1. < Lung Health
Mentor

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.

kierenc | @kierenc | Jun 2, 2020
In reply to @merpreb "@kierenc- When do you see your doctor? If you do have GERD and it is not..." + (show)
@merpreb

@kierenc- When do you see your doctor? If you do have GERD and it is not treated that could lead to a whole series of new problems.

this might give you some idea of what you might be dealing with.
https://kidshealth.org/en/teens/gerd.html

Jump to this post

I saw my doctor yesterday, she didn’t feel the need to do any test or anything. She said sometimes When we think about it we think we need to take deep breaths when we really don’t.

REPLY
1 reply
Merry, Alumni Mentor | @merpreb | Jun 3, 2020
In reply to @kierenc "I saw my doctor yesterday, she didn’t feel the need to do any test or anything...." + (show)
@kierenc

I saw my doctor yesterday, she didn’t feel the need to do any test or anything. She said sometimes When we think about it we think we need to take deep breaths when we really don’t.

Jump to this post

@kierenc- Isn't this just great? She brushed your symptoms under the rug because she doesn't have an answer. You should tell her this. What do you think?

REPLY
Mentor
Gabe, Volunteer Mentor | @gabrielm | Jun 3, 2020
In reply to @felicityr "Hi Guys, I have never joined a chat group before but having read your descriptions I..." + (show)
@felicityr

Hi Guys,
I have never joined a chat group before but having read your descriptions I wanted to be in touch and give you my thoughts.
I am a doctor, a medical specialist. I have the same symptoms as you. They began when I was a child. Intermittent. I remember waking at night and telling my Mum I couldn't click my breath over. She was matter of fact. I'd get warm milk by the fire, reassurance and back to bed. It came intermittently.
As a young adult I began to associate it with periods of changing exercise intensity - if I upped my exercise, eg I began jogging, or swam more than usual, within days it would begin. If I let my exercise slip it would also flare but not as bad as when I upped it.
Between 8 and 15 weeks into my first pregnancy it was terrible. I suspect this was a change in my progesterone levels affecting my blood vessels.
Being quite fit the past few years has helped - when the need to "click over" my breathing intensifies being fit feels like it makes my diaphragm stronger and better able to make the breath "complete'.
In recent weeks however my clicky breathing has flared and is the worst I have had in years. I suddenly realised that my husband and I have increased our exercise quite markedly during the lockdown, doing a long walk through the hills every day. I also run with quite a low standing BP.
The past few days it has been terrible, on a 2 to 10 minutely cycle; increasing urge to have to get my breath "clicked over". I alternately try to do it, then give up because the lack of a "successful" breath feels so awful, and try to just ignore the background feeling until it suddenly bursts forth so severely that my diaphragm activates and my breath clicks over and I immediately feel relieved and back to normal... for a few minutes till it all goes again. yesterday I was working on a project I enjoyed. i decided to time the 'cycles' of needing to 'gasp'. It was running at about 4 1/2 minutes for the urge to begin, to 6 minutes when i could click it over. I found rhythmicity interesting as I was not "watching the clock" between times.
I am absolutely sure you guys know what i'm talking about because I believe we have a condition which medical science has yet to grasp or take seriously. Unfortunately, now, this condition has been put in the mental health basket and labelled "panic" and/or "anxiety" disorder and thus no one will ever try and figure out the true cause. These labels are great when they are correct, and it can be useful to learn skills to cope with insoluble symptoms, but i believe many people have been given these diagnoses for these symptoms and either accepted the diagnosis because it came from a doctor, or they knew it didn't fit, but realised that trying to argue it is pointless and just proves that you have mental illness with a lack of insight.
No one who doesn't have this would understand how much it can exhaust you physically and do your head in with it's intrusive symptoms and no coherent explanation. i explained to my husband that it's like I've got a faulty fire alarm in my chest. It is set off if my breath isn't "right". When it goes off it's so loud that it is impossible to ignore. It is screaming at you that you have to take a deeper breath. The big question is, what is "faulty" and setting off that alarm? i believe anxiety is primarily secondary. Mine is not related to anxiety but I gave up talking to doctors about it because they are so determined to stick it to that. I have had all sorts of the usual anxieties and stresses in life and my breathing at and around those times has been fine. Then 'out of the blue' I have it for weeks. No one in this big complex world of ours has a life without stresses and anxieties and thus any medical professional who wants to will always be able to find something psychological to hang it to. For those for whom that explanation resonates I say go for it, but if not, please don't just cave in and think that they must be "right". You really will end up with an anxiety or a panic disorder.
My thoughts:
The feeling I get in some ways is very like when I was fully pregnant and lay on my back - this diffuse extreme "anxiety" that something was wrong, deep in my chest, and I had to move position. This is accepted in pregnancy. No one says oh that's because you're anxious about having a baby -they say oh that's because the baby is pressing on your vena-cava. I know my Oxygen is normal throughout my attacks. I know I am not over breathing.
I also believe the relief that I get when my breathing "clicks" is instantaneous and this is too quick a response to reflect a change in my alveolar CO2 or oxygenation. I believe that if it is primarily lung related then it is more related to some sort of pulmonary (lung) blood vessel stretch receptor or something. It may be that our blood flow into our lungs is not giving the correct 'stretch' signal - maybe we have low vascular pressure in our pulmonary vasculature - in a certain region where there are receptors doctors haven't even identified yet. By activating our diaphragms and taking the deepest breath we can what we are actually trying to do is increase the negative pressure in our chests to suck more blood into our lungs so the "enough" feeling is triggered. As soon as we trigger the stretch receptor it sends the relief message to our respiratory centre and we stop 'gasping".
I do at times wake at night, suddenly, from deep sleep, with a need to click over my breathing. Frustrating because all I want to do is go back to sleep. But interestingly, I think when this happens I am almost always lying on my back (my normal sleep position is on my side) so I roll to one side and seem to be ok again.

[It is also worth seeing what your BP does when you are lying and standing, and also your pulse rate to see you have an associated postural problem maintaining your blood pressure. I think for some people, increasing exercise does things to the autonomic nervous system that we don't yet understand. it's important to have a doctor check you out fully, too, to rule out recognisable lung or chest disease but please, if these are your symptoms, don't be surprised when everything comes back normal. See the good in that]

Other thoughts: As I am sure you are aware, one of the most reliable ways to trigger the "click over" is to yawn. I have to wriggle my jaw side to side to evoke a yawn. When that doesn't work it's awful (and my jaw starts to suffer from all the wriggling).
Finally, my other thought which I believe is worthy of exploration. I have a young adult son who has tourettes. He is off at university at present. I realised in recent years just how like a "tic" my clicky breathing is; the urge occurs. it builds up and up and I have to do the "response" to satisfy the urge and the urge melts away instantaneously - only to return again and again. I have therefore often tried to ignore the urge and let it build and build because with tics, if you do this and can maintain the "pain" of the urge long enough, the urge will often finally wane. This definitely works to an extent but it takes a lot of effort. Amazingly, my son told me recently that one of his many tics involves the need to take a deep breath to get rid of the urge that he is being suffocated. I asked him what he did about it. He said he gets embarrassed with people seeing him yawning and trying to take deep breathes all the time but apart from that nothing, because there's nothing to be done, it just is.
Tourettes is a neurological condition. Tics are not psychological even though you can exert some control over them in the short term.
Unfortunately many people misclassify tics as "just a nervous tic", failing to recognise the morbidity they can inflict.
My mum died a few years ago. She was a private person but I think she got this also. I think it's why she recognised it in me as a girl and was so matter of fact about it (she never thought to get me medically checked out because she was confident it was just something that we got).
Guys I have to go. Would love to keep in touch. I believe you. I know we have something. We have to create enough noise so that people start recognising it as a condition and properly researching it, not just sending us to counsellors to get us to deal with the consequences, rather than address the causes.
Remember the story about stomach ulcers; physicians always told patients that ulcers were secondary to stress and sent patients for counselling (and guess what, everyone had stress that they could blame). Until the 1980s, when an Australian physician, Dr Barry Marshall, finally looked deeper and discovered that no, in fact, stomach ulcers were caused by a difficult to identify bacterium they called helicobacter pylori. Suddenly, instead of counselling, people got antibiotic and proton pump combinations and everything changed (for the better, unless you were a counsellor). Barry Marshall won a nobel prize for this work.
If there is one thing you can do, collect together people who think as we do, and try and find an open minded, interested and brave physician who is prepared to revisit this and investigate it in different ways. We will find an answer one day.
In the meantime, stay strong, and know you are not alone, and you are not going mad.
And it will settle.

Jump to this post

@felicityr Thank you for your input. More and more people are finding this forum and thread and are adding to the conversation. I too hope a doctor can review all this information and help with finding answers.

REPLY
felicityr | @felicityr | Jun 4, 2020

Dear All,
Thank you for welcoming me to your group. What a diverse and inspiring bunch! I read how, day after day, you go on, coping with what is an exhausting and intrusive disorder, yet never giving up hope.
My hope is that even if I can't make this better for myself I can help to create a movement that sees our children and our grandchildren who may develop this disorder, find answers and treatment rather than dismissive platitudes, or well meaning but misguided therapies.
It concerns, but doesn't surprise me that KierenC, your doctor told you that "sometimes When we think about it we think we need to take deep breaths when we really don’t." That can be said about any symptom and is a cop-out: Think about presenting with itch, or dry cough, or urinary frequency, all of which could easily generate the same dismissive response. All of which will drive the suffering patient away with the message that if they just "stop" the aberrant "behaviour" everything will get "better".
I believe the human body has a powerful drive to suppress pain and distress so that we can get on with living. I believe this helps explain the phenomenon of people with "clicky breathing" (as I call it) finding their breathing struggles somewhat suggestible.
The underlying condition we have which causes this does not "go away". Instead we minimize it and get on with our lives.- we learn to suppress the signals telling us to "click over" our breathing. When something or someone draws our attention to it, our brain suppression is removed and the breathing issue, which has been there all along, becomes noticable again and we need to respond. When our condition is bad, not even minimizing or suppression is enough - the symptoms come to the fore whether we want them there or not.
I have no idea whether this is a form of "tic" or not, but it is worth returning to the paradigm of the tic to understand this. Insensitive doctors can consider a tic to be just "doing something that we really don't need to do" but it is not. It is a signal created by a neurological abnormality deep in the brain - a brain circuit that is short-circuiting. People with tics have a brain circuit that fires off too frequently and thus drives their tics. Their brain develops new pathways which put a brake on the abnormally firing tic circuit. But to keep this brake on requires huge mental effort. When they are stressed or in an anxiety provoking situation, they cannot deal with that, AND keep their fragile "brake" on their out of control "tic" circuit and thus their tics become evident under stress. It is NOT stress or anxiety causing tics, but UNMASKING tics.
Likewise, I believe stress or anxiety OR someone or something drawing attention to your breathing when it is in a bad phase, will unmask the difficulty that is there. It does not cause it.
I think the primary research question which needs to be asked is WHERE is the signal that our breath has not been satisfactorily completed being generated? We can get clues as to how to go about this by looking at constellations of symptoms that seem to link with this condition. The two that stand out for me from within this group (and I would be interested in other patterns any of you are noticing) are 1) the association in good proportion of people with apparent gastro-esophageal reflux, and 2) the association with worsening in the days following significant exercise (which is something I have noticed in myself over many years).
Research isn't easy and doesn't just happen. WHAT do you look at? What tests do you decide to run? WHO is going to find the funding to do it? All are big issues. Researching GERD isn't easy. To properly define it requires sedation and scopes and monitoring wires down your throat. Many of us have been tested in at least some ways and we know that even at our worst our oxygen levels remain normal.
As a start, test-wise, I would love to see some simple studies where some of us, in a bad phase, have doppler flow studies of our pulmonary vessels during an attack - trying to capture flow and pressures during the moments when we feel the distress of being unable to catch a big enough breath, and during the moments immediately after satisfying the "feeling". This would probably have to be done in a research setting, and normal values would need to be clarified before trying to establish what may be abnormal.
I also wonder about a connection with the autonomic nervous system, in particular, conditions such as Postural orthostatic tachycardia syndrome. I think everyone who has these breathing symptoms deserves at least a simple but thorough medical assessment of their cardiovascular postural responses (ie BP and pulse rate on lying and standing, possibly also a tilt table test, and also consecutive analyses of these over time, especially in the days following intensive exercise)
Merry thank you for your moderating and for asking what may already be out there. I will see what I can find. I must confess I have for many years just hoped that "someone' would find the answer. Somehow, I don't think that is going to happen because people think they already have and so will not look further.
I believe our first step, as a group, may be to begin to toss around some names we think may work in capturing the condition we have. With a name, we can then start a conversation. Somehow I don't see "Clicky Breathing Disorder" capturing the respect of the medical establishment!
And like it or not, that is who we have to bring onside.
I suppose one final caveat to all of this is that we are a diverse group and within our experience, it is a fact that we will turn out to have a diversity of diagnoses, and maybe even a diversity of causes for a diagnosis. Maybe over time we will identify subgroups of us with different types of breathing anomalies. Let's hope that through this process we can all get some clarity, and some relief.
Have a good weekend all, and may you and yours be warm and safe.

REPLY
abidaisl | @abidaisl | Jun 5, 2020

Question : Do you guys have this shortness of breath problem constantly or is it like comes and goes away? For me some days I have SOB constantly for few hours. Some days it stays for an hour or less. But it happens every day.

REPLY
2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 5, 2020
In reply to @felicityr "Hi Guys, I have never joined a chat group before but having read your descriptions I..." + (show)
@felicityr

Hi Guys,
I have never joined a chat group before but having read your descriptions I wanted to be in touch and give you my thoughts.
I am a doctor, a medical specialist. I have the same symptoms as you. They began when I was a child. Intermittent. I remember waking at night and telling my Mum I couldn't click my breath over. She was matter of fact. I'd get warm milk by the fire, reassurance and back to bed. It came intermittently.
As a young adult I began to associate it with periods of changing exercise intensity - if I upped my exercise, eg I began jogging, or swam more than usual, within days it would begin. If I let my exercise slip it would also flare but not as bad as when I upped it.
Between 8 and 15 weeks into my first pregnancy it was terrible. I suspect this was a change in my progesterone levels affecting my blood vessels.
Being quite fit the past few years has helped - when the need to "click over" my breathing intensifies being fit feels like it makes my diaphragm stronger and better able to make the breath "complete'.
In recent weeks however my clicky breathing has flared and is the worst I have had in years. I suddenly realised that my husband and I have increased our exercise quite markedly during the lockdown, doing a long walk through the hills every day. I also run with quite a low standing BP.
The past few days it has been terrible, on a 2 to 10 minutely cycle; increasing urge to have to get my breath "clicked over". I alternately try to do it, then give up because the lack of a "successful" breath feels so awful, and try to just ignore the background feeling until it suddenly bursts forth so severely that my diaphragm activates and my breath clicks over and I immediately feel relieved and back to normal... for a few minutes till it all goes again. yesterday I was working on a project I enjoyed. i decided to time the 'cycles' of needing to 'gasp'. It was running at about 4 1/2 minutes for the urge to begin, to 6 minutes when i could click it over. I found rhythmicity interesting as I was not "watching the clock" between times.
I am absolutely sure you guys know what i'm talking about because I believe we have a condition which medical science has yet to grasp or take seriously. Unfortunately, now, this condition has been put in the mental health basket and labelled "panic" and/or "anxiety" disorder and thus no one will ever try and figure out the true cause. These labels are great when they are correct, and it can be useful to learn skills to cope with insoluble symptoms, but i believe many people have been given these diagnoses for these symptoms and either accepted the diagnosis because it came from a doctor, or they knew it didn't fit, but realised that trying to argue it is pointless and just proves that you have mental illness with a lack of insight.
No one who doesn't have this would understand how much it can exhaust you physically and do your head in with it's intrusive symptoms and no coherent explanation. i explained to my husband that it's like I've got a faulty fire alarm in my chest. It is set off if my breath isn't "right". When it goes off it's so loud that it is impossible to ignore. It is screaming at you that you have to take a deeper breath. The big question is, what is "faulty" and setting off that alarm? i believe anxiety is primarily secondary. Mine is not related to anxiety but I gave up talking to doctors about it because they are so determined to stick it to that. I have had all sorts of the usual anxieties and stresses in life and my breathing at and around those times has been fine. Then 'out of the blue' I have it for weeks. No one in this big complex world of ours has a life without stresses and anxieties and thus any medical professional who wants to will always be able to find something psychological to hang it to. For those for whom that explanation resonates I say go for it, but if not, please don't just cave in and think that they must be "right". You really will end up with an anxiety or a panic disorder.
My thoughts:
The feeling I get in some ways is very like when I was fully pregnant and lay on my back - this diffuse extreme "anxiety" that something was wrong, deep in my chest, and I had to move position. This is accepted in pregnancy. No one says oh that's because you're anxious about having a baby -they say oh that's because the baby is pressing on your vena-cava. I know my Oxygen is normal throughout my attacks. I know I am not over breathing.
I also believe the relief that I get when my breathing "clicks" is instantaneous and this is too quick a response to reflect a change in my alveolar CO2 or oxygenation. I believe that if it is primarily lung related then it is more related to some sort of pulmonary (lung) blood vessel stretch receptor or something. It may be that our blood flow into our lungs is not giving the correct 'stretch' signal - maybe we have low vascular pressure in our pulmonary vasculature - in a certain region where there are receptors doctors haven't even identified yet. By activating our diaphragms and taking the deepest breath we can what we are actually trying to do is increase the negative pressure in our chests to suck more blood into our lungs so the "enough" feeling is triggered. As soon as we trigger the stretch receptor it sends the relief message to our respiratory centre and we stop 'gasping".
I do at times wake at night, suddenly, from deep sleep, with a need to click over my breathing. Frustrating because all I want to do is go back to sleep. But interestingly, I think when this happens I am almost always lying on my back (my normal sleep position is on my side) so I roll to one side and seem to be ok again.

[It is also worth seeing what your BP does when you are lying and standing, and also your pulse rate to see you have an associated postural problem maintaining your blood pressure. I think for some people, increasing exercise does things to the autonomic nervous system that we don't yet understand. it's important to have a doctor check you out fully, too, to rule out recognisable lung or chest disease but please, if these are your symptoms, don't be surprised when everything comes back normal. See the good in that]

Other thoughts: As I am sure you are aware, one of the most reliable ways to trigger the "click over" is to yawn. I have to wriggle my jaw side to side to evoke a yawn. When that doesn't work it's awful (and my jaw starts to suffer from all the wriggling).
Finally, my other thought which I believe is worthy of exploration. I have a young adult son who has tourettes. He is off at university at present. I realised in recent years just how like a "tic" my clicky breathing is; the urge occurs. it builds up and up and I have to do the "response" to satisfy the urge and the urge melts away instantaneously - only to return again and again. I have therefore often tried to ignore the urge and let it build and build because with tics, if you do this and can maintain the "pain" of the urge long enough, the urge will often finally wane. This definitely works to an extent but it takes a lot of effort. Amazingly, my son told me recently that one of his many tics involves the need to take a deep breath to get rid of the urge that he is being suffocated. I asked him what he did about it. He said he gets embarrassed with people seeing him yawning and trying to take deep breathes all the time but apart from that nothing, because there's nothing to be done, it just is.
Tourettes is a neurological condition. Tics are not psychological even though you can exert some control over them in the short term.
Unfortunately many people misclassify tics as "just a nervous tic", failing to recognise the morbidity they can inflict.
My mum died a few years ago. She was a private person but I think she got this also. I think it's why she recognised it in me as a girl and was so matter of fact about it (she never thought to get me medically checked out because she was confident it was just something that we got).
Guys I have to go. Would love to keep in touch. I believe you. I know we have something. We have to create enough noise so that people start recognising it as a condition and properly researching it, not just sending us to counsellors to get us to deal with the consequences, rather than address the causes.
Remember the story about stomach ulcers; physicians always told patients that ulcers were secondary to stress and sent patients for counselling (and guess what, everyone had stress that they could blame). Until the 1980s, when an Australian physician, Dr Barry Marshall, finally looked deeper and discovered that no, in fact, stomach ulcers were caused by a difficult to identify bacterium they called helicobacter pylori. Suddenly, instead of counselling, people got antibiotic and proton pump combinations and everything changed (for the better, unless you were a counsellor). Barry Marshall won a nobel prize for this work.
If there is one thing you can do, collect together people who think as we do, and try and find an open minded, interested and brave physician who is prepared to revisit this and investigate it in different ways. We will find an answer one day.
In the meantime, stay strong, and know you are not alone, and you are not going mad.
And it will settle.

Jump to this post

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

REPLY
1 reply
nick43 | @nick43 | Jun 5, 2020
In reply to @abidaisl "Question : Do you guys have this shortness of breath problem constantly or is it like..." + (show)
@abidaisl

Question : Do you guys have this shortness of breath problem constantly or is it like comes and goes away? For me some days I have SOB constantly for few hours. Some days it stays for an hour or less. But it happens every day.

Jump to this post

Hi @abidaisl. For me it seems to come and go. Sometimes I don't notice any urge to take the deep breath for a few hours. But it happens everyday. On good days maybe 6-10 times a day, lasting maybe 5 minutes to 30 minutes, hard to say exactly. But that urge is almost always apparent, ever so subtly, basically feeling it all the time, trying to suppress it. I think it depends what I'm doing or what I'm concentrating on, or sometimes I think it's after meals more, but there are days I wake up knowing it will be bad because of the dreaded unfulfilling yawns; even while lying in bed before getting up in the morning (ughhh it's here already). On the good days I don't see much of an urge to yawn in order to fulfill and satisfy, only the deep breath urges. Generally it's about 3-6 attempts at a deep breath until it "clicks" or as I like to call it a satisfying breath. I've thought and researched the sympathetic and parasympathetic nervous system. The satisfying deep breaths I believe triggers a parasympathetic response; or maybe its the other way around where our lack of satisfaction comes from not having the parasympathetic present..? Any doctors have input here? I'm not a doctor just a curious researcher trying to get to the bottom of this and help those who are suffering... including myself.

I've posted in this forum before, here is a brief background:

The urge to take that deep breath generally followed by unsatisfactory yawns started with me about 4 months ago. I don't smoke, I'm in good shape, 43 yrs old, 5'8 155 lbs, workout lightly with small weights maybe 3 days a week, go for 30+ minute bike rides or longer 2-3 days a week. I can run a 5k tomorrow if I had to. Blood pressure is good, heart rate fine, I take omeperazole for gerd but that's it. I've never been tested for covid but don't recall anytime having symptoms, of course other than shortness of breath. Could this be leftover trauma from a lung infection??
My Dr has given me an albuterol inhaler and allergy medicine: neither do anything for the SOB. Chest x-ray came back fine. I just went for a pulmonary function test and was told it looked fine. Although upon reading into the results it shows my lung capacity is slightly high and I have mild air trapping. ? ( is this a bad thing for my age?) The chest x-ray technician told me I have long lungs. I'm not sure if thats good or bad. And like @fellicityr I don't believe stress is the underlying culprit. Any anxiety is secondary to the SOB.
I also had an appendectomy about a month before the SOB started. Anesthesia is a weird thing, could that have anything to do with it? Has anyone else had anesthesia before starting to experience the mysterious SOB?
So after about two months my symptoms ever so slightly started to improve. I thought, geee maybe I can deal with this just how it is and I'll be fine. I've been dabbling with meditation and focusing on mindfullness since this started... Anything to try and cope... It seems to help but certainly does not fix the issue.
So just recently I went for the pulmonary function test, looking for asthma, I was told everything looks fine. That evening the SOB started to get worse, back to what it was two months ago. The next couple days was also bad. Could I have been straining my lungs to much during the test? Like some people here who get it worse the days after strenuous exercise... I've also experienced symptoms worsening the day after an intense bike ride. But then a few days later I feel ever so slightly less SOB. But of course it never goes away, it is still present...everyday....every...day.
Thank you all for listening. If anyone has ideas or a response to some of my questions above I'd greatly appreciate it. I'm very happy to be part of this discussion, it helps. Let's find some answers. Take care everybody!!

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felicityr | @felicityr | Jun 5, 2020
In reply to @abidaisl "Question : Do you guys have this shortness of breath problem constantly or is it like..." + (show)
@abidaisl

Question : Do you guys have this shortness of breath problem constantly or is it like comes and goes away? For me some days I have SOB constantly for few hours. Some days it stays for an hour or less. But it happens every day.

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Hi Abidaisi,
This is a good question and an important thing to try and nail down.
When I think of my "shortness of breath", it's defining feature is that (even though I am at rest) I take a normal breath in but it doesn't feel like I have had "enough". I then try for a bigger breath. Sometimes this will "click over" my breathing - give me the feeling that my need for air has been satisfied and i can breathe out, but, sometimes, even a bigger breath can't satisfy the feeling of having 'enough". The drive to breathe is the most basic conscious drive we have. It kicks in the moment we are born (and we are even practicing in the womb before we are born) so when our alarm system tells us we are not getting a big enough breath it is pretty distressing.
I believe this is the moment lots of people with this condition get panicked and then get labelled with a primary panic or anxiety disorder.(I am not arguing that anxiety plays no part in the abnormal breathing patterns of some people, rather that I believe it is NOT the answer for all of them).
For me, when I get to this point I just feel resigned ("here it goes again") and I resort to the other "tricks" I have to try and get a satisfying breathe: wriggling my jaw to start a yawn is my usual first trial. Then I try sitting quietly and letting the feeling of suffocation build while telling myself I have been here many times before and I always come through it. It's a faulty alarm and despite its noise I know my oxygen level is ok. Often this leads eventually to an almost unstoppable large gasp which "clicks over" my breathing again. Occasionally I will lie down if I am standing - but always on my side not my back (because I have this belief that the problem has something to do with low blood pressure within my lung blood vessels). Sometimes I will just jump on the spot to trigger a deeper breathe through exercise.
I'm sorry this is so long winded but for me, the term "shortness of breath" doesn't capture the specifics of what I experience.
But the thing is, instantaneously when my breath "clicks over" relief floods through me and I have NO shortness of breath -maybe for minutes, maybe for hours, until the signal to take a deeper breath becomes evident again and I again feel a building "shortness of breath".
All in all, I have (usually) days to weeks where my breathing goes "off", as I have described above, coupled with periods when I can go for months with no problems at all - I have months where my breathing is essentially normal. Maybe the odd unsatisfying breath that is fixed with a bigger "gasp".
I suppose the key feature for me is the complete relief of any sense of "shortness of breath" the instant I click my breathing over.
Hope this is of some help.
Please if you do have shortness of breath though, don't assume it is this until you have been checked out by your doctor. And if you still don't think it is this, and you feel unwell, seek another medical opinion.
Warm regards (it's getting cold on this side of the world!!)

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2 replies
felicityr | @felicityr | Jun 5, 2020

Hi Nick43 🙂
"there are days I wake up knowing it will be bad because of the dreaded unfulfilling yawns; even while lying in bed before getting up in the morning (ughhh it's here already)."
Yes indeed!! I know exactly this feeling. Sorry I didn't see your post earlier. Am just about to get out to plant our strawberries (!!) but would like to try and give you some thoughts on your questions above before too long.
I agree with you totally, I believe something in the study of the autonomic nervous system will give us clues to this.

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bbspore12 | @bbspore12 | Jun 5, 2020

Hi everyone. I've felt a sense of relief that there are people out there who are experiencing the same breathing issues as me and is receiving no answers! My doctor took a bunch of blood tests and determined that I had walking pneumonia. I have felt no improvement in my breathing since taking the antibiotics. I'm getting so frustrated.

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