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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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@cynlee23, Wow very courageous of you to share your story. I'm sure you saw in my original post that I too was pretty vulnerable just trying to desperately seek answers. I sense you're doing the same and I hope from the bottom of my heart that you find some comfort in finding this forum. It amazes me to this day just how many people pop in with a similar issue- a mysterious air hunger or shortness of breath that has no explanation. There are a lot of similarities among the people who are going through this.
I also wanted to express that I'm very sorry to hear of your miscarriage. I hope this pregnancy goes well and that you have a healthy happy baby!
Now I don't know how much of the comments you've gone through, but I think you'll find skimming through them you will come across many in your situation and various remedies to deal with the symptoms. What you describe about exercise inducing an air hunger sensation is similar to what happened to me in 2017. I was feeling pretty good and that my breathing issue had almost gone away when I pushed myself too hard on the treadmill and suddenly couldn't catch my breath from an exercise-induced shortness of breath. It's remained to some degree since, but I've learned enough about how my body reacts to things to know how far to push exercise and what situations to avoid (i.e., long flights of stairs or fast sprints).
Couple things if you don't mind sharing; what was your heart rate and O2 saturation when they measured you at the ER? Now that you're likely focused a lot more on your breathing, would you say that you breathe mostly through your mouth throughout the day?
Have you considered getting a sleep study done? That would rule out a few possible things.
I remember many doctors telling me that it was anxiety but was convinced that the breathing issue caused anxiety. So I had to learn how to deal with the anxiety as well, which helped the breathing somewhat at times, but didn't make it go away completely. But I do think there is benefit to overall learning how to deal with stress and anxiety.
And are you still taking potassium and do you know of any other nutrient deficiencies?
I hope you find a safe spot here in this forum. I definitely felt very alone and unique when this all started and find, still do this day, a lot of hope in dealing with this condition in the company of other people. Of course I wish no one had this, but at least we can band together!
Also throughout all of this time, I have been taking antacids. I have tried them all and am currently on protonix. My husband who is a nurse thought this was all related to GI so I was taking them preventively. Also I’ve always had since I was a little girl issues with coughing and clearing my throat after eating. I have never had heart burn on a chronic basis or noticed it being an issue. Just wanted to add that in as well.
Hi Gabe,
I came across your posting after looking up undiagnosed causes of dyspnea. I have been struggling with this since the beginning of June so this has been going on for about 7 months now. I guess I’m just going to be vulnerable and tell my story because I don’t know what else to do.
I first noticed that in the beginning of June as I was about to enjoy my summer off from work, I was experiencing a hard time breathing while walking fast on the treadmill. I felt like something was off and even though I had not been exercising as often, I was a healthy weight and had never experienced anything like that in the past. It felt like I was having a hard time taking a satisfying deep breath but I experienced no issues after that. Then a couple weeks or so went by and I went paddle boarding. I pushed it pretty hard and was feeling good. I was in the best shape I had been in for years. After paddle boarding, I rested on the couch and took a nap. Four hours passed as I was watching a movie and out of nowhere I felt like I had a really hard time breathing. I felt like I needed to continuously take deep breaths that weren’t allowing me to take a full breath. I noticed my chest felt like it hurt, was tight, and hurt to press on (hard to explain). I went through a couple of weeks of this before I went to the ER because then I was feeling dizzy/lightheaded all the time. It progressed to the point where I was feeling it 24/7 and had to take Benadryl to go to sleep. When I went to the ER they did a chest x ray, EKG, checked my oxygen level with the pulse oximeter and everything came up normal. The blood work came back showing I had low potassium so they gave me it through IV and after a few days I noticed my breathing was getting better but then it returned to the same level as when I went to the ER initially. They told me to load up on potassium initially foods/drinks and take it easy. They said it would take some time for the breathing to get back to normal. After several weeks i did lab work showing my potassium was back to normal. I must disclose that I have a history of bulimia and ulcerative colitis which the ulcerative colitis was not bothering me much and the bulimia was not consistent and frequent. Since the breathing issues the bulimia has not been active. My primary care dr suspected a hiatal hernia and referee me to a gi dr. Then I became pregnant so the gi dr wouldn’t do an endoscopy. I then was referred to a pulmonologist who did two lung functioning tests which ruled out asthma, Diaphragmatic issues, and said my lung tests showed up better than average. During this time sadly I had a miscarriage but was able to be scoped at that point. After my endoscopy, it was determined that there was some inflammation in the stomach, no esophageal erosion, and a mild hiatal hernia. Both the pulmonologist and GI Dr. said that a mild hernia would not cause breathing problems all the time and that I should rule out heart related issues. My cholesterol is high but has improved but I’m only 38 so they aren’t worried its heart related. As I’m pregnant again now (first trimester) the pulmonologist has told me he can’t do any more tests and doesn’t think it’s lung related. I am now on a heart monitor and the echo didn’t show anything abnormal. The cardiologist, pulmonologist, and GI Dr. said if it’s not heart reacted, it’s muscular skeletal or psychosomatic. My primary care Dr. doesn’t think it’s muscular skeletal or psychosomatic. I’ve been going to therapy about this because it has really changed my life significantly. My therapist also agrees my anxiety is not significant but it has made me more anxious dealing with all of this with no answers and being pregnant now. I am normally pretty active and I’ve gained more weight and am worried that the pregnancy is going to make my breathing worse. I feel like because I disclose my history of bulimia people box me into the category of being a psych patient and that this is all in my head. I know what anxiety feels like and I know something else is going on. It is 24/7 with some days being worse than others. I can’t seem to find any connections other than that exercise, when my heart rate increases when something good/bad happens or after a meal it can make it worse. It can feel bad when I am just sitting relaxing or lying down too. It’s so hard to describe but I feel like if I am even able to take a deep breath, it feels like a dull pain, restricted, and strained. It makes no sense to me. I have been taking a break from work because of this as well. I am a mental health professional myself and am very aware of how anxiety manifests. They have also ruled out valley fever and have concluded this is not related to covid. If anyone has any words of advice/support and suggestions, I am all ears. For those that are going through this as well with no answers, hopefully we can support each other if nothing else.
Take an SSRI. That can stabilize the neurotransmitter responsible for the chest discomfort leading to that need for a deep breath and the following air hunger and even panic. But in an emergency, go someplace by yourself and sing. Sing something that makes you happy or you're just feeling and the action changes your breathing pattern 🙂 When it happens before bed, another really effective thing to stop the air hunger is something I learned from my college psychologist. You start with your feet and tense the muscles, then enjoy the feeling when you relax them. Then you move up and do the same thing with each calf, then the thighs, belly and so on... it's a deep relaxation trick and it works! Your agonal breathing can be averted this way along with a bit of melatonin : ) But for long term, find the med that stabilizes the chemical imbalance responsible. For me, it was the SSRI.
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1 ReactionThanks for the reply Gabe! I will try and keep all that in mind. Definitely will try and keep myself distracted. Luckily it's only 3 hours.
Please have your spine checked as I had a breathing problem caused by a pinched nerve.
@emilyb33, we're certainly all looking for answers, so you're not alone! 🙂 That seems to be pretty common around here; when sitting or idling is when the breathing issues tend to flare up for a lot of people likely due to the fact that we tend to focus on our breathing issue when we're just sitting. Walking definitely helps me as well as being distracted. Are you being treated for your reflux?
@tamaracaitlin, that's interesting that you bring that up! Planes used to scare me some a while back mostly because of just sitting there. I have found that the mental aspect of just telling myself that it's no different than me going on a long drive, or sitting at my desk at work, definitely helps with that. I also just keep myself distracted as much as possible, i.e. watching the in flight entertainment, playing Sudoku on my phone, reading, etc. All these things have helped me to not worry about flying. I don't think there's a lack of oxygen on the plane, but it might feel different simply because you're flying, but it doesn't really bother me, so long as I do some of the things above, and if I can keep my sinuses clear. If you're traveling with someone, that also tends to helps me a lot because the focus of the conversation. I was having a particularly rough time a few months ago on a work trip traveling to New York only because my sinuses were flaring up, but I ended talking to a nice lady the whole way and that helped me get through it. So just mentally telling yourself you'll be fine, plenty of options for focusing on something, and conversation. Let me know how it goes! It's not bad at all so long as you have tools in the toolbox. Oh one more thing...breathing exercises and slow breathing while you're in flight. Once I am able to get the satisfying breath, I exhale as slowly as I can.
That's wonderful news! I'm really glad it's gotten better and the Famotidine is helping. I've read that GERD and acid reflux can definitely cause or contribute to a sense of air hunger. I hope it goes away entirely, but glad it seems to have gotten way better. That's always great to hear. Keep in touch and let us know how you are doing!
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1 ReactionI have this exact same problem. It normally happens to me when I’m sitting - I’ve never noticed when walking around/exercising. I have no idea why. I also have bad acid reflux and a minorly elevated liver. That’s all I know at this time, but I’m also looking for answers!