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.
@darrenp, thank you for sharing this! This is great information that I think will help many people who are dealing with similar issues. There are a couple of different types of hiatal hernia's, of which mine is the sliding version, but nevertheless this is great info for you to share. Happy New Year!
Hi,
I have had the same sort of symptoms for over 2 years now.
Mine is so much worse in the winter/cold months, it’s making me feel like I am close to a panic attack every day. It’s unbearable some days!
I have been struggling with internal vibrations, palpitations, a horrible constant urge in my throat and chest that I need to take a full breath but I just can’t get the breath I feel I need, this then makes me start to feel panicky. Hands and feet go tingly and head will get light. It’s horrible!
I’ve had numerous tests from doctors and everything comes back fine!
I mean... it is anxiety. Follow the logic. If you are experiencing symptoms that make you feel very bad or perhaps believe you are dying... that causes anxiety and stress, so the "stress hormone" is released and everything gets worse. What it really takes is someone actually looking at all your symptoms as a whole. For instance, I couldn't sleep (wake frequently), had ringing in my ears, very frequent pvcs... they acted like these were 3 different, non-related issues. When in reality, they were one in the same. Roemheld Syndrome. I literally didn't think everything could be just because I had the farts. Why would I?
I have this same condition. Strangely pleased that others also experience these symptoms.
I also experience restless legs symptoms does any other sufferer have rls too?
Hi @alexgooch, Thank you for sharing your experience. I’m so sorry to hear how much you’ve been struggling. What you’re describing, the constant urge to take a full breath, the panicky feelings, and the physical symptoms like tingling and lightheadedness—sounds incredibly overwhelming. I can really relate to that "trapped" feeling when you just can’t seem to get the breath your body is begging for.
The fact that it gets worse during the winter/cold months is really interesting. I’ve noticed that cold air can sometimes be a trigger for me too; it feels sharp and can make the whole breathing process feel more strained. Have you tried anything like wearing a scarf or mask over your mouth and nose to warm the air before you breathe it in? I’ve found that helps a bit, especially on really cold days.
I completely understand how frustrating it is to go through test after test only to be told everything is “fine.” It can feel like no one truly understands what’s going on. Have you had a chance to talk with a doctor about the possibility of anxiety or a breathing pattern disorder like dysfunctional breathing? Sometimes these can cause a vicious cycle of symptoms, where the physical sensations feed the panic, which then makes the symptoms even worse.
For me, learning gentle breathing exercises (like Buteyko breathing) was a game-changer. It didn’t fix everything overnight, but it gave me a tool to manage those panicky moments when my breath felt out of control. Would you be interested in hearing more about that or trying something similar?
I’m glad you’re here, and I want to encourage you to keep advocating for yourself. You’re not alone in this, and there are people who understand what you’re going through. Please feel free to share more about what you’ve been experiencing or what has (or hasn’t) worked for you.
Hi @spocky01, kind of a bittersweet thing, isn't it? Good to find others suffering the same thing so that you don't feel so alone. Totally get it!
I'm not sure I've seen anyone else with both of these things (air hunger + RLS) so not sure of any relation, but anything is possible! It'd be interesting to see if anyone else pipes about two different conditions. So far, a couple of connections I've made personally with other conditions are GERD and allergies; I've noticed that allergies can exacerbate the feeling of air hunger if my sinuses are inflamed, and if I don't manage my GERD, that can also make me feel like my airways are inflamed. Managing both of these also helps me manage my air hunger.
Have you found anything that helps with the restless legs?
Not really. Avoiding stressful situations helps a little. I’m lucky sleeping usually is ok for me, many sufferers can’t sleep. I avoid long journeys on planes and any confined seating as it just goes mad. Just have to live with it really. The doctor who diagnosed it said “this won’t kill you , won’t get better and will likely get worse with time. No treatment offered so not expecting any miracles any time soon. Do you also have both?
I don't have restless leg syndrom, just the air hunger issue. They may be two separate conditions that don't really affect each other, but of course it's possible they somehow correlate. How long have you been dealing with the RLS and air hunger?
Difficult to be precise, but a long while for both, and both have gotten worse over the years. I live in London and have usually found when away from the city both improve slightly - whether it is less perceived stress or maybe less pollution I notice an improvement.
Hi Gabe!
I have tried Buteyko breathing but I didn’t seem to find any improvement (frustrating!!)
I haven’t currently found anything what helps it and what makes it worse is I can’t pinpoint if anything is triggering it! I have tried various diets, diffrent breathing exercises. Physical exercises, and doing less to see if it helps! Currently have found something that helps, I think this is why I get overly panicky some days as I don’t know how to control it!
Feeling unheard by doctors is also really frustrating. I have been trying to get a ct scan for months now and I am in a long waiting queue for this.
I did think it was anxiety but I am such a chilled non anxious person it would really surprise me if it was! It’s easier said than done to just forget about it and live day to day though, I can’t seem to get rid of the horrible urge I have in my throat that makes me seem to take a deep breath (that I can very rarely fulfil)
My doctor did speak about Inducible Laryngeal
Obstruction, which there are a few exercises you can do to help this, and sometimes they do help me catch a full breath but not all the time!
So as it stands I’m not further to finding a cause or feeling 100% normal day to day, it’s rather draining!!