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.

@mdrickards

Claire,
I had to look up IPF, and am so sorry you have this. Your doctor feels the IPF is related to Covid or the vaccine?
When I read the initial post by Gabe, I found that most of his description matched my symptoms. But, they all pre-dated Covid. I never got the vaccine. I did get Covid in June of this year, and while miserable, it never exacerbated my breathing issues.
I am worried, though, about my lungs, as my father passed from COPD. He was a smoker, and our family home was heated with a wood burning fireplace. Please tell us about your IPF.

Jump to this post

Hello  I was very healthy till 2021. I had all my vaccines,  In Sept I got a mild case of Covid.later in the year  2022 I was in the hospital twice. My second visit I had to have my right kidney removed. Invasive Cancer. It went down hill after that. I am on O2 most of the day time. I have been told by my Cardiologist I am perhaps one of the many who had damage to my lungs due to both Covid and the shot   plus the booster. . I hope you have a great Pulmonologist? Get  a second or third opinion. I have an appt. at the Mayo clinic. for the end of this mo.  I am also taking a med called OFEV. I have just started to take it. Side effects a tough. I will keep you posted.  I wish you the very best. God Bless you I do understand what it feels like not to be able to breath.   Hugs

On Thursday, August 11, 2022 at 12:44:13 PM EDT, Mayo Clinic Connect wrote:

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REPLY

I’m having these same issues. I took a lung function test yesterday and the results seems to be normal. I think it has to do with my weight gain to I feel the pressure in my stomach sometimes. But it’s been driving me crazy and I need answers for it too. I’m gonna reach out to a pulmonologist

REPLY

Hello everyone! I have been having similar symptoms for almost a year and a half now, but I am still not diagnosed.

I’m a man, 28 years old. 170 cm, 55 kg. I have a chronic kidney disease (glomerulonephritis, stage 3). I control my blood pressure with Perindopril. Have never been overweight, but I’m not fit either.
In March 2021 I had a terrible headache, chest pain, higher blood pressure than usual, difficulty focusing my eyesight (for example, I couldn’t read), dizziness. This episode lasted for a couple days, and ever since it went away, I had these symptoms:
• Constant chest tightness and chest discomfort, primarily on the left side. It feels like something is squeezing my chest.
• Constant shortness of breath and inability to take a satisfying breath. Feeling that something in the chest doesn’t open up and air doesn’t reach where it is supposed to go. Breathing feels shallow. I cannot breathe in enough air even to talk and I get out of breath when speaking all the time.
• Very frequent, almost constant, chest pain. The pain is usually right under my left breast, where I can feel the heartbeat. It feels like intense squeezing or pressure. It can sometimes radiate to left shoulder blade. I wake up with this pain in the morning quite often. I can’t seem to pinpoint what triggers it. The pain doesn’t necessarily come during or right after light training that I do (although that can happen, too).
• Palpitations, not very frequent
• Strong heartbeat, feeling of pulsation in the body (especially after a meal)
• Dizziness, brain fog
I experience chest tightness and difficulty breathing literally *all the time*, they never subside. Chest pains come and go.
At this point I have done these tests, some of them multiple times:
• Blood and urine test: don’t show anything except for my kidney disease
• Spirometry: shows slight reduction in lungs volume. Asthma medicines give no improvements.
• Chest X-rays
• Electrocardiography
• Echocardiogram
• 24-hour Holter monitoring
• Heart CT scan: showed an insignificant atherosclerosis, my doctor says it shouldn’t give symptoms like these. Same was found in my neck arteries (with the help of ultrasound).
• Gastroscopy: esophagus is fine, but I have erythematous gastroduodenopathy. Not quite sure what that is, but I was told it was nothing to worry about.
I have used three different asthma inhalers for half a year without any effect. After CT scan detected this slight atherosclerosis, I started taking Atorvastatin.
I don’t hyperventilate. I breathe at a normal rate, but always feel air hunger. Periodically I kind of force myself to take a deeper breath. It can be successful (and I feel that my chest opened up properly and air went where it was supposed to go), or it feels like my chest doesn’t increase in volume after specific point and I don’t get a satisfying breath. The same with yawning. Sometimes it feels like something opens up in my throath and chest, but more often that doesn't happen and yawns feel incomplete and unsatisfying. Oximeter shows normal oxygen saturation of the blood (even during light training).
Some doctors I’ve encountered suggest that this is psychosomatic, but doubt it because a) I’ve never experienced any panic attacks or similar, and b) it doesn’t explain the starting episode.
I am vaccinated against corona.
All in all, doctors claim my heart is ok. Asthma medicines don’t help. Majority of the symptoms are there 24/7, without changing much for better or worse . I have been to ER a bunch of times, and my doctors have no idea what this could be.
Is there anything else I could/should do to check my heart or lungs? I have done multiple heart tests, and my doctors say that my heart is ok. How sure can I be about it? Considering the discomfort and pain in the left side of chest, I can't help thinking that this is heart-related. On the other hand, after this much testing they shoud have found something, if there were any pathology.
I also get heartburn quite often, it’s uncomfortable, but not too bad. Can one have GERD with healthy-looking esophagus? I have been taking famotidine for two weeks (10mg in the morning and in the evening), and it helped with heartburn, but it didn't give any relieve from other symptoms. I'm trying pantoprazole now. If it doesn't work either, should I go on and try prescription GERD medicines?

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@dylcarter3

I’m having these same issues. I took a lung function test yesterday and the results seems to be normal. I think it has to do with my weight gain to I feel the pressure in my stomach sometimes. But it’s been driving me crazy and I need answers for it too. I’m gonna reach out to a pulmonologist

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@ dylcarter3. Sorry to hear that! I hope you find answers soon but it’s good to at least have an idea of what it might be. Were there any other things you think could be contributing to the issue?

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Thank you so much for the update. I just stumbled upon this after desperately searching for answers as I have also been experiencing shortness of breath (SOB) with an unknown cause for the last 2+ years. I have been through extensive heart tests that are normal. My lung tests are good. I am also slightly anemic but nothing too crazy. I am dx with asthma but it’s very mild and only acts up when there’s a strong odor like smoke, for example. My SOB has no rhyme or reason; and will happen anytime, anywhere. 90% of the time I have chest tightness with a feeling of short of breath but 10% of the time it comes along with a runny nose which I call “attacks”. I already take multiple allergy medications and use an inhaler, as needed. I take a daily stomach medication; and magnesium and B vitamins. I’m literally doing everything I know to do to combat this feeling. It has significantly impacted my life.

Now I currently have an appt with a vocal chord specialist as two pulmonologists have recommended it stating that vocal chord dysfunction can cause SOB. I have resisted going for a year or more out of thinking it’s sheer ridiculousness but I am at my wits end with this. I even exercise to alleviate the SOB and will do fine exercising (no breathlessness) but then the feeling will be there directly after I stop. I was also debating on seeing a naturopath as I have literally run out of options. I’m starting to wonder if I have an unknown food allergy. I was tested a few years ago for food allergies and I had quite a few sensitivities but nothing I needed medication for (I take current ones for environmental). I literally do not know what else to do. I am going to try the exercise you mentioned and the naturopath. That’s all I have for now.

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@stm1

Hello everyone! I have been having similar symptoms for almost a year and a half now, but I am still not diagnosed.

I’m a man, 28 years old. 170 cm, 55 kg. I have a chronic kidney disease (glomerulonephritis, stage 3). I control my blood pressure with Perindopril. Have never been overweight, but I’m not fit either.
In March 2021 I had a terrible headache, chest pain, higher blood pressure than usual, difficulty focusing my eyesight (for example, I couldn’t read), dizziness. This episode lasted for a couple days, and ever since it went away, I had these symptoms:
• Constant chest tightness and chest discomfort, primarily on the left side. It feels like something is squeezing my chest.
• Constant shortness of breath and inability to take a satisfying breath. Feeling that something in the chest doesn’t open up and air doesn’t reach where it is supposed to go. Breathing feels shallow. I cannot breathe in enough air even to talk and I get out of breath when speaking all the time.
• Very frequent, almost constant, chest pain. The pain is usually right under my left breast, where I can feel the heartbeat. It feels like intense squeezing or pressure. It can sometimes radiate to left shoulder blade. I wake up with this pain in the morning quite often. I can’t seem to pinpoint what triggers it. The pain doesn’t necessarily come during or right after light training that I do (although that can happen, too).
• Palpitations, not very frequent
• Strong heartbeat, feeling of pulsation in the body (especially after a meal)
• Dizziness, brain fog
I experience chest tightness and difficulty breathing literally *all the time*, they never subside. Chest pains come and go.
At this point I have done these tests, some of them multiple times:
• Blood and urine test: don’t show anything except for my kidney disease
• Spirometry: shows slight reduction in lungs volume. Asthma medicines give no improvements.
• Chest X-rays
• Electrocardiography
• Echocardiogram
• 24-hour Holter monitoring
• Heart CT scan: showed an insignificant atherosclerosis, my doctor says it shouldn’t give symptoms like these. Same was found in my neck arteries (with the help of ultrasound).
• Gastroscopy: esophagus is fine, but I have erythematous gastroduodenopathy. Not quite sure what that is, but I was told it was nothing to worry about.
I have used three different asthma inhalers for half a year without any effect. After CT scan detected this slight atherosclerosis, I started taking Atorvastatin.
I don’t hyperventilate. I breathe at a normal rate, but always feel air hunger. Periodically I kind of force myself to take a deeper breath. It can be successful (and I feel that my chest opened up properly and air went where it was supposed to go), or it feels like my chest doesn’t increase in volume after specific point and I don’t get a satisfying breath. The same with yawning. Sometimes it feels like something opens up in my throath and chest, but more often that doesn't happen and yawns feel incomplete and unsatisfying. Oximeter shows normal oxygen saturation of the blood (even during light training).
Some doctors I’ve encountered suggest that this is psychosomatic, but doubt it because a) I’ve never experienced any panic attacks or similar, and b) it doesn’t explain the starting episode.
I am vaccinated against corona.
All in all, doctors claim my heart is ok. Asthma medicines don’t help. Majority of the symptoms are there 24/7, without changing much for better or worse . I have been to ER a bunch of times, and my doctors have no idea what this could be.
Is there anything else I could/should do to check my heart or lungs? I have done multiple heart tests, and my doctors say that my heart is ok. How sure can I be about it? Considering the discomfort and pain in the left side of chest, I can't help thinking that this is heart-related. On the other hand, after this much testing they shoud have found something, if there were any pathology.
I also get heartburn quite often, it’s uncomfortable, but not too bad. Can one have GERD with healthy-looking esophagus? I have been taking famotidine for two weeks (10mg in the morning and in the evening), and it helped with heartburn, but it didn't give any relieve from other symptoms. I'm trying pantoprazole now. If it doesn't work either, should I go on and try prescription GERD medicines?

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Hi @stm1, wow I'm sorry to see that you're experiencing all these symptoms. Hang in there, I believe you'll be able to tackle them one by one!

Are you being treated for GERD? I believe the scans can show a somewhat normal esophagus but there is usually some degree of inflammation or redness.

When you experienced the episode in March, can you link it to any specific event that happened around that time, such as starting a new medication?

It seems like the chest pain is the most bothersome- would you agree that that symptom bothers you the most, or is there a different number one symptoms that really bothers you?

Sorry I know there's a few questions there haha, but I would like to help you start focusing in one area and tackle the rest from there.

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@ashanne

Thank you so much for the update. I just stumbled upon this after desperately searching for answers as I have also been experiencing shortness of breath (SOB) with an unknown cause for the last 2+ years. I have been through extensive heart tests that are normal. My lung tests are good. I am also slightly anemic but nothing too crazy. I am dx with asthma but it’s very mild and only acts up when there’s a strong odor like smoke, for example. My SOB has no rhyme or reason; and will happen anytime, anywhere. 90% of the time I have chest tightness with a feeling of short of breath but 10% of the time it comes along with a runny nose which I call “attacks”. I already take multiple allergy medications and use an inhaler, as needed. I take a daily stomach medication; and magnesium and B vitamins. I’m literally doing everything I know to do to combat this feeling. It has significantly impacted my life.

Now I currently have an appt with a vocal chord specialist as two pulmonologists have recommended it stating that vocal chord dysfunction can cause SOB. I have resisted going for a year or more out of thinking it’s sheer ridiculousness but I am at my wits end with this. I even exercise to alleviate the SOB and will do fine exercising (no breathlessness) but then the feeling will be there directly after I stop. I was also debating on seeing a naturopath as I have literally run out of options. I’m starting to wonder if I have an unknown food allergy. I was tested a few years ago for food allergies and I had quite a few sensitivities but nothing I needed medication for (I take current ones for environmental). I literally do not know what else to do. I am going to try the exercise you mentioned and the naturopath. That’s all I have for now.

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@ashanne, I know how you feel about it significantly impacting your life! It did for me and still does to some degree but I hope this thread can help you find things to get it under control.

As for the allergies, are you being treated for food allergies, environmental, other allergies, or all of them?

I think that's good that you'll be getting tested for VCD and at least rule that out if it comes back normal.

What sorts of exercises do you do and what "degree" do you push yourself, i.e., light jogging, or weightlifting, heavy exercise like a lot of running or heavy weightlifting, etc.

It's definitely worth exploring the breathing exercises using the Buteyko method. It's what helps me keep symptoms at bay to this day. But there is a certain way to breathe while exercising which is why I asked about how you do exercise.

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@punknpie05

Hi Gabe,

Sorry to hear you’re going through this, as I know exactly how you feel. I also struggle with bouts of air hunger for months at a time, so I know how maddening it can be. I’ve recently been looking into hiatal hernia, and it seems like this may be relevant for you. URLs are disabled for me as I’m a new member (your post compelled me to join!), but if you Google
Hiatal Hernia: An Overlooked Cause of Disease By Dr Cliff Fruithandler DC, you can find some information and exercises that have been very helpful for me.

Good luck!

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@punknpie05, you should be able to post URLs now. Can you post the link to resource you mentioned?

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@gabrielm

Hi @stm1, wow I'm sorry to see that you're experiencing all these symptoms. Hang in there, I believe you'll be able to tackle them one by one!

Are you being treated for GERD? I believe the scans can show a somewhat normal esophagus but there is usually some degree of inflammation or redness.

When you experienced the episode in March, can you link it to any specific event that happened around that time, such as starting a new medication?

It seems like the chest pain is the most bothersome- would you agree that that symptom bothers you the most, or is there a different number one symptoms that really bothers you?

Sorry I know there's a few questions there haha, but I would like to help you start focusing in one area and tackle the rest from there.

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Hello,
I will gladly answer any questions!
When it comes to the symptoms I described, I am not diagnosed with anything at all. I am just trying some over-the-counter GERD medicines myself, but I haven’t seen gastroenterologist. I have changed my diet as well, I stopped eating anything that could trigger GERD. I don’t eat any processed foods, sugar, anything roasted. I eat pretty much most basic foods now, like grains, boiled meats, fruits and vegetables. I feel like GERD is gone now, but that didn’t improve any other symptoms at all.
The episode in March happened on a totally usual day. I didn’t experience any particular stress or didn’t do any training before it, didn’t start new medications either. I remember having same episode (extreme headache and trouble focusing my eyes) many years ago, around 2014-2015, and that was triggered by lifting a heavy weight.
The most bothersome symptoms are constant difficulty breathing and shortness of breath for sure. I cannot even talk in long sentences anymore without needing to catch a breath.

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@stm1

Hello,
I will gladly answer any questions!
When it comes to the symptoms I described, I am not diagnosed with anything at all. I am just trying some over-the-counter GERD medicines myself, but I haven’t seen gastroenterologist. I have changed my diet as well, I stopped eating anything that could trigger GERD. I don’t eat any processed foods, sugar, anything roasted. I eat pretty much most basic foods now, like grains, boiled meats, fruits and vegetables. I feel like GERD is gone now, but that didn’t improve any other symptoms at all.
The episode in March happened on a totally usual day. I didn’t experience any particular stress or didn’t do any training before it, didn’t start new medications either. I remember having same episode (extreme headache and trouble focusing my eyes) many years ago, around 2014-2015, and that was triggered by lifting a heavy weight.
The most bothersome symptoms are constant difficulty breathing and shortness of breath for sure. I cannot even talk in long sentences anymore without needing to catch a breath.

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Please get an X-ray and possibly MRI if can of your spine. I was short of breath upon minimal exertion for 91/2 years due to a pinched nerve at C5/6. I do have this other ‘trying to get a breath’ sometimes here and there during a day and I’m wondering if it might be a pinched nerve as well since I have had extensive testing of everything for years and I’m ‘normal’;) just an observation that’s easy to check out. Good luck !

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