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?

@merpreb

@kjconrad– Hi. Have you been checked out by a GI doctor yet? You mentioned earlier that you thought you might have GERD. What kind of a doctor did you just see?

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And my primary care doc said he would not give me a referral to a GI doc

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@kjconrad

Just left the doctor and it is frustrating because he said I don’t need any referrals and that I am healthy. He said wants me to try an anxiety medication for 4/6 weeks. I told him I get anxiety over the air hunger but other than that don’t really have it. Not sure if I should give it a go or not. Has anyone has their SOB go away while on anxiety meds?

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Nope. They lessen the intensity of attacks though. My doctor kind of explained it to me that the anxiety medication may "break a habit" of the SOB. So, he put me on Xanax for a while. I still get attacks though.

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Hey all…just wanted to stop by. Hope everyone is getting to the bottom of their issue. As I stated in previous posts, I tried the natural route. My doctor stated it was anxiety. I'm not buying it.

Anyway…I'm feeling much better. Here's what I did:

Ate healthier, including potassium rich foods; potassium helps with lung expansion and contraction and alkalization

Focused on getting more greens and vegetables to combat acidity. I took vegetables and powdered supplement (this will help if you have GERD)

Made sure I was getting ample amounts of magnesium. If you decide to supplement, do your research. Magnesium can cause loose stools. Find the form that works for YOU. Magnesium helps with anxiety, asthma and allergies and a whole host of other things.

Get adequate Vitamin D. I get lots of sunlight, I supplement. Vitamin D also helps with certain lung infections and certain forms of asthma.

Take Cod Liver Oil: Vitamins A & D are important for lung health. Cod liver oil has also been shown to combat lung disorders including infections like pneumonia and asthma ( I took it just in case my SOB was related to that) https://hvmn.com/blog/supplements/cod-liver-oil-benefits-of-this-super-supplement

A take a good food based multivitamin

I take a trace mineral supplement occasionally and eat small amounts of salt that contains trace minerals. Sodium helps regulate electrolytes. Doctors have told us not to eat it, but we need small amounts to be healthy

I maintain adequate hydration. In addition to regular water, I drink alkaline water that contains trace minerals

I walk every day. I read exercise helps balance o2/ co2 levels.

These are all the things I've done. I wanted to leave no stone un-turned. I still experience SOB from time to time if I get dehydrated or stray too far from my diet but I can tell it's on its last leg. Compared to what it used to be, I can handle a minute or so of it, here and there. Just like it took time for nutrients to deplete, it will take time to build them back up. I hope to come back in a few months and tell you it's completely gone. Fingers crossed.

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I feel relieved I found this group. I have been dealing with this feeling for over 20 YEARS!!! Sometimes (like now) worse than others but it's always, always there. I can't find a common denominator to save my life. I have seen tons of doctors and everything comes back normal. Every year or so I get bad chest pains (along with scary arm, jaw, face and neck tingling) as well and they go through all of the tests again and they all come back normal. Which is good, but not. I want to know what's wrong! I had a stress test this week and it was normal. Next week I have a GI scope. I have read some comments that sometimes it's silent reflux. My doctor put me on (generic) protonix over a week ago, and unfortunately I haven't notice much of a difference. I was hoping it would be the miracle drug.
I too am not buying anxiety. I had a huge flare up last week, when I was on vacation from work. I was excited to have off and relaxed. It is so debilitating though. I know I should exercise, but it's hard to force myself when it feels this way. I do sometimes have a better day when I do. This does not effect my sleep and I don't feel it for the first half hour or so when I wake up, so I will sometimes so my treadmill at this time to get in some exercise.
I am overweight but healthy, but have had the same issues when I wasn't overweight. This all started when I took phen-fen (I was on for about 2 weeks.). I went through all of the tests then that were linked with issues and they found nothing and have done them all several times since. It also started right after my sister passed away in a car accident and I've read somewhere that traumatic events can cause things like this. But since then, I do not feel depressed or stressed other than this being my life now.
It's to the point when people notice and ask why I had to stop and brace myself to attempt to pull a deep breath in. I pray for answers, but am grateful to have found others in the same boat.

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@maggiesmom

I feel relieved I found this group. I have been dealing with this feeling for over 20 YEARS!!! Sometimes (like now) worse than others but it's always, always there. I can't find a common denominator to save my life. I have seen tons of doctors and everything comes back normal. Every year or so I get bad chest pains (along with scary arm, jaw, face and neck tingling) as well and they go through all of the tests again and they all come back normal. Which is good, but not. I want to know what's wrong! I had a stress test this week and it was normal. Next week I have a GI scope. I have read some comments that sometimes it's silent reflux. My doctor put me on (generic) protonix over a week ago, and unfortunately I haven't notice much of a difference. I was hoping it would be the miracle drug.
I too am not buying anxiety. I had a huge flare up last week, when I was on vacation from work. I was excited to have off and relaxed. It is so debilitating though. I know I should exercise, but it's hard to force myself when it feels this way. I do sometimes have a better day when I do. This does not effect my sleep and I don't feel it for the first half hour or so when I wake up, so I will sometimes so my treadmill at this time to get in some exercise.
I am overweight but healthy, but have had the same issues when I wasn't overweight. This all started when I took phen-fen (I was on for about 2 weeks.). I went through all of the tests then that were linked with issues and they found nothing and have done them all several times since. It also started right after my sister passed away in a car accident and I've read somewhere that traumatic events can cause things like this. But since then, I do not feel depressed or stressed other than this being my life now.
It's to the point when people notice and ask why I had to stop and brace myself to attempt to pull a deep breath in. I pray for answers, but am grateful to have found others in the same boat.

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@maggiesmom– Welcome to Mayo Connect! I'm glad that you found us. SOB effects so many people. I hope that you have read some of the posts so that you can see what others have found. That's good that you are seeing a GI person for an endoscopy. Being even slightly overweight can make GERD worse, so if you are like me and EAT when you are on vacation that can cause a flare up. What kind of a diet do you normally eat at home?

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I eat well during the week, but tend to slip up on the weekends between good and beer. And not that that's every weekend, but that's when I were to eat more and binge drink. My latest flare up was definitely after a huge eating and drinking day.
I'm on 40mg of Protonix. Is that the "normal" dose?

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@gabrielm, I understand your fears. About 2 years ago, I started having shortness of breath. My doctor was dismissive saying it's because of my weight and lose some weight, get more exercise and it would go away. I also have arthritis in my knees (have for a long time, even before weight gain). My husband I were looking for a cardiologist to see to have myself evaluated when I fell from weakness in my knees and having difficulty breathing. An ambulance came, gave me a shot of heparin, oxygen and rushed to the ER. Well, they found a DVT (deep vein thrombosis) in my femur and the right side of my heart was enlarged…two Massive Pulmonary Embolism at the entrance to my heart … the massive embolisms were 2×3 cm and 4x6cm. The hospital had never seen PEs so huge. I spent a week in the hospital. They were able to break up the PEs, but subsequently I still have multiple clots in my lungs and am on blood thinners for life. Subsequently I see a Pulmonologist and Cardiologist twice a year. So far after numerous blood tests recommended by a hematologist they have found no cause. Don't let doctors dictate when you know there is a problem. If I had listened to my own GP I would be dead now that is a fact. I am considering a new GP as a result.

Liked by Jennifer Hunter

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https://www.letsrun.com/forum/flat_read.php?thread=3847053 Here is another link with many people having the same issue. I’m sorry you had the DVT and had to go through what you did but it’s also relieving to hear your “success” story of actually finding it in time. However, I don’t believe most of you have to worry about DVT (I am NOT a Dr.) but I have spoke to many about the same issue you are all going through. I am going through the exact same thing. I have heard DVT, Pulmonary Embolism, Asthma, COPD, Heart conditions etc. However our symptoms are not that of TRUE SOB. We get it intermittently and can get a deep breath every few breaths unless we get panicky and we can continue to overbreathe and hyperventilate until we can get ourselves to calm down and finally get a deep breathe in. It can be a vicious cycle. I too have no problem once I lay down and relax to go to sleep. Mine also tends to be worse about an hour or so after I wake up and start thinking about it. I have YouTubed every thing about breathing and I feel like I figured it out while watching the videos and focusing on my breathing but shortly after I revert back to this annoying way of breathing. Anybody else dealing with exactly this same way of life? This is mind related 100% unfortunately I only believe it 75% of the time. The other 25% I tell myself this has to be something serious. Lung Cancer, COPD etc and then I get back into a whirlwind of an anxiety mess. If I go all day without thinking about it and I’m busy I’m fine. It’s when I think I’m going to beat it and try taking breath after breath when this happens.

Liked by alureon, nycmom

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What is the best OTC to help repair damage from acid reflux? I've had this for years but did not really understand the symptoms. Dr's were not much help. Like most here I had many different tests done but nothing conclusive. I've been using prilosec for a couple of weeks now. It ran out and I bought zantac, Is it ok to cycle these meds? I still have a bit of indigestion but it is much better with the prilosec. Just started using zantac so not sure how it will work. I also try to take a fast acting antacid but they don't seem to do anything. Wondering what diet modifications I should make. I love coffee and hope this is not affecting my stomach.

Liked by alureon

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@deanna1015

Hi kat, I am just curious what were your main symptoms? Was it mostly just the breathing? All of my doctors have pinned it on anxiety as well, but similar to your experience it was hard for me to accept at first. My doctor does want to start me on a medication similar to sertraline, it is called lexapro, but I am hesitant to start a medication. Did you notice a significant improvement? Has it gotten better at this point now? And how long have you been on the mirtazapine for? Thanks again for your help, and I hope that this problem will eventually go away!!!

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Hi! I have been having all these symptoms just like yourself and everyone else here. My primary doctor also prescribed me Lexapro. Did you end up taking this medication? Please let me know!!! 🙂

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@oliviah9

Hi! I have been having all these symptoms just like yourself and everyone else here. My primary doctor also prescribed me Lexapro. Did you end up taking this medication? Please let me know!!! 🙂

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@oliviah9 – Good morning and welcome to Mayo Connect. As you can see int his group there are many many posts that have experienced the same symptoms that you might be having. Please continue to read as many as you can. What have your other symptoms been?

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@nycmom

Thanks for your thoughts. It's interesting what you say about posture–I am breastfeeding and my posture is definitely terrible as a result of the hours where I am basically slumped over versus sitting straight up. After you posted that I made an effort to stand and sit up as straight as I could and I noticed the slightest improvement in my SOB. That said, I still have weird pains and aches in my back and chest that create so much anxiety about what this could be. I have started the lexapro because as a result of all this SOB/air hunger issues I have been having my anxiety has become really bad. I am skeptical, annoyed even, that SSRI's have been recommended but I don't know what else to do. I have three young kids and I am desperately needed to be present and healthy and I feel I am living in a nightmare right now. I can't even begin to really explain what this is all like to my husband which makes me feel more alienated. Anyone else feel this way?

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Hi! Has the lexapro helped your breathing symptoms?

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@gabrielm

Thanks for the reply! I have explored the possibility of anxiety and stress, but I don't experience any of that, at least beyond the norm. I might have a stressed out day now and then, but I'm not a stressful person and am pretty easy-going. I don't have anxiety. The SOB is just always there. Always. Whether I'm at work, at home, stressed, not stressed, but stress for me is very uncommon. I have a low-stress job. So I'm not convinced it's that. So I still have no idea what it is; I'm looking into submitting my case to CrowdMed.

I'm doing alright, thank you for asking. I would say that over the past 6 months I have experienced periods of improvement from days to even weeks. Not 100%, but enough to where I didn't really notice it all day. Then I would have random bouts where it would get kind of bad, where I just can't get a deep breath, and when I do it doesn't last long before I'm desperately needing another. That would go on for a few days, and then it would get better again. So it's still up and down, and it's manageable but not normal at all. I still do exercise when I can, to an intensity that my breathing will allow- some weightlifting sessions allow me to lift a decent amount of weight with not as much rest in between, and other times I have to cut my sessions short after lifting light weights and having to rest for 5 minutes in between sets. So it all depends on the day I guess.

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What are the Breathing exercise you tried called

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Hi all! I have just finished reading this whole thread. I also have all of these exact symptoms. I am a 20 year old female who is healthy and I also play college soccer and am about to return to school. So this situation is very scary for me. I started noticing this "air hunger" on June 28, so I've had it for about 6 weeks. I first noticed this happening while I was on my cruise trip and we were in Puerto Rico. We went snorkeling that day and a little bit after that I noticed this breathing thing occurring. I have to "fight" to get a breath, I crave that deep satisfying breath, I can only sometimes get that deep breath, I normally try to get the deep breath through my mouth (I don't know why but it makes it easier it seems), I also have chest/heart pain that is on my left side and makes me want to try to massage my heart, I have had a fast heart rate from this which I think is just caused by anxiety bc of not being able to breathe right. I have had all bloodwork done and everything seems fine. I have had a lot of heart exams done as well. I wore a heart monitor for 2 weeks and everything seems fine. I have an average heart rate of 90 which is higher than it used to be. I have a feeling I'm dealing with some anxiety because of these symptoms, but I don't believe it is causing it. I have not seen a pulmonologist, ENT, or GI. My doctors all are trying to write this off as I know most of you have experienced also. They are trying to pin it on stress and anxiety of course. I was prescribed lexapro which is an anti-depressant and anxiety medication. I am very hesitant to try it as messing with my neurotransmitters scares me a lot and I don't believe this will fix the problem. I also have a therapy appointment in a few weeks. Have any of you tried anxiety medication or therapy to help this? I am wondering if it is mainly a mental thing as all of us have gone through so many examinations and all come back normal. Let's please keep this forum going, so we can maybe solve this!! Please give me any advice 🙂

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@oliviah9 – Welcome to Mayo Connect. I'm very glad that you have read the threads about SOB. It's pretty scary when you find that what was natural, like a deep breath, is suddenly gone. Have you had any chest Xrays or CT scans? I believe that it would benefit you to see a pulmonologist and a GI person. I know that when I'm on vacation I eat more than usual and things that are not as healthy for me. Perhaps some backed up on you and you ingested it. This can happen in your sleep too. Do you think that your Md's will give you a recommendation?

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