Mysterious chronic shortness of breath

[gabrielm]

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.

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 do have inflamed sinuses which exacerbates the SOB, but even when it's clear, the SOB is still there. 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?

[knitter]

I used to do my Buteyko exercises regularly , but I haven't for some time and I certainly notice the difference.

What CP did you reach? I have had numerous chest infections which do not help.

Buteyko believes in ' hidden hyperventilation' ....maybe you are over breathing without realising it......just check at different times during the day that you are gentle belly breathing with a relaxed diaphragm and shoulders.....gently through your nose to warm and filter the air. No mouth breathing if possible.

David Carbonell on you tube has a good video on how to breathe in a relaxed manner....belly breathing but not ' big breathing' .....gently.

Have you tried the pursed lip breathing method when you feel breathless.....breathe in gently through your nose, and out gently in a relaxed way through your pursed lips for a slightly longer time.......gently....repeat a few times.

Small held fans have been mentioned on this site and other places.....I have one .......just hold the battery fan near your lower face and aim the cool air upwards. It does help.

Have you been tested for allergies, all three of my adult daughters are allergic to different things.....I have tried to dust proof my house and no pets allowed any more. Has any one suggested anti histamines.......check with your GP or pharmacist as some may not be suitable .

Just one thing about Buteyko....it is not suitable for everyone as it raises C02, not for people with transplants etc.......always check that you are not at risk first.

Meditation, yoga and mindfulness have also helped me relax, physically and mentally.....I went to a teacher at first which helped with any underlying issues .

Relaxing music with a slow beat can help slow and relax my breathing I find, or distraction techniques like jigsaws, or puzzles.

Apologies for the long post.....I hope it was not too boring, but I can understand, I think , how you feel.

Best wishes .

[gabrielm in reply to knitter]

I have done Buteyko exercises for 6 years! I stopped during the times my breathing seems normal but lately the exercises yield little results. I’ve achieved a CP of 35 - 40 and I’ve achieved a Steps score of 157! My average Steps score to this day is 120. Yet my shortness of breath remains. I focus on reducing breathing all the time but it is still there no matter what. So I don’t think it’s hyperventilation. I think there is an underlying cause. I take allergy medicine every day.

[Michiganpbc in reply to knitter]

Have you been checked for sarcoid?

[lm03 in reply to Michiganpbc]

I have same issues. I have a strong history of sarcoidosis, maternal cousin has it in her heart. My mom in her skin and aunt had it in lungs. I had a chest x ray and bloodwork which was negative. Spirometty test was 63% after three weeks of shortness of breath and chest pressure and tightness. I have had a chest x ray which was normal besides thyroid nodules and have an echocardiogram coming up. I just turned 35. I am not sure what it could be and doctors prescribed inhalers and steroids which didn't help. Still looking for answers. EKG showed fast hear rate tachycardia, but thats it.

[gabrielm in reply to lm03]

Let me know if you find out anything. My spirometer rests all came back with normal results.

[gabrielm in reply to Michiganpbc]

Not directly. But I don’t have any of the other symptoms. Lungs function just fine. X-rays all normal. Heart normal. So I don’t think it’s that.

[Michiganpbc in reply to gabrielm]

In sarcoid the pft test is usually normal thats why i asked if you were checked for that? Mine are normal so i am asking for a referral to a pulmonologist to rule out sarcoid as this is the major symptom unexplained shortness of breath .

[gabrielm in reply to Michiganpbc]

Hmm I’ll definitely consider that. Didn’t know that SOB could be the only symptom.

[Hidden]

Sounds like asthma tbh get them to do lung function tests with a reversibility test which shows if your lung function is low and can be improved with a asthma pump, also when you breathe concentrate on the exhalation not the inhalation everyone thinks it’s about getting the air in but if you can’t get the air that’s already in your lungs out you can’t replace it with new air, make your exhalation twice as long as your inhalation and try googling diaphragmatic breathing this might help, strengthens your breathing muscles and you learn to use your diaphragm to completely empty your lungs

[gabrielm in reply to Hidden]

I’ve done lung function tests which all came back normal. I don’t have asthma. I diaphragmatic breathe every day. No breathing exercises help

[Pvanamo in reply to gabrielm]

Hi gabrielm

I have been suffering of the exact same problem now continuously for 2,5 years. Before that I have hade bad periods for a few days - months but it has always disappeared by itself. The past 3 months have been the worse so far, I have been feeling very fatiqued with a lot of SOB, both at rest and during exercise. The doctors have probably done every possible lung and heart function test but everything has come back normal. So the current ”diagnosis” is some sort of panic disorder. The problem is that I do feel the need to take deep breaths all the time, besides when I sleep. It is as if I need to force the air to the upper part of my lungs, just below my throat, and the normal breathing does not satisfy the need. I also have some inflammation in my nose and often stuffed nose but as you wrote, even if I do not have the problem is there. I have never heard of anyone suffering of the same thing, and also feel like there has to be a cause other than hyperventilation. Generally breathing exercises of any kind just make me feel worse. Yoga helps a little bit but lately even yoga has felt like too much. I used to be an active and fit person but now feel like a trip to local grocery store makes me lightheaded. Have the doctors checked pulmonal arterial hypertension? Im not sure whether my doctors have excluded it.

[gabrielm in reply to Pvanamo]

I believe pulmonal arterial hypertension has been excluded as a possible cause. The lung function test didn't show any obstruction in the airways.

[Pvanamo in reply to gabrielm]

Ok well that is good. Does your SOB get better or worse in some positions? Mine is always better if I squat, which leads to a desire to squat everywhere, it might be ok if I lived in China but here in Europe it is regarded as a bit strange position. Some yoga stretches also make it feel better or disappear. Do you drink coffee? Sometimes I feel like coffee makes it worse, have not been able to quit to test the theory however.

[gabrielm in reply to Pvanamo]

if I exercise too hard I will temporarily lose the ability to take a deep breath. So I can’t do any cardio exercise or long bouts of any exercise. Lying down seems to make it a little worse. I have to sleep sitting up on the couch. Besides those, there isn’t anything that makes it better or worse throughout the day

[Pvanamo in reply to gabrielm]

I have the same problem with exercise, can’t do cardio. Used to run a lot before this. Now I try to do yoga and calmer exercising 2-3 times a week to keep up some condition. I also feel it is affecting my sleep, though I sleep in bed. But I cannot sleep on my back anymore, have to sleep on my side. We seem to have similar problems. Unfortunately no answers so far. I am thinking of maybe running some new tests after the holidays, I am mostly worried about PAH at the moment. Is there someone here that has pulmonary hypertension and can describe how it feels?

[gabrielm in reply to Pvanamo]

I would do a full lung function test. I did that just to rule any lung condition out. The tests were al normal. I suspect yours would be too. Do you have any GI issues; hiatal hernia, heartburn, GERD, etc?

[Pvanamo in reply to gabrielm]

What is full lung function test? I have done one in which I was breathing in and out into a tube in different ways, emptying my lungs fully and so on. The result was normal. A CT scan, heart echo and ecg have also been normal. I have read that these do not rule out PAH, even though there often are abnormalities. I dont think I have any GI issues, or at least I dont feel it.

[Hidden]

Excuse my earlier comment aha I’ve had shortness of breath same as yours for months now and the never knew why and the brompton gave just called it a breathing pattern disorder/dysfunctional breathing and sent me to a chest physio to learn how to breathe again as my breathing has gone funny probs cause I have reduced lung function from infections as a kid and I’m getting all the symptoms of asthma and the pumps don’t help but the exercises do, maybe it’s worth going to see a respiratory physio

[Sevenstar]

It sounds like you have what is called Dysfunctional breathing, ( if you've been given the all clear for everything else ) it used to be called Chronic Hidden Hyperventilation ( because people can't see that you are doing it) !

I've suffered with this for years , Gerd , postnasal drip and Bronchiectasis cause me to over breathe plus years of Asthma ! It's quite easy to get into the wrong breathing pattern on and off for years which is why you need to re-train periodically.

If you can get your hands on one buy a CD by Anne Pitman , she explains everything so clearly and then does some breathing pattern exercises with you, I promise it will really help yo understand the physiology of breathing patterns!

Also google Chronic Hidden Hyperventilation.

[gabrielm]

Yes I’m very familiar with CHVS. I came across that about 6 years ago when I first got this symptom. I did Buteyko breathing exercises which helped but the problem has always come back. I’ve been doing breathing exercises daily for at least 2 years. They help but it doesn’t make the SOB go away. Which is why I suspect there is some mysterious underlying cause of this that I haven’t found yet. I’ll probably submit my case to Crowdmed to see what medical professionals have to say