two. I have seen my doctor several times for this and she is still helping me try to narrow down every possibility that is playing a role in this which I know my sleep apnea, GERD, thyroiditis, stress and worry is probably most of it but my doc thinks there is more going on so we will see and i will definitely keep you all posted!! Oh and I do have a little help here and there from family and friends with my wife and kids which does help!

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Profile picture for isabeltoronto @isabeltoronto

@domanic509
Not sure if I s hould say this but 1/2 mg Lorazapam and it stops it. Only used when SOB was bad to the point of throwing up. Don't need now I know what was causing it.

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@isabeltoronto thank you!! My doc did just start me on Lexapro which isn't as strong but hopefully it will still help with the anxiety of this all for now until I can get it all figured out!

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Profile picture for domanic509 @domanic509

@isabeltoronto thank you!! My doc did just start me on Lexapro which isn't as strong but hopefully it will still help with the anxiety of this all for now until I can get it all figured out!

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@domanic509

Hope it is just stress causing the breathing issues. I had for a long time and s ince realizing it was stress/nxiety causing my issues, I learned not to worry about it and managed to put out of my mind. It worked for me and sometimes I do get it back but tell myself there is n othing wrong. Good luck and keep us informed. You have a lot to stress over but you will succeed.

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