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.

@amber1234

Did you try anxiety medication ? You may try magnesium supplements first to see if it does anything . May take a few days before you see any results.

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Ambar I sent u a private message 🙏🏽🙏🏽

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@debwks0504

Not seen a dr specifically for this. I seemed to get what appeared to be sinus infections quite a few times a year, ending up on steroids, and antibiotics. Those drugs helped, But I also, sometimes during these sinus episodes, feel my asthma meds (asthma always appeared worse at this time) -Advair, and levalbuterol did NOT help the breathing issue. I felt tightness between the center of my chest and along the esophagus to my throat. My lungs were always seen to be clear, blood work fine - and often little congestion in my sinuses. I, often now, have to yawn to get a deep cleansing breath, many times during the day. Feels great for a moment - then the air hunger starts again. I feel I DO have a minor issue w/GERD, but rarely feel any acid moving up from my stomach, and don’t feel the GERD meds have done anything for this breathing issue, The only reason I started on the GERD meds is because my allergy dr sent me to a gastroenterologist, who found my vitals normal, lungs normal, spirometry normal. So I can’t, and the drs can’t seem to help with the issue. My main issues are yawning to get deep breath, and not being able to sleep flat on the bed (side sleeping helps SOME). I have had exercise induced asthma (along with allergens), lots of bronchitis growing up, never had pneumonia that I know of, and have never been hospitalized for asthma issues. There are times I feel maybe anxiety may have a small part in it, Who knows.

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Hi @debwks0504, Do you think the breathing issue is related to the sinus and asthma issues? I know asthma can cause various breathing sensations like suffocation, air hunger, obstructed air ways, etc. How long have you been dealing with the air hunger?

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@debwks0504

Not seen a dr specifically for this. I seemed to get what appeared to be sinus infections quite a few times a year, ending up on steroids, and antibiotics. Those drugs helped, But I also, sometimes during these sinus episodes, feel my asthma meds (asthma always appeared worse at this time) -Advair, and levalbuterol did NOT help the breathing issue. I felt tightness between the center of my chest and along the esophagus to my throat. My lungs were always seen to be clear, blood work fine - and often little congestion in my sinuses. I, often now, have to yawn to get a deep cleansing breath, many times during the day. Feels great for a moment - then the air hunger starts again. I feel I DO have a minor issue w/GERD, but rarely feel any acid moving up from my stomach, and don’t feel the GERD meds have done anything for this breathing issue, The only reason I started on the GERD meds is because my allergy dr sent me to a gastroenterologist, who found my vitals normal, lungs normal, spirometry normal. So I can’t, and the drs can’t seem to help with the issue. My main issues are yawning to get deep breath, and not being able to sleep flat on the bed (side sleeping helps SOME). I have had exercise induced asthma (along with allergens), lots of bronchitis growing up, never had pneumonia that I know of, and have never been hospitalized for asthma issues. There are times I feel maybe anxiety may have a small part in it, Who knows.

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Sinus infections/inhalational allergies do have relationships with GERD so it's possible that there was a causal relationship there. You mention sleeping on your side and it's likely that you find it easier sleeping on your left side than your right. There are a ton of factors which doctors can't account for in testing. They can't check changes in pulmonary surfactant which might impact gas exchange in the lungs and they can't account for every factor which will affect the hemoglobin oxygen dissociation curve, reducing delivery of oxygen to tissues. Those are just two examples of the flaws in medical assurances that problems must relate to anxiety or other psychological issues. I have finally been able to prove to my brother, who had long believed the psychological opinions relating to my respiratory failure, that my condition was caused by liver failure nine years ago; he was the one person who witnessed my skin having turned orange because of my livers inability to eliminate bilirubin at the time.

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@gabrielm

Hi @debwks0504, Do you think the breathing issue is related to the sinus and asthma issues? I know asthma can cause various breathing sensations like suffocation, air hunger, obstructed air ways, etc. How long have you been dealing with the air hunger?

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I have had asthma all my life, the air hunger issue, as I recall, seems to start back in 2012-2013. There were a lot of stress issues happening right then, and I’ve not gotten over it since. I remember catching myself during the day at work, raising my shoulders and yawning to get the deep breath, and people looked at me funny, so I tried to hid it. As I said before, I have had multiple allergy tests over the years, tried different asthma meds, but when I started feeling really tired and run down, and the asthma meds were NOT working like they were supposed to, I would go to the dr and get prednisone & an antibiotic. Which helped, until I got it again a few months later. I was starting to think the prednisone was helping but that I may be taking too many antibiotics, because my sinuses were clear, but my nose was soooo swollen inside and raw to the point of painful (completely blocked when laying down), that’s the prednisone did help that. This was a regular thing 2-3 times/year, Which is why my dr wanted to explore the
GERD thing. Omeprezol seemed to help enough that I went off the Advair for about 6 mos?? . This month, I went back on Advair, because it seemed to help with the breathing while laying down. Yes, the left side is easier to breath than the right! So right now, I still don’t have a resolution as to why I yawn to get a deep breath, and as someone else said, some days are better than others. I can’t pinpoint what it causes it. I do eat a lot of eggs, but don’t show allergy to them in tests. Man I hate to do it, I love eggs, but I may go off them for a month a see if there’s a difference. You get to the point where you just have to try to find a solution for yourself - there’s certainly not a lot of info out there about this.

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@debwks0504

I have had asthma all my life, the air hunger issue, as I recall, seems to start back in 2012-2013. There were a lot of stress issues happening right then, and I’ve not gotten over it since. I remember catching myself during the day at work, raising my shoulders and yawning to get the deep breath, and people looked at me funny, so I tried to hid it. As I said before, I have had multiple allergy tests over the years, tried different asthma meds, but when I started feeling really tired and run down, and the asthma meds were NOT working like they were supposed to, I would go to the dr and get prednisone & an antibiotic. Which helped, until I got it again a few months later. I was starting to think the prednisone was helping but that I may be taking too many antibiotics, because my sinuses were clear, but my nose was soooo swollen inside and raw to the point of painful (completely blocked when laying down), that’s the prednisone did help that. This was a regular thing 2-3 times/year, Which is why my dr wanted to explore the
GERD thing. Omeprezol seemed to help enough that I went off the Advair for about 6 mos?? . This month, I went back on Advair, because it seemed to help with the breathing while laying down. Yes, the left side is easier to breath than the right! So right now, I still don’t have a resolution as to why I yawn to get a deep breath, and as someone else said, some days are better than others. I can’t pinpoint what it causes it. I do eat a lot of eggs, but don’t show allergy to them in tests. Man I hate to do it, I love eggs, but I may go off them for a month a see if there’s a difference. You get to the point where you just have to try to find a solution for yourself - there’s certainly not a lot of info out there about this.

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Yeah I agree that there's not a whole of information about this. I don't think this specific issue has really been studied or understood, but hopefully as more people come forward with this, this would eventually lead to a deeper dive into possible causes and the respiratory system overall.

Do you have a deviated septum or other sinus issues? I know for me, I've noticed that when my sinuses are inflamed or stuffy, it does seem to cause a more pronounced and stronger feeling of air hunger whereas when my sinuses are clear, the air hunger seems to go down to near normal breathing.

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I do appreciate just having someone to discuss this with who is experiencing the same thing. I have mentioned this to my GP, my gastroenterologist, my asthma doctor. All, at first, were linking it to allergies, then the gastro: “there’s a link to breathing issues with GERD”- so we went that route (GERD meds). None of that helps this issue. And besides that didn’t your say you don’t have asthma, yet still have the air hunger??? However, I’ve noticed when I am not exerting myself, and am calm, the air hunger is practically non-existent. I get that you have to try different meds until you find something that works. Excluding my GP and my favorite dr in the whole world, you get this impression from other doctors that “it must be in your head, because your tests do not show issues”, though, of course, they don’t come out and actually say that. I do thank you for this enlightening discussion, it’s nice to prove to myself “it’s NOT in my head”…….Thank you! Debby Weeks, Spring Hill, FL

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I finally found a group that feels the exact same as me! I started having this from running as well/sports. I have had my lungs checked and they are perfectly fine. I only feel “satisfied” from my deep breathe if I yawn or if I hold my breathe long enough. I hope there is at some point a miracle cure because it really interrupts my daily life quite a bit. Are there any other things you guys suggest or do that helps relieve the feeling?

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@debwks0504

I do appreciate just having someone to discuss this with who is experiencing the same thing. I have mentioned this to my GP, my gastroenterologist, my asthma doctor. All, at first, were linking it to allergies, then the gastro: “there’s a link to breathing issues with GERD”- so we went that route (GERD meds). None of that helps this issue. And besides that didn’t your say you don’t have asthma, yet still have the air hunger??? However, I’ve noticed when I am not exerting myself, and am calm, the air hunger is practically non-existent. I get that you have to try different meds until you find something that works. Excluding my GP and my favorite dr in the whole world, you get this impression from other doctors that “it must be in your head, because your tests do not show issues”, though, of course, they don’t come out and actually say that. I do thank you for this enlightening discussion, it’s nice to prove to myself “it’s NOT in my head”…….Thank you! Debby Weeks, Spring Hill, FL

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Glad we all have a community of people who are very supportive and going through something similar so we can talk to each other. Makes the journey a little easier! I'm glad that the air hunger is nearly gone when you're calm. I think that means we can find ways to deal with any anxiety and find ways to be calm in any situation.

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@greent18

I finally found a group that feels the exact same as me! I started having this from running as well/sports. I have had my lungs checked and they are perfectly fine. I only feel “satisfied” from my deep breathe if I yawn or if I hold my breathe long enough. I hope there is at some point a miracle cure because it really interrupts my daily life quite a bit. Are there any other things you guys suggest or do that helps relieve the feeling?

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Hi @greent18, Were you checked for asthma during your lung check, whether the common kind, or sports asthma? I know some people who have exercise-induced asthma that can cause a feeling of shortness of breath or air hunger while exercising.

People have noted things that have helped them over the years. I know there are a lot of pages of comments on this thread, but might be worth it to skim through at least a few of them. I encourage people to do breathing exercises because that's what helped me. They may not help everyone, but I figure it doesn't hurt to try. I use the Buteyko method and that's what has helped me the most, as well as keeping up with regular exercise (with breath control).

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@esra

Hello friends, I am Esra, I am writing to you from Turkey. I have been dealing with this problem for 3 years. I went to the doctor, they said reflux, they said anxiety, but my problem did not improve, I used antibiotics, I used stomach medicine and it did not go away. I can't breathe deeply, I'm trying to breathe by yawning. There is pressure in the stomach
Diaphragm problems are mentioned in my research. On Wednesday, I will go to chest diseases, otorhinolaryngology and general surgery, I will write everything in detail, we suffer from the same problems, I do not want to lose our communication, I will write again. I hope you don't mind my typos.

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Hi Esra, my symptoms are very similar. I was initially told I had allergic asthma. But the medicine did not really help. I have also been told that acid reflux might be causing it but treating that didn’t help either.

I recently read about phrenic nerve damage and I believe its related to diaphragm. My next move will be seeing a neurologist to look into this.

Btw I am also from Turkey 🙂 aslinda dm atmak istiyodum baska bi turke denk geldigim icin ve turkiyede nasil ilerliyo bu isler diye. Ben amerikada yasiyorum. Konusmak istersen haber ver. Cok gecmis olsun.

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