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.
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@jessitru hi! Glad I came across your post. I’m experiencing some of these same symptoms. I have had 4 EKGs (from different clinics/ER) , chest xray, CT scan, blood work and all come back clean. NOTHING! Now that I am reading this, I remember finding a bite on my stomach months ago. Never went down til maybe a few weeks ago. It didn’t bother me except maybe itch once in a while so I never worried about it. I wonder if that was a bite that caused Lyme disease. I will have my doctor take a look at it. Things often go overlooked because I am typically a healthy person. Never visited the hospital for myself since having my son 14 years ago and now the sob, tingling, numbing, feeling anxious, lightheaded. And it’s scary when all the tests shows nothing!
I was diagnosed with pulmonary sarcoidosis 30+ years ago. I am now 77. My pulmonologist recently told me my lungs were fibrotic from at the time of initial diagnosis. I was treated with prednisone for several years and finally decided to stop taking it. I was switched to a steroid inhaler at that time as well as a bronchial dilator inhaler. I have been on O2 since being hospitalized for flu/pneumonia in 2012. Because of a change of insurance on Jan. 1, the Symbicort inhaler would no longer be covered so, after checking with my pulmonologist, I stopped using it. My breathing became instantly and substantially more difficult and has stayed that way for 6 weeks now. I am struggling to breathe and to decide whether or not to go back on the steroid inhaler. The decision is complicated by the fact that my cancer is/was partially the result of long term immune suppression caused by the steroids and by the fact that the pelvic radiation used to treat the cancer caused osteoporosis which is exacerbated by steroids. A right heart catheterization several years ago to determine pulmonary hypertension was not definitive, and I am not eager to repeat that test. My extensive research on multiple reputable websites shows fairly clearly that there are no effective treatments for pulmonary hypertension or for fibrotic sarcoidosis so I am flummoxed as to what I can do without triggering a recurrence of the cancer and worsening of the osteoporosis. Has anyone been treated effectively for fibrotic lung disease and, if so, what was the treatment? I appreciate your input.
@riflemanz64 How does exercise affect your breathing? Also do you know what your typical O2 saturation is when you get it checked by doctors? Those are pretty good indications of breathing problems.
@stew80 Have you dealt with any heart issues before? Is the air hunger the only symptom? Hopefully the echocardiogram turns up some answers, but if it's normal there are still other avenues to explore. Sorry you have to deal with this.
@riflemanz64 I'm sorry you're dealing the sob and chest issue. Have you had any bloodwork done? If you're O2 levels check out ok, then generally you're breathing normal, it may just be your body misinterpreting things and inducing sob. But the O2 and bloodwork may reveal more.
@eimmat18 Did your symptoms show up around the time of the stomach bite?
@bunyipbaba Have you looked into breathing exercises specific to your condition? It may be worth it to consult with your doctor on what kind of natural remedies like breathing exercises or anything else that might help with the lungs. I know it's distressing to not be able to breathe normally especially for 6 weeks; I'm sorry you're dealing with all this.
@gabrielm
O2 levels are normal.
Blood work is perfect.
@riflemanz64
I also had a 1/2 hour Pulmonary function test that was normal. You have to sit in a small sealed booth and breathe in and out for all the testing. I can do a 2 mile fast walk just fine.
@gabrielm Thank you for taking the time to respond to my post. Yes, I have breathing exercises I do, especially when I'm breathless and "panting". I also walk on the treadmill for 1/2 hour a day with O2. I have to take frequent breaks to get the air hunger and panting under control and can only manage 1.1 mph where I used to fly along (sarcasm here) at 1.6 mph. I know my disease is end stage but am hoping to improve my quality of life for whatever time I have left. I have been treated all these years at a WASOG Sarcoidosis Clinic and Pulmonary Fibrosis Foundation Center of Excellence so I feel that they are aware of available treatments, but input from others who have these issues is always appreciated.