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.

@merpreb

@helpnyahtwhereucan- Wow. I bet you are relived that your husband spoke up! Did you have a blood test to determine how low you were and what you should be taking? I take a liquid calcium pill that is part calcium 1000 mg. and part magnesium 500 mg.

Jump to this post

No. I'd been to so many. All my nutrients checked out okay. It was later that I found out there is a specific test for magnesium that doctors won't routinely do.

I was taking calcium and it was making me worse. To this day I have an extreme sensitivity to calcium so I only get it from food. It's recommended that you supplement calcium/ magnesium in a 1 to 1 or 2 to 1 ratio but I can't. We're all different.

REPLY

@helpnywhereucan- Have you tried magnesium at a very very low level to see if you can tolerate it? Have you asked your doctor to do do the test for magnesium?

REPLY
@merpreb

@helpnywhereucan- Have you tried magnesium at a very very low level to see if you can tolerate it? Have you asked your doctor to do do the test for magnesium?

Jump to this post

It is wise to start slow with magnesium and research the forms to find what's best for you. It was trial and error before I found one my body responded to. Again... read...read...read. If anyone's curious if it will help their symptoms, try an epsom salt bath which is a magnesium salt. Less likely to cause side affects.

REPLY

@helpnywhereucan- Here is some information about Magnesium.There is more than one type, which makes this more confusing.
https://ods.od.nih.gov/factsheets/Magnesium-Consumer/

REPLY
@merpreb

@theomonster- Welcome to Mayo Connect. There is nothing scarier than thinking that you can breathe as you normally take your next breath and find that it is a struggle! We mentors are not doctors and can not give medical advice but we can help support you and help guide you to a possible solution or hints on how to tolerate your conditions better. I am a lung cancer survivor/patient and I know what SOB feels like. I've also had bronchial spasms. I have gotten them in my early days after surgery and I also get them with GERD. They hurt a lot! How long did you give the medicines a chance to work before you decided that they didn't work?
What does your PCP say about your weight loss and trouble swallowing. DO you think that you have unintentionally lost weight because of your trouble breathing or trouble swallowing?
This might be something that interests you. It is not a diagnosis.
https://www.mayoclinic.org/diseases-conditions/dysphagia/symptoms-causes/syc-20372028
How much weight have you lost?

Jump to this post

I have lost almost 35 lbs in about 8 Months. I currently only weigh 96lbs. I took ulcer meds and Pepcid for about 4 months. I eat completely healthy full meals. I’ve been tracking what I eat and how often. The over all weakness makes me think my body isn’t absorbing anything. I’m supposed to meet with a nutritionist on Thursday, hoping that will help.

REPLY

Research POTS. I am convinced this is what I have! Your situation sounds similar to mine. But, mine has been for 20+ years. When I do research online the POTS symptoms don't all match what I am going through, but then I found a support group via Facebook, and allllll of my symptoms, along with other weird things I have been going through (random on and off tooth pain...as in all of my teeth at one time!) are talked about on there! One of the main sypotoms is passing out, which I don't do, but I do have some dizziness occasionally. I haven't been tested yet, but plan to be soon. Some people are treated successfully, others are not. Check it out! I honestly think this is what we all have!

REPLY

@theomonster- Your weight loss and current weight scares me unless you were 35 lbs over weight before and are under 5'. I suggest that you go back to your doctor. If your doctor isn't alarmed about this find another one who will pay attention to you. Weight loss can mean many things and with not being able to breath on one side when you sleep worries me even more.
As you know Mentors are not physicians so I can not give you a diagnosis or prognosis. But I can recommend going back to your pulmonologist or PC and take care in finding out what is causing your shortness of breath, weight loss and pain when you lie on one side in bed. Seeing a nutritionist at this point would be the last thing that I would do because your body isn't responding to food that you are eating and unless you are allergic to it all something else is causing your weight loss. Please take care and be an advocate for yourself. Find out what is going on! Will you do this?

REPLY
@merpreb

@theomonster- Your weight loss and current weight scares me unless you were 35 lbs over weight before and are under 5'. I suggest that you go back to your doctor. If your doctor isn't alarmed about this find another one who will pay attention to you. Weight loss can mean many things and with not being able to breath on one side when you sleep worries me even more.
As you know Mentors are not physicians so I can not give you a diagnosis or prognosis. But I can recommend going back to your pulmonologist or PC and take care in finding out what is causing your shortness of breath, weight loss and pain when you lie on one side in bed. Seeing a nutritionist at this point would be the last thing that I would do because your body isn't responding to food that you are eating and unless you are allergic to it all something else is causing your weight loss. Please take care and be an advocate for yourself. Find out what is going on! Will you do this?

Jump to this post

Just a little something to add. When I changed my diet because of medical problems I encountered the same shortness of breath. Somehow during the diet change and everything else it affected my kidneys. The kidney change affected the heart beat,enough for this symptom of shortness of breath to appear The doctor will explore and find the answer. With his/her treatment this should be corrected. But you must see the doctor as this could be something else and possibly a very dangerous condition.

REPLY
@peach414144

Just a little something to add. When I changed my diet because of medical problems I encountered the same shortness of breath. Somehow during the diet change and everything else it affected my kidneys. The kidney change affected the heart beat,enough for this symptom of shortness of breath to appear The doctor will explore and find the answer. With his/her treatment this should be corrected. But you must see the doctor as this could be something else and possibly a very dangerous condition.

Jump to this post

This is correct but for those like myself who were checked and no answer was found, try a lifestyle change...diet, exercise, yoga as someone mentioned above. And as I've said repeatedly research everything...some diets aren't good for the body...ie low carb, high protein ( which are highly acidic and hard on the organs and can also trigger a potassium deficiency) etc.

We've been conditioned to eat to satisfy hunger but in actuality we eat to fuel the body's millions of metabolic processes. It requires certain nutrients to do an efficient job. Whatever the issue, I don't think you could ever go wrong by eating more vegetables, less meat, small quantities of fruit... maybe even a little egg, milk and cheese for vitamins AD&K, if your body responds favorably. Listen to what's right for you.

REPLY
@merpreb

@theomonster- Your weight loss and current weight scares me unless you were 35 lbs over weight before and are under 5'. I suggest that you go back to your doctor. If your doctor isn't alarmed about this find another one who will pay attention to you. Weight loss can mean many things and with not being able to breath on one side when you sleep worries me even more.
As you know Mentors are not physicians so I can not give you a diagnosis or prognosis. But I can recommend going back to your pulmonologist or PC and take care in finding out what is causing your shortness of breath, weight loss and pain when you lie on one side in bed. Seeing a nutritionist at this point would be the last thing that I would do because your body isn't responding to food that you are eating and unless you are allergic to it all something else is causing your weight loss. Please take care and be an advocate for yourself. Find out what is going on! Will you do this?

Jump to this post

I asked my dr to see other specialists. But he insists I see a nutritionist first I have seen a lot of doctors, but always come up with no answers. I also feel like there is probably some underlying issues, but at this point things are moving slowly, and I’m getting nowhere fast.

REPLY
Please sign in or register to post a reply.