Mysterious shortness of breath: What has helped you?

Posted by Gabe, Volunteer Mentor @gabrielm, May 31, 2018

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.

jduffy | @jduffy | Nov 1, 2020

In reply to @lewismustard "My SOB is from anxiety and stress. I take a stress relaxer and it goes away...." + (show)

All the drs seem to think my issue is anxiety but I’m not anxious at all (Except about breathing) and have less stress then ever (2 kids off to college, last one at home, we’re a happy loving family). This really appeared out of nowhere.

lewismustard | @lewismustard | Nov 1, 2020

In reply to @jduffy "Also, the other 7 types of body eat very differently. There’s one type that avoids all..." + (show)

How much of what one eats is determined by beliefs as opposed to physiology?

lewismustard | @lewismustard | Nov 1, 2020

Have you consulted a psychiatrist in your exploration of all the angles?

jduffy | @jduffy | Nov 1, 2020

In reply to @lewismustard "Have you consulted a psychiatrist in your exploration of all the angles?" + (show)

Im just trying to eat healthy and consider all the various diets out there, whether it be paleo, vegetarian, pescatarian, etc. But with so much conflicting info about what’s actually healthy I’m trying to use common sense as well.
As for a psychiatrist, I have a feeling the end result is head medication and I don’t want to head (no pun intended) there yet. I think I’d try natural stuff before prescribed meds anyway.

Merry, Alumni Mentor | @merpreb | Nov 2, 2020

In reply to @jduffy "I have not. But probably should do that as well as an endoscopy test. Those are..." + (show)

@jduffy- I would be concerned too if my CT scan showed minimal areas of dependent atelectasis on both lower lobes. Atelectasis is a complete or partial collapse of the entire lung or area (lobe) of the lung. It occurs when the tiny air sacs (alveoli) within the lung become deflated or possibly filled with alveolar fluid. Atelectasis is one of the most common breathing (respiratory) complications after surgery." Mayo Clinic 2018. What recommendations did the radiologist make concerning this?

Merry, Alumni Mentor | @merpreb | Nov 2, 2020

In reply to @jduffy "Hi, the instructions said do not eat two hours before or after taking so I didn’t..." + (show)

@jduffy

Hi, the instructions said do not eat two hours before or after taking so I didn’t for 5 weeks. Had no idea what it would do geez! But I had the SOB weeks before starting the doxy. I am definitely on my way to losing this extra 20 lbs. already lost 10lbs dealing with this. But thats hopeful to hear if I lose more weight this sob might subside. As for diet. It’s interesting, if you google hepatonia it will lead you to the other 7 body types that exist according to this approach. There’s 8 total. The acupuncturist determines your body type by pulse and based on that you eat according to your body type. I am supposed to eat beef, protein but NO seafood or green leafy items. It sounds so ridiculous I know. But I will say I stopped eating beef and milk about three years ago when the allergist said I was mildly allergic. When I recently went to the allergist for another prick test( One month after the sob attack) I was completely not allergic to beef. So strange. But then he told me that the prick tests are about 40-50% false positive for allergies! So I might have never been allergic to beef. Anyway so this whole time I havnt been eating beef and this acupuncturist did not know that. So now I’m eating about 3oz of Lean organic beef 5 days a week, root vegetables (something about eating only vegetable under the ground) all citrus and melons, zucchini apparently is fine. It seems crazy I know but I’m trying to use conventional western healthy guidelines as well but def staying away from seafood and greens. He’s saying it about what foods are harmful to my body type rather than loading up on the foods I can eat like beef so it’s moderation on what I eat
And avoid the things that are harmful. Hope this makes sense.
I was wondering, does anyone get a cough when you exhale deeply? I seem to get an occasional dry, very brief cough when I exhale deeply and only at the end of the exhale.

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@jduffy- The last time I was put on doxy at home was for Lyme disease. When I picked up the prescription my pharmacist said to eat before it.. Things can get very confusing. I always ask my pharmacist if there is anything that I shouldknow about the drug. Does this make sense?

nla4625 | @nla4625 | Nov 2, 2020

In reply to @merpreb "@jduffy- I would be concerned too if my CT scan showed minimal areas of dependent atelectasis..." + (show)

Merry - thanks for writing this. I just looked at the radiology reports on my chest x-rays, and the radiologist mentions atelectasis in the bottom part of both lungs. I didn't know enough to pick this up when I first read the reports. I'll follow up on it but wonder if there is anything can be done about it. Thanks again. Nancy

lewismustard | @lewismustard | Nov 2, 2020

In reply to @jduffy "Im just trying to eat healthy and consider all the various diets out there, whether it..." + (show)

Good choice

lewismustard | @lewismustard | Nov 2, 2020

In reply to @nla4625 "Merry - thanks for writing this. I just looked at the radiology reports on my chest..." + (show)

Atelectasis the air sacs of the lungs—do not expand properly. As a result, the blood may not receive adequate oxygen—a situation that can lead to various health issues. See your attending physician

yaramarthe | @yaramarthe | Nov 11, 2020

In reply to @anned "Hi @gabrielm I have never posted on one of these forums before but your original post..." + (show)

@anned

Hi @gabrielm I have never posted on one of these forums before but your original post describing the inability to get a good deep breath or a satisfying yawn intrigued me and I thought I would share my experience.

I am 41F and had these health conditions long before this started for me:
Life-long chronic asthma (usually triggered by illness)
Non- allergic rhinitis (so many symptoms always negative allergy tests)
Migraines
Prone to viruses and infections since childhood

Then came the mysterious SOB, chest tightness and unsatisfying yawns from out of no where. Makes me miserable. Like difficulty focusing on anything else and exhausted from not even sleeping well because of it.

Pulmonologist/immunologist prescribed Prednisone which, I think, helped some but the miserable inability to breathe deeply came right back when the meds were gone. Back to the same Dr and she trys adding a new inhaler to my daily regimen. I want that to help so much but nope, I still can't get no satisfaction. Back to the same Dr who starts sending me for every test imaginable. Lungs, heart, ENT, allergies, CT scans, lung function, stress test, a gazillion labs. Honestly nothing is showing up, my asthma is not that severe and seems pretty well under control. The only exception are the labs for my immune system were not great. She confirmed that I had been properly vaccinated as a child and then said the tests showed some kind of immuno-dysfunction. So she sent me to get a test vaccine to see what would happen. First labs after that were fine, I still had immunity. My doctor all throughout this has been thorough and kind, she says we have to wait to see over time to see if I retain my new immunity.

The pulmonologist believes me regarding the breathing problem, which is something at least. She has me start steroid nasal rinses. If you haven't done those every morning, you are really missing out, let me tell you. The pulmonologist wonders could it be vocal chord dysfunction and sends me to a voice therapist while we wait to retest. The voice therapist is great and compares notes with the ENT but rules out VCD. She however suggests Prilosec in case it's GERD. Sure why not? I'm just a test subject now anyway.

Meanwhile, I am still miserable and feeling like I can't breathe well, even though the results of the all the tests so far show I'm supposedly fine. It's slightly comforting to know you aren't dying when it feels like you are. Discouraged and desperate. I started searching online for clues. I try breathing exercises, calming exercises. Changing diet. Making sure I am not stressed. Drinking more water. And searching the most remote forums of the medical internet. I find a lot of people complain of similar symptoms but no one has an answer. Such a mystery. And then one day, I stumbled on to something. The article talked about Mast Cell Activation Syndrome. I was like, oh great another one of those internet conditions that people use as an excuse for why they can't eat gluten or dairy or any other foods that people all over the globe have consistently eaten for millennia. Nope I definitely don't want to have that. But the symptoms list included a bunch of stuff that I had always struggled with AND the feeling like you couldn't get a satisfying breath. Consider me curious. Not enough to buy the books sold by internet doctors but definitely wondering if there was anything that others had found worked to help the breathing thing. Remarkably the treatment seemed consistent across multiple sites and it wasn't some kind of expensive supplement or exclusive diet. It was a regimen of antihistamines. What??? No way that would do anything. But gosh...it can't hurt to ask the Dr., right?

So when I went back for blood work the Dr asked how I was doing? I said I was still feeling that struggle to breathe deeply and I couldn't remember the last time I had a satisfying yawn. And she stopped what she was doing and said, "the mind and the body are very connected. What has been going on at home lately? Have you thought about seeing a therapist?" I was immediately so frustrated and felt tears welling up in my eyes. Not the best way to prove I was emotionally and mentally sound. Lol However I got myself together and firmly said, "Look everything at home is fine. Except me, because I feel like I can't breathe. And not being able to yawn, as freaking crazy as that sounds, is what is making me miserable and it's not the other way around at all. But I assured her I was willing to try ANYTHING and would call a therapist. However, I finally mustered up the nerve to tell her I also had an idea I wanted to run by her. So I told her about my internet research. And learning about MCAS. That is all the doctor's very favorite thing, when their patients google the things they spent years and years and years of their lives studying. I'm sure she was just patiently humoring me and didn't think it was going to work. But she agreed that the extra doses of antihistamines wouldn't be dangerous even if they didn't help.

So I went home and got my meds together. I decided to do Claritin, Zyrtec and Zantac (instead of Prilosec) twice a day and just see what would happen. Yeah that was before we knew about Zantac's evil cancer causing properties. I ended up switching that out for Pepcid. Honestly I don't think I had my hopes all that high that it was going to help and for the first couple days I don't think it did. But a few days in and started noticing a sneaky good yawn. Not every time, but just here and there, every so often I would feel that satisfaction of a really good deep breath. At first I thought it was a fluke. But by the second week, it was happening more and more often. Ahhhh. Relief. I could breathe fully again.

Going back to the pulmonologist, I was like there's no way she is going to believe me. But she did! She didn't have great news for me about my immunity. And she wanted to start me on treatment for that. But when I described how much the antihistamines were helping me, she was really glad for me. I said I didn't think it even made any sense why they would have worked and she said oh it actually does make sense to me and then some Dr mumbo jumbo or other. I was ready to ditch the new inhaler right then and there and she could see I obviously felt much better and she told me she was really glad but we'd continue all that we were doing for the time being and hope it kept working.
So... over a year later... I'm happy to say it's still working. I have had some brief times where my breathing has been a little sketchy but I think it is connected to allergic type triggers. And overall I am doing so much better!!!! I am still using the asthma meds and have also added quercetin twice daily and Nasal Crom spray as needed.

Obviously I'm not a doctor. But OMG it's working for me. Nothing in this post is speculating that anyone else has the same diagnosis as I do or that what my doctor and I have tried for me will help you. What I hope to convey with this post, is that your health is worth fighting for. If at first you don't succeed, keep trying until you get the answers you need. And if your doctor is unwilling to help you adequately, then find a new doctor. You are paying them and nobody has time for that crap.

I would be glad to answer any questions y'all might have for me.

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Hey could you please tell me the exact dose for those medicine you took because I’m going through this right now please answer if you see this

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