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.

@noxext

Only symptom which I had with my stomach now was bloating and I was never hungry, i could avoid food whole day easy. I had same thing long ago so I knew it that i must position stomach on proper position again.
Long ago i had all standard symptoms bloating, acidity, even esophageal inflammation which i solved with Gastroperidon and Controloc drugs to put out the fire. Then my doctor/herbalist gave me to use Sempervivum tectorum herb mixed with honey in a jar lined with aluminum foil which I should take every morning on empty stomach. Finally docotor gave me combo of digesteodorn, hepatodoron (brand was german company Weleda) and wobenzym (800 caps which i used for more then 3 months!!) and all was cured permanently.

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I'm glad you found a solution!

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@abidaisl

Yesterday was the worst day for me. Normally I've SOB for few hours in a day but yesterday I had SOB all day and at one point I couldn't even take deep breath. I didn't even get any sleep I guess because I was really scared. I'm just getting hopeless day by day.

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@abidaisl- Can you get to the ER yet? Or your other doctor?

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I have been SOB most of my life, and I am 80 now. Honestly, I have been squeezed and tested by hundreds of docs and techs and others since I was a toddler, trying to figure it out. Now I have learned that I have a combo of several DNA issues. RyR2 (Cardiac Wall Dystrophy), FKTN (Fukuyama limb girdle muscular dystrophy), TSE (Transmissible Spongiform Encephalopathy), Gelsolin Amyloidosis (Systemic, Primary, non-TTR, Hereditary, Organomegaly), several cancers including lungs, thyroid, prostate, and probably others. I even use a great "BiPAP" machine for night sleeping, and a C-PAP for daytime naps. Yet I function SOB almost every night and during daytime naps. And I go to sleep SOB during my own activity. Driving cars, tractors. Speaking. I don't have any answers, but I sure as (*&^&^%& know your issue.

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I still have days like this. And even after going to the ER back in August having many tests done on the spot and now seeing a lung specialist , I still panic on bad days thinking the worst is going to happen. I have to remind myself I've felt like this before and it will go away, (or at least go back to my usual sob because it never actually goes away for me, just some days are worse than others)
Try not to panic , as it makes it worse (it does for me anyways ) but definitely try to see your doctor or go to the ER as soon as you can if you haven't already! Having whatever tests you need done to rule out anything serious will help you relax on those bad days!

I started working out again two days ago after a 4 week hiatus from working out because my breathing got worse and I was just plain scared to work out again. Now I'm pushing through my sob even while working out, I just have to take more breaks to get a good deep breath. But I'm really frustrated letting my sob rule everything I do, so I'm trying to just push through, and hope for the best at this point.

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@abidaisl

Yesterday was the worst day for me. Normally I've SOB for few hours in a day but yesterday I had SOB all day and at one point I couldn't even take deep breath. I didn't even get any sleep I guess because I was really scared. I'm just getting hopeless day by day.

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Hi @abidaisl. Sorry you are experiencing this. Never lose hope! There is always hope and as with everyone here, it DOES get better mixed with bad bouts every so often. Hope is the very thing that kept me going when it was bad. If you haven’t already, consider learning the Buteyko breathing method which has helped me greatly. They have something called the “rescue exercise” when the feeling of panic comes on. This is a breath holding technique to help build up CO2 which helps facilitate the exchange of O2 with CO2 which in turn helps quell the panic feeling. This is just one of many tools to have at your disposal when things get bad. Many other people have different ways to dealing with it which also adds to the arsenal of tools. All these things are worth at least trying.

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@metonya

Did this work for you? Also what is Jar-Vacuum system?

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yes it works i dont have any symptoms 4 days in row. about jar vacuum system ill send you link in private msg

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Has anyone found a link between your shortness of breath and GERD?

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@bbspore12

Has anyone found a link between your shortness of breath and GERD?

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@bbspore12- Good morning. There are many of us on here that have GERD as at least one symptom of SOB. It's one of the leading causes of SOB. I encourage you to read as many posts as you have time. Many of us have dealt with SOB. Both @alexm1994, @gabrielm have had experience with GERD and hopefully, they will tell you their stories. What makes you think that GERD is part of your problem? Have you been to a GI doctor yet?

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@bbspore12

Has anyone found a link between your shortness of breath and GERD?

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My SOB is was linked to acidity and one symptom of acidity is GERD. I used diet , lifestyle changes and focused on minerals to buffer acidity. Takes a lot of research, patience and listening to your body but it's working for me. I finally feel normal again and no longer dread going to sleep.

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@tamaracaitlin

I still have days like this. And even after going to the ER back in August having many tests done on the spot and now seeing a lung specialist , I still panic on bad days thinking the worst is going to happen. I have to remind myself I've felt like this before and it will go away, (or at least go back to my usual sob because it never actually goes away for me, just some days are worse than others)
Try not to panic , as it makes it worse (it does for me anyways ) but definitely try to see your doctor or go to the ER as soon as you can if you haven't already! Having whatever tests you need done to rule out anything serious will help you relax on those bad days!

I started working out again two days ago after a 4 week hiatus from working out because my breathing got worse and I was just plain scared to work out again. Now I'm pushing through my sob even while working out, I just have to take more breaks to get a good deep breath. But I'm really frustrated letting my sob rule everything I do, so I'm trying to just push through, and hope for the best at this point.

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@tamaracaitlin- Do you have a Finger Pulse Oximeters? You can get them at Amazon or drugstores. They measure your oxygen level. As long as it is above 90 you are getting enough O2. So when you get scared you put it on a finger (preferably with no red or purple nail polish). Have you heard of Exercise-induced SOB?

https://www.mayoclinic.org/diseases-conditions/exercise-induced-asthma/symptoms-causes/syc-20372300

These are exercises that you can do to open your chest. The last one here is how to handle a severe attack for SOB.
https://www.youtube.com/watch?v=nxw7rAmQeAI
https://www.youtube.com/watch?v=KYj-T4Nd3h0

I think that it's a normal reaction that you are centering your life around you SOB right now. Fighting for full breaths is very scary and without a diagnosis, it's even scarier. When I first experienced mine I wondered about moving the wrong way!

What do you do when you have a bad day with it?

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