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.

@uzairkashtwari92

Thanks Gabriel! I am developing anxiety issues which is causing me panics and deep thoughts! I hope we all get healthy soon!

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@uzairkashtwari92- I understand. I find that when I don't have answers to a symptom I tend to think the worst. Recently I had a very unexpected vertigo incident that set off a migraine. Even after seeing my doctor I felt as if they were missing something and that something was very wrong with me. But it was a simple "earthing" and I'm back to normal now. Please at least try the breathing exercises suggested in this post. If it's not too hot perhaps take a slow leisurely walk and practice your breathing. Keep on pushing your doctors for answers. What did the last doctor you saw say?

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@palmtrez123

Hi everyone. I'm new on here as I just found this site today. I started having severe SOB daily since May, 2019. I have a history of asthma, however this is nothing like asthma. Albuterol has always helped with the asthma, but not this SOB. I've been to an allergist (nothing out of the ordinary for me), cardiologist (all tests were fine), CT Scan, chest xray, many bloods tests for everything imaginable which all came up fine. one pulmonolgist just plain gave up at my 2nd appt. and told me to go to the Mayo Clinic, my new pulmo put me on 10 days of doxycycline and switched me from Symbicort to Trelegy (which made it worse so I switched back to Symbicort - not that it helps but I just feel like I need to take something/anything. I've been to a nutritionist, acupuncturist, tried holistic IV therapy and nothing is helping. I eat healthy, and before this I had some anxiety and take meds for it, but this feels so different. Some days I feel like I won't wake up in the morning because I feel so bad and kind of surprised when I do. I just started going to yet another dr's office that does allopathic and holistic medicine. Not sure yet what they will come up with. I went to a gastro dr. who put me on Prilosec but I started getting tremors on it after 5 days so I stopped taking it. He didn't seem very concerned that I'm struggling to breathe, so I won't go back to him. I just don't know what is happening to my body. I was fine and then one day just woke up with this last May and have been suffering since then. I feel like my quality of life is down to about 10 percent. My chest hurts all the time and it's such a struggle to breathe. I have another appt. with the pulmo dr. in 2 weeks, I'll see what he suggests at that time.

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@palmtrez123-Welcome to Mayo Connect. Please don't think that there isn't hope for you SOB. Right now I would take your doctor's advice and see when and how you can get an appointment at Mayo Clinic.Is there a Mayo Clinic near you? http://mayocl.in/1mtmR63
It is very frightening to think that you are just going about your business and suddenly you can't breathe. When you sleep most of your muscles around your lungs relax and you are able to breathe so I think that waking up won't be a problem. Do you exercise a lot? Did you start a new medicine around the time that you started getting tremors after you began Prilosec? Tremors are not one of the more severe side effects of Prilosec. I'm thinking that it might have been synergistic with another medicine that you are taking.

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@merpreb

@greff- Good morning. You bring up an excellent point and reminder. There are side effects to all medicines and they might not happen for several months or even years. I take Trelegy Elipta and I have been warned to rinse my mouth after I use it in the AM for fear of thrush. And I am not to swallow, so be careful not to swallow when you gargle! Are you thinking that this infection will help you breathe more easily? What made you feel like you had a problem other than asthma and gerd?

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I researched everything that could cause sob. My symptpms somewhat matched esophageal and throat conditions. Therefore I thought I might have the gerd causing issues along with possible stenosis of the throat due to being intubated so many times. I still might be right on the gerd irritating the esophagus. I'm losing confidence in my Gastrointerology people. They can't get their diagnosis pr reports right. Even my pulmonologist and the ENT specialist seem perplexed by their clinical impression. Anyway, the ENT guy seems to be on top of things for now. I'll stick with him for sure but may switch to another gastro specialist.

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@greff and @merry I read about Diflucan and it has major contraindications when taking alprazolam. My primary dr. did give me an Rx for it and she already prescribes alprazolam for anxiety, I'm really afraid to take it because of the contraindications. I have severe reactions to most medications. I also had a nasopharyngoscopy by my allergist and he said that I have chronic sinusitis and told me to use Sensimist. I use that but it doesn't make a difference. I have literally already spent thousands going to specialists and holistic doctors and taking a gazillion supplements. Not having a specific diagnosis makes it so tough and I can't afford to go to the Mayo Clinic. For anyone that has had a bronchoscopy, are they very painful? I'm terrified about having one done if my new pulmo dr. requests one.

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@merry I wasn't taking any new med's when I tried the Prilosec. It was so weird that my hands were shaking like crazy after only 5 days. And stopped again after I stopped taking it.

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@palmtrez123

@greff and @merry I read about Diflucan and it has major contraindications when taking alprazolam. My primary dr. did give me an Rx for it and she already prescribes alprazolam for anxiety, I'm really afraid to take it because of the contraindications. I have severe reactions to most medications. I also had a nasopharyngoscopy by my allergist and he said that I have chronic sinusitis and told me to use Sensimist. I use that but it doesn't make a difference. I have literally already spent thousands going to specialists and holistic doctors and taking a gazillion supplements. Not having a specific diagnosis makes it so tough and I can't afford to go to the Mayo Clinic. For anyone that has had a bronchoscopy, are they very painful? I'm terrified about having one done if my new pulmo dr. requests one.

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palmtrez123, my ENT stated that there are several medications in the same class of drugs. My ENT and pharmacist checked my other medications to ensure that it would not interact with my smorgasbord of meds. Just a thought. Also, when he scoped my throat,. My vocal cords were severely irritated, which is why he told me to gargle everytime (to get the inhalant medication rinsed off of the cords). He also mentioned that I get a bronchoscope done. I think I will once I see if these meds work.

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@palmtrez123

@greff and @merry I read about Diflucan and it has major contraindications when taking alprazolam. My primary dr. did give me an Rx for it and she already prescribes alprazolam for anxiety, I'm really afraid to take it because of the contraindications. I have severe reactions to most medications. I also had a nasopharyngoscopy by my allergist and he said that I have chronic sinusitis and told me to use Sensimist. I use that but it doesn't make a difference. I have literally already spent thousands going to specialists and holistic doctors and taking a gazillion supplements. Not having a specific diagnosis makes it so tough and I can't afford to go to the Mayo Clinic. For anyone that has had a bronchoscopy, are they very painful? I'm terrified about having one done if my new pulmo dr. requests one.

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@palmtrez123 - One of my worst fears was having a bronchoscopy. Thankfully my GI guy puts me out for a bit. My husband does it without anything. Here is some information about it: I do know that a lot of people gag at the beginning and then again at the end.
https://www.medicalnewstoday.com/articles/322178
https://www.mayoclinic.org/tests-procedures/bronchoscopy/about/pac-20384746

When I have an operation or procedure and I have to have anesthesia there is often a Bronchoscopy done. And yes, I often have a sore throat after. But since I've never had one awake I will leave it to those who have.
@gabrielm;@greff;@helpnywhereucan;@helena4000;@jenniferhunte: Have any of you had a Bronchoscopy awake? How was it for you?

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@greff

I researched everything that could cause sob. My symptpms somewhat matched esophageal and throat conditions. Therefore I thought I might have the gerd causing issues along with possible stenosis of the throat due to being intubated so many times. I still might be right on the gerd irritating the esophagus. I'm losing confidence in my Gastrointerology people. They can't get their diagnosis pr reports right. Even my pulmonologist and the ENT specialist seem perplexed by their clinical impression. Anyway, the ENT guy seems to be on top of things for now. I'll stick with him for sure but may switch to another gastro specialist.

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@greff- It does sound like your ENT is on top of things and that he looks at things closely. You are lucky to have found such a doctor.
Please keep us appraised!

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@greff

Hi palmtrez123, I have posted about my sob a week ago as well. I also have severe asthma and gerd (which they initially said it was Barretts and I still think it is). Anyway, I have had endoscopies, ct scans, I've been prescribed everything under the sun with my asthma (as my pft show moderately severe obstruction) to no avail. None of my asthma meds work with improving my breathing. Anyway, yesterday I went to see an ENT and he scoped my throat because I was concerned that it may have something to do with trachea stenosis or possibly a tumor. After scoping my throat, he said that I have chronic fungal laryngitis most likely as a result of taking all of my asthma meds (the inhalers I'm talking about). He told me to make sure and not only rinse my mouth (which I had been doing) but also gargle my mouth out with water thoroughly after each use of any inhaler. He also put me on Fluconazole 100mg (generic for Diflucan) taking two pills the first day and one pill for the next nine days. I took my first dose last night, and fill a little better. I hope this works but I encourage you to see an ENT and have your throat scoped. I have learned that inhalers can reek havoc on our throats. (Catch 22- we are darned if we use them and darned if we don't). God bless and don't give up.

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Hi greff! That's interesting about the fungal laryngitis. I hope the Fluconazole works for you. I've been using an albuterol inhaler for so many years and worry about what's it's doing to my throat. I won't give up since I can't live like this forever. Someone has to has to be able to diagnosis this.

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@palmtrez123

Hi greff! That's interesting about the fungal laryngitis. I hope the Fluconazole works for you. I've been using an albuterol inhaler for so many years and worry about what's it's doing to my throat. I won't give up since I can't live like this forever. Someone has to has to be able to diagnosis this.

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I'll pray for you. This stuff ain't much fun is it.
Keep searching for answers. God bless.

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