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.

@ethanmcconkey

Hi @boredsilly, thank you for the update. That must be so frustrating to find no affective treatment over the past three years.

I wanted to tag fellow Connect members @deanna1015 @gabrielm and @burrkay may be able to offer you support as you continue to search for treatment.

Back to you @boredsilly, how long have you been on spyrivia? What other treatments have you tried?

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Nebulizer w/ albuterol & other meds, All kinds of inhalers

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@boredsilly

Nebulizer w/ albuterol & other meds, All kinds of inhalers

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I was on Spariva for about 4 months

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@merpreb

@aea1205- I have abused nose spray before and it will turn itself around and bite you if you don't take it. Have you seen an ENT guy? There are things that can help get your nasal passages cleared if they haven't been damaged.
I know how scared you must feel because SOB is very scary. I'm a 22 yr lung cancer survivor and am very familiar with this.
I would suggest reading back on these posts and make an appointment with an ENT.
Do you think that you will do this?

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Taking prescribed Flonase at nite!

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@boredsilly- Hello. Flonase should help with keeping your nose unclogged and help with seasonal allergies. Did the Spiriva not help? It can take many many months for it to build up in your system. Is your shortness of breath new? If it is then I would suggest calling your doctor for an appointment and get your scan pushed up. Do you think that your nodules might have started growing? Do you have any new symptoms other than SOB?

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@aea1205

@gabrielm
My next test is the hormone progesterone, and asking about ovarian cysts.

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Why are you getting checked for ovarian cysts? Is that a reason for having shortness of breath ? Just curious because I had problems before when I was young

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@aea1205

@gabrielm

Hello, I am happy and sad to see this post. You have listed everything I am going through to a T. I have a few other things wrong with me, but I really hate to think this is a hyperventilation issue. I have been short of breath for about 5 years.

I cant say what brought it on, or why it comes and goes. It is the worst it has ever been right now. I usually use albuterol to help but it isnt even helping much now. Nobody knows whats wrong. I had all the tests and bloodwork done... the only thing that was abnormal was my C02 was low and my ddimer a bit elevated. I have a few different health issues. Sleep apnea being one. I really need aome answers soon.

When im sob my nasals are horribly clogged. I have chest tightness, upper back pain, and feel as if there is a lump in my throat. Swallowing also feels weird. I feel that laying or sitting makes it better. Lifting makes it worse, along with walking, or any acrivity really. I do notice i try to breathe more to see if its better which aint helping. I use my chest and shoulders whixh is wrong. But I didnt just start doing this for no reason???? Its so stupid. I used mucinex nasal spray a lot in my life. Now im scared that might have something to do with it all. It has to have a reason this is happening to us all. I cant believe this is due to a brain issue like forgetting how to breathe, and if it is i have a rough road ahead of me. Im really scared.

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@aea1205 low CO2 seems to be a factor. This could lead to chronic overbreathing which makes the SOB worse. I’m not sure that’s a direct cause. My inclination is that something is causing the low CO2 but not sure what. If you read through all the comments you’ll come across a link to a website that teaches a breathing method called the Buteyko Breathing method. That has helped me a great deal.

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@gabrielm

@aea1205 low CO2 seems to be a factor. This could lead to chronic overbreathing which makes the SOB worse. I’m not sure that’s a direct cause. My inclination is that something is causing the low CO2 but not sure what. If you read through all the comments you’ll come across a link to a website that teaches a breathing method called the Buteyko Breathing method. That has helped me a great deal.

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Absolutely guys its the game changer technique pls try . If your o2 saturation is fine then its a problem with co2 try buteyko breathing . It helped me as well . Good luck !

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@ssgaurav2000

Absolutely guys its the game changer technique pls try . If your o2 saturation is fine then its a problem with co2 try buteyko breathing . It helped me as well . Good luck !

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Just a peice of advice try holding breath after exhale for fatser results .. good luck . There is a app on android and ios as well

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@katgts

I’m so glad I came across this discussion! I have had the same thing for 3 weeks. I was sitting at home when suddenly I couldn’t take deep breaths. The only thing out of the norm for that day was I went to the gym for a 2nd time in years but was only on the cross trainer at the lowest setting for 30mins. This inability to take deep breaths came on suddenly about 3 hours later. I have been to numerous doctors and emergency rooms. Bloods, chest films, ECG, ECHO, lung function all came back normal. No doctor can tell me what this is. I was told pleurisy, so was on high dose of ibuprofen for a week which gave me bloating and doctor put me on omeprazole. But the ibuprofen didn’t help apart from the first day or two. They then tried antibiotics just in case but no luck. anxiety has also been ruled out. It feels like there is something in the upper part of my chest blocking the air. It also blocks burps from coming up and I am taking peppermint oil and lozenges to relax it. If I change positions it helps and I can breath but very quickly that position will stop working and I have to find another one. Sort of feels like now I have a weight on my chest, possibly from the constant effort to try and expand my chest. I am going on my honeymoon today and was hoping this would pass by now but looks as though I won’t be doing any swimming, nice long walks etc as just walking up one flight of stairs makes it hard to catch my breath. If anyone comes up with a miraculous cure in the next few days I would be over the moon to hear!

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Don't feel alone I have some problem

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Hello all! Wanted to pop in and share some information. I came down with SOB( named appropriately) after a cold. I struggled with thirst a few weeks prior but stupidly just tried to drink more water. Long story short my SOB got so bad I ended up in the ER. After blood work and chest scans I was sent home after being told I'm in great health other than a slight potassium deficiency. Years ago I had anxiety, gerd, fluid in my ears, allergies, insomnia...many of the symptoms you all mention but they all went away after I got my magnesium levels up. So I suspected my SOB was electrolyte related as well...more than likely the low potassium level was either brought on by or exacerbated the dehydration which messed with my electrolytes. They are really important when it comes to health. They control the body's acidity levels, heart rhythms, detoxification and a host of other things. The cold had worsened it all. I had refused the excessively high dose of potassium at the ER in favor of a slow and safer route which the ER doc okay'd because it was just slightly out of range. Potassium supplements can be dangerous as they can mess with your heart rhythms and I didn't want to end up back in the ER and I kind of know my body. I've always been sensitive to things. They gave me a list of potassium rich foods and I began incorporating them into my diet. Orange juice (I drink the low sugar version) is ridiculously high. Who knew? So are potatoes. I made smoothies with a banana, greens and hemp protein and I ate salads everyday. The lifestyle changes took a few weeks but I'm much better. Research electrolytes, nutritional deficiencies, and SOB. For many of us SOB can be helped by nutritional balancing. Sugar, caffeine, staying up at night on the computer etc, throws us off balance. A healthy diet, the proper amount of water, sleep etc. brings us back into balance. I also started a good multivitamin with vitamin C (it helps SOB), B vitamins and retinol. Not the drugstore version. I hate to see so many struggling with this awful condition. At one point I thought, I'd never have any quality of life. Stay hopeful, change your lifestyle. It gets better.

And use caution with supplements. Vitamins and minerals must remain in balance. Taking something in excess or without balance can mess things up. If you're not willing to research extensively, stick to foods and a good multivitamin. Thomas DeLauer and Morley Robbins have good articles on research that has been done in the fields of nutrition.
And one more thing...Keto and Paleo diets can also trigger electrolyte deficiencies.
Good luck everyone.

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