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.

@merpreb

@gabrielm, @ritasob1 @jenniferhunter, @lwilliams06, @katgts, @ashleyh- Good morning everyone. I hope that all of you had a good night sleep. I've become concerned about so many of you complaining about shortness of breath. I know how that feels, it's scary and even petrifying, which of course makes it worse. There is a plethora of organic reasons for shortness of breath. If you do not have any of these, to your knowledge, than we have to go outside of your body to find a cause.
https://www.mayoclinic.org/symptoms/shortness-of-breath/basics/causes/sym-20050890
I am not a doctor and can't not make a diagnosis. But I can share with you my little story and the causes of my foray into this horrible place. I left for a University far away from my home, looking to break away from my over protective family. The morning of my flight I started to breathe very hard and I also started to gag. The gagging was learned behavior from my mom- a whole other story! I unfortunately became so home sick that I wound up going home, back into my source of comfort and anxiety. For many years after that I had to carry a paper bag with me so that I could stop this fast and mind conscious inhale, exhale cycle.
What I had, and it may be what you have is called hyperventilation. I will not go into the science of this as I have a YouTube video that will do that. But what I can tell you is that hyperventilation is most usually caused by stress. It doesn't matter why you have stress or whether you are conscious of it, it's still stress. We all have to figure out the cause/reason for it. It took me years to get rid of it, through therapy. But, that was years ago. Today there are breathing exercises that you can find on-line to help. So with out further to do here is the video.
https://www.youtube.com/watch?v=p97HeXx0vN0
Please let me know how the exercises work out.

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@merpreb This is good information and the Mayo link covers a lot of breathing issues. I always try to have relaxed breathing and have done a lot of slow breathing to lower my blood pressure and improve breathing, but sometimes it won't work because of the asthma and swelling of airways and phlegm that is just in the way. That was the key to solving my own issues because my allergy treatments were not enough, and with some changes, I am breathing easier again.

I also have a physical complication, thoracic outlet syndrome (TOS) and because of physical chest tightness, one side of my ribs doesn't expand as much as the other, and that side was always where my excess phlegm and lung infections began. Many doctors don't understand TOS as it is barely mentioned in medical school, but it causes the upper chest anxiety type panic breathing that you describe because the chest doesn't move properly, and compression of nerves and blood vessels. TOS, has caused sudden painful muscle spasms into my chest wall from nerve compression that can be triggered by the position of my head. All of the vital nerves are traveling from the spine in the neck into the chest and arms through some very small spaces and going to the heart and lungs. Injuries in these areas can cause tight fascial restrictions that put lots of pressure on the nerves causing tightness in tissues. That sets the stage for illness when phlegm movement and expulsion is slowed down and accumulates providing an environment where germs can grow.

The physical therapy that helps me with TOS also includes Myofascial release, and I am making steady progress. Stress and fear can put my body right back into these negative patterns by tightening up everything we had already released in therapy. Lung tissue is mainly fascia with blood vessels and can have restrictions into it. My therapist can feel the restriction pathways through my body with her hands, and by stretching this tight tissue, it opens up space where fluids, oxygen, and metabolic waste products can be exchanged and eliminated. It also feels good when things move properly again. I'll share some links and the discussion I created about MFR therapy. This would be something to consider if other treatments have failed. MFR is also about letting go of past emotional trauma and scar tissue and is a mind/body practice.

This explains a lot of mechanics of breathing and how TOS affects it.
https://www.painscience.com/articles/respiration-connection.php

Myofascial Release information (MFR)
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Thoracic Outlet Syndrome (TOS)
https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988
https://trainingandrehabilitation.com/how-truly-treat-thoracic-outlet-syndrome/

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@jenniferhunter - I had to look up TOS myself. I'd never heard of it either. It's described by Wikipedia as being caused by: "TOS may result from trauma, repetitive arm movements, tumors, pregnancy, or anatomical variations such as a cervical rib.[1] The diagnosis may be supported by nerve conduction studies and medical imaging.[1] Other conditions that can produce similar symptoms include rotator cuff tear, cervical disc disorders, fibromyalgia, multiple sclerosis, and complex regional pain syndrome.[1]"
Do you know what caused yours?
Do you know what your plans are for this shortness of breath?

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@merpreb

@jenniferhunter - I had to look up TOS myself. I'd never heard of it either. It's described by Wikipedia as being caused by: "TOS may result from trauma, repetitive arm movements, tumors, pregnancy, or anatomical variations such as a cervical rib.[1] The diagnosis may be supported by nerve conduction studies and medical imaging.[1] Other conditions that can produce similar symptoms include rotator cuff tear, cervical disc disorders, fibromyalgia, multiple sclerosis, and complex regional pain syndrome.[1]"
Do you know what caused yours?
Do you know what your plans are for this shortness of breath?

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@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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I have the same thing and it’s driving me crazy! Someone on here said it well...it’s like having to manually breath rather than it being involuntary. I like the “air hungry” description as well. And I almost feel like it’s an addiction to the deep breath. I’ve felt it my whole life but it has been horrible for a little over a year. I’ve found a few other similar threads and it seems overwhelmingly that we are healthy individuals who don’t relate to the excess anxiety claim. I’ve tried the breathing techniques mentioned along with being a meditator and nothing seems to help. I’ve even tried anti-anxiety meds. It feels very physiological. I hope to stay in too with this and other threads so that maybe one of us finds the solution.

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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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@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

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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!

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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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