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.

Colleen Young, Connect Director | @colleenyoung | Sep 7, 2021

In reply to @amirreza "I have this problem for4years can i have your telegram addres i go to any doctor..." + (show)

@amirreza, it sounds like you would like to consult with a medical professional. You can contact Mayo Clinic here: http://mayocl.in/1mtmR63

Colleen Young, Connect Director | @colleenyoung | Sep 7, 2021

In reply to @zachsturgeon "Hi Gabriel, My name is Zach and I'm a 35 year old male. I've been experiencing..." + (show)

@zachsturgeon

Hi Gabriel,
My name is Zach and I'm a 35 year old male. I've been experiencing what you describe for a really long time, to varying degrees. I get an urge to yawn that is similar to a craving to itch or to sneeze that builds and builds until I yawn. After yawning, I feel relieved but the urge slowly gets worse until it becomes unbearable. On particularly bad days, I may yawn once every minute or so. Not only is it really frustrating, but it can also be really embarrassing if I'm in a social setting. I've researched this topic extensively, and though I have come up with some ideas as to what is causing this, I haven't really found any silver-bullets yet. Surprisingly, science still has not really explained in detail why humans (and almost all other animals) yawn. It used to be common knowledge that yawning was due to low oxygen in the brain, but experiments have totally ruled that out by showing that people in environments with lower oxygen levels don't yawn more than a control group. The prevailing theory now is that yawning is the body's way of cooling down the brain, but that's still fairly ambiguous. I do think my issue is at least partially related to hyperventilation syndrome and my failure to not exhale fully enough. If I force myself to breathe out fully, then I do get some relief but it's only temporary and partial. I've tried acid reducers in case it's related to a damaged esophagus, but to no avail. One other tidbit I've found is that stimulants like amphetamine make my issue much, much worse. Also, cannabis can make it worse sometimes. Some antidepressants also exacerbate it, like Effexor. This initially led me to think that anxiety was the root cause. However, I don't think that's the whole picture because I can't really find a definite link between days or moments of high anxiety and increased yawning. I do need to look into the breathing technique that you mentioned, though. I was really hoping that somewhere in the myriad of responses you got to your original post there would be some magic cure for our problem, but it appears this issue is much more complex than I was hoping it would be. I've noticed many of the people responding on here don't really have the same issue you described. They have some other version of shortness of breath that doesn't really fall under the really narrow description you spoke about. That's not to belittle their own suffering, but when I read your description it was really uncanny how similar it was to what I have been going through for at least the last 20 years or so. I've tried to speak to doctors about it, but it really is such an esoteric issue that they don't have a clue how to treat it or what it even is. It's beyond frustrating, but at least I know there are other people out there going through a similar problem. I'm glad that you do seem to be getting better if your recent posts are anything to go by and I'm hopeful that means maybe I will, too.

Jump to this post

Welcome, Zach. Allow me to tag @gabrielm to make sure he sees your message to him.

Gabe, Volunteer Mentor | @gabrielm | Sep 7, 2021

In reply to @zachsturgeon "Hi Gabriel, My name is Zach and I'm a 35 year old male. I've been experiencing..." + (show)

@zachsturgeon

Jump to this post

Thanks @colleenyoung. Glad you found us @zachsturgeon. I too found it difficult to explain to people this problem since it’s not a shortness of breath like you’re out of breath or even labored breathing, but more of an “air hunger” that is always present to some degree. And taking a deep breath may or may not satisfy it. Have you had various tests done; lung function, heart tests, blood work, etc? Mine had gotten better but use really just leveled off to a manageable level. I maintain moderate weight lifting exercise and breathing exercises to help at least maintain it. But I’m right with you, continuing to search for answers.

eamon11235 | @eamon11235 | Sep 12, 2021

In reply to @gabrielm "Thanks for the reply! I have explored the possibility of anxiety and stress, but I don't..." + (show)

Hi Gabe, I also experience a similar issue. I’ve been experiencing SOB on and off for the last two years. My pulmonary function test was fine, blood tests normal. I also have GERD and took medication for it but it didn’t seem to help my SOB. After about 4 months of SOB my hands and feet would turn red and burn terribly, but they would only burn on the days when my SOB wasn’t as severe, and when my SOB was severe they wouldn’t burn. I’ve been to various doctors and no one seems to know what’s wrong with me. Is your SOB relieved by sitting up or lying down?

Best,

Eamon

jenh1128 | @jenh1128 | Sep 12, 2021

Has anyone considered mold in their homes as a reason for the air hunger? I have been out of town the past 2 weekends and my air hunger is just about non existent while away. I progressively becomes worse with each day once I'm home. On my really bad days I am also very bloated. I don't know if it is related, a coincidence, or I'm causing it by trying to get that deep breath in over and over again.

Sue, Volunteer Mentor | @sueinmn | Sep 12, 2021

In reply to @jenh1128 "Has anyone considered mold in their homes as a reason for the air hunger? I have..." + (show)

That's an interesting thought, whether it is mold or some other allergen or air quality issue in your home!
Have you done any exploring yet, or do you know for certain you have a mold issue?
Sue

jenh1128 | @jenh1128 | Sep 12, 2021

In reply to @sueinmn "That's an interesting thought, whether it is mold or some other allergen or air quality issue..." + (show)

Just started looking this afternoon. After the second weekend away and symptom free, it has to be something in my house. I pulled off a couple of loose tiles in my shower but it looks fine. I'm going to get a better look at the air condition handler tomorrow. I live in South Florida so moisture is a given. I've never been very sensitive to allergens. I bought the house less than a year ago and the inspection didn't show any areas of concern.

Gabe, Volunteer Mentor | @gabrielm | Sep 12, 2021

In reply to @eamon11235 "Hi Gabe, I also experience a similar issue. I’ve been experiencing SOB on and off for..." + (show)

Hi @eamon11235, that’s a strange symptom that you describe, about the hands and feet turning red and burning. I wonder if it has anything to do with blood circulation or maybe some kind of reaction to something along with the SOB. Have you any other tests done like heart tests, I’d imagine they tested for asthma during your lung function?

I do find that lying down seems to make it a little worse. I can sometimes sleep fine lying down but I do find more comfort in sleeping sitting mostly upright. How about you, do you experience a difference upright vs lying down?

Gabe, Volunteer Mentor | @gabrielm | Sep 12, 2021

In reply to @jenh1128 "Just started looking this afternoon. After the second weekend away and symptom free, it has to..." + (show)

@ jenh1128, interesting! I once considered allergens and mold at one point as a possibility for my issue. I don’t have a mold problem here in the desert southwest but could see that being a possibility in Florida. I am getting treated for allergies (allergy shots) to help my sinuses and when they’re clear, I don’t have much of a breathing problem. Even mild sinus inflammation can he a problem for a lot of people with their breathing. I also considered that it could be the area I live in but my symptoms are the same no matter where I am. Though it’s still manageable and tolerable, it doesn’t seem to matter at what elevation or environment I’m in.

That’s interesting that you feel bloated when the problem is worse. I too have noticed that in me. If I eat too much it definitely affects the issue so I try to have a lighter and clean diet (but I have weaknesses, lol!) But even when not food related, as the air hunger worsens, I do notice I feel bloated. Have you tried changes in your diet?

Sue, Volunteer Mentor | @sueinmn | Sep 13, 2021

In reply to @jenh1128 "Just started looking this afternoon. After the second weekend away and symptom free, it has to..." + (show)

You said, "I bought the house less than a year ago..." When did the symptoms start? Also, perhaps you could consider environmental toxins nearby - weed or pest killers, industries...? My cousin had horrible reactions to the routine termite and roach poisons used by the exterminator and had to stop her service. My brother cannot be anywhere near where spray insecticides are used.
Also, my sisters-in-law will tell you that they never had allergies when they were young, and thought our allergic family was "weird" - now both have developed strange allergies themselves, and take us more seriously. So you could be newly sensitive to something odd like a cleaning product or air freshener in your home.
Also, do you have an air purification/filtration system in your home?
Sue