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.
Gabriel and everyone, thanks for describing symptoms and remedies. I'm wondering how people are doing as I write this a year and a half after the last post in the thread, by Tonya. My situation is like Gabriels's: continuous attempts at yawns, with maybe every third one successfully satisfying the need. I'll wake up at night to pass water and lie in bed afterward trying to yawn! (We can talk about my enlarged prostate and urination schedule some other time. 😑 😁) I'm going to look into the Buteyko method, but I'd love to discover the cause. Oh, and I have the light dizzy spells, too. Like Gabriel, I'm healthy and not too stressed (all things considered, given events while I'm writing this). The allergy hypothesis does not check out for reasons others have cited. Blood pressure and oxygen are good. I'm perplexed! And practically gasping.
@gabrielm
@tonyagregg
@merpreb
@rwinney
Felicity, regardless of whether we resolve this need to yawn, I thank you in advance for refusing to accept the diagnosis of stress for any condition doctors cannot identify. For years, Crohn's disease ate away at my mother's intestines because doctors had not heard of it. They said it was in her head, as they tell all women for most problems, it seems. Good luck in your work and this mysterious malady.
@felicityr
Hi @jpgillam, this thread is very active and people post at least weekly. I'm doing about the same- breathing is not normal, but it's manageable. I still deal with the air hunger, but it's not severe. It's at least tolerable. I'm able to do some light to moderate exercises and do everything pretty normal. I continue to utilize some Buteyko exercises which keeps it under control. I haven't found a cause as of yet, but it might have to do with GERD and/or sinus issues. But still at a loss myself. But at least I am managing it and can live somewhat normal.
Thanks! I haven't seen a doctor for GERD, but my housedoctor told me to try medicine for my stomach, but it didn't help. I have done a breathing test (spirometer, not sure if its the same name in English) and the results were excellent. So in my case I think this might be caused by a few things together: by back (bad working positions at home), some kind of stress/anxiety that I haven't really found the cause for yet (maybe the whole covid situation and not being able to live as usual) and my riding accident which might have lead to me not breathing properly.
But it's just specualtions and im trying to map things that happen around when this is triggered. Yesterday I had no problems at all but they started a bit this morning when I travelled to my office (I usually work from home). Sometimes I might stop it in time if I focus on breathing right but other times I cant stop it. It's frustrating.
Have a nice day
That is how it is for me - I am so tired of it!
Started when I was around 15, I would be falling asleep and then suddenly jolt awake, sit up and gasping for air. Sort of like my body just forgot to breathe. It would come and go, not much pattern to it. Usually at night. It’s definitely worse when laying down, not quite as bad when sitting up, better when standing and able to brace myself.
On bad days, it’s constant. I feel like I can’t get enough air, I try to force a yawn, take deep breaths, it’s always *just* out of reach. It’ll last about 6-10 minutes of not being able to catch my breath, then it’ll suddenly happen. Sometimes a big yawn, sometimes just a breath, sometimes it’s like I hold my breath for a second at the end of inhaling. And I’ll be ok for a few seconds, then it starts all over again. When it goes on for a while (like it’s been 5+ minutes and I’m restrained in the car), I have some akathisia. Sometimes, it feels like I have too much air in my lungs; sometimes, not enough.
And eventually, I’ll wake up in the morning and I’m fine. For months, sometimes. Until suddenly, I’m not anymore.
It wears me out to be breathing so deeply all day long, and nights are worse. This last time, I started taking ambien at night. Doesn’t do anything for my breathing, but it usually knocks me out enough that I can sleep. Otherwise, I’m up all night.
I’ve seen cardiology, pulmonology, allergy, otolaryngology, urgent care, primary care, emergency room... nothing. Pulmonary function test, O2 says, EKG, echocardiogram, blood work...all normal. Sleep study showed minor apnea, but I lost weight and that stopped.
I’ve tried inhalers, allergy meds (I do have some allergies, and I’ve noticed when it’s bad at night, my nasal passages feel very swollen), benzodiazepines. Emergency room said it was anxiety/panic, except it happens when I’m feeling fine otherwise. Also? I am a psychologist. These weeks-long episodes absolutely do *not* meet criteria for panic attacks or anxiety. But I tried everything, including the benzos. Nothing.
I see a lot of suggestions. The one that fits the most symptoms is silent reflux - I do have a chronic “cough,” feel like there is a lot of mucous in my throat (I don’t actually cough it up), clear my throat often, have post nasal drip...But I have lost weight, and I wasn’t overweight when started when I was a teen.
I’m in my 40s now, I’d love some answers. Any recommendations on where to start?
Did your Pulmonary Doctor do a CT Scan - mine showed mild bronchiestatis and I am now seeing an amazing bronchiestasis dr who really want to help me
CT of lungs? I don’t think so. About 15 years ago, I decided I was going to figure this out, and kept pursuing it. That’s when I did the pulmonary function tests, along with most of the other stuff. Pulmonologist said it was allergies.
Problem is that now, I have a better job...with worse insurance. And CTs are expensive. 😔
My pulmonary had me see an allergist who tested me for allergies - test was so much fun - stuck me with 33 needles and was told I have no allergies. I'm like you - going to keep pursuing till I get an answer to why my shortness of breath and cough and a maintenance plan. Keep pursuing - we all need to be proactive about our health
@anrw2018- I suggest that you see a Gastroenterologist for decisions concerning your stomach. Make sure that your tests are from specialists. II would also make sure that you have a CT scan of your lungs. There are so many reasons for SOB it's really a hit or miss for early diagnoses.
You might not be aware of inner stress if you are very active and aren't paying attention to your breathing. Do you also have restless leg syndrome with akathisia?
Do you a breathing machine for your apnea?
I’ve seen multiple specialists, but GI is not one of them. I have pursued this several times over the last 30-some years, with no luck. They have honestly just given me medications to see if it will help, which I don’t like doing.
I had a cpap at one point, but was unable to use it because it made my breathing worse. I couldn’t get enough air when I was wearing it. I then lost about 50+ pounds, and no long had apnea.
No RLS with the akathisia. It’s more like I have to get up and move. I have this when I’m up and moving, too, it just is easier for me to catch my breath when I’m standing. When it’s not happening (like today, I’m fine), I can think about it and talk about it, and still having no symptoms.