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.

trast | @trast | Jul 18, 2023

In reply to @grandma72 "Have you had your spine checked for herniated discs? Perhaps a pinched nerve is causing this?" + (show)

What you say is very interesting, because I have suffered thoracolumbar back pain for decades, and lately the intensity of the pain has increased. The doctors looked at my back thousands of times; they ordered countless tests (MRI, X-rays, scans, …) and the cause of that pain never appeared. I was always told that I might have a condition called "spondylitis" but it was never proven or diagnosed. After decades of fruitless searching, I gave up searching and tried my best to deal with chronic pain. I don't take any pain medication as I already take too many to prevent another heart attack. I only take a few paracetamol from time to time, because it's the only thing doctors allow me to take.
But I think your idea is good, and maybe I need to see a specialist doctor. It may be time for a spinal checkup.
Thank you very much for the advice!

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grandma72 | @grandma72 | Jul 18, 2023

You’re very welcome. I was short of breath upon minimal exertion for 91/2 years ( had been working out at gym and fine before it hit) Complete workups at three major hospitals. I had a pinched nerve; after anterior cervical disckectomy I ithf suion at 5/6, I’m fine and can walk up several flights of steps ( before could only do two and panted) and can even run again ( I don’t much as I’m 74 and it isn’t my thing) Anyhow I have also have had this other breathing problem like discussed here. It comes on at times when I have laid down or bend over and so on. If it gets worse, (as it was worse in the past and it’s horrible isn’t it?), then I’ll see my neurologist and see if I have another herniated disc. Good luck and please report back on what I anticipate to be your success, so we can help others

yessir321 | @yessir321 | Jul 18, 2023

In reply to @trast "I would like to tell my story with SOB, but I will have a hard time..." + (show)

@trast

I would like to tell my story with SOB, but I will have a hard time doing it in English. Anyway, I'll try to do my best (with the invaluable help of Google Translator).
I feel very identified with most of you. I started with the need to sigh, take a deep breath and yawn in January 2021. Sometimes I couldn't complete a satisfactory breath, or I couldn't yawn no matter how many times I tried. Also, I had a strange feeling in my chest, as if something were squeezing me and preventing me from breathing. I even lost the strength in my voice. I went to the hospital urgently and my cardiologist (I had a small heart attack in 2015) got scared and did all kinds of tests (echocardiogram, ECG, stress tests, etc.) which, just like you, gave normal results. So I went to a Pneumologist, who ordered a spirometry and a high-resolution CT scan. The spirometry was normal and CT indicated a very very mild emphysema (as a result of smoking in my youth). He told me that it was practically imperceptible and that it would not progress if I continued without smoking and that, of course, this emphysema was so slight that it could not give me any symptoms.
And here I am, having bad days and worser days, suffering panic attacks when the days are very bad because it really is very distressing.
I have gone through all the paths that many of you have gone through (I have a hiatal hernia and GERD diagnosed by a Gastroenterologist). I have taken psychiatric treatments and therapy with psychologists. Nothing has worked so far.
Sleeping is the only thing I've noticed that works. In the morning I wake up breathing freely. But as the hours go by, everything returns. Sometimes, as soon as I get out of bed, other times it starts hours later. But always, always, the worst comes in the evening and at night: tightness in the chest, yawning, sighs,... always very frustrating.
And here is my testimony. I don't know what else to say, except that if I have any news, I'll let you know.
Thank you very much for reading me. I hope that I have been understood (I do not know if what I have written will have been translated ok). Please, if there is something you don’t understand, feel free to ask me.

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This is just a suggestion for the psychiatric avenue, i tried cbt and talk therapy and they did not work. But HOPE AND HELP FOR YOUR NERVES- CLAIRE WEEKES, AT LAST A LIFE- PAUL ADAM, DARE BOOK FOR ANXIETY, AND SHAAN KASSAM ON YOUTUBE, all really helped me. However that is if it is mental or anxiety caused. Consult your doctor and ask if he thinks its mental because i dont know if you have based off this.

yessir321 | @yessir321 | Jul 18, 2023

In reply to @greent18 "It definitely gets worse when going outside/exercising. The more chest pain/tightness has been more recent. It..." + (show)

for me, mine was anxiety and when i cycled long and hard enough i would actually find the sob got better. however outside was more fear and it would get worse, like i remember the instensity it would be at if i got on a bus. im just explaining my story not saying we have same thing, good luck

yessir321 | @yessir321 | Jul 18, 2023

In reply to @fefemagee "I have gone to a million different doctors as well asking them if they’ve ever heard..." + (show)

that sounds just like me and mine was physical anxiety. you just said when you are distracted you dont notice it. cant you see then it is false shortness of breath? it is anxiety, my primary doctor said the same and boy did i not believe her at all, but please im begging you give this a chance. HOPE AND HELP FOR YOUR NERVES- CLAIRE WEEKES, AT LAST A LIFE- PAUL ADAM, DARE BOOK FOR ANXIETY, AND SHAAN KASSAM ON YOUTUBE.
it goes away when you live your life with or without the symptoms, just as you say when distracted with life. when you do that you tell your body there is no danger so it stops fuelling your body with adrenaline and stress to your nerves. ANXIETY PARADOX ON INSTAGRAM ASWELL, look if you cant accept the anxiety diagnosis, look up other terms, physical anxiety, pseudodyspnea, sensorimotor ocd, somatic ocd, nervous illness. get behind any of them please and simply put how you recover is by living life fully and not caring how strong the sensation is. that is how you do it in basic terms but the books/online stuff goes into way much more detail.

trast | @trast | Jul 18, 2023

In reply to @arikalisanne "I am going through something amazingly similar. The inability to take a deep breath. Forcing a..." + (show)

You just described how I feel exactly! I'm so sorry you're going through it. It is horrible, distressing and, indeed, causes a great deal of anxiety.
I wish we could find out the cause of this disorder that is making our lives bitter, so that we can find a solution.

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catsmeow1959 | @catsmeow1959 | Jul 19, 2023

In reply to @trast "I would like to tell my story with SOB, but I will have a hard time..." + (show)

@trast

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I suffered with the same thing but found that Zoloft (prescribed by my doctor) has helped tremendously. You might ask your doctor to prescribe it for you.

Gabe, Volunteer Mentor | @gabrielm | Jul 19, 2023

In reply to @trast "I would like to tell my story with SOB, but I will have a hard time..." + (show)

@trast

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Hi @trast, sounds like similar symptoms to a lot of other people who have posted here, including myself. Have you had any blood work done? Sometimes that shows certain nutrient deficiencies which can lead to that feeling of air hunger or even directly affect breathing.

trast | @trast | Jul 20, 2023

Hi Gabe.
Yes, my blood tests are now perfect. A short time ago, I had a slight lack of iron and vitamin D, but last week I had a blood test and everything is normal, from cholesterol to vitamin B12.
That's why I identify a lot with most of you, because everything seems to be fine, but several times a day something oppresses my chest and I start to need to catch more air. Neither my respiratory rate nor my heart rate increase, nor are there any wheezing or noises, it is simply a hunger for air in my chest. At first, it is possible to catch air by taking a deep breath or a big sigh. But as the hours pass, it is very difficult to do so and the yawning begins. And finally, I can't even yawn satisfactorily and the feeling in my chest is identical to what you feel like when you hold your breath (for example, while diving) and your body asks you to breathe in and get air.
These are very distressing moments...
Honestly, this is a pattern so similar to yours that I'm surprised we don't have a clear diagnosis and proper treatment. I hope one day we can forget this nightmare.
Thank you all for welcoming me.

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Gabe, Volunteer Mentor | @gabrielm | Jul 20, 2023

In reply to @trast "Hi Gabe. Yes, my blood tests are now perfect. A short time ago, I had a..." + (show)

Absolutely, I also hope we will be able to put it behind us one day! From my experience with experimenting with various things over the years, I think I can safely say that while it's not behind me, it's very much to the side of me. It interferes minimally in my daily life and it's come down to a few key things;

- utilizing what I've learned from the Buteyko breathing method; learning how to nasal breathe, to resist the urge to take deep breaths over time, and breathing exercises
- Mild to moderate physical exercise with very controlled breathing; this includes light jogging, some weight lifting (as my breathing allows) and never pushing myself hard with exercise
- Incorporating healthy eating and lifestyle; I've been enjoying learning about proper nutrition lately
- Walking! This one is relatively new as I recently established a goal of getting 10,000 steps a day. I started doing this daily, with an hour walk in the early morning and this has put me from the 'doing ok' category to the 'hey I barely know it's there' category in terms of air hunger symptoms. I've done some research on walking and there are a whole host of benefits including being low impact, you're not working hard, you're still exercising and you're improving cardio. It's also meditative and gives me a chance to practice slow and controlled nasal breathing. So I'm going to continue doing daily long walks and I think it will improve things further.

So these are some things to consider that have helped me tremendously over the years.

I also learned some "rescue exercises" when I felt like I was going to have a panic attack when this first started for me which involves mentally telling yourself that you're ok and you're not in danger. Then do some mild breath-holding sessions where you breathe out your nose, hold your breath for 10 seconds or so, rest for a couple of minutes, and repeat. This helped me regain control of my breathing when I felt like I was going to panic.

Is there something from this or maybe from your research you're hoping to implement as part of your improvement plan?