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Bax
@tbaxter33

Posts: 22
Joined: Aug 02, 2017

CPAP Intolerance

Posted by @tbaxter33, Tue, Feb 20 3:57pm

Over the years, I have had two separate sleep studies. Both were absolutely horrible experiences. I have insomnia anyway — since childhood — so that equipment simply made it horrible. I was freaking out. I think about 4:30 AM on the last one, they broght me some ambien, so I may have dosed a little bit between 5:00 and 5:30 AM, at which time they annoucned the study was over. Both studies said "severe sleep apnea". Of course, I don't know how they could diagnose that on about 30 minutes of sleep. Anyway, on both occasions I tried hard to use a CPAP for weeks. Those were about the worse 4 months or so of my life. Conclusion: If you want me to sleep any, I do not use the machine. If you want me to use the machine, I will get far, far less sleep than using it. I just cannot imagine how anyone can tolerate them? I have tried various masks including the little nose pillows. I find a comfortable spot and I feel air blowing in my eyes, which causes me so much anxiety. I was shamed — terribly shamed — by providers when I would tell them that I just cannot do it. Every single proivder now asks me about it and feel like they need to read me the riot act about what may happen if I don't use it. Nobody understands the situation — nor do they try. Yes, I am extremely tired many days, but less tired than trying the machine and getting so worked up about it every night. And, they wanted me to take it when I travel ?!?! Nope, not going to happen. Ever. My memories of wearing the mask — "I cannot wait to get this thing off so I can get a little bit of sleep". Frustrated as can be here.

REPLY

I understand. I have had two sleep studies and they called mine mild sleep apnea. I found that when using the masks, it prevented me from breathing as well as without it. I since found out I had multiple things in my nose blocking breathing, but even with those things fixed, I don't sleep well or long. I have a long list of discomforts that also wake me up including being a light sleeper. It seems like this is probably my life now. It certainly gets old being tired most of the time.

@baxter33, I certainly can understand your frustration. I have used a CPAP/BiPAP for about 15 years and I will not even take a short nap in the afternoon w/out wearing mine. My mother needs one, but simply can not tolerate the mask or anything on her face when trying to sleep. I have recently had my pulmonologist wanted me to have higher pressures and I began swallowing air. When I turned my pressure back down, i had my hand slapped, but it was either be a little more tired, based on their calculations, or wake up with a stomach full of air and in tremendous pain. I understand the tired for one reason or the other and it is not acceptable that you be shamed by your other providers. When I was in business, we would explain to our attorneys that they were there to explain the law, but we had to run a business and if we got ourselves in a bit of a spot, they were there to minimize the damage. I feel the same way about my Docs. I understand what you would prefer I do, but it is not going to happen and I am paying you to keep me as healthy as possible without me walking or running 3 miles a day. Would it be fair to assume that you initially had a sleep study because of loud snoring? If that was the reason, have you tried some of the other methods that help some people who have that problem? There is a surgery that can be done to help with the apneas, but I think it is only recommended for a small percentage of people. Hope you can find some type of alternative.

I have had a few sleep studies done and was also diagnosed with severe sleep apnea. Like many other people, I cannot get use to wearing the CPAP mask. I have tried several different masks and I cannot get use to any of them.

Thanks much for the reply Gary. Yes, initially it was because of loud snoring. The first sleep study itself was not nearly as bad as the second one it seemed, so I think they did get some usable data from it. Again, the term was "severe" to describe the degree of the condition. That first one though was the one that tainted me due to the follow up visits. I tried so hard to tell the female provider that I simply could not sleep with any type of mask about my face or nose. You are right – I did get the feeling of smothering as well with the mask on. After a few weeks for trying it, I was a literal mess. The lack of sleep and associated anxiety (fed on each other, I think) was taking me down. Yet, the provider was harshly telling me that nobody else has this problem and I just had to do some things I didn't like. I tried to tell her that it was not that I didn't like it, I could not use it. She did not buy that one moment. I think on the second study, I was so uptight knowing what had happened before that it was a total failure. When I could not tolerate the machine again, I gave up after about two follow up visits with the different doc on this one. He said either use the machine or lose weight. So, knowing that I would fail at both of those, I gave up. That was about 4 years ago. Today, because I have been so tired, I begain to look at machines online, which sent me into a terrible anxious state complete with sweaty hands, trembling, and fast breathing. I had to stop that quickly. No, nobody has offered any alternative to the CPAP at all. I enquired about other things several times, and the doc would not discuss them. He simply said the CPAP is the gold standard and that I what I needed. So, I remain deeply shamed over not being able to do it as I must be a failure at it due to the provider's harsh lack of trying to understand (mostly that first one).

Hi, @tbaxter33 — that does sound frustrating. It's never fun to feel shamed — that hurts.

I thought you might want to meet a few other members who have quite a bit of experience with CPAPs for themselves or a loved one, like @neilc, @jimhd, @duvie, @darlia, @boredsilly, @tdrell, @oldkarl, @bernese53, @sanibelsandy and dawn_giacabazi. Thought they might have some insights on your situation with intolerance to a CPAP.

Are you finding the snoring is still a problem?

@lisalucier

Hi, @tbaxter33 — that does sound frustrating. It's never fun to feel shamed — that hurts.

I thought you might want to meet a few other members who have quite a bit of experience with CPAPs for themselves or a loved one, like @neilc, @jimhd, @duvie, @darlia, @boredsilly, @tdrell, @oldkarl, @bernese53, @sanibelsandy and dawn_giacabazi. Thought they might have some insights on your situation with intolerance to a CPAP.

Are you finding the snoring is still a problem?

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@tbaxter33 and others…..I do not have the classic sleep apnea symptoms. But the pulmonologist saw that I had “obstructive sleep apnea” when he did a bronchoscopy looking for the cause of my constant 2 year cough ( sputum specimen obtained while in my lungs grew a bacterium called Mycobacterium Avian Complex) So when I, months later was at National Jewish Health having my cough and bacterium evaluated, I was offered a sleep study there since I had not had one yet.
They do 14 a night….year round. The technician was delightful….patient and friendly….explained every detail….I could take a sleeping pill at the beginning….no problem she said. The bed was a queen sized Temperpedic mattress…superior to what I have at home. She measured me for the nose device which I started with….as well as the face mask saying that if the nose device did not work she’d switch to full face mask without having to wake me. So I began the study about 1030pm…..
Next thing I knew , I was being awakened at 6am to say I was done with the sleep study….I would need the full mask and CPAP since I had 47 apnea events/hour.
So since April 19 2017 I have had the full face mask CPAP….i think it is the company Resmed My Air…..my use is monitored via satellite to my pulmonologist and DME folks.
I can assess my report daily via email.
I am compliant with wearing it…..I am very candid….I despise wearing it with a passion….I had guidance initially from a friend who loves her….she gave me tips and encouragement….the DME Technician was very helpful …..
my motivation is that I have coronary artery disease ( 3 years ago had stents put in for a coronary artery 99% blocked) and going without Oxygen 47 times an hour is not good for my heart)
So emotionally I despise CPAP but intellectually I realize I need it.
Tdrell

@lisalucier

Hi, @tbaxter33 — that does sound frustrating. It's never fun to feel shamed — that hurts.

I thought you might want to meet a few other members who have quite a bit of experience with CPAPs for themselves or a loved one, like @neilc, @jimhd, @duvie, @darlia, @boredsilly, @tdrell, @oldkarl, @bernese53, @sanibelsandy and dawn_giacabazi. Thought they might have some insights on your situation with intolerance to a CPAP.

Are you finding the snoring is still a problem?

Jump to this post

Yes, snoring is still a problem. I should probably not have posted here since I don't think folks generally understand the issue. It is not an issue of doing something I don't like. I do plenty of those things. I cannot sleep with the device on — period — and get so worked up with anxiety that it adversely affects my entire life. Again, if the providers want me to get a little sleep, I cannot wear the device. Period. It is as simple as that. After the last experience with the sleep study, I have vowed to never do that again. When I was younger, nobody ever heard of "sleep apnea" and everyone did fine. Is this just a new condition that has come about in the last 20 years or so?

I don't know if the term "sleep apnea" was used 20 years ago but I know that recent studies show that sleep apnea can lead to serious problems….heart issues…stroke….dementia, etc. I had an episode of Transient Global Amnesia in November 2016..it was horrible. I saw a neurologist at Mayo who suggested a sleep study because I was having some memory issues. I have mild sleep apnea and was given a CPAP machine in May 2017. I hated it….I struggled with the mask….it felt like someone was trying to smother me. I had to figure out a way to deal with my anxiety whenever I put the mask on. I started to wear it a few minutes at a time during the day….just walking around the house. After 6 months, I can wear the mask at night and do sleep better with it. I still struggle at times. I worry though about untreated sleep apnea. @tbaxter33, do you have health issues that could get worse with the apnea? I am so sorry using a CPAP has been impossible for you.

Wishing you the best,

Bernese53

@tbaxter33

Thanks much for the reply Gary. Yes, initially it was because of loud snoring. The first sleep study itself was not nearly as bad as the second one it seemed, so I think they did get some usable data from it. Again, the term was "severe" to describe the degree of the condition. That first one though was the one that tainted me due to the follow up visits. I tried so hard to tell the female provider that I simply could not sleep with any type of mask about my face or nose. You are right – I did get the feeling of smothering as well with the mask on. After a few weeks for trying it, I was a literal mess. The lack of sleep and associated anxiety (fed on each other, I think) was taking me down. Yet, the provider was harshly telling me that nobody else has this problem and I just had to do some things I didn't like. I tried to tell her that it was not that I didn't like it, I could not use it. She did not buy that one moment. I think on the second study, I was so uptight knowing what had happened before that it was a total failure. When I could not tolerate the machine again, I gave up after about two follow up visits with the different doc on this one. He said either use the machine or lose weight. So, knowing that I would fail at both of those, I gave up. That was about 4 years ago. Today, because I have been so tired, I begain to look at machines online, which sent me into a terrible anxious state complete with sweaty hands, trembling, and fast breathing. I had to stop that quickly. No, nobody has offered any alternative to the CPAP at all. I enquired about other things several times, and the doc would not discuss them. He simply said the CPAP is the gold standard and that I what I needed. So, I remain deeply shamed over not being able to do it as I must be a failure at it due to the provider's harsh lack of trying to understand (mostly that first one).

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Good Day Bax~ I read through your posts and I want to ask you… Has anyone taken the time to watch you put on the mask and make sure that you are positioning it properly and/or make sure that you are wearing the proper head gear size and/or size of the mask or cushions? I am using now the cushions. MED size and also this is after many changes. I started out with the full face mask and regular hose. Didn't work. I switched to the Amara View which is considered full face mask but fits under your nose.Regular hose. That wasn't good because I have Gastroparesis and GERD so sometimes I have issues where I have regurgitation and if that happens while I am sleeping and it comes up into my throat, it can choke or suffocate me, especially with a full mouth mask covering my mouth because as you are asleep and if you aspirate which means to breath in after vomiting. ..(sorry for the graphic) you will then not be able to breathe!. So I convinced them that I needed to switch to the Respironics cushion. There is also what is called the 'pillows' which actually fit inside of each nostril, but I asked the Sleep Central specialist about this and she said that the cushion fits under comfortably your nose, so I opted for that one. It has been a couple of months now and I seem to do okay with it. One downfall is that sometimes I wake up with lots of burping because lots of air has filled my stomach. I think this is due to still having some snoring but not entirely certain. It's all a science. It depends on how you position the head gear just right or not. It depends on the pressure for the beginning when you first put it on and how long it is set up to be on that pressure before it switches to a higher one.. depending on how long it takes you to fall asleep. I wait until I am really ready to go to sleep before I get into bed. If it is midnight or if it is 4 am.. I wait until I am absolutely ready to fall asleep before I go to bed and put it on. That way I am so tired that I fall asleep within a few minutes tops. I used to have the beginning pressure set at 4 and then set to not change to 8 for 20 minutes. Well, that was too long inbetween the time I started and the time I fell asleep because I fall asleep quickly and need to have that pressure more IMMEDIATE. So I changed that ramp time by turning off the ramp and that way it starts out at the 8 immediately when I start so I have enough pressure for falling sleep. The great thing about the cushion is that the air is only going into your nostrils and as long as you have the little cushion positioned just right, you don't feel smothered or any problem with it, in fact it is barely noticeable. I've also switched to the HEATED HOSE.. this is an improvement too.. I do wake up some nights after only being asleep for about 2-3 hours and yank it off… but I think this is on the nights when I am having more gastro distress and I don't really consciencously think about it. I have nights when I take it off because I am just uncomfortable but not due to the CPAP itself and I just get lazy to put it back on. Some nights though I have worn it for 6-7 hours so I know that I CAN do it.. LOL.
My advice would be to ask questions of your DME, in person if you can and tell them exactly the obstacles that you are facing so that they can specifically address them. Or better yet… call the company that manufactures the CPAP device that you are using. For me it is Respironics. I called them once to ask for help to sync my device with my tablet or phone to get the updates daily on my usage and how many times I have apneas. It can be connected to the app so that you can keep track daily. But I was having trouble with it connecting. So that is the best resource probably because they actually make the equipment and they know it even better than the DME who has to LEARN how to use the equipment themselves and then TEACH you how to use it. They don't always know. They fake it.. LOL. I know for a fact because I've had this happen to me. Some reps or nurses will say, Oh, I am not so familiar with that yet and I need to find out.. just let me check.
As for using it or not using it and having that feeling of being shamed into using it. I don't believe that any Dr. or nurse or DME provider is trying to do that.. they just think that if they tell you why you benefit from using it, then the benefits will outweigh the discouragement you are having about wearing it at all. I have to say though that it is up to you and it is kind of comparable to using a cane or walker. I have to use help to stand and walk sometimes due to Peripheral Neuropathy and if I don't because I am thinking that it is a bother or takes extra effort to use a cane or rollator, then the consequences could be that I would fall and then have an injury. Another example would be that I have to eat a certain way because of Gastro diseases and the consequences if I do not is that I will have pain, discomfort, regurgitation and bowel/gastro issues too that are not pleasant. Another one is that I have to make myself excersize regularily for Fibromyalgia, Osteoarthritis and neuropathy for the benefit of helping to COPE with these diseases.. but in doing this, I have to suck it up and make myself go to the gym to do the excersize bike and elliptical like 3-4 x a week, even when I have pain or I am so extremely fatigued. Because why?? Because the inconvenience of it all as much as I don't like it or don't want to do it is more positive than letting the diseases take over and WIN!. I refuse to not try. I do also get the constant direction from my MANY specialists and dietitians to do this and don't do that and just yesterday, my neurologist for the sleep apnea wrote me after reviewing my numbers to say, I need to increase my average of the use of wearing the CPAP because it is just around 4 hours average. He is in effect saying, DO this because it will benefit you, NOT DO THIS because I say so!. So when a DR tells you to do it or else, they are not really shaming you, they are giving you the facts and then you have to make the effort. I had a late husband who had COPD and he would just refuse to wear his oxygen of which he was told to wear for sure when he was sleeping. It was for his benefit, not the doc's. Well, it was to the point where I had to tape it to him at night because he would wake up and rip it off of his face and then this would cause him to have really low oxygen level in his blood so this was affecting his heart and lungs and brain. Even knowing that this was the facts and the Dr. telling him how it affected his whole body, he chose to do it anyway. Got to the point where we just let him make the choice as even taping it to him for his benefit while sleeping didn't work. He also chose to eat the wrong food and not always take his injections of insulin that he needed for his type 2 diabetes, nor even check his sugar level like instructed to do. He eventually died from the complications of the COPD and diabetes while being treated for stage 4 gastro/esophageal cancer and receiving chemo. It wasn't the cancer that killed him because the chemo was working, … It was the COPD because his last days were spent in ICU and even while on life support his brain and heart could not get enough oxygen to support life.
I am not telling you this to put a sad note on my story, but to show that it is all the way you look at it as to how you attack the problem. Like my neurologist for the Peripheral Neuropathy says, "This is your new norm". So, embrace your new norm…take it on and do the best you can!
Just keep swimming, Just keep swimming!
Stay well!
Darlia ~

Liked by bernese53, bernese53

@lisalucier

Hi, @tbaxter33 — that does sound frustrating. It's never fun to feel shamed — that hurts.

I thought you might want to meet a few other members who have quite a bit of experience with CPAPs for themselves or a loved one, like @neilc, @jimhd, @duvie, @darlia, @boredsilly, @tdrell, @oldkarl, @bernese53, @sanibelsandy and dawn_giacabazi. Thought they might have some insights on your situation with intolerance to a CPAP.

Are you finding the snoring is still a problem?

Jump to this post

@tbaxter33

I had a full face mask with a CPAP for more than 15 years. By the time I got started with it, I was incredibly sleep deprived, so I slept for more than 12 hours a day for awhile. I thought it would be hard to get used to the mask because I have claustrophobia, but I was surprised.

But last year, I started having panic attacks after I put the mask on, and had to take it off until the panic attack subsided. Since then I had a sleep study, and they changed me from the CPAP to BIPAP, and I started using the nasal pillows, which I've found more comfortable. I think the head gear is really lame because it doesn't hold the pillows in place very well. Have you tried the BIPAP? It doesn't have pressure constantly.

I've always had a heated humidifier on my CPAP and now on the BIPAP. We live in a dry climate, so I need the humidifier. I also have learned that I can't have the temperature too high.

I'm always a strong advocate of CPAP and BIPAP. I have only moderate apnea, and I'm thin, but I knew that apnea left untreated could have a significant effect on my body.

I hope you'll find a solution.

Jim

@tbaxter33

Thanks much for the reply Gary. Yes, initially it was because of loud snoring. The first sleep study itself was not nearly as bad as the second one it seemed, so I think they did get some usable data from it. Again, the term was "severe" to describe the degree of the condition. That first one though was the one that tainted me due to the follow up visits. I tried so hard to tell the female provider that I simply could not sleep with any type of mask about my face or nose. You are right – I did get the feeling of smothering as well with the mask on. After a few weeks for trying it, I was a literal mess. The lack of sleep and associated anxiety (fed on each other, I think) was taking me down. Yet, the provider was harshly telling me that nobody else has this problem and I just had to do some things I didn't like. I tried to tell her that it was not that I didn't like it, I could not use it. She did not buy that one moment. I think on the second study, I was so uptight knowing what had happened before that it was a total failure. When I could not tolerate the machine again, I gave up after about two follow up visits with the different doc on this one. He said either use the machine or lose weight. So, knowing that I would fail at both of those, I gave up. That was about 4 years ago. Today, because I have been so tired, I begain to look at machines online, which sent me into a terrible anxious state complete with sweaty hands, trembling, and fast breathing. I had to stop that quickly. No, nobody has offered any alternative to the CPAP at all. I enquired about other things several times, and the doc would not discuss them. He simply said the CPAP is the gold standard and that I what I needed. So, I remain deeply shamed over not being able to do it as I must be a failure at it due to the provider's harsh lack of trying to understand (mostly that first one).

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I am so sorry about your late husband. I have obviously not been successful in describing my issue. CPAP is not an option – Period. I have spent much sleepless time trying. I disagree with your assessment of the docs. I was made to feel much shame and that there was something wrong with me for not trying it. Thank you all for meaning well — perhaps there is just something wrong with me. I had hoped for alternative suggestions. Trying to find a way to withdraw from the group. Apologies for bringing my issue here

Hi @tbaxter33 — I hope you won't withdraw from the group, because I think your topic of CPAP intolerance is an important one.

I have not had a sleep study, but I can completely imagine trying to sleep in a clinical setting could provoke some challenges and anxiety. I also have not had sleep apnea nor used a machine for it, but I did have a nose packed and taped after a deviated septum surgery, and I can remember barely being able to sleep at all, feeling like I was going to suffocate with having all this "stuff" in my mouth and nose area.

As you can see, you are not alone in having challenges with sleep studies and with wearing a CPAP machine. This discussion you started has so far provided practical tips trying to overcome issues with using the machine. But what about ideas for people like you for whom the machine is simply NOT an option and for whom the hospital sleep studies have been unsuccessful?

@tbaxter33, have you tried a home sleep study? Here's more info from an Mayo expert Q&A https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-diagnosing-sleep-apnea/

@lisalucier

Hi @tbaxter33 — I hope you won't withdraw from the group, because I think your topic of CPAP intolerance is an important one.

I have not had a sleep study, but I can completely imagine trying to sleep in a clinical setting could provoke some challenges and anxiety. I also have not had sleep apnea nor used a machine for it, but I did have a nose packed and taped after a deviated septum surgery, and I can remember barely being able to sleep at all, feeling like I was going to suffocate with having all this "stuff" in my mouth and nose area.

As you can see, you are not alone in having challenges with sleep studies and with wearing a CPAP machine. This discussion you started has so far provided practical tips trying to overcome issues with using the machine. But what about ideas for people like you for whom the machine is simply NOT an option and for whom the hospital sleep studies have been unsuccessful?

@tbaxter33, have you tried a home sleep study? Here's more info from an Mayo expert Q&A https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-diagnosing-sleep-apnea/

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I agree. I am in a similar situation, panicked when I did the portion of the sleep study with the mask. I want to use one, but not sure if I can. It will be helpful to hear from others who may find solutions, or not, to this problem

@lisalucier

Hi @tbaxter33 — I hope you won't withdraw from the group, because I think your topic of CPAP intolerance is an important one.

I have not had a sleep study, but I can completely imagine trying to sleep in a clinical setting could provoke some challenges and anxiety. I also have not had sleep apnea nor used a machine for it, but I did have a nose packed and taped after a deviated septum surgery, and I can remember barely being able to sleep at all, feeling like I was going to suffocate with having all this "stuff" in my mouth and nose area.

As you can see, you are not alone in having challenges with sleep studies and with wearing a CPAP machine. This discussion you started has so far provided practical tips trying to overcome issues with using the machine. But what about ideas for people like you for whom the machine is simply NOT an option and for whom the hospital sleep studies have been unsuccessful?

@tbaxter33, have you tried a home sleep study? Here's more info from an Mayo expert Q&A https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-diagnosing-sleep-apnea/

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I know many have said they have tried every mask and they probably have, but my insurance gives me a fair amount of latitude, so if something is not working, they will usually approve what my "air" company suggests. There is a new full face mask that does not rest on your forehead so you can have your glasses on if watching TV or reading and falling asleep – only way I ever get there. It has a breathable memory foam everywhere it touches your face and is the only comfortable full face mask I have ever worn. Just FYI.

@tbaxter33

Thanks much for the reply Gary. Yes, initially it was because of loud snoring. The first sleep study itself was not nearly as bad as the second one it seemed, so I think they did get some usable data from it. Again, the term was "severe" to describe the degree of the condition. That first one though was the one that tainted me due to the follow up visits. I tried so hard to tell the female provider that I simply could not sleep with any type of mask about my face or nose. You are right – I did get the feeling of smothering as well with the mask on. After a few weeks for trying it, I was a literal mess. The lack of sleep and associated anxiety (fed on each other, I think) was taking me down. Yet, the provider was harshly telling me that nobody else has this problem and I just had to do some things I didn't like. I tried to tell her that it was not that I didn't like it, I could not use it. She did not buy that one moment. I think on the second study, I was so uptight knowing what had happened before that it was a total failure. When I could not tolerate the machine again, I gave up after about two follow up visits with the different doc on this one. He said either use the machine or lose weight. So, knowing that I would fail at both of those, I gave up. That was about 4 years ago. Today, because I have been so tired, I begain to look at machines online, which sent me into a terrible anxious state complete with sweaty hands, trembling, and fast breathing. I had to stop that quickly. No, nobody has offered any alternative to the CPAP at all. I enquired about other things several times, and the doc would not discuss them. He simply said the CPAP is the gold standard and that I what I needed. So, I remain deeply shamed over not being able to do it as I must be a failure at it due to the provider's harsh lack of trying to understand (mostly that first one).

Jump to this post

@Bax, I assure you that what she told you about no one having the problem, she is terribly wrong. I know many people who struggle with a CPAP and may get used to it, or may simply put it in the closet. I know the importance for me, but I am a sound sleeper once I get there and it removes my anxiety of not resuming breathing when I stop. You know what you have to do for your body.

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