Mysterious shortness of breath: What has helped you?

@debki I feel badly that I don't have any good advice for you and you don't seem to be close to finding a reason for your flare ups despite visiting numerous doctors. I think you are wise to see a neurologist if you think your flare ups had to do with your phrenic nerve. It's my understanding the phrenic nerves can heal themselves within 2 years of being injured. You can have some nerve conduction tests done to see if yours are working or not. In all the doctors you have been to, did you see a pulmonologist? Has there been any evidence on your chest x-rays that you have a raised right or left lung, which would indicate a paralyzed diaphragm. If you think you might have a paralyzed diaphragm, you need to have a sniff test done...which a pulmonologist or thoracic surgeon could order for you. As you did, I went to the ER when I thought I was having a heart attack. My symptoms were shortness of breath after climbing a flight of stairs, extreme fatigue, feeling faint and having chest pains. They took me seriously and did a bunch of tests that ruled out a heart attack or stroke but admitted me to the hospital for more tests. Fortunately for me, someone picked up the fact on my chest X-ray that my left lung was elevated. They called in a thoracic surgeon who ordered more tests that led to my diagnosis of a left paralyzed diaphragm. Since it is such a rare condition, I feel really lucky that the doctors were able to diagnosis it within a week and know a lot of this had to do with my going to the ER of a hospital at a major medical center affiliated with a university. If I had medical issues that no one could figure out, I would find a functional medicine doctor who specialized in looking for root causes of medical problems and addressing them. You could find one by doing a google search on functional medicine doctors near (wherever you live) or finding the organization of functional medicine practitioners and doing a search on their site by location. One of the things you mentioned that intrigued me that a functional medicine person would pick up right away is a possible correlation between the onset of your symptoms and cleaning -- they look for toxins when they are looking for root causes of problems. I hope you find some answers and relief soon! Best wishes!

Thanks again for your reply.

I did see a pulmonologist, though my post above wasn't very clear. He was the one who told me to forget about phrenic nerves, don't do testing because it's not accurate and not pleasant. He did not want to hear about all the other symptoms, such as the chest and back muscle weakness. He said to me "Once you get the thought out of your head that there is something else wrong, you will feel better. We're all getting older." My PFTs were worse than expected but it was done when I was having diaphragm spasms (or whatever it is) so he thinks it's all asthma. The pulmonologist took care of my father and was great, which is why I went to him.

I had a CXR in the ER on 7/2/21, but it was done while I was sitting in bed. The report doesn't even mention the lungs.

I have a background in healthcare and a degree that included a lot off biology, A&P, etc, and have worked for doctors who have been great mentors, plus with having figured out that the migraines I had were actually cervicogenic and fixing that on my own, I know about the structures of the upper body, the course of nerves and their branches. My spine is a mess and I understand that isn't a guarantee for pain, but if something got out of whack back in Nov 2019 with one of my moderate disc bulges, it could be affecting the phrenic nerve or even anterior thoracic nerves, when I do certain activities. It's almost as if the doctors I've seen don't want to deal with patients who might know something about their bodies. So, we'll see what the neuro says.

@dbkl I know people on the facebook page for people with paralyzed diaphragms have recommended getting MRIs done to see if anything is pressing on the phrenic nerve. It's been fascinating to learn about all the things people there think caused damage to their phrenic nerves and paralyzed diaphragms, such as Parker Turner Syndrome, damage during operations or from accidents, vaccinations, etc. Maybe something was pressing against your phrenic nerve and caused/is causing your problems. I'm not really understanding why you think you might have a paralyzed diaphragm and hope you will get a chest x-ray and other tests, like the sniff test, to rule it in or out. I am astounded at the ignorance, disrespect, flippancy and lack of concern and caring exhibited by your doctors. It sounds as though you need a whole new team of doctors; and I hope you can visit a place like the Mayo Clinic that takes a team approach where doctors from different disciplines work together to assess and treat difficult cases. In the meantime, I urge you to join the facebook group for people with paralyzed diaphragms. Many people in the group have multiple health and lung issues; and your symptoms and what you are experiencing might resonate with someone there. I've learned an incredible amount from them and think the collective knowledge and wisdom of the 800 people in the group surpasses that of most doctors, who frankly don't know much about paralyzed diaphragms. I hope you'll let us know what the neurologist says. Please take care, keep looking for doctors who can help you, and don't ever doubt yourself and your symptoms. You know when something isn't right.

Hi everyone, this thread has been going for many years, and I am unsure if people are still active on here, however, I would like to share my thoughts to see what you all think, being someone experiencing these symptoms.

Once again I am another person experiencing nearly the exact same set of symptoms as everyone in this forum. I would be fascinated if there was not an appropriate medical diagnosis that the majority of us are all seemingly experiencing. I noticed somebody linked research on 'sighing syndrome' also known as 'sighing dyspnea'. These conditions seem to encompass the exact symptoms, however, there are only two or three articles I could find on it, so it's either extremely rare or outdated in some way? Some of the research also seems to suggest that a majority of people with symptoms of 'sighing syndrome' had suffered a recent traumatic experience, however, I do not think that is conclusive, as myself and many others in this thread had no significant or mentionable causing experiences. Additionally, the only recourse researched on the limited articles on 'sighing syndrome' seems to be through doctors reassurance to patients of the benign course of the condition, and I suppose they suggest this treats it? I also noticed 'pseudo-dyspnea' linked on this thread, perhaps this is another form or a replacement of the sighing dyspnea?

Nevertheless, I am extremely thankful for finding this forum. I felt like I was going crazy trying to put into words the symptoms I was facing, but the words used in this form made complete sense to my situation. I am a 20-year-old male, and my symptoms developed this week. I have absolutely no history of any type of mental health condition and was never under the impression I was subject to such a condition. I have been to three general practitioners, and they have all said similar things, with the last one apparently seeing 'many people' 'particular of my age group' come to him describing my symptoms (although he never had a specific medical diagnosis other than generalised anxiety), and suggested that I need to understand that I am healthy, and need to meditate and to resist the urge to take the deep breaths. The doctors took my oxygen satiation levels which were nearly 100%, listened to my heart and breathing, blood pressure, all simple tests that indicated nothing was wrong. The doctors did not seem to offer any further recourse or referral to specialty, other than general anxiety remedies. But once again, I never have experienced any form of mental illness, so I struggled to believe the doctors, ironically though the symptoms did begin when I was studying for my uni exams, however, I have been subject to many exams in the past, and have only felt mere anxiousness that any student would feel, never a more serious disorder of general anxiety.

I noticed a lot of people are very hesitant on this perspective of generalised anxiety, I have read several pages on this form, but considering the forum now goes to over 160 pages, I am unsure what type of consensus has been developed, so I was hoping perhaps the post creator or someone else who has been following the thread over the years could provide insight on what has been concluded. I noticed one person in particular, @tonyagregg who was suggested that the deep breaths are a form of 'ticks', and that resisting this tick, albeit extremely difficult to begin with, will eventually result in the urge leaving. Has anyone found success with this strategy? And perhaps has the OP still been free from symtpoms since she was recommended this? This type of perspective is one that my doctor seemed to suggest, stating I need to relax and resist that urge. He did explain to me that the SOB causes a downwards spiral, as the more you believe something is wrong with you or the more you believe you will live with this condition and have a poor quality of life, the more anxious you get, which will worsen symptoms.

To me, it seems there is merit to these claims. Perhaps 'sighing dyspnea' or 'sighing syndrome' is an unknown or outdated term because it is just another term for general anxiety-induced pseudo-dyspnea (meaning anxiety causing a sensation that makes one belief the yare short of breath). I write this still experiencing symptoms, and I am trying my best to resist the urge, however, I am finding it extremely hard to do so. However, as I experience and many others experience, these symptoms feel so extremely real that it feels impossible that it is just in our heads. Which is why I suspect so many people go to such extensive testing to see any medical conditions, however to their detriment, usually nothing surfaces.

On a side note, I have been experiencing two unusual symptoms, which could be and are likely entirely unrelated to the phenomenon that we are all experiencing, however, I thought I would mention it in the case anybody else also feels this, or perhaps anyone has an opinion on how these extra symptoms could explain the SOB.

I estimate for the past two to three weeks, I had felt a significant amount of muscle twitching or fasciculations of some sort at rest. That is, whenever I am sitting, lying down, not moving, I often feel one muscle somewhere across my entire body moving, in a non-painful yet irritating way, for approximately 20-30 seconds. One would believe this is a clear symptom of anxiety which would support the diagnosis of anxiety for the SOB, however as I mentioned I have felt this for weeks, before I had any exams or stresses of that nature, in the beginning, I put it down to a lack of activity as my city was in a harsh lockdown at the time, however this is in fact not any cause to twitching of this nature, it was merely an excuse I used to ease it in my head. My second doctor took a blood test to check for some type of antibody that indicates muscle weakness just to make certain his diagnosis of anxiety, however, I am awaiting results.

I have also noticed an increased amount of stomach growling the past few days, usually after digestion of some food or liquid. This can be a normal sign of digestion, it has however occurred a little more than I would normally notice, hence why I thought I should mention it. However once again it could be just an unrelated symptom of digestion.

TL;DR
I would love to know if there is any consensus on how to treat this condition. I observed from my doctor and others in this forum that 'resisting the urge' is a way to completely eradicate it, so would love to hear people's experiences, although I am finding it extremely hard to resist. I have only done basic diagnosis tests at my doctor's clinic however my doctor does not seem to think I need any specialist testing, and based on the posts in this thread I am pretty confident that unfortunately, they would come back as normal and healthy.

Hi @jessep, this is indeed still a very active forum! New people like you come across this thread on a regular basis. I am the OP and while we don’t have a consensus or cure, we’ve gathered some coping techniques and continue to search for answers all the time.

My symptoms come and go. The air hunger is still there for me but is manageable and not severe like it was when I wrote this post.

Many people have other conditions, such as what you mentioned but also things like GERD, lung conditions, or something else. But many still experience the air hunger as pretty much the only symptom of anything.

I’ve considered Vocal Cord Dysfunction which I’ll be tested for later this month or possibly an issue with the diaphragm.

My method that has helped reduce symptoms for me is the Buteyko breathing method and moderate daily exercise. There may be something to what they teach regarding deficient CO2 levels but never came to a conclusion if that’s an issue. It could very well be a symptom however.

Did the blood work come back with any nutrient deficiencies?

I have very similar symptoms to you. One thing I recently came across is a weak or paralyzed diaphragm. Look into it. Maybe its the answer you have been looking for. It could be that the breathing exercises are working temporarily because they are strengthening your diaphragm and not necessarily because of a balancing of co2.

Thank you @brandeemay, that has been in the back of my mind as a possibility for me and others here. Did you get this checked out for you? If so, what have you found out?

I recently had CT scan, that noted that lung bases show bibasilar atelectasis. My daughter had similar symptoms and her doctor diagnosed pneumonia with Zithromax, which took away the bteathlessness.

Hi Everyone,

I cannot tell you how extremely grateful I am to have come across this page. As I read the many many posts starting in 2019 I felt like I could almost cry from relief. I feel like this is the first time I’ve seen in words how I feel internally and have been unable to describe! I’ve had the hunger for air for about 3 months strongly now, though I feel like it was mild for about 6 months, if not more. Like many before me I’ve done all the blood work, stress tests, etc. I’ve been going to therapy and acupuncture (which seems to give relief for a couple days at a time!) but have found no permanent solution. I do feel like I’ve developed anxiety from this condition which has made it worse, but I do believe there is an underlying cause. I’ve been wanting to do a gut health diet for a couple weeks now as I was suspicious that might be the cause! Thank you for the wealth of knowledge that has been added to this forum. I feel so hopeful after reading all of this!!

Hi @mgereda, first of all, I’m sorry that you’re going through this, but I’m glad you found us. It feels good to have a mysterious condition be put into words especially when communicating with doctors. Seems like you’ve done most of the tests you could do, and did any test or blood work show anything unusual? Have you tried breathing exercises? That has helped me manage my breathing for a while.