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.

@jenniferhunter

@kjconrad Tingling and neck pain can be a spine problem or a nerve entrapment issue like thoracic outlet syndrome which can be caused by an injury to the neck or chest. TOS can affect breathing because it affects some of the muscles surrounding the rib cage. You might want to start with a neurologist who can figure out where the tingling is coming from. TOS is aggravated by a forward arm position and rounded shoulders and even forward neck positions, and you might be doing that riding the spin bike. Physical therapy and myofascial release can help TOS and correct posture is really importrant. I have TOS and I also had cervical spine surgery. If you suspect a spine issue at all, don't let anyone manipulate your vertebrae because it can injure you if there is an underlying problem. Here is some information about TOS and our discussion on MFR therapy with lots of links and information. You can find an MFR therapist at https://myofascialrelease.com/find-a-therapist/ , but you will need a doctor to determine if you have any spine instability before you let a therapist work on your neck. Your therapist should ask for this so they understand what they are working with. MFR is gentle stretching and not chiropractic manipulation. If the tight tissues are released, the muscles and bones can go back in line where they belong.

https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988
https://www.painscience.com/articles/respiration-connection.php
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3501918/
https://share.upmc.com/2016/08/thoracic-outlet-syndrome-symptoms-and-causes/
https://trainingandrehabilitation.com/how-truly-treat-thoracic-outlet-syndrome/
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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Thank you! I go to the doctor in a couple weeks and will bring this up.

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Not sure if this thread is still alive. I just stumbled on it. The op grabriel pretty much described what I have. I am a healthy 50 year old male. Been very active my entire life and this seemed to creep up on me about 10 years ago. It seems to be more frequent. Eating brings it on often. I have a lot of indigestion. It affects my sleep. I wake up often. I have been checked for all breathing issues and have none. My heart was check and is healthy. My stomach was scoped and I have signs of acid reflux. Tried Prilosec but did not help. Really would like some help managing this.

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Hi @jack10525. The thread is alive and active! Not sure if you've read through all the comments, but if you haven't you might go through them to see if anyone else's symptoms match yours (there are a lot, but worth the read). You might be able to find similarities with others. There are also suggestions for different things that might help you manage it, like breathing exercises. Looks like you have GI issues, like indigestion and maybe GERD. Did the Prilosec not help with the heartburn or the breathing? You might want to try a different PPI or GERD medicine. GERD seems to be common among many of us on the thread, so wondering if there's a a connection.

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@jack10525

Not sure if this thread is still alive. I just stumbled on it. The op grabriel pretty much described what I have. I am a healthy 50 year old male. Been very active my entire life and this seemed to creep up on me about 10 years ago. It seems to be more frequent. Eating brings it on often. I have a lot of indigestion. It affects my sleep. I wake up often. I have been checked for all breathing issues and have none. My heart was check and is healthy. My stomach was scoped and I have signs of acid reflux. Tried Prilosec but did not help. Really would like some help managing this.

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My pulmonologist told me that acid can get into lungs causing inflammation and thus SOB. Also, did they check your gall bladder?

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@jack10525

Not sure if this thread is still alive. I just stumbled on it. The op grabriel pretty much described what I have. I am a healthy 50 year old male. Been very active my entire life and this seemed to creep up on me about 10 years ago. It seems to be more frequent. Eating brings it on often. I have a lot of indigestion. It affects my sleep. I wake up often. I have been checked for all breathing issues and have none. My heart was check and is healthy. My stomach was scoped and I have signs of acid reflux. Tried Prilosec but did not help. Really would like some help managing this.

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@jack10525- Good morning and a late welcome to Connect. I missed your post and I am sorry that I am late in responding. I see that you have some great responses from @gabrielm and @helena4000. This sounds exactly like GERD and I suggest that you make an appointment with a GI doctor. I'm glad that you have had your lungs tested and that all is fine and have been ruled out as a cause. Have you read any of the posts here?

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@nycmom

Do you have a cough or any other symptoms that indicated the fungal infection ?

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The main symptoms of the fungal infection were just difficultly swallowing and severe reflux/regurgitation

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Just left the doctor and it is frustrating because he said I don’t need any referrals and that I am healthy. He said wants me to try an anxiety medication for 4/6 weeks. I told him I get anxiety over the air hunger but other than that don’t really have it. Not sure if I should give it a go or not. Has anyone has their SOB go away while on anxiety meds?

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@kjconrad- Hi. Have you been checked out by a GI doctor yet? You mentioned earlier that you thought you might have GERD. What kind of a doctor did you just see?

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Also, in addition to number post above, does anyone know if a king X-ray would show if a rib is dislocated? Thanks!

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@merpreb

@kjconrad- Hi. Have you been checked out by a GI doctor yet? You mentioned earlier that you thought you might have GERD. What kind of a doctor did you just see?

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I have seen an urgent care doc, holistic doc., the doctor in the ET and now my primary care doc. The primary care doc thought it could be silent acid reflux but the meds didn’t do anything.

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