Mysterious shortness of breath

Posted by gabrielm @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?

@lidiaboglarka

I'm truly sorry for that. I've read your previous posts and found you couldn't see a doctor. What helped me is excessively calling doctors until they were willing to listen to me. I was also bombarding my GP with e-mails until he took me seriously. After my negative COVID test doctors were more willing to examine me and talk to me, so if you can, you should make sure you didn't catch that.
Only thing is that I had to pay for most of the things, like CT, allergy tests, bacterium culturing, and consultations with the ENTs. (In Hungary, normally we should get most of these without additional payments).

I hope you'll get better soon!

Jump to this post

Thank you! Yeah my doctor just tells me to go to ER he thinks it's just my anxiety. I guess I'll have to go to ER. Thanks again for sharing your experience it's a relief that I'm not the only one.
Take care of yourself!

Liked by lidiaboglarka

REPLY
@abidaisl

Thank you! Yeah my doctor just tells me to go to ER he thinks it's just my anxiety. I guess I'll have to go to ER. Thanks again for sharing your experience it's a relief that I'm not the only one.
Take care of yourself!

Jump to this post

I hope you don't have anything serious! It's a good idea to go to ER, but be very careful. Wear a mask, use hand sanitizer, and so on. You don't want to upgrade your SOB with COVID-19.

REPLY
@lidiaboglarka

Thanks, Merry! Well, it's a long story, I swear I tried to make it short.

My SOB started 1.5 months ago, but the whole story dates back to February when I started having chilblains on my toes.
Then I had a cold, and another, and another, and in March I ended up sitting on my couch, coughing for a week, having low fever, and unable to take a deep breath or yawn. I also made a wheezing sound when I exhaled deeply or after coughing. I was prescribed antibiotics (clarithromycin), and the next day I started coughing up a lot of mucus, my nose started clearing up and overall I felt better. My SOB disappeared basically the next day I took the first pill.

On the 4th day, however, I started having pain in my right ribs, just below my breast. It felt like pleurisy, breathing, and coughing was painful, so on the 7th day, I visited my GP for help. He didn't even listen to me or to my chest (he was afraid of COVID so he tried not to get close to me), he just prescribed me another pack of antibiotics (moxifloxacin) which I then took for an additional 6 days. I got slightly better, and I stopped it because a pulmonologist who was willing to examine me and told me it might be just muscle pain, and my x-ray was clear. The side effect of moxifloxacin was a slight stabbing sensation in my heart, especially when I laid on my back. It went away immediately when I stopped it.

I still kept coughing lightly, I suspect that because of the pain I couldn't excrete the leftover mucus from my lungs. I also kept sleeping on my right side, because then it didn't move when breathing, leaving me without pain.
I started getting better, started working again (meaning bending over to the computer and stressing out because I was waaaay behind my work). I also started lightly exercising and restarted cycling.
Then while massaging some cream to my ribs, I found little pea-sized, painful nodes in my breasts. The next day they got inflamed. It lasted for two weeks, and after the inflammation went away, the nodes cleared as well. I suspect they were swollen lymph nodes, but never checked with a doctor. Almost immediately after it was gone, came my SOB in mid-April with temperature (37 Celsius), shaking, and lightheadedness.

Then I had COVID-19 test (negative), I've seen the pulmonologist again, who found my lungs okay by listening and prescribed me antibiotics because she suspected I had tonsilitis. Strangely I didn't have a significant sore throat, but my neck was very stiff and my tonsils were swollen. I got antibiotics (clarithromycin again). By the end of the course, my SOB improved a bit, but I saw no change in my tonsils.
I visited an ENT, she said I have no acute tonsil inflammation. She also asked for a pollen allergy test and head CT, all came out normal.
Then SOB got worse again. I had bacterial culturing from my throat, nothing was found.
Nevertheless, I got another pack of antibiotics from my GP (metronidazole) for anaerobic bacteria. It helped with my stuffy nose and the tonsils also got smaller, but my lymph nodes got swollen on my neck and my stomach got very upset. I was nauseous even by thinking of eating and having a terrible headache. I only managed to take it for 4 days.
Then my GP prescribed antifungal medicine, antacid, and asked for a blood test.

My blood test came out normal, indicating I don't have any inflammation.
Only a couple of values were out of the acceptable range:
ASO was high, but it was around the same level 2.5 years ago. 4 years ago I had streptococcus infection, another ENT told me it can remain elevated for years.
TSH was higher than ever (4.35), and T4 was low, just in the acceptable range, suggesting hypothyroidism.
The antacid helped me with my stomach, now it's at the level where it was at the beginning.
I stopped taking the antifungal.

My SOB started getting better since I started neck exercises and changed my preferred side of sleeping, and it gets worse when I'm bending over to the computer. Not sure, though, because of the position or because of the stress I'm having during work.
Feeling cold also makes it worse, and I'm usually shaking. I'm also wondering if hypothyroidism can cause SOB, or at least make it worse.

I was also examined by a rheumatologist, and she didn't find anything which could've caused my SOB, though 2 days after I started having pain in a specific point in my left rib (I think it's the second rib), between my collar bone and breast. Also, pain radiates to my left hand.
And here I am now, not sure, where to go to. I'm thinking of a cardiologist to make sure my heart is not to be blamed (I have palpitations and low blood pressure), also would like to rule out all lung issues by having a chest CT. I'll also consult with a GI next week because of possible reflux. I'm still taking the antacids, though. All doctors told me my tonsil problem could have been caused by reflux, even though I don't feel it. And everyone, except for the ENTs believes that my tonsils are to be blamed for my SOB.

Good news that my SOB got better by now, and I started coughing up some phlegm again.

Thank you for reading it, and please let me know if you have any suggestions.

Jump to this post

@lidiaboglarka– My first thought was that you needed to be tested for COVID-19. But you had been. I think that I trip to the Pulmonologist and a Cardiologist sounds like sound steps to take. Have you seen a GI doctor yet?

REPLY
@gabrielm

Yes @tonyagregg, I'd like to keep in touch with you. Sounds like what you have is pretty similar to me. It's been much worse before, but it's stabled out. Still not gone by any means, but I can at least live with it. Let's stay in touch. Maybe we can tag team our research or let each other know if we find some kind of answers.

Jump to this post

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.

REPLY
@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

Thank you so much for this!!

REPLY
@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

That was a great and interesting read. Thank you for posting and sharing your story/theories. Welcome to the group!

REPLY
@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– Welcome doctor to Mayo Clinic Connect. I am the mentor fo Connect for Lung Cancer and Lung Health. I am a 4-time lung cancer survivor. You have made several excellent points. I've always thought that SOB causes anxiety and winds up as a mad cycle. What came first? A lot of us do have GERD or some other form of gastro involvement. DO you know of any research that is currently being done on this that you can share or a new way of looking at this? Or new ways of finding relief?

Liked by tamaracaitlin

REPLY
@merpreb

@lidiaboglarka– My first thought was that you needed to be tested for COVID-19. But you had been. I think that I trip to the Pulmonologist and a Cardiologist sounds like sound steps to take. Have you seen a GI doctor yet?

Jump to this post

When SOB started, my first trip was to a pulmonologist, but you're right, it's high time to revisit her again. Today I talked to a cardiologist who assured me that my symptoms are not typical for heart issues. Nevertheless, of course, he will examine me when he gots back to practice.
Tomorrow I'll also talk to a GI doc, face-to-face visits are still not possible there. If he manages to tell something useful, I'll definitely give an update.

REPLY

I also wanted to tell you all that I'm really happy I came across this forum some weeks ago. Knowing that I was not alone with my problems really helped me to cope with them. So truly thank you 🙂

REPLY
@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

Thank you for sharing this with us!

What made me think was the part about Tourette's syndrome. I started reading after it and realized that when I was a child, I kept having these "habits" caused by "stress", which were exactly described in one of the articles I cannot link here.
I had nose twitching for some time, and when it stopped, I started grimacing on my forehead (translate sais frowning, but not sure if this is the right expression). I was like 12 then, and I clearly remember how creepy I felt in the classroom, but I couldn't do anything with that. It came back again some time after it'd stopped but didn't last long (some month altogether). I hope I got rid of them for good.

Another remark which might be connected. Now it's pretty cold in the flat, and sitting all day doesn't help. I'm sometimes even shaking. And when it starts, I feel my muscles contracted, and it makes SOB even worse. When I get some warmth, taking a deep breath gets much much easier.

REPLY
@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
@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
@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.

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@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.

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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.

Liked by nick43, abidaisl

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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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