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.

Hi! @justlearning. I got neurology blood, electromyogram and muscular biopsy tests. I also got tested for Pompe disease. The blood test showed high levels of serum CK. The electromyagram showed certain anomalities but according to my neurologist they cannot know the cause of them. The muscular biopsy was normal. On the other hand, I found fascinating your post about pseudo-dyspnea and the link to the Hanna Saadah's post. @gabrielm is also a supporter of this thesis behind the condition.

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@mario1966

Hi! @justlearning. I got neurology blood, electromyogram and muscular biopsy tests. I also got tested for Pompe disease. The blood test showed high levels of serum CK. The electromyagram showed certain anomalities but according to my neurologist they cannot know the cause of them. The muscular biopsy was normal. On the other hand, I found fascinating your post about pseudo-dyspnea and the link to the Hanna Saadah's post. @gabrielm is also a supporter of this thesis behind the condition.

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This is great info. Last year when I was searching for an answer and posting here, I did find info about CO2 and the connection between SOB, shortness of breath, acidity, exercise. This sums up a bunch of investigating posts I left. I had bad experiences with nexium in the past so I control acidity with diet & supplements but I think this worth investigating for those of you who still have sob. I'm still at about 99% cured. About to add in a little calcium citrate to my regimen to see if that takes me to 100%. Calcium reduces acid in the body & helps control the close of the lower esophageal sphincter which will help prevent acid splash.
Thanks for the post.

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@justlearning

Has anyone noticed neuropathy issues with their GERD?

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@justlearning- Have you had any recent treatments or new medicines? SOB is a symptom not a cause.

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Hi All,

Hope everyone is doing ok with this covid19 situation.

On 3/8/2020, with no apparent reason I started having shortness of breath along with excessive burping, it became progressively worse on 3/9/2020 and eventually I went to the ER as SOB is one of the COVID19 symptoms. The ER doc cleared me and referred me to a pulmonologist if my breathing issues persist or get worse.

The issues seem to disappear in couple of days (no change in lifestyle or no medication). But they issue reappeared on 3/18/2020 with full force. I have scheduled an appt with the pulmonologist on 3/25/2020.

But what was interesting is that the issue occurred and progressively becomes worst from morning to evening and then reduces from evening to night. Peaking between 5 and 8 pm. Additionally it only occurs while standing/walking or sitting. Standing was much severe compared to sitting. As soon as I lay on the bed, shortness of breath reduced considerably and in 10 to 15 minutes completely gone.

Background:
I reduced more than 20 lbs between Oct 2019 and March 2020. Now I hover around 157 to 159 lbs, Height:5Ft 6 inches, Age 38 yrs, Male
Due to family history doctor has prescribed Crestor 2.5 mg 3 times a week (reduced from daily to 3 times due to weight loss and very favorable cholesterol numbers). Other than pollen (etching and watering of eyes and cough/cold), no identified allergies.

Have had some bouts of acidity, but nothing which caused prolonged and recurring shortness of breath.

Very annoying and worrisome especially during these COVID19 days.

Regards,
Sukrut Phadke

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Hi @sukrutp and welcome to Connect! Connect members such as @helpnywhereucan @mario1966 and @tonyagregg may be able to offer you support.

How are you feeling about the upcoming appointment?

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@sukrutp- Welcome to Mayo Clinic Connect. It looks as if you have done a lot of things to change your life to help the SOB, especially losing weight. I encourage you to read the posts in this discussion as others like you have basically the same symptoms. I wouldn't rule out GERD as the reason for your SOB. Finding out the cause for it can be tricky and GERD can be difficult to diagnose because it's sometimes unreliable in the way that it acts.

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@jwiegers17

How did you go about testing for this? I had black mold in my bathroom and I think i got really sick from it, right around the time this started. This Would be worth testing for me but I don’t know how to even ask.

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I am located in Texas and there are state licensed companies that do testing only. Texas regulates the inspectors and they are not allowed to do any of the removal, only inspect . They do visual inspections and test a sample and it is expensive : 2500 sq ft home cost about 1200.00 that was with air quality test, which I definitely recommend. We had 3 of the most toxic black molds there is . The air quality outside of house was 300 ppm ( parts per million ) but inside about 20,000 ppm. It was really bad . If you back mold for a long time it becomes air borne and it then gets in your AC heat duct system and the spores get on all your furniture , books, clothes , everything you own . You have to discard all of your belongings or you can try to clean but it takes heavy cleaning with bleach then let it dry for 12 hrs then clean with vinegar let it dry 12 hrs then clean with ammonia mixed with water 1/2 ammonia to gallon of water and you would wash all clothes 3 times with each . This was the directions given to me by a Dr that actually experienced toxic mold poisoning herself . It is a rough process . First symptoms were : rash, high BP, felt like my head was on fire ( I still experience this almost 3 yrs later ) what are your symptoms ? I am a little slow on responding but I will gladly give you as much information. I have and I will gladly help because I know how difficult this can be . Good luck

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@gabrielm

Yes @tonyagregg, I'd like to keep in touch with you. Sounds like what you have is pretty similar to me. It's been much worse before, but it's stabled out. Still not gone by any means, but I can at least live with it. Let's stay in touch. Maybe we can tag team our research or let each other know if we find some kind of answers.

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I have same issue started since first week of March and gone through my xrays and blood works. They say all is fine including heart function. Please advise if something can improve daily living as I am really having hard time sleeping as well. Really appreciate the guidance on exercises or any other thing.

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In regards to mold...There are some strong anti fungals that your doctor can prescribe. If it's a small amount of mold your body might be able to detox from it on its own. In my research I've come across people who've stated they've used undenatured whey protein. It provides the building blocks for your body to make a hormone called glutathione which the liver needs to rid the body of toxins https://moldfreeliving.com/2018/05/11/glutathione-the-most-important-antioxidant-for-mold-recovery/

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Yes I already take the glutathione. There is no cure with anyone drug or supplements. It is a combination of actions to take that will help my body eliminate the mycotoxins. Slow process . One of my doctors suggested hyperbaric chamber treatments but it is expensive and Medicare will not cover . I am appealing that .

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