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.

@gabrielm

That’s interesting! It seems like there is a connection in your case, to the larynx. Manipulating the larynx generates some sort of response to your breathing. Perhaps seeing other speech therapists for a second opinion might help to see what else could be done to help with the tension

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Gabriel, laryngeal muscle tension sometimes arises to compensate for another injury. I think you probably have laryngeal tension because of the longtime reflux you had.

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Is there a laryngologist here to check the relationship between my breathing problem and my larynx and tell me how likely it is that it is from my larynx? I have documents to send.

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@amirreza

Is there a laryngologist here to check the relationship between my breathing problem and my larynx and tell me how likely it is that it is from my larynx? I have documents to send.

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Hi - Mayo Connect is a community of people and caretakers living with a variety of conditions and diseases. We share our experiences and try to help one another along the way. We are not medical professionals, and do not have the expertise to interpret test results or make treatment recommendations for you. If you would like to contact Mayo Clinic about a consultation, you may ask for a referral from your doctor, or register on-line here: http://mayocl.in/1mtmR63
I hope this helps in your effort to find a solution.
Sue

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@tonyagregg and @gabrielm, I have suffered of exactly this for years and my wonderful doctor found that I had hypothyroidism. When my thyroid function is off, I get the SOB symptoms. When my thyroid function is at a good level, the symptoms disappear. Hope this helps. Before finding this I would spiral into a vicious cycle of anxiety 🙃

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@glaspada

@tonyagregg and @gabrielm, I have suffered of exactly this for years and my wonderful doctor found that I had hypothyroidism. When my thyroid function is off, I get the SOB symptoms. When my thyroid function is at a good level, the symptoms disappear. Hope this helps. Before finding this I would spiral into a vicious cycle of anxiety 🙃

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Thank you for the input @glaspada

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@amirreza

How is your diet? Do you consume a lot of dairy products? The things that can help you are breathing through your nose, getting enough sleep, not doing hard exercise, not putting pressure on your larynx, and talking normally.tell me youre life style

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Hi @amirreza, thank you for reading through my post and commenting. For two years I avoided dairy products completely, and when I saw no difference I reintroduced and followed a low histamine/low inflammation diet for another two years. No difference unfortunately. However, I have been following some advice on this thread with Buteyko breathing techniques and they are giving me fast relief. I walk daily, sometimes hike 1000m+ mountains and struggle in going up. I´m 26 female, never smoked but do drink a glass of wine once a month or so.

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@jenniferhunter

@sussistrikesmichelle As I was reading through your story, I couldn't help thinking about allergies in addition to food allergies. Have you been tested by an allergist? I have allergic asthma, and do allergy shots for molds, dust, weeds, grasses, ragweed, and cats and they help me significantly. I do have cats, but I manage OK and have HEPA filters.

Another problem I had came as a bit of a surprise. I was creating excess phlegm in my lungs and I have a physical problem with one side of my chest being too tight and not expanding properly, so I was trapping phlegm and it would progress to a chest infection which I noticed when my resting heart rate went up. I also had old dental work. All of my silver amalgam fillings had been removed several years ago and they can release mercury vapor. I used to get a sore throat after chewing my food which stopped happening after those fillings were replaced. I also had old root canals and crowns because of breaking my teeth as a kid, and the root canals were starting to fail. Eventually I went through the process of replacing those teeth with Zirconium dental implants which are a type of ceramic and they contain no metal. It is a long process of healing bone before implants can be placed, and then more healing before they are solid enough to attach new teeth. As soon as the bad teeth were removed, my breathing improved dramatically and I no longer had the extra phlegm all the time. For the first time, I had no metals in my body and I could breathe.

Then 3 months later, I broke my ankle badly, and I needed titanium plates and screws to fix it. Again, I had breathing issues with excess phlegm, and I also developed chronic hives and my ankle hurt with the hardware on it. It's a year later, and I just had the hardware removed, so I am back to being metal free again, and I am breathing much better in spite of my allergies. If you were living at higher elevations in Colorado, there is no ragweed and a lot less mold, so that could account for the improvement you had, however, Colorado has had poor air quality due to wildfires this year and last which has actually spread across the entire country. It sounds like you have serious allergies to molds, and I do too. Even with doing my allergy injections for molds, if there is a piece of fruit in the kitchen that grows mold, I will have a lot of symptoms until I find it and remove it.

Have you been seen by an environmental medicine doctor? I have been helped a lot by a doctor in this specialty. There is a provider search button on the top right page of the AAEM website at https://www.aaemonline.org/

I had a lot of problems with out-gassing of new building materials. Carpeting and pressed wood products like plywood or masonite release formaldehyde vapors. We built a home with formaldehyde free insulation and I seal coated all the plywood floors before the hardwood flooring was laid on top of it to greatly reduce formaldehyde. We have no carpeting. That has helped me a lot and some people need to avoid things like this.

Have you considered environmental allergies as a possible cause for your symptoms?

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Good evening Jennifer, it feel very heard and seen, thank you for taking the time to write your suggestions and insights.

I do, indeed, have severe allergies and was hospitalized as a child multiple times during the springtime for allergic asthma. I did allergy shots for two years but went into Anaphylactic shock three times before my doctor deemed it too dangerous for me. I might give it another go and not titrate further than a yellow range.

How did you find out your chest is too tight and doesn't expand properly? Ironically, I also broke my ankle and have 9 screws and a plate and terribly allergic to metals (can't wear earrings for longer than 1 minute). I am getting curious about the possibility of removing the metal and seeing if the post nasal drip will get resolved.

Also, how do I get more knowledge on out-gassing issues? My husband and I just bought a home. We went through a private company to swipe dust and test it for mold and it had a great score, which feels so relieving!

Hugs to you

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@gabrielm

@ sussistrikesmichelle thank you for sharing your experience. Have you tried breath holding techniques to see if that helps? That’s part of the Buteyko breathing method that I’m sure you read about but curious if you tried it. That method is what helps me the most. They teach a rescue exercise where you hold your breath while taking steps or hold your breath while sitting still for as long as you can, and you repeat this a few times. It helps build up the CO2 and calms the breathing. I don’t think it would hurt to try.

It sounds like there are some issues that may be contributing to the air hunger such as inflamed lungs. Have you tried and anti inflammatory diet?

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Hi Gabe, thanks so much for your comment. It actually made a big difference. I looked up a few videos of Buteyko breathing when I was struggling severely and it felt horrible at first... like I was drowning, but after insisting on it for a few days, it worked. It is not resolved all the way, I still sigh but now most of the time it goes in and I don't use my mouth. I haven't figured out how to do this method while exercising or walking but I hope to get there. Overall, just feeling scared of celebrating a victory yet but hopeful enough to have found a relief/coping mechanism.

And yeah... I followed an anti inflammatory diet for a couple years very rigidly e.g. potatoes, goat cheese, bison, all cooked fresh, no leftovers, no raw veggies, etc. It didn't help which was frustrating. I am curious about why the inflamed lungs myself but wonder if it's related to allergies.

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@sussistrikesmichelle

Good evening Jennifer, it feel very heard and seen, thank you for taking the time to write your suggestions and insights.

I do, indeed, have severe allergies and was hospitalized as a child multiple times during the springtime for allergic asthma. I did allergy shots for two years but went into Anaphylactic shock three times before my doctor deemed it too dangerous for me. I might give it another go and not titrate further than a yellow range.

How did you find out your chest is too tight and doesn't expand properly? Ironically, I also broke my ankle and have 9 screws and a plate and terribly allergic to metals (can't wear earrings for longer than 1 minute). I am getting curious about the possibility of removing the metal and seeing if the post nasal drip will get resolved.

Also, how do I get more knowledge on out-gassing issues? My husband and I just bought a home. We went through a private company to swipe dust and test it for mold and it had a great score, which feels so relieving!

Hugs to you

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@sussistrikesmichelle I see an environmental medicine doctor for allergies and they individually test antigens for things like molds, dust, etc, and they can break it down and test individual molds, one at a time. They find the maximum tolerated dose that doesn't make the weal grow larger than a certain size on their scale and that becomes the treating dose. Then they will combine results from several different antigens for molds together in a custom blend. I actually have 4 vials of mold antigens for allergy shots, one of which is specific for molds on agricultural crops, and the others are year round molds that can be found indoors. According to my doctor this was a much safer way to test allergies.

The doctor that pioneered this field of medicine started the Environmental Health Center of Dallas. (moving North of Dallas now) They do sell books. Here is info about safe buildings. Out gassing is worst after new construction and we had our home build in ways to minimize it and cut down on formaldehyde in building products. There is lots of information about this and other topics at https://www.ehcd.com/ehc-d-home-and-commercial-building-services

They do have treatments for immune responses to surgical implants, but you may also be able to have hardware removed like I did. I had pain from the plates and screws and it would be a bit warm, and I had extensive chronic hives and had to stay on anti-histamines. Just having pain (and not needing to prove allergic response) would be enough to warrant hardware removal if your doctor approves.
https://www.ehcd.com/implant-syndrome
https://www.ehcd.com/formaldehyde

I have HEPA air filters that also have carbon filtration to remove VOCs from the air. I purchased them with my doctor's recommendation from https://foustco.com/

If you want a test for metal allergies, you can contact a lab in Chicago https://www.orthopedicanalysis.com/ .
I did a blood test there before spine surgery 5 years ago and it did not indicate any problems which was surprising to me since I had to give up pierced earrings due to reactions. After I had the ankle fracture surgery, the hives started about 6 months later. It might just take time after continuous exposure to develop an immune response.

As for my physical issues with breathing, my physical therapist told me about the left side of my chest not expanding enough. I have thoracic outlet syndrome which causes tightness in muscle and fascia and that prevents my chest from expanding enough, and I can see it and feel it too. I was having a repeating pattern of chest infections from excess phlegm that always happens on the left side first, and then could expand to the right side. This was before Covid, and I learned how to treat it with Bactroban ointment by putting that in my nostrils with my doctor's prescription. That was something my surgeon at Mayo had me do as preventative for staff infections before spine surgery, and it also worked to clear my lung infections. With all the metal removed from my body, I have a lot less phlegm and this has not been a problem. If the lungs don't move enough, mucous does not get expelled which is why after surgery and anesthesia, patients need to get up and walk.

If you are not close to Texas, you could search for other providers in the field of Environmental medicine at
https://www.aaemonline.org/

This is a puzzle to solve and you find things one piece at a time. I eliminated all foods I was allergic to and gluten, and I treat my allergies, and removing all metal implants from my body made a big difference.

I sounds like you have had similar issues to me and I wish you well on your journey. It can get better! Will you come back and share what you find is helping you? I am glad I had my hardware removed which was only 4 weeks ago and the improvement was right away.

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@sussistrikesmichelle

Hi Gabe, thanks so much for your comment. It actually made a big difference. I looked up a few videos of Buteyko breathing when I was struggling severely and it felt horrible at first... like I was drowning, but after insisting on it for a few days, it worked. It is not resolved all the way, I still sigh but now most of the time it goes in and I don't use my mouth. I haven't figured out how to do this method while exercising or walking but I hope to get there. Overall, just feeling scared of celebrating a victory yet but hopeful enough to have found a relief/coping mechanism.

And yeah... I followed an anti inflammatory diet for a couple years very rigidly e.g. potatoes, goat cheese, bison, all cooked fresh, no leftovers, no raw veggies, etc. It didn't help which was frustrating. I am curious about why the inflamed lungs myself but wonder if it's related to allergies.

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I’m so glad the exercises helped even if just a little! To apply to other areas of your life such as exercise is simply to have controlled, slower breathing only through the nose and you can do small minor breath holds wherever possible without having to overdue it. I.e., if I have to take a big deep breath, I will follow my holding my breath for a few seconds and letting it out slowly and controlled. Just small opportunities to do small breath holds can make a big difference

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