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.

@helpnywhereucan

I'd also add that many of us are relying too much on external factors for our healing. Physicians and hospitals are great, and by all means if you're under a doctor's care, continue that, but for many of us here, this is a situation where we haven't been honoring our bodies. Our society tells us to push hard, only weak people sleep and take downtime etc. Fake 'food' is everywhere and super convenient, blinding us from the need to make healthy food choices. For many of us this comes down to listening to our lives, honoring ourselves and having the discipline to make changes. The question I had to ask myself was do you want to travel the road of life not feeling well all the time or will you value your physical instrument (your body) and treat it with respect and honor? Do you want your body to be healthy and strong so that you can fulfill your mission in life, be there to support your family, serve humanity? My answer was yes...so that meant I had to make the sacrifice. Get rest, eat healthy foods, stay hydrated, exercise. Not to mention, I didn't like how I looked. It was easier to complain than to take action but as soon as I did my hair stopped thinning, my skin became clear, brighter teeth, longer nails and I lost weight. It's worth it. If you have a diagnosis, honor that, but by all means, don't discount maintaining a healthy lifestyle as an important ally on your journey to wellness. Your discipline will reward you. Just my two cents.

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@helpnywhereucan- I'm not so sure that we all rely on external factors but rather ignore recommendations by medical and health professionals. When the food pyramid was revised, and has since then been the "bible" for a more beneficial health regime, too many people have ignored it. I do agree that we have to take good long looks at ourselves to determine if we want to stay unwell or feel better and to make changes to correct their situation. Unfortunately too many people do not do research either so they do not know where to begin and might give up.
I'm glad that you are feeling quite. How would you address others here how to begin to take care of themselves more?

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@merpreb

@helpnywhereucan- I'm not so sure that we all rely on external factors but rather ignore recommendations by medical and health professionals. When the food pyramid was revised, and has since then been the "bible" for a more beneficial health regime, too many people have ignored it. I do agree that we have to take good long looks at ourselves to determine if we want to stay unwell or feel better and to make changes to correct their situation. Unfortunately too many people do not do research either so they do not know where to begin and might give up.
I'm glad that you are feeling quite. How would you address others here how to begin to take care of themselves more?

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Very well said. I have gained 8 lbs and am having more difficulty in breathing. Each morning I do well but my resolve away by evening. I need to wake up or it will only get worse. Any ideas? All appreciated. Jo54

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@jo54

Very well said. I have gained 8 lbs and am having more difficulty in breathing. Each morning I do well but my resolve away by evening. I need to wake up or it will only get worse. Any ideas? All appreciated. Jo54

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If you're having difficulty, start small. That way your body and mind won't rebel too much. Experiment with things. One of the first things I did was say, "I'm going to eat a salad every day," and I stuck to that. A little while later I added in meatless Mondays. And then fish Fridays. Instead of eating a cupcake for desert try an apple with almond butter. Try to add more fruits and vegetables to your meals...diced apple to oatmeal for example. I put frozen broccoli or peas in my banana strawberry smoothies and I don't even taste it. For a snack try cucumbers, cherry tomatoes with a small amount of seasoned cottage cheese. Small changes will soon add up.

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@jo54

Very well said. I have gained 8 lbs and am having more difficulty in breathing. Each morning I do well but my resolve away by evening. I need to wake up or it will only get worse. Any ideas? All appreciated. Jo54

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@jo54- Good morning. Unfortunately there is no perfect bullet for staying on a healthy diet and stable weight. Here is a group that concentrates on healthy living: https://connect.mayoclinic.org/group/healthy-living/?utm_campaign=search
I think that it boils down to how much you want to feel better and come up with an exercise plan and activities that are healthy for you. Before your weight gain what did you do to stay at a good weight? What might have triggered your gain?

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@oliviah9

Hi all! I have just finished reading this whole thread. I also have all of these exact symptoms. I am a 20 year old female who is healthy and I also play college soccer and am about to return to school. So this situation is very scary for me. I started noticing this "air hunger" on June 28, so I've had it for about 6 weeks. I first noticed this happening while I was on my cruise trip and we were in Puerto Rico. We went snorkeling that day and a little bit after that I noticed this breathing thing occurring. I have to "fight" to get a breath, I crave that deep satisfying breath, I can only sometimes get that deep breath, I normally try to get the deep breath through my mouth (I don't know why but it makes it easier it seems), I also have chest/heart pain that is on my left side and makes me want to try to massage my heart, I have had a fast heart rate from this which I think is just caused by anxiety bc of not being able to breathe right. I have had all bloodwork done and everything seems fine. I have had a lot of heart exams done as well. I wore a heart monitor for 2 weeks and everything seems fine. I have an average heart rate of 90 which is higher than it used to be. I have a feeling I'm dealing with some anxiety because of these symptoms, but I don't believe it is causing it. I have not seen a pulmonologist, ENT, or GI. My doctors all are trying to write this off as I know most of you have experienced also. They are trying to pin it on stress and anxiety of course. I was prescribed lexapro which is an anti-depressant and anxiety medication. I am very hesitant to try it as messing with my neurotransmitters scares me a lot and I don't believe this will fix the problem. I also have a therapy appointment in a few weeks. Have any of you tried anxiety medication or therapy to help this? I am wondering if it is mainly a mental thing as all of us have gone through so many examinations and all come back normal. Let's please keep this forum going, so we can maybe solve this!! Please give me any advice 🙂

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Hello, @oliviah9. oliviah9

I hope by now they have figured out the cause of your symptoms. Please update if you can. I had developed shortness of breath and chest pain and was told it was anxiety. Three weeks later I was rushed to the hospital with massive pulmonary emboli. As you had gone diving, you may have developed something in your lungs or the long trip may have caused a DVT that has broken up and moved towards your heart and lungs. My heart rate had increased, which was normally 60 or less, but they didn’t attribute anything to the heart rate that increased over 100. I did end up developing anxiety, as I had struggled so badly to breathe. Medicine may help anxiety, but I found the best thing was to practice various techniques that I learned from my PTSD specialist. Most of it is just a form of distracting you from the moment that is causing you anxiety. Some of the strategies are to close your eyes and think of some place that is relaxing and then start gong through a process telling yourself that you can feel your shoulders relaxing, your arms, etc all the way to your toes. Then focus on your heart beat and breathing, still picturing that relaxing environment. Sometimes you can’t sit still and close your eyes to go through the entire process, so a quick distracting technique is to look for a certain number of visuals things, smells, sounds, etc. You can also count in your head and take breaths as you do it. I’ll count 1-2-3 and take a breath and hold then breath out at the same 1-2-3 rate. It helps control my breathing so I don’t hyperventilate and panic. I don’t like how medicines make me feel, but sometimes they are helpful during rough times when nothing else works.

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@agbrogers

Hello, @oliviah9. oliviah9

I hope by now they have figured out the cause of your symptoms. Please update if you can. I had developed shortness of breath and chest pain and was told it was anxiety. Three weeks later I was rushed to the hospital with massive pulmonary emboli. As you had gone diving, you may have developed something in your lungs or the long trip may have caused a DVT that has broken up and moved towards your heart and lungs. My heart rate had increased, which was normally 60 or less, but they didn’t attribute anything to the heart rate that increased over 100. I did end up developing anxiety, as I had struggled so badly to breathe. Medicine may help anxiety, but I found the best thing was to practice various techniques that I learned from my PTSD specialist. Most of it is just a form of distracting you from the moment that is causing you anxiety. Some of the strategies are to close your eyes and think of some place that is relaxing and then start gong through a process telling yourself that you can feel your shoulders relaxing, your arms, etc all the way to your toes. Then focus on your heart beat and breathing, still picturing that relaxing environment. Sometimes you can’t sit still and close your eyes to go through the entire process, so a quick distracting technique is to look for a certain number of visuals things, smells, sounds, etc. You can also count in your head and take breaths as you do it. I’ll count 1-2-3 and take a breath and hold then breath out at the same 1-2-3 rate. It helps control my breathing so I don’t hyperventilate and panic. I don’t like how medicines make me feel, but sometimes they are helpful during rough times when nothing else works.

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@aelcome to Mayo Clinic Connect. Good morning. You make a great statement, medications aren't always the answer. To me it's worth it, at least for a time to give them a try, at least at the beginning. SOB will often be accompanied by anxiety. How can it not. One minute you are just going about your business and the next you are struggling to breathe. Learning different breathing exercises is a brilliant way to go about gaining some control over your body. Which ones have you tried? Which ones work the best for you?

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This is me to a T! I quit going to the local doctors here because they have no clue what it is and throw me a new inhaler and send me on my way. I really really want some relief from this.

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@skeezzee1975

This is me to a T! I quit going to the local doctors here because they have no clue what it is and throw me a new inhaler and send me on my way. I really really want some relief from this.

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ask to have the new advanced system where they put wires in your lungs to hold open the valves, new advanced method. ask your doctor for name and places they insert these wire, very easy and relief is automatic. good luck.

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@tonyagregg did you ever get any answers?? I feel like you just told my entire story...even down to the fact that I have Gilbert’s (Diagnosed in 2007)...I feel less crazy knowing I’m not the only person who’s experienced this. My SOB started in 2016 and is intermittent and exactly like you described. I can’t find answers. I, too, have taken Prilosec. I can’t find much of a pattern. It’s just uncomfortable and strange to be so vague and mysterious. When I read your post I felt like you were describing exactly what I’ve gone through. Any other help that you’ve received since your post? Thanks!

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@joangma

ask to have the new advanced system where they put wires in your lungs to hold open the valves, new advanced method. ask your doctor for name and places they insert these wire, very easy and relief is automatic. good luck.

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there is also a all natural cancer cure now in arizona, so you do not have to go to Mexico anymore.

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