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.

christianfen | @christianfen | Mar 25, 2023

I've had this issue for the past 3-4 years. Sadly, for me, this is not the only issue I experience. I've dealt with chronic pain for 8-10 years (upper left side of back, shoulderblade, headaches, neck).

I've also had chronic fatigue for the past 3-4 years (always super tired, I can't play sports or do too much physical activity, running, etc)

My mental health is also in a really bad state. My focus and concentration are atrocious, my memory is disgusting. Even my vision feels affected. My perception of life it's not what its used to be.

I've had the shortness of breath issue for the past 3-4 years. I don't feel the satisfaction or relief when breathing. It goes on and off, but it's been consistent on a daily basis for the past 3 years, and it happens at least a few times during the day, sometimes it could be all day long.

Aside from the shortness of breath, I am constanly yawning. Sometimes I try to yawn to reach the satisfaction, and it still does not work. I also find myself burping a lot when this happens. Like a lot.

I notice that I grind my teeth so often, I'm constantly putting pressing on my jaw, unconsciously (this happens more often when my shortness of breath is bad). I have had a bad habit since I was a kid, not sure why, but it seem I do hold my breath when I concentrate a lot doing something, like playing a videogame. I've noticed that for some reason, when I do that, I positioned my tongue towards the left side of my lower teeth (closer to the wisdom tooth). Not sure if that means something.

Well, for the bonus, my girlfriend broke up with me recently, she betrayed me with a friend of mine and my heart is broken.

All the accumulation of things happening in my life have made me feel discouraged to continue... My only hope is to get better physically. I can't keep going like this for much longer.

My primary doctor ordered x ray of chest, shoulder/trapezius. He did an extensive blood test. Testosterone was low, everything else, normal.

At ER I've had EKG, and lung x rays. Everything seems fine (although my heart beats faster than my peers in every situation. Sitting still, my heart beat is usually between 85-100. Sometimes even a little bit more. Doing mild physical exercise (which drains me quickly), it can go between 140-160.

Doctor gave me 3 testosterone injections and I've been taking clomid. I have not felt any significant improvements.

My septum it's actually deviated, so I went to ENT about a month ago, and he gave me a spray (which has not worked), with the hopes that insurance will approve a surgery to fix my deviated septum. Nonetheless, I don't think the problem it's in my nose, it feels more in my stomach-airway.

I am schedule for an endoscopy on the 29th, hoping to find at least a partial answer.

I've been going to physical therapy for months, but the pain is still really bad.

I also went to a psychiatrist and I've been taking antidepressants for a few days now.

I am schedule to see a neurologist, pulmonologist and cardiologist in May.

I'll try to see if I can get an MRI, but it's hard for insurance to approve that.

Anyways, my life has been miserable, I don't even know how I'm still here. I stumbled upon this post today, and it felt relatable in many ways.

I do feel discouraged that people have not found a proper solution yet.

I'll read more posts, I'll try to get into the breathing exercises.

I don't believe in any deity, but I'm still praying to find an answer and a solution for my problems. I'm exhausted. A life with zero energy, pain, shortness of breath, lack of social life, of motivation, heartbroken, feeling alone... One can only fight too many battles.

I'm thankful for this post.

I'll keep you updated about my progress.

I needed to vent, thanks for the opportunity

cynlee23 | @cynlee23 | Mar 27, 2023

In reply to @esra "It's unbelievable, I have bulimia too, I'm so sorry, I'm really sorry to see that it's..." + (show)

Hi Esra (Gabe as well),

I wanted to share with you all some updates.

Gabe thank you so much for your thoughtful reply. As I’m pregnant I was having a stuffy nose for a while and the clinician you recommended who died the nose plugging and head nodding did help momentarily. I am a mouth breather and always have been. To answer your question everything turned out normal with oxygen levels etc. I do notice at times that I would wake myself up at times while sleeping as I would have a loud snore that would suddenly sound nasaly. I found that this was more when my nose was plugged up. I can’t remember if this was before while I was pregnant too as stuffy nose is a pregnancy symptom as well. Lately my nose hasn’t been stuffy and I don’t notice any snoring.

Esra, when I read that you have to force yourself to yawn to take a deep breath oh my gosh it made me feel good to know someone understands what I’m going through. Some days I can make myself yawn easier to produce a good breath and other days they are far and few in between. Do you also have chest pain? Does it get worse throughout the day, does exercise and eating big meals make it worse? I’m curious if you experience those things as well.

I’ll be going to see my cardiologist as a follow up from the echocardiogram and 14 day monitor which I already had access to the results and seen there were no abnormalities. I will share more info if he suggests anything else. My primary care dr did say that he thinks I have costochondritis but that it wouldn’t explain my breathing issues. He said ibuprofen and icing/heating chest would help. While it does help with the chest pain, it doesn’t help with the breathing.

Coming up I also have an appt with another pulmonologist to get a second option, another GI dr as well for a second opinion, and an appt with an ENT coming up. I will update you all when I have more info.

I do have a friend who is a nurse that has the same symptoms we have described and so far she has gotten heart and lung tests as I have mentioned which have come back normal as well. She did have gastric bypass surgery in the past and has not seen a gi dr which I told her might help to know to rule out if it is GI related. Her pulmonologist thankfully is not just turning her away at this point and is adamant about figuring this out. She told me they are going to do a Vscan and possible invasive CPET scan to see if there is any micro clots or scar tissue blocking anything. She did say they would have seen any scar tissue already with her x ray though which turned out normal. She has had these symptoms for over two years and has said she has just worked out recently for 30 minutes and hasn’t felt the symptoms so she is elated. This gives me some hope.

I pray that we all recover from this and find some answers. I can’t imagine living like this my entire life. I wake up every morning hoping it is either miraculously gone or significantly better. Id be happy for just even a little better too which it can be at times. Is anyone else here finding that this can make you want to isolate yourself more. I am self conscious of looking like a guppy out of water gasping for breath and have a hard time dealing with the pain and SOB to be present for others. I try my best not to but I have my days! Anyway, everyone take care and know that at least we get each other and your not crazy.

Gabe, Volunteer Mentor | @gabrielm | Mar 27, 2023

In reply to @jalexander729 "I felt like I was reading my own story. I have been suffering from SOB for..." + (show)

Hi @jalexander729, welcome here and glad you’ve found others in your situation. No one wants to be here but at least we’re not alone!

Sounds like you’ve gotten the gamut of tests and they all came back fine. At least you’ve ruled many things out.

You mentioned about not being able to sleep much as well. Despite the antihistamines, are you aware of any nasal/sinus issues? Do they feel clear or do you have any obstruction when breathing?

Have you looked into any ways coping such as breathing exercises?

esra | @esra | Mar 28, 2023

In reply to @christianfen "I've had this issue for the past 3-4 years. Sadly, for me, this is not the..." + (show)

@christianfen