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.

@rovelaris21

Hi! This may sound weird. I've had this going on for about 20 years now. I happened to come across a tik tok like 10 mins ago talking about POTS and air hunger. I had never heard of anyone else having this issue until that video. Everyone kept saying it was anxiety or that I was just weird. I came across this post because I started searching air hunger on Google. Have you been checked for POTS? I wonder if that may be what's causing it. I'm going to reach out to my cardiologist and ask them to check me for that just in case. I hope this helps ❤️

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I have an appointment with my cardiologist next month and I’m going to ask him about POTS. Thank you for sharing about POTS. I have also had this issue for 20 years. I complain to my husband about it and he doesn’t understand the frustration I have with my breathing. He thinks I’m crazy lol

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@sarah66

Llevo 3 años así suspirando cada dia,no mejora con absolutamente nada, luego otra teoria que me dijo un doctor es que tengo una incoordinacion respiratoria por un nervio pinzado...pero ya ni sé que pensar, aveces si pienso que es el reflujo gaseoso pero yo me mediqué y no me ayudó con estos suspiros nada parece funcionar

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Yes, get your spine checked and see a neurosurgeon, then let the group know about your success.

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@grandma72

Yes, get your spine checked and see a neurosurgeon, then let the group know about your success.

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did you have the same problem? Did you feelt the need to sigh every 2 minutes constantly all day? I have to sigh all the time or yawn, I'm getting desperate, did you have the same problem?

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@sarah66

did you have the same problem? Did you feelt the need to sigh every 2 minutes constantly all day? I have to sigh all the time or yawn, I'm getting desperate, did you have the same problem?

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Sarah, I was short of breath upon minimal exertion for 91/2 years. Before it hit, I was working out at the gym for months before with weight HR s and very active but never out the two together. After years and years of tests, many invasive, at Johns Hopkins, Cleveland clinic, Hershey medical and all around where I lived in PA, I was getting worse and could do less but with no answers. I also developed the sighing and trying to get a good breath during this last year. My husband was with me through it all and he suggested they check my spine finally and it was discovered that I jd narrowing at several places in my neck but a herniated disc at C5/6. The neurosurgeon completed anterior cervical discectomy removing the disc and put in a spacer. The shortness of breath upon minimal exertion was finally gone after the surgery when I awoke… Praise the Lord! However, the ‘trying to get a breath’ was worse ( yawning, sighing) and I wasn’t sure if it was due to healing or the medications or?, so now, after a year and a half since the surgery and the healing, it settled down and got better but I still have it sometimes and it seems to be happening upon reaching high, lifting, carrying etc., so I think ( in my opinion only) that I wish they had replaced perhaps C3/4 as well? So, at this point I’m documenting When it happens and why so perhaps if it gets worse and it doesn’t seem to be getting better, I can see the neurosurgeon again and see what he thinks. I really don’t want to get another surgery, though. But I would indeed if necessary as this not being able to get a breath and feeling like a fish out of water is worse than the shortness of breath upon minimal exertion was in that I was able to just go slow and was okay. We sold our house and downsized, so there would not be any steps as it used to take me about 15 minutes to 20 minutes to go up the 15 steps we had in our split level. I couldn’t roll over in bed and pull the covers without panting and chest pain with tingling down the arm. I went from being very active to enjoying life at the pace of the turtle I guess, but despite the frustrations and the unhappiness of being in the situation I was, I felt blessed that it wasn’t my heart and my lungs nor any of the other dozen things that we explored, i.e. hiatal hernia, throat, nose, voice box, thyroid ( they ablated it ;(, etc. and just made the most of it. It wasn’t until it got so bad I couldn’t go from the bed to the bathroom, and my thumb got numb, I was off-balance, that is when we took action to find another direction.
I would think it would benefit you to at least explore this option of seeing a neurologist and having the X-rays and MRIs done, though, and I would love for you to get back to me with your results and any success that you have. Thank you, and good luck.

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o m g this has been my life since 2018… no doctor can find anything and just the way u describe it perfectly in words at the beginning is what happens to me. i am so frustrated and i can’t find an answer and it’s like ruining me

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Hi Gabe, I have been having exactly the same issue, diagnosed with GERD due to LES dysfunction, inflammation in nasal passage and sinus issue, iron and Vitamin B12 deficiency (but that I believe is due to the raberperazole medication I am on). It's been 3 months since it started happening, at first I thought it is something related to lungs and then we narrowed it down to my inflammation in nasal passages then found out that I have GERD due to LES dysfunction. I myself try to gulp air and have shortness of breath, I am glad to find someone facing the same issue because so far I have been to 7-8 physicians, including Gastroenterologist, ENT, etc. Let me know if we can connect somehow and talk more about it.

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@sarah66

Hola Mostafa ya se te quitaron los suspiros y los bostezos? tu tambien suspirabas a cada rato?

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Hi Sarah
Im still on medications
They help me 70 80 %
Im looking for a medication that cure me completelly
Becuese i believe anxiety and OCD cause my yawning and air hunger
If you dont have phisically probelm i preffer you going to Psychiatrist.

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@mostafamahjoori

Hi Sarah
Im still on medications
They help me 70 80 %
Im looking for a medication that cure me completelly
Becuese i believe anxiety and OCD cause my yawning and air hunger
If you dont have phisically probelm i preffer you going to Psychiatrist.

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every how many minutes do you sigh now?? i need to know this please
I sigh every 2 minutes and I don't understand why. They are involuntary sighs, how many times do you sigh a day?
What is the name of the medication you take?

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@sarah66

Llevo 3 años así suspirando cada dia,no mejora con absolutamente nada, luego otra teoria que me dijo un doctor es que tengo una incoordinacion respiratoria por un nervio pinzado...pero ya ni sé que pensar, aveces si pienso que es el reflujo gaseoso pero yo me mediqué y no me ayudó con estos suspiros nada parece funcionar

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@sarah66, have you tried breathing exercises? Just slowing down my breathing and getting into the habit of breathing only through my nose and resisting the urge to sigh helped me a great deal. It helped to regulate my breathing over time to where I'm not sighing all the time.

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@nishant15apr

Hi Gabe, I have been having exactly the same issue, diagnosed with GERD due to LES dysfunction, inflammation in nasal passage and sinus issue, iron and Vitamin B12 deficiency (but that I believe is due to the raberperazole medication I am on). It's been 3 months since it started happening, at first I thought it is something related to lungs and then we narrowed it down to my inflammation in nasal passages then found out that I have GERD due to LES dysfunction. I myself try to gulp air and have shortness of breath, I am glad to find someone facing the same issue because so far I have been to 7-8 physicians, including Gastroenterologist, ENT, etc. Let me know if we can connect somehow and talk more about it.

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@nishant15apr, sorry to hear you've been going through this. Your situation sounds similar to mine!

Have you started taking any supplements for the nutrient deficiencies? Also, are you taking anything for the sinus issues and have you determined this to be caused by allergies?

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