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.

@jeddles
Hi,
I wanted to add a very good link for this condition but apparently I'm not allowed.

Julia

REPLY
@ailuj70

Hi,
Finally someone that has this SOB issue. I have a new Dr. now but I haven't mentioned this health issue.
I've had this all my life but it would only happen once in awhile in the summer, heat related I guess.
Never told my parents.
Anyway, now I'm 71 and since last year, it's been happening daily.
I will tell my dr.
In the meantime, are there any more answers out there?

Julia

Jump to this post

Hello Julia- I'm sorry to hear that you too suffer from SOB known medically as dyspnea. often described as an intense tightening in the chest, air hunger, difficulty breathing, breathlessness, or a feeling of suffocation. Very strenuous exercise, extreme temperatures, obesity, and higher altitude all can cause shortness of breath in a healthy person.

I know that this is a busy group but the posts (conversations) reveal a multitude of information about dyspnea. I strongly suggest that you search for your specific symptoms and read as much as you can.

I'm wondering why you haven't told your doctor?

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@merpreb

Hello Julia- I'm sorry to hear that you too suffer from SOB known medically as dyspnea. often described as an intense tightening in the chest, air hunger, difficulty breathing, breathlessness, or a feeling of suffocation. Very strenuous exercise, extreme temperatures, obesity, and higher altitude all can cause shortness of breath in a healthy person.

I know that this is a busy group but the posts (conversations) reveal a multitude of information about dyspnea. I strongly suggest that you search for your specific symptoms and read as much as you can.

I'm wondering why you haven't told your doctor?

Jump to this post

@merpreb
Hi,
Thanks for a prompt reply, much appreciated.
To make a long story short, this is a new Dr and he's just getting to know me. I had my second apt a couple of weeks ago and there were so many things he was covering with me that I failed to bring it up. I should have as it's now worrying me.
I will make one soon.
I have been to see a lung specialist a few times in the past and was given the diagnosis of Dyspnea.. so that is the spelling, lol.
Anyway, that was a few years ago and as I mentioned in my previous comments, it would only be when the weather was extremely humid.
Fast forward to the present, since last fall it's happening daily and I don't know why.

Julia

REPLY

In addition, at the beginning of 2021 I was at the hospital for another issue and I mentioned the sob and they took blood tests, X-rays and was told I'm fine.
I've been triple vaxxed, wondering if that may be a factor.

Julia

REPLY
@ailuj70

@jeddles
Hi,
I wanted to add a very good link for this condition but apparently I'm not allowed.

Julia

Jump to this post

Hi Julia, You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Allow me to post the link for you (it's clearly not spam :-)).

- Everything You Need to Know About Dyspnea https://www.healthline.com/health/dyspnea

What information in this article resonated for you?

REPLY
@colleenyoung

Hi Julia, You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Allow me to post the link for you (it's clearly not spam :-)).

- Everything You Need to Know About Dyspnea https://www.healthline.com/health/dyspnea

What information in this article resonated for you?

Jump to this post

Thanks and I understand about posting URLs.
Pretty much everything resonated.
When I see my Dr and I tell him about this issue hopefully he will be of some help.
In the link I was interested in the Pulmonary Rehabilitation.
Maybe after he has time to figure my issue out and there's no urgent issues, he will offer that treatment.
Thanks so much for replying.

Julia

REPLY

Hi Gabe and everyone else

So I just got diagnosed with Tourette's syndrome. For the longest time, I thought I had Dystonia but turns out it was Tourette's. I am now wondering if these breathing issues are related at all with Tourette's, which is honestly pretty shitty. I am having an endoscopy done as well in two months to rule out a Hiatal Hernia. We'll see if the treatment they have me on will help with my breathing issues as well.

Does anyone know anyone who has Tourettes?

Thanks

Tahir

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@tahiristan

Hi Gabe and everyone else

So I just got diagnosed with Tourette's syndrome. For the longest time, I thought I had Dystonia but turns out it was Tourette's. I am now wondering if these breathing issues are related at all with Tourette's, which is honestly pretty shitty. I am having an endoscopy done as well in two months to rule out a Hiatal Hernia. We'll see if the treatment they have me on will help with my breathing issues as well.

Does anyone know anyone who has Tourettes?

Thanks

Tahir

Jump to this post

@tahiristan, as much as I hate when someone has a disease, the positive side of that is that it could answer a lot of questions and provide some answers as to what's been going on. I don't know much about Tourrette's syndrome, but it just might affect breathing though I haven't heard that as a symptom. But perhaps treating Tourette's might yield some positive results. Let me know if they rule out the hiatal hernia.

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@alanangray27

Hi I came across this thread as I have been experiencing the exact symptoms since July 2021. It improved a bit for a few months but since I had a cold it has come back.

I wanted to ask if anyone has had there Vagus Nerve tested? I have been doing a lot of reading into it and wonder if there is any connection. Given when I sleep and not long after I wake the symptoms have subsided I wonder if the vagus nerve is involved? Reading about Vagal tone I am going to practise increasing this and do a little study on myself.

Love to hear anyone’s experience or thoughts. Hope this thread is still active

Jump to this post

Hi @alanangray27, this thread is indeed very active! It's truly amazing how many people find this thread who have very similar symptoms and a similar breathing issue. It should be something that is studied more, and maybe one day this thread will lead to more attention to breathing issues.

I sort of looked into the Vagus nerve theory as a possible cause but at the time, the research didn't yield much. I should do more research on that because I think the Vagus nerve plays a central role in heart and lung function. There could be some ways that the Vagus nerve becomes damaged which could definitely affect breathing. I would also be curious if anyone has had a doctor look into if the Vagus nerve can be a possible cause.

Did anything happen or change that you know of that may have caused the issue to come up back in July of 2021?

REPLY
@ailuj70

Hi,
Finally someone that has this SOB issue. I have a new Dr. now but I haven't mentioned this health issue.
I've had this all my life but it would only happen once in awhile in the summer, heat related I guess.
Never told my parents.
Anyway, now I'm 71 and since last year, it's been happening daily.
I will tell my dr.
In the meantime, are there any more answers out there?

Julia

Jump to this post

Hi @ailuj70, so sorry you've been dealing with this so long and now especially that it's on a daily basis. There's a lot of information that has been share over the past 3 years or so since I originally posted in the forum and as @merpreb mentioned, the comments provide a lot of insight from people who have tried different things. As for me, doing breathing exercises primarily using the Buteyko Breathing method has helped me a lot and I have learned to control my breathing over the years. While the air hunger hasn't gone away completely, it's been manageable and tolerable.

Even though it's been happening on a daily basis for you, are you still able to get a deep, satisfying breath occasionally?

REPLY
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