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.

@yaramarthe

It was fresh mint leaves straight from the plant that’s why I still don’t understand how I got this reaction

Jump to this post

I did a google search on reactions to ingesting mint and learned that we can become allergic to it. Extreme reactions, which it sounds like you had, include anaphylaxis...which I had only associated with peanuts. I hope you will pursue investigating this and be careful, because the article I read listed a myriad of products that contain mint. Good luck! Nancy

REPLY
@nla4625

I did a google search on reactions to ingesting mint and learned that we can become allergic to it. Extreme reactions, which it sounds like you had, include anaphylaxis...which I had only associated with peanuts. I hope you will pursue investigating this and be careful, because the article I read listed a myriad of products that contain mint. Good luck! Nancy

Jump to this post

@nla4625- Good for you for doing this! Do you have any of the links to this info that you can share?

REPLY

Guys I have updates I’ve been taking duloxetine for 5 days now and I think it may be what’s causing the tingling sensation because I keep having the same sensation. Maybe it’s not the mint tea.

REPLY
@yaramarthe

Guys I have updates I’ve been taking duloxetine for 5 days now and I think it may be what’s causing the tingling sensation because I keep having the same sensation. Maybe it’s not the mint tea.

Jump to this post

@yaramarthe- Oooh, will you stop taking duloxetine?

REPLY

Hi everyone! I wanted to share my story hoping that it may help someone out there or at least give them some hope. I want to start out by saying I still have my "breathing issue" BUT I can say I feel about 60% better & have gotten back to enjoying my life again (something I never thought would be possible). I also want to say I believe that people here have a variety of different health problems causing similar symptoms on this thread & this is just my personal journey.

My breathing problem started April 19th 2020 while I was at work, I don't remember the exact minute that it started but at some point I felt like I wasn't getting enough oxygen. The term I can use to best describe this is "air hunger". I'm a nurse & work at a hospital so I instantly checked my oxygen level which was fine. It was though my brain was telling my body you need to take deeper satisfying breaths & fill your lungs all the way up in order to get enough air. I describe the sensation as the feeling you get when you're underwater & are on your last little bit of air & need to come up. The sensation of suffocation was there 24/7, every minute of every day except for when I was asleep. I checked myself into the ED thinking I had COVID (which was negative) & they sent me home. In the months that followed I struggled to get through every single day. I had nearly every test possible: Chest X ray x2, Pulmonary function test, EGD, 3 in depth blood work panels & Throat CT. I had Chiropractic adjustments, learned buteyko breathing & tried hypnotherapy four times. I had an allergy consult (revealing seasonal allergies which I take Claritin for). I saw GI doctor who performed an EGD which did reveal esophagitis, I took omeprazole for 2 months to heal that- but no change in my breathing. Grasping at straws, I saw a homeopathic doctor who did a full work up, the only thing found was low iron levels, I took iron supplements for a while but no improvement. I kept hitting dead ends & every doctor after finding no physical cause would say the same thing, "I think this is just anxiety". I didn't agree, but decided it was worth a shot so I took buspar for three months (did not help my breathing).

When this first began, I was obsessed with discovering the cause of my issue, as a nurse I couldn't wrap my mind around how I could feel like this for so long with no physical explanation & no break from the hell I was living in. My inability to solve the mystery coupled w the feeling that I was suffocating 24/7 caused me to spiral into a dark place. I have never been anxious or depressed in my entire life but I developed severe anxiety & depression. Multiple times in the first month, I contemplated suicide, as it seemed the only way to end what felt like a living nightmare. To people around me, I looked perfectly normal & it was frustrating to try to explain what I was experiencing to people. They would offer responses like "Just stop taking the deep breaths, it's not hard".

It's been 9 months & I am still conscious of my breathing & feel the need to take deeper than normal breaths to satisfy a sensation that returns again & again. I wish that I was writing this saying I am 100% better-- but though I am not "back to normal", I have made incredible progress & am feeling much better & I honestly feel that in time I will slowly find my way back to natural breathing. I have come to terms that this isn't one of those things that is going to disappear suddenly. Instead, my breathing gradually finds its balance as I stop trying to control it & one day I believe I will realize I am breathing without noticing ( the way it should be). After having every possible physical cause ruled out I truly believe that my breathing issue started from a place of severe stress/anxiety that I didn't even allow myself to feel which manifested into a physical symptom that has now become a habit/compulsion of sorts. The key to me moving forward & enjoying my life again, has been letting go of trying to "get better". I stopped searching for magic cures & researching for hours on the internet reading anecdotal stories. I notice that with each day I am able to focus on other things more & for the most part when I am busy & distracted with friends or work I hardly notice it all. It took me time to get to where I am. I spent months crying myself to sleep every night wondering why is this happening to me. Some things I do that have helped me on my journey to healing---I work out 4-5 times per week, eat healthy, speak positive affirmations outloud, meditate/do yoga daily & talk with my psychologist weekly for support. And most importantly I do my best to let go more each day & allow myself to not dwell on it.

I remind myself that no matter what, I will grow stronger through this & grow deeper compassion for those suffering around me. I remind myself that everything in life is temporary. That no matter how bleak things can seem, it won't stay this way forever & that my best days are yet to come. Everyone reading this that feels hopeless, that feels things will never get better. Don't quit. You are stronger than you know. Hugs xx

REPLY
@annajeab

Hi everyone! I wanted to share my story hoping that it may help someone out there or at least give them some hope. I want to start out by saying I still have my "breathing issue" BUT I can say I feel about 60% better & have gotten back to enjoying my life again (something I never thought would be possible). I also want to say I believe that people here have a variety of different health problems causing similar symptoms on this thread & this is just my personal journey.

My breathing problem started April 19th 2020 while I was at work, I don't remember the exact minute that it started but at some point I felt like I wasn't getting enough oxygen. The term I can use to best describe this is "air hunger". I'm a nurse & work at a hospital so I instantly checked my oxygen level which was fine. It was though my brain was telling my body you need to take deeper satisfying breaths & fill your lungs all the way up in order to get enough air. I describe the sensation as the feeling you get when you're underwater & are on your last little bit of air & need to come up. The sensation of suffocation was there 24/7, every minute of every day except for when I was asleep. I checked myself into the ED thinking I had COVID (which was negative) & they sent me home. In the months that followed I struggled to get through every single day. I had nearly every test possible: Chest X ray x2, Pulmonary function test, EGD, 3 in depth blood work panels & Throat CT. I had Chiropractic adjustments, learned buteyko breathing & tried hypnotherapy four times. I had an allergy consult (revealing seasonal allergies which I take Claritin for). I saw GI doctor who performed an EGD which did reveal esophagitis, I took omeprazole for 2 months to heal that- but no change in my breathing. Grasping at straws, I saw a homeopathic doctor who did a full work up, the only thing found was low iron levels, I took iron supplements for a while but no improvement. I kept hitting dead ends & every doctor after finding no physical cause would say the same thing, "I think this is just anxiety". I didn't agree, but decided it was worth a shot so I took buspar for three months (did not help my breathing).

When this first began, I was obsessed with discovering the cause of my issue, as a nurse I couldn't wrap my mind around how I could feel like this for so long with no physical explanation & no break from the hell I was living in. My inability to solve the mystery coupled w the feeling that I was suffocating 24/7 caused me to spiral into a dark place. I have never been anxious or depressed in my entire life but I developed severe anxiety & depression. Multiple times in the first month, I contemplated suicide, as it seemed the only way to end what felt like a living nightmare. To people around me, I looked perfectly normal & it was frustrating to try to explain what I was experiencing to people. They would offer responses like "Just stop taking the deep breaths, it's not hard".

It's been 9 months & I am still conscious of my breathing & feel the need to take deeper than normal breaths to satisfy a sensation that returns again & again. I wish that I was writing this saying I am 100% better-- but though I am not "back to normal", I have made incredible progress & am feeling much better & I honestly feel that in time I will slowly find my way back to natural breathing. I have come to terms that this isn't one of those things that is going to disappear suddenly. Instead, my breathing gradually finds its balance as I stop trying to control it & one day I believe I will realize I am breathing without noticing ( the way it should be). After having every possible physical cause ruled out I truly believe that my breathing issue started from a place of severe stress/anxiety that I didn't even allow myself to feel which manifested into a physical symptom that has now become a habit/compulsion of sorts. The key to me moving forward & enjoying my life again, has been letting go of trying to "get better". I stopped searching for magic cures & researching for hours on the internet reading anecdotal stories. I notice that with each day I am able to focus on other things more & for the most part when I am busy & distracted with friends or work I hardly notice it all. It took me time to get to where I am. I spent months crying myself to sleep every night wondering why is this happening to me. Some things I do that have helped me on my journey to healing---I work out 4-5 times per week, eat healthy, speak positive affirmations outloud, meditate/do yoga daily & talk with my psychologist weekly for support. And most importantly I do my best to let go more each day & allow myself to not dwell on it.

I remind myself that no matter what, I will grow stronger through this & grow deeper compassion for those suffering around me. I remind myself that everything in life is temporary. That no matter how bleak things can seem, it won't stay this way forever & that my best days are yet to come. Everyone reading this that feels hopeless, that feels things will never get better. Don't quit. You are stronger than you know. Hugs xx

Jump to this post

@annajeab- Welcome to Connect and good morning. Wow, thank you for posting your story and giving hope to all of us. This has been a very scary year and many, many people have felt this way. Your advice is wise to not give up!

Have you heard of exercise induced asthma? I tend to get that but I test negatively to asthma.
https://www.mayoclinic.org/diseases-conditions/exercise-induced-asthma/symptoms-causes/syc-20372300
https://acaai.org/asthma/types-asthma/exercise-induced-bronchoconstriction-eib
I imagine that you had all of the breathing tests there are?

REPLY

Hey! I was wondering do you wear blue surgical masks? I started to have breathing problems this year also and now I have full blown asthma with multiple triggers including smoke and certain cleaning products. I’m a big advocate for masks and I’m a healthcare worker but I’ve noticed improvement since I switched to white masks with no dye in them. I can’t handle n95 either because it restricts me too much. I also use an inhaler which immediately helped my breathing.

REPLY

@mchristmas - Welcome to Connect lung cancer group- I see that you have joined another group. I have lung cancer and COPD. I use KN95 masks without a problem. Some masks have fibers that just might not fit well with your asthma.

May I ask what kind of inhalers you use? I understand that you have stopped using them, with asthma, due to another problem.
https://www.mycopdteam.com/questions/55ae8c351fcaa301be000074/inhalers-for-copd-and-uti-infections
Have you discussed this with your pulmonologist?

REPLY
Please sign in or register to post a reply.