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.

@tatianar

Wow, that's amazing! Definitely something to consider for myself now, I think that's where my road will be headed too. I just get nervous about the shots, because of possible anaphylaxis 😬 but the Dr's know how to handle that I guess if it does happen..

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@tatianar- I don't blame you for being nervous about the shots. I'm sure that others have had all sorts of reactions. I'm also sure that they have everything they need to stop any bad reaction immediately. This is why there is a waiting time before you can leave after the shots are given. Have you ever had a reaction to anything that gave you a severe reaction?

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@ecassidymitchell

The allergy shots helped your breathing?

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Absolutely!

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@tatianar

I have actually one more question also. Did they try giving you a medication like Singulair first before starting the allergy shots?

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No, they did not. Would have tried if it was offered. That said, with as many allergies as I have, not sure it would have helped.

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@tatianar

Hi, I am interested to know. What were your daily dosages you were taking of the antihistamines, and were you taking multiple kinds in 1 day? What was the daily schedule fot that? I am desperate to try anything. Everything in your post sounds exactly like me.

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I think it took about a month to really feel like things were on track. But little signs of improvement started popping up that very first week. Most of the MCAS info I started with, including medications and dosages, I found here at this link. When I first read it, it sounded like the doctor there had literally written out my entire medical history and extensive list of symptoms. He also offered a detailed explanation of the condition, the tests to ask the doctor for, medications and diet that could be helpful. I also found it helpful to read this link regarding quercetin being more effective than cromolyn as a mast cell stabilizer.

I would encourage you to keep fighting for answers. I sure hope you find something that helps you feel better soon. 🙂
P.S. It wouldn't let me submit this with links... so I will DM them if it will allow that.

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@anned

I think it took about a month to really feel like things were on track. But little signs of improvement started popping up that very first week. Most of the MCAS info I started with, including medications and dosages, I found here at this link. When I first read it, it sounded like the doctor there had literally written out my entire medical history and extensive list of symptoms. He also offered a detailed explanation of the condition, the tests to ask the doctor for, medications and diet that could be helpful. I also found it helpful to read this link regarding quercetin being more effective than cromolyn as a mast cell stabilizer.

I would encourage you to keep fighting for answers. I sure hope you find something that helps you feel better soon. 🙂
P.S. It wouldn't let me submit this with links... so I will DM them if it will allow that.

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Yes vould you please send me a private message with the link? I would be so grateful!!! I could even send my email address if thr private message doesn't work.

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@merpreb

@anned- Welcome to Mayo Clinic Connect. Thank you for posting your story in such wonderful detail. This is what Connect is all about, offering suggestions, relaying successes, and supporting others. What a ride you have had, and fortunately you have had a positive attitude and have fought for your health. I just read something recently that said, "Never let go until you get what you need to be. Until you do what you need to do." You never gave up and after a year you can breathe!

I love that you talked to your doctor about what you wanted to try and that she listened!. It sounds as if you have done a lot of research about possibilities of success with your SOB. Will you tell this group how you found out about MCAS? (MCAS is a condition in which the patient experiences repeated episodes of the symptoms of anaphylaxis – allergic symptoms such as hives, swelling, low blood pressure, difficulty breathing, and severe diarrhea. High levels of mast cell mediators are released during those episodes.)? What led you to this and the three otc drugs?

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I'm so grateful that the internet exists because otherwise I feel certain I'd STILL be looking for answers. I have had so many awful symptoms my whole entire life but honestly I've just learned to live with many of them for the most part. Until the awful inability to get a good deep breath. LOL It wasn't even the worst symptom I had, but it was driving me crazy. I have seen so many doctors over the years some great and some... well...less than great. I was really nervous to talk to my doctor because of that. I was so relieved when she was open-minded and willing to hear me out.

I found out about MCAS when I was combing through med forums trying to find out why I couldn't breathe. The more I looked the more people I found complaining of the same air hunger symptom and no answers for why. I think I first saw mast cell activation syndrome mentioned in regards to anaphylaxis and I was like, well its's never been that bad for me but it does feel something like a severe allergic reaction. The words mast cell finally clicked something in my brain though, because my son was born with maculopapular cutaneous mastocytosis, a mast cell condition. So I had read quite a bit about that but for some reason I had never connected in my brain the similarities between his condition and mine. But hey, neither did the doctors, right? And they get paid to do that. LOL As I began to read the symptoms list for MCAS, I was shocked to count how many I had always lived with and suddenly a whole lot of stuff began making sense for me. So many different parts of my body, like respiratory, musculoskeletal, digestive, genitourinary, cardiovascular, skin, neurological, blood and coagulation and immune system, had all seemed to be individually randomly going haywire and failing me inexplicably. Turns out it was actually all being caused by one main problem. Some of those symptoms had been life threatening at times and very debilitating on an ongoing basis but none made feel quite as crazy and dig so freaking hard for answers, as the air hunger and inability to get a good deep breath. I agree that I have done a lot of research regarding all this. I always say, no matter how amazing your doctor is, at the end of the day, nobody has to live in your body except for you. We all deserve to live healthy and well. We should all insist on being respectfully and compassionately heard by our doctors and feel the freedom to push until they get us the answers we so desperately need. It's your life, your health and you are worth it all.

P.S. Interestingly, my oldest daughter has Multiple Sclerosis and also has many symptoms in common with her brother and I, and I know there's research being done regarding the role of mast cells in Multiple Sclerosis. And no, I don't think I also have MS, just in case anyone reading this just thinks I am just a self-diagnosing loon now. LOL I do, however, see connections there that seem impossible to ignore and I hope so much that researchers will continue to dig for answers.

P.P.S. Again I am not a Doctor and I obviously have nothing to gain from sharing my medical story but I do have a couple of the random links to the info that got me started learning about MCAS. I am a newbie here on this forum and it won't let me share them but I'm happy to DM them if anyone is interested.

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Would you please be able to share the exact regimen you have for the antihistamines you use? Like your daily schedule? I was going to write up a list to take with me to the drug store in the next day or so, im excited to see if this will work for me too!

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@anned

I'm so grateful that the internet exists because otherwise I feel certain I'd STILL be looking for answers. I have had so many awful symptoms my whole entire life but honestly I've just learned to live with many of them for the most part. Until the awful inability to get a good deep breath. LOL It wasn't even the worst symptom I had, but it was driving me crazy. I have seen so many doctors over the years some great and some... well...less than great. I was really nervous to talk to my doctor because of that. I was so relieved when she was open-minded and willing to hear me out.

I found out about MCAS when I was combing through med forums trying to find out why I couldn't breathe. The more I looked the more people I found complaining of the same air hunger symptom and no answers for why. I think I first saw mast cell activation syndrome mentioned in regards to anaphylaxis and I was like, well its's never been that bad for me but it does feel something like a severe allergic reaction. The words mast cell finally clicked something in my brain though, because my son was born with maculopapular cutaneous mastocytosis, a mast cell condition. So I had read quite a bit about that but for some reason I had never connected in my brain the similarities between his condition and mine. But hey, neither did the doctors, right? And they get paid to do that. LOL As I began to read the symptoms list for MCAS, I was shocked to count how many I had always lived with and suddenly a whole lot of stuff began making sense for me. So many different parts of my body, like respiratory, musculoskeletal, digestive, genitourinary, cardiovascular, skin, neurological, blood and coagulation and immune system, had all seemed to be individually randomly going haywire and failing me inexplicably. Turns out it was actually all being caused by one main problem. Some of those symptoms had been life threatening at times and very debilitating on an ongoing basis but none made feel quite as crazy and dig so freaking hard for answers, as the air hunger and inability to get a good deep breath. I agree that I have done a lot of research regarding all this. I always say, no matter how amazing your doctor is, at the end of the day, nobody has to live in your body except for you. We all deserve to live healthy and well. We should all insist on being respectfully and compassionately heard by our doctors and feel the freedom to push until they get us the answers we so desperately need. It's your life, your health and you are worth it all.

P.S. Interestingly, my oldest daughter has Multiple Sclerosis and also has many symptoms in common with her brother and I, and I know there's research being done regarding the role of mast cells in Multiple Sclerosis. And no, I don't think I also have MS, just in case anyone reading this just thinks I am just a self-diagnosing loon now. LOL I do, however, see connections there that seem impossible to ignore and I hope so much that researchers will continue to dig for answers.

P.P.S. Again I am not a Doctor and I obviously have nothing to gain from sharing my medical story but I do have a couple of the random links to the info that got me started learning about MCAS. I am a newbie here on this forum and it won't let me share them but I'm happy to DM them if anyone is interested.

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@anned, I'd like to add my welcome. Given your experiences, you may wish to also take part in these group discussions on Mayo Clinic Connect. I'm sure you would have much to contribute and support to offer.

- Mast Cell Activation https://connect.mayoclinic.org/discussion/mast-cell-activation/
- Multiple Sclerosis (MS) - please introduce yourself https://connect.mayoclinic.org/discussion/multiple-sclerosis-ms-please-introduce-yourself/

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@anned

I think it took about a month to really feel like things were on track. But little signs of improvement started popping up that very first week. Most of the MCAS info I started with, including medications and dosages, I found here at this link. When I first read it, it sounded like the doctor there had literally written out my entire medical history and extensive list of symptoms. He also offered a detailed explanation of the condition, the tests to ask the doctor for, medications and diet that could be helpful. I also found it helpful to read this link regarding quercetin being more effective than cromolyn as a mast cell stabilizer.

I would encourage you to keep fighting for answers. I sure hope you find something that helps you feel better soon. 🙂
P.S. It wouldn't let me submit this with links... so I will DM them if it will allow that.

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Hi anned! I'd love to know also as a few other here, what you are taking that helped? Was it the Claritin and Zyrtec twice a day? I'm starting to lose it mentally and physically. It's been 1 1/2 years since this shortness of breath started. I've have every test imaginable, 3 specialists give up on me and tell me they have no idea and go to the Mayo clinic. I can't afford to go there, and it's ridiculous that doctors aren't will to help their patients and we're disposable. ugh! I'm so frustrated and in pain every day. Sorry for venting, it's just so darn tough to live like this daily and not get the time of day from doctors.

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I had and have the same problem. I had endoscopy and colonoskopy, nothing there. Because l had also pain in my hearth area l also had my hearth tested. Coroner CT normal. My lipid tests high. I have been using drugs for hypothyroidism after radioactive iodine treatment but they are stable. I am tired of not finding any reason for that and being accused of it to be physiological. I am nearly sure that it is not the case because symptoms can occur anytime like when l am having fun with my children or watching beautiful rain in nature.

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