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.

@colleenyoung

Hi @felicityr, you mention that you are a doctor and medical specialist. Are you a PhD or MD? What field of medicine?

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Hi Colleen, I have a medical specialist degree (an FRACP) and am a practicing doctor. I love medicine and all things medical fascinate me but I come to this group because I have experienced over many years the mysterious breathing anomaly being repeatedly described here. Despite being medical (or maybe because of it) I am acutely aware of the difficulties doctors have in dealing with symptoms with no clear answer.
My own sense is that this 'condition' causes more morbidity than medicine recognises but that because it has now been labelled "panic" and "anxiety" no one is bothering to consider it more closely.
I really don't want to be here giving anyone medical advice, but I understand that on a site like this there is always a risk that anything i say will be taken as "medical advice". It is always difficult being medical regarding declaring that you are. If you don't then it can be hard to explain why you know what you know, but if you do you risk all that goes along with that.
Please if you want to speak with me more (eg about my medical field, which is one of the big medical specialities), use my provided email to contact me as I prefer not to put too much out publicly which could identify me specifically.

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@felicityr

Hi Colleen, I have a medical specialist degree (an FRACP) and am a practicing doctor. I love medicine and all things medical fascinate me but I come to this group because I have experienced over many years the mysterious breathing anomaly being repeatedly described here. Despite being medical (or maybe because of it) I am acutely aware of the difficulties doctors have in dealing with symptoms with no clear answer.
My own sense is that this 'condition' causes more morbidity than medicine recognises but that because it has now been labelled "panic" and "anxiety" no one is bothering to consider it more closely.
I really don't want to be here giving anyone medical advice, but I understand that on a site like this there is always a risk that anything i say will be taken as "medical advice". It is always difficult being medical regarding declaring that you are. If you don't then it can be hard to explain why you know what you know, but if you do you risk all that goes along with that.
Please if you want to speak with me more (eg about my medical field, which is one of the big medical specialities), use my provided email to contact me as I prefer not to put too much out publicly which could identify me specifically.

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Morbidity?? That is so not what I want to hear as someone who has this and panic disorder. Now I am ultra freaked out.

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@gabrielm

@lidiaboglarka When my dyspnea first started back in 2012, I did research on mineral/vitamin deficiencies as well. So I started taking vitamin B12, which strangely had an immediate effect of clearing the problem very quickly. I could breathe normal again. That went on for probably just a few weeks, maybe a couple of weeks, and then the dyspnea returned and so I started taking an iron supplement. Once again, that helped clear the problem for days, and then it returned. So I don't know why that happened, but any supplements I take now, including magnesium, don't help the problem.

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Have you tried any psych meds? I keep seeing that SSRI's can reverse this.

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@qbug

Morbidity?? That is so not what I want to hear as someone who has this and panic disorder. Now I am ultra freaked out.

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Hi Q bug,
I'm so sorry I freaked you out. That was not my intention but I can see how it happened.
There are two terms used all the time in medicine. They "go together" and are "morbidity" and "mortality".
(In medicine they are used as neutral terms.)
We use them when we are talking about the effects of any medical illness or condition.
Mortality refers to the chance of a person with a condition dying from that condition, so, for instance, a high speed car crash without a seatbelt on would be considered to have a "high mortality".
Most medical conditions people have don't kill them, but they can cause varying degrees of suffering - pain, limitations of movement, difficulty exercising etc etc. These things are, collectively, referred to as the "morbidity" of a condition. So something that has a high morbidity has a lot of negative effects for the person who has it, and something that has a low morbidity has not too many negative effects.
Chronic shortness of breath, and, in particular the sensation of "air hunger", which many people on this site are struggling with, are often played down by the medical community. My point regarding "morbidity" is that doctors often don't understand the degree of suffering (ie the morbidity) that these conditions cause people to endure and so they don't take them that seriously.
For many people with panic disorder, breathing difficulties are an intrinsic part of their disorder and this is well recognised. So if the doctor says you have panic disorder and gives you treatment for it and it all makes sense and you feel better then that is good, and appropriate.
My comment about "panic" is that for some people, it is not the primary disorder causing their breathing problem, but if they get labelled with that, and the label is incorrect, it becomes almost impossible to get the doctor to help them look for alternative, better fitting, diagnoses, and, unless they do, it may be less likely that the person will be able to get help to get better. For people in this situation, the wrong label can be devastating.
I hope this helps to reassure you.
Kind regards

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@felicityr

Hi Q bug,
I'm so sorry I freaked you out. That was not my intention but I can see how it happened.
There are two terms used all the time in medicine. They "go together" and are "morbidity" and "mortality".
(In medicine they are used as neutral terms.)
We use them when we are talking about the effects of any medical illness or condition.
Mortality refers to the chance of a person with a condition dying from that condition, so, for instance, a high speed car crash without a seatbelt on would be considered to have a "high mortality".
Most medical conditions people have don't kill them, but they can cause varying degrees of suffering - pain, limitations of movement, difficulty exercising etc etc. These things are, collectively, referred to as the "morbidity" of a condition. So something that has a high morbidity has a lot of negative effects for the person who has it, and something that has a low morbidity has not too many negative effects.
Chronic shortness of breath, and, in particular the sensation of "air hunger", which many people on this site are struggling with, are often played down by the medical community. My point regarding "morbidity" is that doctors often don't understand the degree of suffering (ie the morbidity) that these conditions cause people to endure and so they don't take them that seriously.
For many people with panic disorder, breathing difficulties are an intrinsic part of their disorder and this is well recognised. So if the doctor says you have panic disorder and gives you treatment for it and it all makes sense and you feel better then that is good, and appropriate.
My comment about "panic" is that for some people, it is not the primary disorder causing their breathing problem, but if they get labelled with that, and the label is incorrect, it becomes almost impossible to get the doctor to help them look for alternative, better fitting, diagnoses, and, unless they do, it may be less likely that the person will be able to get help to get better. For people in this situation, the wrong label can be devastating.
I hope this helps to reassure you.
Kind regards

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Thank you for clarifying!!! I am not a medical terminology savant haha!

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@gabrielm

@lidiaboglarka When my dyspnea first started back in 2012, I did research on mineral/vitamin deficiencies as well. So I started taking vitamin B12, which strangely had an immediate effect of clearing the problem very quickly. I could breathe normal again. That went on for probably just a few weeks, maybe a couple of weeks, and then the dyspnea returned and so I started taking an iron supplement. Once again, that helped clear the problem for days, and then it returned. So I don't know why that happened, but any supplements I take now, including magnesium, don't help the problem.

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B vitamins can be acidic. I finally figured out I can't take anything acidic. I have to use alkaline forms of all supplements...gluconate, aspartate, carbonate, bicarbonate, sometimes citrate. Chloride, taurate, malate, glycinate etc don't work for me or cause me big problems. Other people swear by those forms. Magnesium is a tricky mineral. If you can get the form and dose that works for you it can help with so many things but it's trial and error. Some people don't have the patience.

If people think their SOB is related to acidity they might need calcium as well. Tums are calcium carbonate which is an alkaline form of the mineral that helps to buffer acid in the body. Calcium citrate might work. An easy trick...drink fortified almond milk and see if you improve. They usually add calcium in the form of citrate or carbonate.

If your SOB happens after a meal or exercise, acidity could be your problem.

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@lidiaboglarka

Three years ago I didn't have arithmia, but my BP and pulse is usually very low. Nowadays it feels even worse.
I definitely have lightheadedness, muscle cramps and inflammation, lately headache, acidic stomach (for some days I've been taking PPI, that calmed down my stomach), chest pain (most probably because of a strained pectoralis muscle and my possible reflux). Cramps in my calf is quite common, and nowadays vibrating sensation around my mouth. And of course, SOB. Regardless of what I'm doing, resting or exercising. I also can easily get stressed. I have coeliac, and even though I'm keeping the diet for 8 years now, I easily can have nutrition deficiency.
I didn't have serum mg checked, but my urine test came back with normal amount of Ca, b12 and iron. The last two I'm taking as a supplement.

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Here's some info about acidity #2 talks about deep breathing.
https://sunwarrior.com/blogs/health-hub/3-surprising-simple-ways-alkalize-body
I've also been trying to ramp up meditation. I've seen studies on the effects of meditation on the body. One benefit is that it counteracts acidity in the body's tissues, also detoxes and boosts immunity. They also found that it boosts substances that help fight off virus attack.

Count me in on that 🙂.

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@merpreb

@tamaracaitlin- Good morning. There is a name, it's called Shortness of Breath or Dyspnea which is the scientific name. There are a ton of names and symptoms and causes. My pulmonologist earlier this year said that the main cause for it now is obesity. I've mentioned this before but if I gain 5+ pounds it affects my breathing.

Here is some more information that you might find interesting.
https://www.medicinenet.com/shortness_of_breath/symptoms.htm
You don't mention when this started for you. Have you tried the buteyko method?

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That link made me have worse SOB. Js
It’s a list of the worst things in the world that can happen or be the cause. Which I’m sure everyone here at some point seen before and doesn’t want to go back to that page again.

The 5lbs over thing was very interesting though. Because at 173 I didn’t have any where near the problem I have now, but at 180 I can’t breath every day all day and just want to sleep because it’s the only time I’m ok..

And my business life requires me to be awake so that give me more anxiety and more sob.

If I had a magic genie and 3 wishes all
If then would be to be able to breath normal

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@qbug

Morbidity?? That is so not what I want to hear as someone who has this and panic disorder. Now I am ultra freaked out.

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@qbug- Morbidity is a noun, meaning the condition of being diseased or the rate of disease in a population. Is this better for you?

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@peach414144

Do not know where to fit this in but here goes, Cannot get the answer to: For a person who has never taken prednisone will taking 150 mg of prednisone and then 10 hours later taking another 150 mg of prednisone be dangerous or even deadly for an 83 year old woman with many health problems? I will explane more if someone needs to know for an answer.

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@peach414144- Hi Peach. I would suggest asking your pharmacist this question. Prednisone is potent medicine. What has your doctor said about the dose?

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