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

@mostafamahjoori, It's good that the breathing exercises are helping even if a little. That means progress! It might take some time for the body to adapt to the exercises and I think you may see some more improvement.

Have you looked into other ways to deal with anxiety? There is an effective method of dealing with anxiety and other issues called Cognitive Behavioral Therapy. I believe this may help reduce your anxiety over time, and something I would suggest looking into. There are online sessions to learn CBT, and I think would be worth a try!

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Yes, I'm going to psychology sessions right now
Its hard to exercise every day but i have to try more
The best for you
Im going to update here

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Hi Gabe! I am so glad I stumbled upon your article. You are the first person to describe exactly what I have been battling with for about 3 years. I have the constant feeling of needing to take a deep breath and about 90% of the time , it is not satisfying. Mine started out as an occasional dyspnea and gradually got worse. Now I feel this shortness of breath all day everyday , with very minimal periods of relief. I have tried breathing exercises and they do not help at all. But maybe I need to try for longer stretches. I started running a few days per week about 2 years ago and it is torture to run, but I try to do it because it makes me feel healthy afterwards. It doesn’t get any easier though . Which after sometime, it should . I have the normal levels of anxiety that comes with being a parent of two and working full time .. and sometimes I wonder if this could be anxiety related because everything else is Normal but I do not have any other symptoms of anxiety what so ever and usually anxiety is situational- doesn’t last all day everyday. I would do anything for an answer and solution to this problem! It’s gotten so bad that it’s starting to affect my daily life . Thank you for sharing your story.

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Hyperventilation syndrome

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Associated symptoms include:

Dizziness or lightheadedness

Shortness of breath

Belching, bloating, dry mouth

Weakness, confusion

Sleep disturbances

Numbness and tingling in your arms or around your mouth

Muscle spasms in hands and feet, chest pain and palpitations

Many conditions and situations can bring on hyperventilation, including:

Anxiety disorder
Panic attack
Asthma
Stress
Worry or anxiety
Hard exercise
A variety of lung diseases
Side effects from certain drugs
High altitude
Having a head injury
Shock

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Thanks for posting this. For almost 5 years now I have been suffering with the same air hunger. I actually thought it was getting better until a month or so ago. now it is so bad I can barely get out of bed. As I also feel lightheaded/faint/off balance /vestibular type symptoms with mine too. I've also had lung function tests, heart echo/ halter moniter/blood tests. and the only thing they found was very low feritin levels, and low cortisol. My symptoms are ruining my life. I feel like im about to die. Anyway, it was good to read through these comments to get some ideas on where to go from here.

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@jenh1128

Has anyone considered mold in their homes as a reason for the air hunger? I have been out of town the past 2 weekends and my air hunger is just about non existent while away. I progressively becomes worse with each day once I'm home. On my really bad days I am also very bloated. I don't know if it is related, a coincidence, or I'm causing it by trying to get that deep breath in over and over again.

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interesting about the possible mold connection. I have suspected mold, as my symptoms came on not long after moving into my current home. I think I will try and find somewhere else to stay for a couple of weeks to see if it improves my symptoms at all. thanks.

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To all the sufferers on this forum . It is hyperventilation syndrome caused by OCD in most cases.
Obsessive-compulsive disorder (OCD) is a common anxiety disorder. It causes unreasonable thoughts, fears, or worries. A person with OCD tries to manage these thoughts through rituals. In this case It’s focused on breathing .

Frequent disturbing thoughts or images are called obsessions. They are irrational and can cause great anxiety. Reasoning doesn’t help control the thoughts. Rituals or compulsions are actions that help stop or ease the obsessive thoughts. Repetitive deep or fast breathing or yawning disrupts chemical balance in body and causes side effects…..

Dizziness or lightheadedness

Shortness of breath

Belching, bloating, dry mouth

Weakness, confusion

Sleep disturbances

Numbness and tingling in your arms or around your mouth

Muscle spasms in hands and feet, chest pain and palpitations

Many other conditions and situations can bring on hyperventilation, including:

Anxiety disorder
Panic attack
Asthma
Stress
Worry or anxiety
Hard exercise
A variety of lung diseases
Side effects from certain drugs
High altitude
Having a head injury
Shock

REPLY

I am going through the exact same thing. Since 12/2020. I have tried MANY things. Currently I'm on Prozac 30 mgs a day and now someone is working with me who thinks I have a breathing pattern disorder. She is a respiratory physiologist and doesn't think it's anxiety. She says I'm breathing too much through my chest and neeed to change to belly breathing. She is teaching me methods to suppress the sighs and yawns and try to even out the breathing. It's very difficult. Have you any opinion on this? I know you mentioned Buteyko breathing. I haven't looked into that but certainly will.

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@sheebacat

I am going through the exact same thing. Since 12/2020. I have tried MANY things. Currently I'm on Prozac 30 mgs a day and now someone is working with me who thinks I have a breathing pattern disorder. She is a respiratory physiologist and doesn't think it's anxiety. She says I'm breathing too much through my chest and neeed to change to belly breathing. She is teaching me methods to suppress the sighs and yawns and try to even out the breathing. It's very difficult. Have you any opinion on this? I know you mentioned Buteyko breathing. I haven't looked into that but certainly will.

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Hi
Dont give up
Does prozac help your breathing? How long are in prozac?

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@gabrielm

I feel you. I was dealing with the air hunger in much the same way as you- feeling like it was taking away a lot of time from my family and activities. Have you looked into breathing exercises like Buteyko Breathing Method? There is an online course through https://www.learnbuteykoonline.net/, and this is where I learned the technique and coping mechanisms.

I, too, ruled out anxiety early on when I realized the air hunger persisted whether at rest, active, anxious, or not. But the breathing exercises still helped me to calm down if I had some anxiety due to the breathing issue.

Do you have any GI issues that you're aware of, such as GERD, dyspepsia, ulcers, etc? Many of us with the same issue seem to have GI issues so I'm wondering if there is a connection there that we're just not aware of.

Do you consider yourself a mouth-breather even before this issue came about?

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@gabrielm I have not tried the breathing exercises but I will look into it thank you. I have never had problems with Gerd or acid reflux, only time I ever notice some was when I was pregnant 2 years ago other then that I have not had really any issues with Gerd that I'm aware of. I have actually always been a nose breather. I had stopped taking the advair hfa and actually started feeling better as the days went for about a week but still not normal feeling after i stopped the advair. and then my daughter and I got a cold and it came right back. I go to the lung doctor tomorrow I will keep yall updated. Did you ever see a specialist about yours?

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