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Mysterious shortness of breath: What has helped you?
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.
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Has anyone even mentioned diaphragm issues, injury to the phrenic or vagus nerves? https://my.clevelandclinic.org/health/body/21578-diaphragm
Hi @debkl . I think these may have been brought up in the discussion by others at some point. I know there are a lot of comments here but I have also looked into the possibility of vagus nerve injury and possibly a weak diaphragm
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1 ReactionHi Gabe: I have had breathing problems for about 2 years. 2 bouts of pneumonia. They discovered 6 months ago that the right side of my diaphragm was paralyzed! It is in an upward position and never decends when I inhaled so my lung can fully inflate. I took a bad fall a couple years ago and struck the edge of my right rib area. Was black an blue for a while. They don't know if my
phrenic nerve was destroyed or if it even has any function at all right now. They said it was too difficult to test and would be very painful for a nerve conduction test. I am 73 years old . According to my Dr.s, there is not much they can do except PT which I start next week. I feel like they have just given up. I am miserable with this. I also have degenerative disc disease. I don't know what to do anymore.
Matthew Kaufman MD in NJ specializes in phrenic nerve disorders.
It is possible for herniations or injuries along the cervical spine to affect the phrenic nerves.
Hi @lms4ever, hopefully the PT makes a difference and provides some sort of relief. It certainly wouldn’t hurt to get a second opinion to see what other doctors may have to say - have you talked to a few yet? What others tests have they done for you?
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1 Reaction@Ims4ever I too have a paralyzed diaphragm. It is a rare condition which most primary care physicians and pulmonologists know little to nothing about. Unless you have medical conditions that would keep you from getting treatment for your paralyzed diaphragm, I don't think you aren't getting good advice from your doctors. There are things which you can do about it that will improve your breathing, stamina and quality of life. Did you have the sniff test which determined your diagnosis? I personally didn't have the nerve conduction tests to see if my phrenic nerve was functioning, but people on the facebook page for people with paralyzed diaphragms have. From my understanding, it is not a painful experience; but many had trouble finding a place with qualified people to get it done. I highly recommend you join that facebook group. It has over 800 members now, all of whom are doing or have done the 5 ways there are to deal with a paralyzed diaphragm: 1) do nothing, 2) if your paralyzed diaphragm is due to a recent injury of the phrenic nerve, wait 2-3 years to see if it heals itself and the diaphragm starts working again, 3) install a diaphragm pacemaker -- Dr. Ordners at the University Hospital in Cleveland, 4) have a functioning nerve from your leg grafted onto the non functioning phrenic nerve by Dr Kaufman in New Jersey, and 5) plication surgery being done by many specialized thoracic surgeons at major medical centers around the country. I recommend you find a highly trained thoracic surgeon who specializes in minimally invasive chest surgery using robots who has experience in doing plication surgeries to discuss your options or contact the doctors mentioned above. Most seem to be at larger major medical institutions affiliated with university hospital systems. I'm probably going to have plication surgery later this year or early next year at the diaphragm center at Columbia University in NY. They have some great information on their website. I don't know where you live, but you can get ideas of doctors who are familiar with treating people with paralyzed diaphragms from folks on the facebook page. Many have gone to the Mayo clinics in Rochester, Arizona and Florida with great success. It may not seem so, but you are lucky to have a diagnosis. It is so rare, people get shuffled around from doctor to doctor and have multiple ER visits before anyone figures out what is going on. There ARE things you can do, other than physical therapy...so please don't give up hope, learn as much as you can about the condition and treatment options, and keep looking until you get to the right medical center and doctors who can help you. Please let me know if I can give you any other information. Best wishes.
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1 ReactionI have had a sniff test, pulmonary function test but nothing to do with the phrenic nerve.
My PCP, who just retired after 40 years in practice, stated she never heard of a sniff test when I asked about it 2 years ago.
@debkl Do you have a paralyzed diaphragm or was it something you were investigating that might have been causing symptoms you were experiencing? I'm not surprised your PCP hadn't heard of the sniff test. Did you have one to determine if you had a paralyzed diaphragm? There is an interesting discussion going on now in the facebook group with people who have paralyzed diaphragms. Most of us had x-rays dating back years or in my case decades indicating we had a raised lung but didn't display any symptoms of a paralyzed diaphragm, such as shortness of breath, lack of stamina, or extreme fatigue, until years later. An interesting explanation that makes sense but I have no idea if is true is that we didn't experience symptoms until our diaphragms became so atrophied from lack of use that our organs moved up into our chest cavities and compressed our lungs so that we couldn't breath normally. With my left paralyzed diaphragm, it's my stomach that had moved up; and for people with a right paralyzed diaphragm it is the liver that moves up and causes the problem. Interesting thought for the day. If you have a paralyzed diaphragm, I hope you have found a doctor who knows about it and can help you.
Hi, Thanks for your reply. Your experience is something I'm going to bring up with a new neurologist on 11/8.
I had what I'll call an episode that compelled me to go to the ER. I wasn't sure if it was a heart attack but after getting all the brochures from local hospitals about women's MIs being different from mens', I went. MI was ruled out. Symptoms were a feeling of rigidity at the diaphragm level, mid back, biceps and quad weakness, sweating (outside @ 3 degrees), feeling like I couldn't hold my self up, and some SOB. 2 more ER visits and then an overnight stay with cardiac cause very much ruled out, I went home, wiped out, weak, but also with gastroparesis and slight feeling that food was slow entering stomach. Everything flared again when I bent down to pick up an empty suitcase and put it away. At the 3rd ER visit, which was due to all the above but great difficulty getting a breath IN, the ER doc consulted with a neurologist who said he had no idea. Followup with a GI doc and then PCP focused on what they started calling GERD. With another flare, I went to Urgent Care and that doc said it was anxiety and GERD. Due to a scheduling error, the upper endo recommended by the GI didn't get done, COVID hit and I was unable to get in to see anyone, but started feeling better.
Everything flared again mid 2020 when I went on a cleaning spree and then I was able to correlate the first flare to a project I had at work 2 days. I have had absolutely no pain, which is what has thrown everyone off. I just saw a freshly minted physiatrist and I could tell she was just making things up. She sent me for PT for chronic thoracic back pain!
So having worked a long time in radiology and healthcare, I started reading up on A&P and could only come up with a diaphragm issue, either alone or caused by an injury to any of the areas that the phrenic nerve passes through from the work I was doing. At this point, I've seen 7 specialists, a physiatrist who said I should learn to meditate, another who said it's asthma and don't bother with phrenic nerve testing, a cardiologist who said try not to die before getting a stress test, a Sports and Spine Med guy who immediately said he had no idea, a 2nd GI who said please find someone to look at your spine, a DO who did a diaphragm release manipulation which flared everything up, and the clueless physiatrist who sent me for lumbar spine x-rays and PT for deconditioning. I'm going to see a neurologist on the 8th. The 2nd GI didn't want to waste time and $ on an endo but did send me for upper ab ultrasound.
I saw another comment here that someone's phrenic nerve issue cleared on its own after 2 years. I'm hoping that is what has happened to me but I haven't done anything to flare it up, so don't know.