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.

Hello again
As i said im from iran and there is kind of treatment for any sickness that called Traditional medicine
Based on 4 Temperament in body
I dont know in europe and america something same of this are exist
This treatment believe any problem has relation with one or more part of body
And they uasually use Medicinal Plants for treat

REPLY

This has been the best forum/conversation I have found since experiencing my random SOB early January. Thank you Gabe and others for continuing this conversation. I am mid 30's, been healthy and athletic all of my life, and started experiencing breathing issues In January. I was diagnosed with hypersomnia 10 years ago which requires me to be on medication to help me stay awake. I finally started taking medication consistently last July, all was well, then started a low dose of Sertraline in November for anxiety. Experienced intense/exhausting yawning for the first week (as I have heard can be a side effect), then was fine after week 2. About 7 weeks after starting, I traveled internationally (to a drier desert climate), and about a week after arriving I started noticing I was unable to complete a deep breath. If I could get myself to yawn, I would feel a bit of relief, but only for minutes. I found this forum soon after and decided to try Buteyko breathing exercises to see if that could help, but it felt difficult to try when I was experiencing an "episode" so I haven't been able to be consistent. One evening I felt my heart pounding, and used my child's stethoscope to have a listen and heard my heart beating in 4s. I was calm and relaxed so this was a surprise. After some time it regulated, but every time I took a deep breath, it would skip and go back to beating in 4s. That felt pretty scary because I believe I am mindful and in-tune with my body and couldn't figure out why all of this was happening. After almost 6t weeks, I couldn't seem to "control" what was happening so I saw a pulmonary doctor who ran some breathing tests/ chest x-rays/etc. She noticed some dilatation of the airways which could indicate possible allergies- so offered an inhaler morning/night- after that didn't help, I started on oral Prednisone to see if that could help my lungs get some relief. After 10 days that didn't seem to help either. While seeing her, I was also seeing a Cardiologist, who found that my heart is indeed beating more than it should, but no actual issues with the heart itself. Stress/exercise test showed that when I was in fast motion, my heart would beat normally, but as soon as I stopped it would start doubling again. Unfortunately, I had to travel back home to the US so I brought my paperwork and saw a Cardiologist here who felt I should be put on a beta-blocker and see what happens. I have not started it because I would like to get an opinion from my primary care doctor and my neurologist to see if they think the combination of low dose of Sertraline could be the cause (this is the only difference in my routine besides traveling to a dryer climate, no history of Covid or breathing/heart issues prior to this). Blood tests showed low-phosphorus levels which as I read is "critical for breathing".
It feels difficult seeing multiple doctors to try to figure out what is happening and wish there is was someone I could see that could go over all of my symptoms, tests, etc and see if they had any ideas... maybe an internal medicine doctor? In the meantime, I was hoping that there was a list here of what to try/ask for from providers when dealing with this shortness/hunger for breath. So far I have had: chest x-ray/CT scan, breath test (which I couldn't compete because I couldn't get a decent breath out), pretty thorough blood tests, ECG, Echocardiogram, exercise stress test, 24 hour Holter monitor.

Any other ideas on what more to look into/test/get support for that I am missing? I appreciate anyone taking the time to read this super long post (I apologize 🙂

REPLY
@mostafamahjoori

Hello again
As i said im from iran and there is kind of treatment for any sickness that called Traditional medicine
Based on 4 Temperament in body
I dont know in europe and america something same of this are exist
This treatment believe any problem has relation with one or more part of body
And they uasually use Medicinal Plants for treat

Jump to this post

Thank you @mostafamahjoori, I hadn't heard of that, but it may be something else here in the US

REPLY

My SOB was getting worse and I was getting worried. My doc gave me an Albuterol inhaler that did nothing. Then he gave me 20g of oral prednisone. It was like a miracle. I could breath deep and fully and was able to totally forget about breathing. The rx is only for 5 days to see if it works. My last day is tomorrow. I did find a Chinese Medicine herbal mixture that has some good science behind it. They say it works as well as prednisone for breathing with no bad side effects. It's call ASHMI. There are a lot of professional talking about it so I am going to ask my Doc about trying it. I can buy it online already in the formula. Has anyone ever tried this?

REPLY

I am updating on this post. I agree that finding this post has been the best. Hearing all the experiences validates what we're feeling, and some of what my doctors don't seem to understand. I've done the chest x-ray, some bloodwork, and just got a lung function test done yesterday. Well, that was a bit stressful and left me feeling tired and with some soreness in my back. I am unsure how and what it is testing. I failed the same test several times, and the technician kept having me repeat it until I got "good" numbers. So now I'm wondering if my results will just say "good." Guess if my breathing is "good" 1 out 6 times, the doctors think that is okay. I still don't have any real answers. Still unsure about my anxiety and my shortness of breath. The best way to describe it is "that fulfilling feeling at the end of a good breath", or at the end of a good yawn. I am also wondering if wearing a mask for 8 hours straight for the last 6 months straight has affected my lung function & strength. I would always feel out of breath at the end of the day and knew that I was very likely breathing through my open mouth under my mask all day. Anybody else?

REPLY
@camomma

I am updating on this post. I agree that finding this post has been the best. Hearing all the experiences validates what we're feeling, and some of what my doctors don't seem to understand. I've done the chest x-ray, some bloodwork, and just got a lung function test done yesterday. Well, that was a bit stressful and left me feeling tired and with some soreness in my back. I am unsure how and what it is testing. I failed the same test several times, and the technician kept having me repeat it until I got "good" numbers. So now I'm wondering if my results will just say "good." Guess if my breathing is "good" 1 out 6 times, the doctors think that is okay. I still don't have any real answers. Still unsure about my anxiety and my shortness of breath. The best way to describe it is "that fulfilling feeling at the end of a good breath", or at the end of a good yawn. I am also wondering if wearing a mask for 8 hours straight for the last 6 months straight has affected my lung function & strength. I would always feel out of breath at the end of the day and knew that I was very likely breathing through my open mouth under my mask all day. Anybody else?

Jump to this post

Thanks for the update @camomma. It's always good to hear how people who are doing especially who have previously commented. I certainly didn't expect this post to blow up like it has over the few couple of years! I never realized how much of a widespread issue this is, but glad that we're all here trying to help each other out.

I also had a lung function test some time back, and usually it'll check lung capacity and your ability to exhale forcefully and volume of air you inhale. It's a common way to check for asthma, but can also check for other things like COPD. I had normal numbers though they were on the lower end of that. I can't remember what that number was, but it had to do with tidal volume and capacity of the lungs holding air, and also velocity of air when exhaling. It will be interesting when you get those results back.

I may have asked this before, but have you looked into breathing exercises like the Buteyko method or other methods? It helps me to stabilize the air hunger feeling so that I don't feel the "empty lung" feeling like I used to.

Wearing a mask may have an effect on your breathing, but hard to tell. I don't know a whole lot of what effect masks have on breathing over the long term, but if you can breathe through your nose as much as possible even with a mask on, that could help.

REPLY
@lu2

This has been the best forum/conversation I have found since experiencing my random SOB early January. Thank you Gabe and others for continuing this conversation. I am mid 30's, been healthy and athletic all of my life, and started experiencing breathing issues In January. I was diagnosed with hypersomnia 10 years ago which requires me to be on medication to help me stay awake. I finally started taking medication consistently last July, all was well, then started a low dose of Sertraline in November for anxiety. Experienced intense/exhausting yawning for the first week (as I have heard can be a side effect), then was fine after week 2. About 7 weeks after starting, I traveled internationally (to a drier desert climate), and about a week after arriving I started noticing I was unable to complete a deep breath. If I could get myself to yawn, I would feel a bit of relief, but only for minutes. I found this forum soon after and decided to try Buteyko breathing exercises to see if that could help, but it felt difficult to try when I was experiencing an "episode" so I haven't been able to be consistent. One evening I felt my heart pounding, and used my child's stethoscope to have a listen and heard my heart beating in 4s. I was calm and relaxed so this was a surprise. After some time it regulated, but every time I took a deep breath, it would skip and go back to beating in 4s. That felt pretty scary because I believe I am mindful and in-tune with my body and couldn't figure out why all of this was happening. After almost 6t weeks, I couldn't seem to "control" what was happening so I saw a pulmonary doctor who ran some breathing tests/ chest x-rays/etc. She noticed some dilatation of the airways which could indicate possible allergies- so offered an inhaler morning/night- after that didn't help, I started on oral Prednisone to see if that could help my lungs get some relief. After 10 days that didn't seem to help either. While seeing her, I was also seeing a Cardiologist, who found that my heart is indeed beating more than it should, but no actual issues with the heart itself. Stress/exercise test showed that when I was in fast motion, my heart would beat normally, but as soon as I stopped it would start doubling again. Unfortunately, I had to travel back home to the US so I brought my paperwork and saw a Cardiologist here who felt I should be put on a beta-blocker and see what happens. I have not started it because I would like to get an opinion from my primary care doctor and my neurologist to see if they think the combination of low dose of Sertraline could be the cause (this is the only difference in my routine besides traveling to a dryer climate, no history of Covid or breathing/heart issues prior to this). Blood tests showed low-phosphorus levels which as I read is "critical for breathing".
It feels difficult seeing multiple doctors to try to figure out what is happening and wish there is was someone I could see that could go over all of my symptoms, tests, etc and see if they had any ideas... maybe an internal medicine doctor? In the meantime, I was hoping that there was a list here of what to try/ask for from providers when dealing with this shortness/hunger for breath. So far I have had: chest x-ray/CT scan, breath test (which I couldn't compete because I couldn't get a decent breath out), pretty thorough blood tests, ECG, Echocardiogram, exercise stress test, 24 hour Holter monitor.

Any other ideas on what more to look into/test/get support for that I am missing? I appreciate anyone taking the time to read this super long post (I apologize 🙂

Jump to this post

Hey @lu2, welcome to the forum and no apology necessary! I like to hear about people's experiences because I believe that sharing experiences with each other helps everyone and gives us good ideas on how we can improve our health and try different things to help our condition.

One thing you mentioned that stood out to me was that you said you couldn't complete the breath test because you couldn't get a decent breath out. When I had a lung function test, they had me breathe out through a tube and measured the volume and velocity of air. People with obstructions or asthma will have a low volume of air come out and usually at low velocity than normal. Was that the sort of test you took, or something different? Nonetheless that could be telling of something because for me, even though I get the air hunger feeling, I was still able to pass the lung function test just fine.

Have you done a sleep study? If not, that might be worth a go.

REPLY
@gabrielm

Hey @lu2, welcome to the forum and no apology necessary! I like to hear about people's experiences because I believe that sharing experiences with each other helps everyone and gives us good ideas on how we can improve our health and try different things to help our condition.

One thing you mentioned that stood out to me was that you said you couldn't complete the breath test because you couldn't get a decent breath out. When I had a lung function test, they had me breathe out through a tube and measured the volume and velocity of air. People with obstructions or asthma will have a low volume of air come out and usually at low velocity than normal. Was that the sort of test you took, or something different? Nonetheless that could be telling of something because for me, even though I get the air hunger feeling, I was still able to pass the lung function test just fine.

Have you done a sleep study? If not, that might be worth a go.

Jump to this post

Thank you Gabe! Sounds like the "breathing test" I did was the same as the lung function test you described. I feel like I couldn't get out the needed air because I was in the thick of an hunger for breath "episode" as I call it. I feel these episodes happen for days (say 5-7) and then for MAYBE for 2 days it seems to ease up, then return randomly again. I might have forgot to mention, the pulmonary doctor I saw had me also take 2 kinds of inhalers alone with the oral lung steroid, which didn't provide relief as well.
And yes about the sleep study! I actually was a very sleepy child/student growing up (even with ADHD), and in my mid-twenties finally went for a sleep study because my sister also had one and was diagnosed with borderline narcolepsy. From the sleep study it was clear that I have hypersomnia and can fall into a deep sleep easily and quickly compared to others, and just overall sleepiness. The study didn't show any other type of sleep issues like sleep apnea besides excessive sleepiness (hypersomnia).
I honestly feel that my breathing is impacting my heart or the other way around and I really wish I could get down to the bottom of it. I had no issues with my breathing or heart before January. I am seeing another cardiologist in a few weeks thankfully for another opinion. I really hope to figure out what could be triggering this hunger for breath so I can go back to how I was a few months ago, I don't wish this feeling on anyone. Thank you again for your reply!

REPLY
@christmaseveryday

My SOB was getting worse and I was getting worried. My doc gave me an Albuterol inhaler that did nothing. Then he gave me 20g of oral prednisone. It was like a miracle. I could breath deep and fully and was able to totally forget about breathing. The rx is only for 5 days to see if it works. My last day is tomorrow. I did find a Chinese Medicine herbal mixture that has some good science behind it. They say it works as well as prednisone for breathing with no bad side effects. It's call ASHMI. There are a lot of professional talking about it so I am going to ask my Doc about trying it. I can buy it online already in the formula. Has anyone ever tried this?

Jump to this post

I was put on prednisone a couple months ago for an undetermined allergic relation for 10 days. Reading your SOB experience with prednisone might have something to do with a noticeable improvement in my breathing. I have also been studying breath videos to learn more efficient breathing technique. I live at 9500' and no longer acclimate at altitude. I will be talking to my doctor about this at my next appointment. I have also contacted my acupuncturist about her knowledge of the ASHMI. Ill update as I learn more. Thanks and good luck. Breathing seems to be a key factor in our overall health. Who knew? lol

REPLY
@lu2

Thank you Gabe! Sounds like the "breathing test" I did was the same as the lung function test you described. I feel like I couldn't get out the needed air because I was in the thick of an hunger for breath "episode" as I call it. I feel these episodes happen for days (say 5-7) and then for MAYBE for 2 days it seems to ease up, then return randomly again. I might have forgot to mention, the pulmonary doctor I saw had me also take 2 kinds of inhalers alone with the oral lung steroid, which didn't provide relief as well.
And yes about the sleep study! I actually was a very sleepy child/student growing up (even with ADHD), and in my mid-twenties finally went for a sleep study because my sister also had one and was diagnosed with borderline narcolepsy. From the sleep study it was clear that I have hypersomnia and can fall into a deep sleep easily and quickly compared to others, and just overall sleepiness. The study didn't show any other type of sleep issues like sleep apnea besides excessive sleepiness (hypersomnia).
I honestly feel that my breathing is impacting my heart or the other way around and I really wish I could get down to the bottom of it. I had no issues with my breathing or heart before January. I am seeing another cardiologist in a few weeks thankfully for another opinion. I really hope to figure out what could be triggering this hunger for breath so I can go back to how I was a few months ago, I don't wish this feeling on anyone. Thank you again for your reply!

Jump to this post

@lu2 It’s actually a good thing you had an episode during the test because it provides sort of “proof” or at least something for doctors to go by when they’re examining you. I remember hoping I would have an episode so the doctors could see, but I think I was feeling pretty decent that day.
How would you say your breathing affects your heart? That’s interesting because for a while I was having these random heart palpitations every now and then. This happened a couple of years ago but I don’t know if it had to do with my breathing issue. But still a point of curiosity nonetheless.

Do you know if you have any esophageal inflammation?

REPLY
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