Mysterious shortness of breath

Posted by gabrielm @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?

@ptaylorboyd

I was tested ffg or molybdenum and I was 1.0. Range was 1.4 to 4, now its adjusted to 1.4 to 3.5. I did 21nme and t hff e clinic did a lot of stories tests.
People who are molybdenum deficiency cannot metabolize sulfate and sulfite. Mayo has best description online. Molybdenum deficient people also tend to have macular degeneration. I have mac-degeneration.
I was on my own in this journey as I was their first case.
I felt my way thru
I take 1 tablet….capsules with gelatin have sulfite….250 mcg of KAL molybdenum a day. Once I got solidly in range….took 21 weeks, I reduced to one tablet , 5 days a week. UW was afraid there may be side effects if I was too high. They just dont know.
NOTE. Eye doctor Rosemary Bruggeman is amazed that in 6 yrs since being diagnosed with mac-degeneration, there has been no progression. She was amazed.
POINT If people are tested for molybdenum, mac degeneration may be avoided. Kristen Reynolds of UW Madison and Dr Chetyl Gupta Milwaukee WI diagnosed me and saved my life.
My parents did not keep me but my brother said she was miserable all their adult life and blind. She did not know
Because even doc dont know or care about molybdenum, my 2 adult brothers scoff at my diagnosis. One has mac degeneration and wont get tested. His doc thinks I'm off kilter.
I'm retired univerdity adm and I have time to help

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@ptaylorboyd– That's wonderful that you would like to help. Have you been involved with advocating so far?

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Only at my clinic. Because now there only a few of us, the clinic will ask me questions. I mentor a younger woman who is molybdenum deficient as she sometimes has problems eating foods with sulfate.

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@ptaylorboyd

Only at my clinic. Because now there only a few of us, the clinic will ask me questions. I mentor a younger woman who is molybdenum deficient as she sometimes has problems eating foods with sulfate.

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@ptaylorboyd– After my first lung cancer, I found out that three people who I knew also had lung cancer. I wound up being a caretaker for one. I feel that if we luck out in any meaningful way with anything like this that we need to help others. It sounds like you feel the same way!

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Oh yes, esp since no one seems to know much about molybdenum deficiency. I have no background in medicine. Yet I had to research the precautions myself. Mayo site was the most helpful. It is disappointing so many docs say what is molyb deficiency. I told Nekia to go get tested. She did. Docs comments
A. What is molyb
B. I have the results. I dont know what they mean.
C. I'm going out of the country. When I return I'll ask someone
A month passes
D. I haven't had time to find out
…………….
Got Nakia into IUW Med School Clinic
She started supplements and feels better. KAL 250 mcgctabs sell at Vitamin Store for $5 for a 3 month supply
Other doc still clueless
Yes, I help but I help folks get right help. I am not a doctor

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@ptaylorboyd

Oh yes, esp since no one seems to know much about molybdenum deficiency. I have no background in medicine. Yet I had to research the precautions myself. Mayo site was the most helpful. It is disappointing so many docs say what is molyb deficiency. I told Nekia to go get tested. She did. Docs comments
A. What is molyb
B. I have the results. I dont know what they mean.
C. I'm going out of the country. When I return I'll ask someone
A month passes
D. I haven't had time to find out
…………….
Got Nakia into IUW Med School Clinic
She started supplements and feels better. KAL 250 mcgctabs sell at Vitamin Store for $5 for a 3 month supply
Other doc still clueless
Yes, I help but I help folks get right help. I am not a doctor

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Verify me at. Wiselives UW Madisoned College Clinic in Milwaukee with director, Dr Kristen Reynolds.

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@ptaylorboyd

Verify me at. Wiselives UW Madisoned College Clinic in Milwaukee with director, Dr Kristen Reynolds.

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@ptaylorboyd– Verify you?

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Verify my journey with molyb
I'm not a doctor but I've collected and shared many experiences for other patients

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@ptaylorboyd

Verify my journey with molyb
I'm not a doctor but I've collected and shared many experiences for other patients

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@ptaylorboyd– Oh my goodness, I hope that I haven't given you the impression that I don't believe you! We aren't medical personnel either and I don't doubt that what you say is true! I'm asking questions to get to know you better. Please forgive me if I have in any way inferred otherwise.

I do the same as you at Mayo Clinic Connect. Connect is where you can share your experiences, as you have, and find support from people like you. You can also read Mayo Clinic expert blogs and take part in educational events. I love the contact with people and the group of Mentors and Moderators who have become my extended family.

I hope that you will continue to educate our community about molybdenum deficiency.

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@merpreb

@ptaylorboyd– Oh my goodness, I hope that I haven't given you the impression that I don't believe you! We aren't medical personnel either and I don't doubt that what you say is true! I'm asking questions to get to know you better. Please forgive me if I have in any way inferred otherwise.

I do the same as you at Mayo Clinic Connect. Connect is where you can share your experiences, as you have, and find support from people like you. You can also read Mayo Clinic expert blogs and take part in educational events. I love the contact with people and the group of Mentors and Moderators who have become my extended family.

I hope that you will continue to educate our community about molybdenum deficiency.

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No problem. I just did not want to come off like I was am authority or doctor. How can I apply to be a mentor or if there already is a molyb group, how can I join. You've been very gracious and I thank you.

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@ptaylorboyd– I am an expert by experience, looks like you too! You did not come across as an authority or doctor. Just a person who knows what she is talking about. I do a lot of research for Connect and for myself on reputable science-based sites. As long as we all do that then we learn and can pass it along!
Glad to have you aboard and I look forward to reading more of your posts.

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I've had SOB for 10 months now and I'm genuinely unsure where to turn. Basically it all started during a cruise last October. I was with a bunch of friends and being younger we all drank heavily. It started as a tickle in my throat that would make me cough every few minutes, almost as if I needed to clear my throat. That evolved into a much harder cough that literally made me feel like my lungs were going to burst. I immediately went to my GP and he ran some blood tests and they came back normal. After a few weeks, I still had the cough, but I had a septoplasty with turbinate reduction scheduled and decided to go through with it. They gave me hydrocodone for the pain and when I started taking that obviously my cough went away. The issue is as soon as I got off the meds, the cough came back but even worse. I scheduled an appointment with a pulmonologist and he did 26 blood tests and 3 CTs (lungs, neck and sinuses) and found that my airways were clear but there was a possible ground glass opacity in my left lung. He told me there was nothing to worry about (but I'm still scared) and he gave me two different inhalers to use. The breathing test showed that my lungs were only filling up to 80% capacity, which he was concerned about, but after looking at everything he couldn't figure out why. After about 3 months of this "chronic cough" it started to go away but at that point I began belching a lot (20 times an hour) and had this pressure right in the middle of my chest (between the first set of abs or where the breastbone is). Most of the time it feels like I can't take a deep breath and over the past 8 months it's begun to burn here and there. Yes some days are better than others, but the pressure is ALWAYS there. Back in March I made an appointment with my gastro doctor, the same one treating my IBS and he believed it was just gas build up. Treatment didn't work so I went back for a second opinion. This time the Gastro believed it was GERD and prescribed pantoprazole and carafate. I've been on Pantoprazole for 4 months now and I still feel the same… As of today, I just saw a brand new gastro and he also believes it's GERD but he doesn't understand the SOB and kind of ignored it. Instead he prescribed me more meds and we are going to do another upper endoscopy. The scariest thing about all of this is that it's difficult to take a deep breath most of the time because it feels like someone is standing on my chest. The only way I can really explain it is that if feels as if you were to take a deep breath and expand your chest, and then while doing so try to take another deep breath. Like the center of my chest isn't expanding.

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@n0tdrew– Hello. Welcome to Mayo Clinic Connect. As you can see by the size of this discussion group you are amongst people just like you who have the same problems with taking a deep breath, and out of the clear blue too! When we inhale we think that it's a given that we can fill our lungs up and when we can't it's very scary. And on top of that, you are told not to worry about a finding in your lung. There are several things that I see going on. First, GG (ground glass) shows up on CT scans. It can indicate so many different things. I don't blame you for still being scared. In my opinion, you should have a follow-up scheduled in 3 months to see if it goes away or if it grows. If you have a history of smoking or around cigarette smoke, or any strong chemicals that could be the cause.

Do you have a history of smoking or being around people who do smoke or around strong chemicals?

Do you exercise a lot? Sometimes exercising can induce what is called exercise-induced asthma. I would also advise you to get a copy of all of your blood work, breathing tests, radiologist reports from your CT scans, and any other test results. You are entitled to them. Then have the results explained to you, in full.

There are reasons for gas build-up can be many things. You might be gulping your food now, even without realizing it. You might have cut back on your activities because of your fear. In order to get rid of gas, we need to move! Bloating and difficulty breathing can occur in a cycle: Bloating can increase pressure on the lungs, making it harder to breathe. Then, this difficulty breathing can cause you to feel bloated, or make your bloating worse. If you are feeling breathless, you may be more likely to take small, short breaths, which causes you to swallow more air. Swallowing air (known as aerophagia) can cause bloating

New medications can also cause you to bloat, especially narcotics but inhalers are known to do this too. Let me suggest keeping a journal of when you feel bloated. By writing down your symptoms, you may be able to determine what factors (inactivity, difficulty breathing, medications, or diet) are causing your bloating.

Do you think that you might seek another Pulmonologist?

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@merpreb

@n0tdrew– Hello. Welcome to Mayo Clinic Connect. As you can see by the size of this discussion group you are amongst people just like you who have the same problems with taking a deep breath, and out of the clear blue too! When we inhale we think that it's a given that we can fill our lungs up and when we can't it's very scary. And on top of that, you are told not to worry about a finding in your lung. There are several things that I see going on. First, GG (ground glass) shows up on CT scans. It can indicate so many different things. I don't blame you for still being scared. In my opinion, you should have a follow-up scheduled in 3 months to see if it goes away or if it grows. If you have a history of smoking or around cigarette smoke, or any strong chemicals that could be the cause.

Do you have a history of smoking or being around people who do smoke or around strong chemicals?

Do you exercise a lot? Sometimes exercising can induce what is called exercise-induced asthma. I would also advise you to get a copy of all of your blood work, breathing tests, radiologist reports from your CT scans, and any other test results. You are entitled to them. Then have the results explained to you, in full.

There are reasons for gas build-up can be many things. You might be gulping your food now, even without realizing it. You might have cut back on your activities because of your fear. In order to get rid of gas, we need to move! Bloating and difficulty breathing can occur in a cycle: Bloating can increase pressure on the lungs, making it harder to breathe. Then, this difficulty breathing can cause you to feel bloated, or make your bloating worse. If you are feeling breathless, you may be more likely to take small, short breaths, which causes you to swallow more air. Swallowing air (known as aerophagia) can cause bloating

New medications can also cause you to bloat, especially narcotics but inhalers are known to do this too. Let me suggest keeping a journal of when you feel bloated. By writing down your symptoms, you may be able to determine what factors (inactivity, difficulty breathing, medications, or diet) are causing your bloating.

Do you think that you might seek another Pulmonologist?

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@merpreb Hello! As you said, this really did come out of no where just like most people on this forum have stated. AS for the possible GG I was told it was maybe 3mm and to have a follow up after 1 year to see if there is growth. He really didn't seem to care at all about it, but after reading I became nervous. Also, I have been around cigarette smoke all of my life because my father is a smoker.

As for the gas build up, I'm actually extremely active due to my job so I'm not really sure what can be the cause. I have been diagnosed with IBS so I've heard that can make me super gassy from time to time. That being said, the way I feel is super weird. Like I don't feel bloated necessarily, I just have a lot of pressure on the center of my chest. Almost like anxiety/stress pressure (basically in the same spot too) but I know neither are the cause. What I find interesting is that I'm never really "out of breath" It's more of the fact that it feels like I can't take a satisfying deep breath. I can go for a run and feel fine but when I force myself to take a deep breath it feels like I'm having some sort of resistance. Like the center of my chest (where the pressure is) gets even tighter, basically to the point where it can't move any further.

In all honesty, I most likely will seek another Pulmonologist soon, right after I have another upper endoscopy performed in September. If the Gastro is unable to find anything then I really don't have anywhere to turn other than to another Pulmonologist.

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@n0tdrew

@merpreb Hello! As you said, this really did come out of no where just like most people on this forum have stated. AS for the possible GG I was told it was maybe 3mm and to have a follow up after 1 year to see if there is growth. He really didn't seem to care at all about it, but after reading I became nervous. Also, I have been around cigarette smoke all of my life because my father is a smoker.

As for the gas build up, I'm actually extremely active due to my job so I'm not really sure what can be the cause. I have been diagnosed with IBS so I've heard that can make me super gassy from time to time. That being said, the way I feel is super weird. Like I don't feel bloated necessarily, I just have a lot of pressure on the center of my chest. Almost like anxiety/stress pressure (basically in the same spot too) but I know neither are the cause. What I find interesting is that I'm never really "out of breath" It's more of the fact that it feels like I can't take a satisfying deep breath. I can go for a run and feel fine but when I force myself to take a deep breath it feels like I'm having some sort of resistance. Like the center of my chest (where the pressure is) gets even tighter, basically to the point where it can't move any further.

In all honesty, I most likely will seek another Pulmonologist soon, right after I have another upper endoscopy performed in September. If the Gastro is unable to find anything then I really don't have anywhere to turn other than to another Pulmonologist.

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@n0tdrew– 3mm is tiny but I would think that a 6-month follow-up would make your mind rest easier. IBS will certainly make you feel bloaty. Gas can feel different in different parts of the body. Your plan for your future health sounds great. Please, if you can let me know about your endoscopy. I'm a chicken, I have the dr. put me out.

Liked by n0tdrew

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I haven’t wanted to post on this forum for a bit but finally decided that I should. This chat has been super helpful for me in a time where I’ve felt super alone and not in control of my body and mind. I won’t go too into depth because everything I have been feeling, all of you feel too. I just want to figure this all out, it’s so frustrating. I wake up unable to breath, so I don’t sleep. I can’t be just sitting around doing nothing because I’m so fixated on the fact that I can’t breathe and need to yawn to get any sort of satisfying breath. It’s just awful. And it’s been soooo much worse since coronavirus started, although I don’t really feel anxious or anything, which is super weird. I was also diagnosed with IBS, which they said goes hand in hand with anxiety which is where my breathing thing stems from. But it just all came at once and I don’t feel like all I have is anxiety. I will say, I am on birth control and have just decided to stop it to see if that has any affect on my breathing since added hormones can make anxiety more exacerbated. If not I feel like a low dose anxiety medication is the only other thing to do. I can’t live with this anymore. I just can’t.

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