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.

Gabriel and everyone, thanks for describing symptoms and remedies. I'm wondering how people are doing as I write this a year and a half after the last post in the thread, by Tonya. My situation is like Gabriels's: continuous attempts at yawns, with maybe every third one successfully satisfying the need. I'll wake up at night to pass water and lie in bed afterward trying to yawn! (We can talk about my enlarged prostate and urination schedule some other time. 😑 😁) I'm going to look into the Buteyko method, but I'd love to discover the cause. Oh, and I have the light dizzy spells, too. Like Gabriel, I'm healthy and not too stressed (all things considered, given events while I'm writing this). The allergy hypothesis does not check out for reasons others have cited. Blood pressure and oxygen are good. I'm perplexed! And practically gasping.

@gabrielm
@tonyagregg
@merpreb
@rwinney

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@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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Felicity, regardless of whether we resolve this need to yawn, I thank you in advance for refusing to accept the diagnosis of stress for any condition doctors cannot identify. For years, Crohn's disease ate away at my mother's intestines because doctors had not heard of it. They said it was in her head, as they tell all women for most problems, it seems. Good luck in your work and this mysterious malady.
@felicityr

REPLY
@jpgillam

Gabriel and everyone, thanks for describing symptoms and remedies. I'm wondering how people are doing as I write this a year and a half after the last post in the thread, by Tonya. My situation is like Gabriels's: continuous attempts at yawns, with maybe every third one successfully satisfying the need. I'll wake up at night to pass water and lie in bed afterward trying to yawn! (We can talk about my enlarged prostate and urination schedule some other time. 😑 😁) I'm going to look into the Buteyko method, but I'd love to discover the cause. Oh, and I have the light dizzy spells, too. Like Gabriel, I'm healthy and not too stressed (all things considered, given events while I'm writing this). The allergy hypothesis does not check out for reasons others have cited. Blood pressure and oxygen are good. I'm perplexed! And practically gasping.

@gabrielm
@tonyagregg
@merpreb
@rwinney

Jump to this post

Hi @jpgillam, this thread is very active and people post at least weekly. I'm doing about the same- breathing is not normal, but it's manageable. I still deal with the air hunger, but it's not severe. It's at least tolerable. I'm able to do some light to moderate exercises and do everything pretty normal. I continue to utilize some Buteyko exercises which keeps it under control. I haven't found a cause as of yet, but it might have to do with GERD and/or sinus issues. But still at a loss myself. But at least I am managing it and can live somewhat normal.

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@merpreb

@alexis08- Welcome to Mayo Clinic Connect. You do very well in writing English! Oh, I use to ride! Have you seen a GI doctor for GERD? This is also a very common causing problem. You do not have to be overweight to have this. I would also suggest that you have breathing tests to figure out if t his might be exercise-induced asthma.

https://www.mayoclinic.org/diseases-conditions/exercise-induced-asthma/symptoms-causes/syc-20372300

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Thanks! I haven't seen a doctor for GERD, but my housedoctor told me to try medicine for my stomach, but it didn't help. I have done a breathing test (spirometer, not sure if its the same name in English) and the results were excellent. So in my case I think this might be caused by a few things together: by back (bad working positions at home), some kind of stress/anxiety that I haven't really found the cause for yet (maybe the whole covid situation and not being able to live as usual) and my riding accident which might have lead to me not breathing properly.

But it's just specualtions and im trying to map things that happen around when this is triggered. Yesterday I had no problems at all but they started a bit this morning when I travelled to my office (I usually work from home). Sometimes I might stop it in time if I focus on breathing right but other times I cant stop it. It's frustrating.

Have a nice day

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@kalebmatthew445

Hello well I have had a very mysterious turn of events ITS GONE? Ever since last night I’ve been breathing normally and been just fine now I’m even more confused as to what exactly is happening to me idk but for now I’m thanking god and counting my blessings I feel amazing right now and I hope I stay this way I will keep you all updated!

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That is how it is for me - I am so tired of it!

Started when I was around 15, I would be falling asleep and then suddenly jolt awake, sit up and gasping for air. Sort of like my body just forgot to breathe. It would come and go, not much pattern to it. Usually at night. It’s definitely worse when laying down, not quite as bad when sitting up, better when standing and able to brace myself.

On bad days, it’s constant. I feel like I can’t get enough air, I try to force a yawn, take deep breaths, it’s always *just* out of reach. It’ll last about 6-10 minutes of not being able to catch my breath, then it’ll suddenly happen. Sometimes a big yawn, sometimes just a breath, sometimes it’s like I hold my breath for a second at the end of inhaling. And I’ll be ok for a few seconds, then it starts all over again. When it goes on for a while (like it’s been 5+ minutes and I’m restrained in the car), I have some akathisia. Sometimes, it feels like I have too much air in my lungs; sometimes, not enough.

And eventually, I’ll wake up in the morning and I’m fine. For months, sometimes. Until suddenly, I’m not anymore.

It wears me out to be breathing so deeply all day long, and nights are worse. This last time, I started taking ambien at night. Doesn’t do anything for my breathing, but it usually knocks me out enough that I can sleep. Otherwise, I’m up all night.

I’ve seen cardiology, pulmonology, allergy, otolaryngology, urgent care, primary care, emergency room... nothing. Pulmonary function test, O2 says, EKG, echocardiogram, blood work...all normal. Sleep study showed minor apnea, but I lost weight and that stopped.

I’ve tried inhalers, allergy meds (I do have some allergies, and I’ve noticed when it’s bad at night, my nasal passages feel very swollen), benzodiazepines. Emergency room said it was anxiety/panic, except it happens when I’m feeling fine otherwise. Also? I am a psychologist. These weeks-long episodes absolutely do *not* meet criteria for panic attacks or anxiety. But I tried everything, including the benzos. Nothing.

I see a lot of suggestions. The one that fits the most symptoms is silent reflux - I do have a chronic “cough,” feel like there is a lot of mucous in my throat (I don’t actually cough it up), clear my throat often, have post nasal drip...But I have lost weight, and I wasn’t overweight when started when I was a teen.

I’m in my 40s now, I’d love some answers. Any recommendations on where to start?

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Did your Pulmonary Doctor do a CT Scan - mine showed mild bronchiestatis and I am now seeing an amazing bronchiestasis dr who really want to help me

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@gaylesunflower1

Did your Pulmonary Doctor do a CT Scan - mine showed mild bronchiestatis and I am now seeing an amazing bronchiestasis dr who really want to help me

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CT of lungs? I don’t think so. About 15 years ago, I decided I was going to figure this out, and kept pursuing it. That’s when I did the pulmonary function tests, along with most of the other stuff. Pulmonologist said it was allergies.

Problem is that now, I have a better job...with worse insurance. And CTs are expensive. 😔

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@anrw2018

CT of lungs? I don’t think so. About 15 years ago, I decided I was going to figure this out, and kept pursuing it. That’s when I did the pulmonary function tests, along with most of the other stuff. Pulmonologist said it was allergies.

Problem is that now, I have a better job...with worse insurance. And CTs are expensive. 😔

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My pulmonary had me see an allergist who tested me for allergies - test was so much fun - stuck me with 33 needles and was told I have no allergies. I'm like you - going to keep pursuing till I get an answer to why my shortness of breath and cough and a maintenance plan. Keep pursuing - we all need to be proactive about our health

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@anrw2018

That is how it is for me - I am so tired of it!

Started when I was around 15, I would be falling asleep and then suddenly jolt awake, sit up and gasping for air. Sort of like my body just forgot to breathe. It would come and go, not much pattern to it. Usually at night. It’s definitely worse when laying down, not quite as bad when sitting up, better when standing and able to brace myself.

On bad days, it’s constant. I feel like I can’t get enough air, I try to force a yawn, take deep breaths, it’s always *just* out of reach. It’ll last about 6-10 minutes of not being able to catch my breath, then it’ll suddenly happen. Sometimes a big yawn, sometimes just a breath, sometimes it’s like I hold my breath for a second at the end of inhaling. And I’ll be ok for a few seconds, then it starts all over again. When it goes on for a while (like it’s been 5+ minutes and I’m restrained in the car), I have some akathisia. Sometimes, it feels like I have too much air in my lungs; sometimes, not enough.

And eventually, I’ll wake up in the morning and I’m fine. For months, sometimes. Until suddenly, I’m not anymore.

It wears me out to be breathing so deeply all day long, and nights are worse. This last time, I started taking ambien at night. Doesn’t do anything for my breathing, but it usually knocks me out enough that I can sleep. Otherwise, I’m up all night.

I’ve seen cardiology, pulmonology, allergy, otolaryngology, urgent care, primary care, emergency room... nothing. Pulmonary function test, O2 says, EKG, echocardiogram, blood work...all normal. Sleep study showed minor apnea, but I lost weight and that stopped.

I’ve tried inhalers, allergy meds (I do have some allergies, and I’ve noticed when it’s bad at night, my nasal passages feel very swollen), benzodiazepines. Emergency room said it was anxiety/panic, except it happens when I’m feeling fine otherwise. Also? I am a psychologist. These weeks-long episodes absolutely do *not* meet criteria for panic attacks or anxiety. But I tried everything, including the benzos. Nothing.

I see a lot of suggestions. The one that fits the most symptoms is silent reflux - I do have a chronic “cough,” feel like there is a lot of mucous in my throat (I don’t actually cough it up), clear my throat often, have post nasal drip...But I have lost weight, and I wasn’t overweight when started when I was a teen.

I’m in my 40s now, I’d love some answers. Any recommendations on where to start?

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@anrw2018- I suggest that you see a Gastroenterologist for decisions concerning your stomach. Make sure that your tests are from specialists. II would also make sure that you have a CT scan of your lungs. There are so many reasons for SOB it's really a hit or miss for early diagnoses.

You might not be aware of inner stress if you are very active and aren't paying attention to your breathing. Do you also have restless leg syndrome with akathisia?

Do you a breathing machine for your apnea?

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@merpreb

@anrw2018- I suggest that you see a Gastroenterologist for decisions concerning your stomach. Make sure that your tests are from specialists. II would also make sure that you have a CT scan of your lungs. There are so many reasons for SOB it's really a hit or miss for early diagnoses.

You might not be aware of inner stress if you are very active and aren't paying attention to your breathing. Do you also have restless leg syndrome with akathisia?

Do you a breathing machine for your apnea?

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I’ve seen multiple specialists, but GI is not one of them. I have pursued this several times over the last 30-some years, with no luck. They have honestly just given me medications to see if it will help, which I don’t like doing.

I had a cpap at one point, but was unable to use it because it made my breathing worse. I couldn’t get enough air when I was wearing it. I then lost about 50+ pounds, and no long had apnea.

No RLS with the akathisia. It’s more like I have to get up and move. I have this when I’m up and moving, too, it just is easier for me to catch my breath when I’m standing. When it’s not happening (like today, I’m fine), I can think about it and talk about it, and still having no symptoms.

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