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.

@jasullivan3

Has anyone done a sleep study? It does seem the worse I sleep, the worse my SOB is

Jump to this post

I did have a sleep study done a number of years ago. Didn't really find anything out of the ordinary, but valuable data and insight nonetheless. It sounds like it could be worth it for you to get one done if you're unable to get consistently good sleep. Some people wake up more often throughout the night than they realize!

REPLY
@davidcg

Hi Gabe, I hope you're doing well. I wanted to reach out because I've been dealing with similar shortness of breath issues and was curious about how you're currently managing your condition. Have you found any more definite terms or diagnoses, and have you discovered any lasting solutions or treatments that have made a significant difference? Any insights you could share would be greatly appreciated, as I'm still searching for answers myself.

Jump to this post

Hi @davidcg,

I wanted to check in to see how your own search is going. How are you faring?

REPLY
@gabrielm

Hi @davidcg,

I wanted to check in to see how your own search is going. How are you faring?

Jump to this post

Thanks Gabe
I’m doing well.
I just spent four weeks in London with family. Interestingly, every time I go there I hardly use my sprays and I don’t notice changes in my day to day breathing.
It’s very dry compared to
Sydney
Back here if I get the urge to take a deep breath when I feel I could slump back into the breathing problems, I busy myself, distract myself and continue without doing so. I find that my awareness for the need lessens and eventually I’m not even thinking about it.
So far so good.
I hope you’re travelling ok as well and thanks for checking in.
Where in the US do you come from?
I have a son living in LA who is currently building a restaurant portfolio there.
Kind regards,
Sharon

REPLY
@coopstar1949

Thanks Gabe
I’m doing well.
I just spent four weeks in London with family. Interestingly, every time I go there I hardly use my sprays and I don’t notice changes in my day to day breathing.
It’s very dry compared to
Sydney
Back here if I get the urge to take a deep breath when I feel I could slump back into the breathing problems, I busy myself, distract myself and continue without doing so. I find that my awareness for the need lessens and eventually I’m not even thinking about it.
So far so good.
I hope you’re travelling ok as well and thanks for checking in.
Where in the US do you come from?
I have a son living in LA who is currently building a restaurant portfolio there.
Kind regards,
Sharon

Jump to this post

@coopstar1949, glad to hear you're doing much better! I am in the southwest, US. In New Mexico.

REPLY
@helpnywhereucan

People with GERD should consider alkalizing and getting their mineral reserves up. I would suggest that anyone having issues with heartburn, arthritis and other symptoms of chronic acidity research minerals, bicarbonates, alkalizing etc. There are tons or articles and research out there. I speak from experience...I was scheduled to meet with a surgeon for chronic acid reflux (I'd tried everything, pepcid, nexium, propping myself up on a wedge pillow at night) and right before I met with the surgeon I met with a doctor who told me the surgeon would more than likely recommend surgery for something that could be handled with a simple diet change. I cancelled the appointment with the surgeon, starting eating better, juicing etc and took a magnesium supplement and my reflux was gone in a couple weeks. Luckily for me, mine was not due to a structural issue and a change in diet eradicated it. If you're having an issue with reflux try changing your diet and having your potassium, magnesium and calcium levels checked. Do not let a doctor tell you they have nothing to do with your health...they do. Minerals neutralize acid. Calcium is especially beneficial because, not only does it neutralize acid but deficiencies cause the Lower Esophageal Sphincter to relax allowing acid to rise or splash out of the stomach and into the esophagus. It's a delicate balance between calcium and magnesium, but if you find what works for you, you find relief. It can be trial and error but worth it.

For my shortness of breath...I've been taking a Magnesium/ Potassium supplement and I think it has dealt my SOB the final blow. The diet changes were extremely beneficial but the supplement really made a difference for me.

Good luck everyone!

Jump to this post

Was your shortness of breath caused by taking something for your GERD? I have been on Nexium for a long time. I also have shortness of breath. I want to wean myself off of Nexium. Was that hard for you to do ?
God Bless,
Retha

REPLY
@chrisdh5

Hi Gabriel

I see no one has responded in half a year and as I just stumbled upon your post, I saw fit to write a short answer to your problems.
Prolonged shortness of breath (accompanied by other symptoms as for instance lightheadedness/dizziness and headaches) are sometimes caused by, as you stated, chronic hyperventilation. This means that you either inhale too deeply or inhale too frequently for a longer time. GERD is known to cause shortness of breath when acid reaches airways, but as I read your story I do not think GERD is the cause for your prolonged experiences with SOB.

Based on the relief you feel when taking supplements of which you believe they help, in combination with positive effects of exercise and the overall prolonged experience of symptoms, chronic hyperventilation does seem a reasonable explanation for what you're experiencing. This, as I read your story (no obvious signs of disease/malfunctions concerning heart or lungs) leads me to believe your problems are not physiological at base. It is known that anxiety and/or depression can influence breathing severely. These mental issues are not always obvious in daily life. Many people don't know they're going through such issues. Have you considered looking in this direction? If you keep experiencing the same symptoms in the same manner, it could be fruitful to consult a therapist.

Since it has been 6 months, may I ask how you're doing now? Have you noticed improvements? If so, how did you improve your situation?

Best regards and I hope this answer helps!

PS I am not a doctor. I have however read (way too many) studies concerning this specific issue.

Jump to this post

I just saw this, and I wanted to add-- I have been having this for the last 7 years, but it comes and goes. It is quite unbearable at times, and then it gets bearable. I have also done lung, ENT and other tests-- nothing has come up so far. It has been really taking a toll on my life though now, since for the past 2 months, the symptoms have been continuous, as opposed to a few years back when the symptoms came, stayed for a month or so and then went. Curious, if there have been any other diagnoses of this?

REPLY
@deanko

I just saw this, and I wanted to add-- I have been having this for the last 7 years, but it comes and goes. It is quite unbearable at times, and then it gets bearable. I have also done lung, ENT and other tests-- nothing has come up so far. It has been really taking a toll on my life though now, since for the past 2 months, the symptoms have been continuous, as opposed to a few years back when the symptoms came, stayed for a month or so and then went. Curious, if there have been any other diagnoses of this?

Jump to this post

Hi @deanko, I know what you mean. Mine comes and goes as well, but haven't had any really bad bouts in a while.

Do you do any exercise? Had your doctor done any bloodwork/tests?

REPLY
@rethajones

Was your shortness of breath caused by taking something for your GERD? I have been on Nexium for a long time. I also have shortness of breath. I want to wean myself off of Nexium. Was that hard for you to do ?
God Bless,
Retha

Jump to this post

Just saw this. Be aware that GERD can also cause pulmonary fibrosis which causes shortness fo breath. In fact my Mayo Pulmonologist cautioned me against eating or drinking anything 3 hours before going to bed.

REPLY
@vic83

Just saw this. Be aware that GERD can also cause pulmonary fibrosis which causes shortness fo breath. In fact my Mayo Pulmonologist cautioned me against eating or drinking anything 3 hours before going to bed.

Jump to this post

I didn’t know that about not eating or drinking anything 3 hours before going to bed.
Thanks so much!!
God Bless,
Retha

REPLY
@rethajones

I didn’t know that about not eating or drinking anything 3 hours before going to bed.
Thanks so much!!
God Bless,
Retha

Jump to this post

You can find multiple articles on the relationship between IPF and GERD. IPF is a very serous disease so one does not want to risk it.
"“The thought is that the reflux comes up from people’s stomachs, into their throat and mouth, and then some acid goes down their windpipe ending up in their lungs."
https://royalpapworth.nhs.uk/our-hospital/latest-news/research-pulmonary-lung-fibrosis-acid-reflux-lansoprazole

REPLY
Please sign in or register to post a reply.