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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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On a lighter note, my daughter said it is not "OCD" but instead "CDO". She says that way it will be in alphabetical order. 🙂
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1 ReactionJust checking in to see how everyone is doing? My symptoms are still happening. I saw a cardiologist and had a stress/echo done two days ago. He said I was in great shape and the issue was definitely not my heart. He also doesn't think its my lungs either since I was able to run fast on an incline. My problem really does seem to be worse when I am at rest or sitting. Even when I am trying to "relax" and watch a show I think I notice my symptoms even more. And then the viscous cycle begins. I notice that I can't get a deep breath, start to panic and imagine something must be really wrong and then I try to breathe again, can't get a good breath and my fear is confirmed. And on, and on. I just started a very low dose (2.5mg) of lexapro yesterday. I'm just so desperate to feel better I decided to see if it helps. It also just feels like something is not right in my chest. Like pressure or a fullness and sometimes I notice the slightest wheeze I think. I am chronically sleep deprived so that does not help..hope everyone else is hanging in there! I do want to stay positive and believe that my thoughts can influence how I feel and possibly aid in healing whatever is going on but SOB is a hard one to ignore and act like nothing is wrong. This has been happening consistently, without any relief, for almost 3 months straight now.
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1 ReactionWhat's Lexapro for again?
These breathing problems take SO long to figure out. I am on 5 months now. Many people here have logged years. Worst place to have
problems because breathing issues can be due to soooo many issues.
Apologies if I mentioned this already: My echo did show inflammation around my heart that they first diagnosed as pericarditis, and then months later they took a stress MRI and think I had myocarditis because my heart is now scarred. Cardiologist however isn't convinced breathing (and chest pain, tightness) problems are from heart, & pulmonologist thinks acid reflux could be causing lung inflammation which is causing my inability to take a deep breath (randomly I just get these breathing attacks where I can't get a deep, complete breath to go down, and my body only calms down when I finally am able to get a deep breath to go down and hold it for about 10-15 seconds). For me all of my breathing issues and chest pain are in the right side of my chest. And like you, I feel like something is just not right.
I am having a second opinion with a cardiologist who has experience with myocarditis/pericarditis later this month, and my primary care doctor thinks I need to have a gastroenterologist check things out next month. I have also been prescribed inhalers, they've allowed some temporary relief.
Some things I think have helped a little that may help you:
-Incentive spirometer to strengthen lungs
-Technique for when you kind of feel like you are hyperventilating: block one nostril and breathe in through nose, out through mouth
-Xanax or lorazepam
-if they haven't sent you to a pulmonologist yet, ask about an Albuterol inhaler for when you start feeling sob.
For me this all started all of a sudden 5 months ago. Never had any of these symptoms before. But I am better at this very moment than I was 4 months ago. Did they do blood tests for viruses and respiratory panels for you? Sometimes strep can be sneaky and my doctor had me do an hiv test (negative). (But I did end up with strep throat last month.)
Please let us know if you get any updates on a diagnosis!
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1 Reaction@nycmom I'd like to offer some of my own experience. I have thoracic outlet syndrome which does cause chest discomfort and spasms and it has affected my ability to breathe correctly. What happens is the scalene muscles in the neck can elevate the first rib and tightness across the chest muscles can interfere with the ribs expanding properly. TOS is aggravated by slouching and poor posture. When you mentioned resting and relaxation causing your symptoms, I was wondering if your posture was contributing to the problem, and if it might be TOS. I might suggest seeking the advice of a physical therapist who is familiar with TOS. You can see a specialist MD at a university medical center that treats TOS. A lot of doctors don't understand it and miss the diagnosis, and there are different variations of it. Mayo is a good place for this. I came to Mayo because I needed spine surgery, and also had TOS which was affecting my neck. What helps TOS for treatment is myofascial release. TOS can be caused by an injury or repetitive stress and your physical build can affect it too. Here are some links about TOS and our discussion about Myofascial Release. One of these articles talks about a case similar to yours where a patient was evaluated by a cardiologist and for lung function and all of it was normal.
https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/https://www.painscience.com/articles/respiration-connection.php
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3501918/
https://share.upmc.com/2016/08/thoracic-outlet-syndrome-symptoms-and-causes/
https://trainingandrehabilitation.com/how-truly-treat-thoracic-outlet-syndrome/
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2 ReactionsI work for doctors. They don't know everything. It's impossible. You have to question and bring up stuff, spark their thinking, no matter how doctors look at you with that arrogant stare. It's your body. It's your life. My primary care doctor ignored me for 3 weeks when I told him I couldn't breathe and I had chest pain. He finally did an echo stress test on me, and they found inflammation around my heart. I ended up in the hospital. I could have died if I hadn't pressed him constantly. I subsequently switched my primary care doctor.
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1 ReactionThanks for your thoughts. It's interesting what you say about posture--I am breastfeeding and my posture is definitely terrible as a result of the hours where I am basically slumped over versus sitting straight up. After you posted that I made an effort to stand and sit up as straight as I could and I noticed the slightest improvement in my SOB. That said, I still have weird pains and aches in my back and chest that create so much anxiety about what this could be. I have started the lexapro because as a result of all this SOB/air hunger issues I have been having my anxiety has become really bad. I am skeptical, annoyed even, that SSRI's have been recommended but I don't know what else to do. I have three young kids and I am desperately needed to be present and healthy and I feel I am living in a nightmare right now. I can't even begin to really explain what this is all like to my husband which makes me feel more alienated. Anyone else feel this way?
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1 ReactionThanks so much for your thoughts and advice . I have taken Ativan which was mildly helpful but didn't solve the problem. I'm glad you were an advocate for yourself so that they could figure out what was going on with you and the pericarditis. For my all my breathing issues are on the left side of my chest...interesting you notice yours specifically on one side as well. Are you able to exercise or go up stairs the same as before this all started for you? Do you feel like you have "health anxiety" about this? For me this is becoming a whole other problem the longer I go without feeling better...
Hard trying to explain it to anyone. Even doctors. One thing that seemed to help a couple of my doctors is that I recorded myself having an attack so I could show them what I'm going through.
You have to just keep eliminating things until you get an answer. It's a nightmare. A lot of specialists, a lot of time, and a lot of scans. But if you aren't breathing right, you aren't breathing right. Your body is telling you something is wrong.
Well, I definitely feel when I can't breathe it's pretty scary, and it creates a ton of anxiety. But because this started all of a sudden and I never have had these symptoms before, I don't think I've developed an overall health anxiety. Like you have every right to be anxious about what's going on, because right now you have no idea what's going on. All you get are answers that don't quite explain things, and because of that they can't treat the cause of the SOB.
I have not been exercising as before because with pericarditis and myocarditis they just tell you to rest, so my activity level is really low right now.
Your pain is all on the left side? Tricuspid and bicuspid valve leakage issues can cause shortness of breath because your heart's not functioning that great, but the doctors have to do a cardiac stress MRI to see that stuff. One thing I did find out is that my mom has valve leaks that are highly hereditary. Did either of your parents have any valve issues?
Same symptoms for me. My family doc, cardiologist and pulmonary docs all said it was anxiety Suggested I go on anti-depressants. It was the support and info I received from here that actually helped me. It was suggested here that i see an ENT. Doc. I ended up having a severe case of silent reflux that was so bad, it was closing up my throat, causing me difficulty takings deep breath. I was prescribed 2 antacids and after 6 weeks I am finally back to my old self. I am totally off coffee and other acid producing foods because of the reflux. It was hard to completely stop coffee but I am sleeping better than I have in years.