Mysterious shortness of breath

Posted by gabrielm @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?

@lwilliams06

I write this as I sit in the hallway at school because this symptom is so embarrassing. For about 2 years now I have had the same symptom that’s been described in this discussion. It feels like progressively it is getting worse and occurring all day, every day no matter what I am doing. It started out randomly one day. I had moments where I wouldn’t feel it but it was always there now for the past few months it has been at its absolute worse. What I feel is a sort of tightness in my throat that can only be relived by taking a deep breath or gasp for air however this is not always possible. This symptom creates a lot of anxiety on me and makes it hard to live my every day life. I have been seeing a therapist for a few months now and they have tried to get me on anxiety medication but I am hesitant to do so. If anyone here has any advice on how to cope with this or at least bring it down please, I am begging for some ideas. I read on this forum about the buteyko breathing method. How do you do this? Does B-12 vitamin actually work? Anything that can help me get back to the way I was would help tremendously. I am only 21 and I feel as if this issue is causing me to become almost incapable of living my life

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The reason you’re having this is because of acid reflux. Sometimes it is silent and you won’t have any heart burn. But when the acid gets back up from the stomach into the esophagus then the esophagus spasms and also narrows down and sometimes acid also gets into lungs. Plz take an alkaline diet and visit a gastro. And plz take a ppi like omeprazole or h2 blocker like Zantac. Try it for a week you will see the difference. But you have to steadily try for a week atleast to see any difference

Liked by msulcer

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@jenniferhunter

@merpreb Thanks for asking. I am breathing well. The only time I have shortness of breath is now from allergies and asthma, and if I stay on top of preventing that, I'm doing just fine, and I haven't had a relapse of the repeated chest infections since I got better control of my breathing.

There can be many causes of TOS, and my physical build contributes to my risk because I have a long neck….and my neck looks longer because the collar bones are attached lower on the front of my spine, so there is less room under them for the brachial plexus to pass with all the nerves and the blood supply in-between them and my rib cage. Some of the other risks are injuries like whiplashes, or repetitive stress like jobs with lots of arm movements. This can cause scar tissue in neck muscles like the scalenes, and the brachial plexus passes between the groups of anterior and posterior scalene muscles. Even high stress computer jobs, and poor posture contribute to the problem. I don't have an extra rib (cervical rib) in my neck. Emotional trauma is also a factor because as humans we tense our shoulders and neck in a guarded position and are not in good posture. Think about how a confident person's posture looks. that is where we should be and it's ergonomic. That is what you want to strive for to prevent TOS.

TOS is more common in spine injury patients, and I have had an injury and had surgery at Mayo to decompress my spinal cord. The scar tissue from surgeries also is a factor as tight fascia can restrict normal movement and ergonomics. If you have poor posture with shoulders and head in a forward position and round the back, it compresses the muscles on the front of the chest where these nerves and muscles pass. So it's complicated, and there are multiple points on compression in the neck and chest that can affect arteries, veins, and nerves, and even the blood supply to the brain. One of the tests is the doctor listens to my pulse at the base of my neck, and when I turn my head away from him, my pulse stops. When I look forward again it resumes. I had also lost shoulder and arm muscles that atrophied from spinal cord compression before I came to Mayo because all the local surgeons I saw would not help me.

The good news is that physical therapy and the myofascial release that I've mentioned helps a lot, and I am making good progress in my recovery and I am rebuilding muscle that was lost. I think that I will overcome this. It's actually common, and what makes TOS rare is finding doctors who understand the problem and know how to treat it. It is hardly covered in medical schools. That is why I came to Mayo. I needed spine surgery and also had TOS and needed to be somewhere that both issues were understood. I also had carpal tunnel surgery, and all these physical issues have overlapping neurological symptoms. I have had the imaging and nerve conduction studies, as well as Doppler imaging with blood pressure cuffs for my fingers confirming the changes to my circulation from TOS.

Here's my story. https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/

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Thank you for sharing your story @jenniferhunter! You have certainly done your research!

Liked by Jennifer Hunter

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@merpreb

Thank you for sharing your story @jenniferhunter! You have certainly done your research!

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@merpreb You're welcome. I've been at this a few years working with a great physical therapist and I read a lot about medical issues, and have learned a lot. I think outside the box, and usually figure things out before my doctors do.

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@zeeal

You have been suffering unnecessarily for so many years my friend. Acid reflux sounds very simple and harmless but has some very very nasty side effects. I’ve been having the same shortness of breath and the same symptoms and believe me it will not go unless your acid stops seeping into your esophagus and throat causing your esophagus to narrow down and spasm. Moreover acid even gets into lungs. So please take a strong ppi like omeprazole and stay on it. Visit a gastro. Please don’t tak this advise lightly. I’ve been through it and I know how bad it is

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@zeeal did it feel like you were almost dying? I know that sounds crazy, but at times, I feel like I have something spasming between my ribs then up to my throat and it makes me feel like I can't breathe. I used to be on Omeprazole for reflux and came off of it. I had no idea it could cause that feeling! I also used to have a hiatial hernia.

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@ashleyh– Good morning. May I ask why you got off of Omeprazole? The pains that you are experiencing can, eventually lead to a lot of damage. I had quite a bout of this last year. I think that the feeling of not being able to breathe is the anxiety that accompanies it.
https://www.mayoclinic.org/diseases-conditions/gerd/symptoms-causes/syc-20361940.

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Hi! I am so happy I found this thread. I too am suffering from this mysterious SOB. I started this last September.! I have since been to Urgent Care, a naturopath, the ER, a primary care doctor and most recently an allergist. I did allergy testing and was allergic to about 30 of the 62 things I was tested for so they want to start me on immunotherapy shots made up of what I am allergic too. I am not 100% convinced it is just allergies causing this as I take Flonase and an allergy pill every day. They also prescribed me on two inhalers thaybdont so much. I am a mom if three and own my own busy business and feel just so exhausted dealing with this SOB. I am so looking forward to finding the underlying cause as all test have come back normal (lung X-ray, blood work, breathing test, EKG, oxygen levels). I am at a loss of what to do. I become super anxious when it gets bad and get panicky and short with my family. I am desperate to figure out how to get rid of it. I did get two bad respitory illnesses in November and December and was coughing and then throwing up. I will say once they were done my SOB went away for a bit after each one and then came back middle of January again out of nowhere.

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Hi all, unfortunately this is still on going and not being helped by looking out over the Indian Ocean 🙁 now I find that I can’t eat a plate of food without getting incredibly uncomfortable and it effecting my breathing. I am eating the most simple of food and not much of it. Still taking 20mg omeprazole but doesn’t really seem to be doing much and am still experiencing the feeling of needing to burp but not being able too. I do have peppermint oil but have read that this may worsen acid reflux (although I don’t feel I have any)? Daily thoughts are just focused on breathing properly or not as the case may be, and just getting home and not moving from doctors office until they figure this out.

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@katgts

Hi all, unfortunately this is still on going and not being helped by looking out over the Indian Ocean 🙁 now I find that I can’t eat a plate of food without getting incredibly uncomfortable and it effecting my breathing. I am eating the most simple of food and not much of it. Still taking 20mg omeprazole but doesn’t really seem to be doing much and am still experiencing the feeling of needing to burp but not being able too. I do have peppermint oil but have read that this may worsen acid reflux (although I don’t feel I have any)? Daily thoughts are just focused on breathing properly or not as the case may be, and just getting home and not moving from doctors office until they figure this out.

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I am so sorry to hear this. I am making an Appt with my doctor to look at a possibility of the hiatal hernia. Even if it isn’t the case for me I can rule it out. I rather rule out a few more options because starting weekly allergy shots. I have also noticed I usually don’t wake up with it but it comes in within an hour or two of waking which is kind of strange.

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@gabrielm hi, thought I would give you an update. I was seen by my doctor and she obtained some blood work and a xray this far. Chest xray was normal and i have not gotten my results from my bloodwork yet. She also put me on Protonix and I have to say I am 90% better and have been on it for 1 week. I do not feel so much the need to take a deep breath. I am also going to have an ultrasound of my thyroid bext week and let you know the results of that. TBH…it was hard for me to belive it was "silent reflux " because in my mind how did it get so bad that it effected my breathing without ANY other symptoms ie: heartburn, fullness and any other symptoms that people complain of. After a lot of reading on it that the pepcid damaged my esophageal never so therefore I felt nothing until my gasping for a deep breath and that made since to me. Now, is that the whole problem, I dont know because I am awaiting other test and it that comes back normal I will go see an ENT. I hope this helps and I will let you know the other results as I get them.

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@katgts i started with 20mg of prilosec too with no relief . My doctor put me on 40 mg of protonix, not only does it stops acid but it heals the esophagus. I am so much better after 1 week of taking it and staying on an alkaline diet. I would never thought in a million years it would have been silent reflux, because i didnt experience the typical symptoms people complain of. The only symptom was I was air hungry to fill my lungs up. I guess when i think of it I would have a sore throat and trying to clear my throat all the time. Thought it was allergies. Again I am still waiting for an ultrasound of my thyroid but for now the protonix is working and that a good indication that the problem is SILENT reflux not gerd. There is a difference.

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@tonyagregg

@katgts i started with 20mg of prilosec too with no relief . My doctor put me on 40 mg of protonix, not only does it stops acid but it heals the esophagus. I am so much better after 1 week of taking it and staying on an alkaline diet. I would never thought in a million years it would have been silent reflux, because i didnt experience the typical symptoms people complain of. The only symptom was I was air hungry to fill my lungs up. I guess when i think of it I would have a sore throat and trying to clear my throat all the time. Thought it was allergies. Again I am still waiting for an ultrasound of my thyroid but for now the protonix is working and that a good indication that the problem is SILENT reflux not gerd. There is a difference.

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@tonyagregg

@gabrielm hi, thought I would give you an update. I was seen by my doctor and she obtained some blood work and a xray this far. Chest xray was normal and i have not gotten my results from my bloodwork yet. She also put me on Protonix and I have to say I am 90% better and have been on it for 1 week. I do not feel so much the need to take a deep breath. I am also going to have an ultrasound of my thyroid bext week and let you know the results of that. TBH…it was hard for me to belive it was "silent reflux " because in my mind how did it get so bad that it effected my breathing without ANY other symptoms ie: heartburn, fullness and any other symptoms that people complain of. After a lot of reading on it that the pepcid damaged my esophageal never so therefore I felt nothing until my gasping for a deep breath and that made since to me. Now, is that the whole problem, I dont know because I am awaiting other test and it that comes back normal I will go see an ENT. I hope this helps and I will let you know the other results as I get them.

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@tonyagregg Thanks for the update. I hope you get on a fast track to recovery. My breathing problem remained after I was put in Prilosec. Interesting that the Protonix helped you. I might have to try that. But it could still be a hiatal hernia. I plan on getting that checked sometime.

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@gabrielm

@tonyagregg Thanks for the update. I hope you get on a fast track to recovery. My breathing problem remained after I was put in Prilosec. Interesting that the Protonix helped you. I might have to try that. But it could still be a hiatal hernia. I plan on getting that checked sometime.

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@gabrielm i tried 20 mg of prilosec and my doctor said she wanted me on something stronger and prescribed 40mg of protonix. The not only is it the strongest anti acid but it heals the esophagus. I hope you find an answe for yours. It doesnt hurt to try.

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@tonyagregg thank you so much! Will check this out with doc when I get home. Hope you are feeling back to normal soon!!

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@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.

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@chrisdh5– Welcome to Mayo Connect. You probably are unaware of how to look for replies and posts on Connect so I can reassure you that Gabriel's post was addressed, and by me! Do you have a history of shortness of breath?

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