Mysterious shortness of breath: What has helped you?
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.
Thanks for the info on the breathing trainer. I purchased one a couple of years ago and could never work it correctly, despite viewing the videos, which were not helpful at all. I’ll check this out
Hi Gabe.
Actually, last week I found out what was wrong with me. Seems I suffer heart failure...meaning I'm not getting enough oxygen to my heart, and that in turn means my heart is too weak to generate enough oxygen through to my lungs!
After a week in hospital I've finally been allowed home. I've been given some home monitoring equipment; blood pressure device, oxygen reader and set of scales. Apparently there is a build up of fluids around my organs and my heart can't cope in getting rid of it so part of my medication is fluid reduction. A lot of medicine and puffers but they seem to be working first really good nights sleep for a long time, night I got home.
I'm just happy I got this thing sorted, even though it means I suffered a heart failure. At least the stigma of unknown is now KNOWN! Lol.
Wow, I'm glad you found an answer! That means you can get the proper treatment you need. I hope you heal and recover soon and thank you for sharing your update!
Thank you for this info and subsequent comments. Helpful
I have this as well. I have a very dry mouth when I sleep and I got bad heartburn. They gave me lansaprazole cos I'd been eating a pack of Ronnie everyday. A few months ago I had dry mouth and heart burn. Felt like there was something sharp in my throat. They increased the lansaprazole to 2 a day. 2 weeks ago I was at home and had this feeling which you all speak of. Feeling like you can't breathe. Can't get a full breath. I didn't know about any of this and thought I properly couldn't breathe. I live alone and went into a panic attacks like I never knew. I thought I was having a heart attack or some such. Got a cab to a n e and all my levels were normal. But I still felt like I had to consciously push out and pull in each breath. They told me about dyspnea and thay it can't be caused by stress. I have an ongoing war with my upstairs neighbours because of noise and it seems that that could have been the trigger. I was ready for taking unwise action that night with regards to my neighbours physical wellbeing then suddenly I think I'm going to die. It still happens now. I have propranolol foe anxiety and that does seem to let me forget about it and when I forget about it, it doesn't seem to happen. I've had this Web tab open since the weekend that happened and not dares read it cos it has made me feel it all I've again. I knew it would do and I'm hear, thinking I can't breathe, whilst knowing I am doing, but I'm glad I found this page/comment/post. I have a docs app tomorrow and a list to go through with him. This link between severe heartburn and dyspnea is definitely something I will discuss. It's all quite worrying. I'm 48 and gave up smoking and drinking a few years ago and then this happens. I want to run and cycle but I am scared to. Need to investigate further, and sedate when needed. I hope everyone is handling it all OK. ❤️
Hi @ianisnew, glad you found us too. Seems you're doing well to find answers to what might be going on. Though stress itself may not be the smoking gun, it can certainly contribute to the sensation of shortness of breath or air hunger. Do you have ways to managing and dealing with your stress?
You mention about straining while pushing out your breath as well as drawing in. That can indicate inflammation in the airways, like asthma would cause. Have you been tested for asthma or had any lung function tests done?
I am dealing with a similar situation, and found out that it’s caused by anxiety.
I am seeing a therapist who follows a combination of Cognitive Behavioral Therapy (CBT), psychoanalysis, medication, and meditation approach that is helping.
Hi, yes, I'm pretty much the same. I'm sorry that you have received this diagnosis, but glad that you at least have a diagnosis. So many people don't get a diagnosis and it's devastating. I'm currently not treating adequately but I'm trying to get in with a new doctor. Something new that I've learned since I posted was that a species of Babesia, called Babesia odocoilei (named after the white-tailed deer, odocoileus virginianus, that these ticks feed on), is likely the strain of Babesia that many people with resistant Babesia might have. You should try to find a Lyme Literate Medical Doctor asap if you haven't already. Contact ILADS.org for a physician near you.