Newbie Tired, Frustrated and Want to Give Up Before Even Starting

[ChicagoGranny]

Julie, don't whine about somebody whining.

[defy]

For a forum that is supposed to be helpful and has pinned posts about the importance of a support team when starting cpap therapy, you're being incredibly rude and unsupportive.

I thought the whole point was to have somewhere to be able to talk about my experience and struggles and ask questions. Instead my questions get ignored and my experiences invalidated.

If you have nothing helpful to say, close the thread and move on with your life, Julie. What do you get out being mean to someone who's struggling with starting this? Maybe you're the one that needs to grow up.

[Julie]

There's a time and place for going on and on about how you feel - and most definitely to get sympathy, understanding, etc, but you seem to be determined to feel bad about something lifesaving that the rest of us have decided to tackle, manage and get on with, especially considering you spend more time on the former and so little on how you're determined to make it work for you. We get it – that you so don't want to do this, but where's the other part that says you're going to try hard, harder, and leave the negativity aside? You seem to want validation to fail, rather than not, but we've all 'been there' and managed to succeed more so than not. Do you really want to be told to look at the positive and overcome the negative - when I am pretty sure you are an adult but with no grit at all. Don't want to influence other newbies, do you? We will help, but you have to do your part too.

Or else get hold of a therapist and get past the 'don't wanna do this' to where you can say "look what I did", I'm a winner"!

[chunkyfrog]

Starting out can be a struggle for everyone.
The only way to get through a challenge is to put one foot in front of the other.
"Wine" is for the celebration after you make it.
We scold ourselves for our own past whining--and hate to see someone fail
because their needle gets stuck on the endless whine.
I only hate the whine--not the whiner.
Don't take it personal--reach down and find your own strength.

[ozij]

I don't know if I'm looking for advice here, or just support or empathy or what. I guess I just wanted to vent. I don't have anyone to talk to.

Not having anyone to talk to is very difficult.

I thought the whole point was to have somewhere to be able to talk about my experience and struggles and ask questions. Instead my questions get ignored and my experiences invalidated.

Since you actually don't know what you're looking for, maybe it would help if you were to make a list of all your questions that you hope we could answer.
Because obviously nobody can really answer questions like:"I keep wondering if it's even worth it. What if it doesn't even help? " Those of course are not real questions.
You're facing something new that you've never faced before - the need to sleep with a CPAP. It means a change. And the change seems to fill you with anxiety.

Look at the dates the people who interacted with you since you joined the forum.
We are here because:

• We had a rough time when we started this therapy
• We were helped by other members of this forum
• We felt a need to help others
• That's why we're still here

You've been given advice by some whose experience with you DME was bad

Ask your insurance company for a list of other DMEs in your network. Change.

That DME is usually called 'Crapria' here...

You've been treated with empathy by zonker

i know this is frustrating. we all start out as newbies. and frankly, it's not easy to do. but if you give it time and patience, you can do this. it's VERY important to your health.

and by Ms Emerita

It's hard enough to deal with frustrations when you're feeling great; when you're sleep-deprived, it's just miserable.

But hang in there.

People - myself included - have shared information about handling masks, dealing with stuffed noses, etc.

For a forum that is supposed to be helpful and has pinned posts about the importance of a support team when starting cpap therapy, you're being incredibly rude and unsupportive.

There's another message pinned on top of the forum, the very first message:Sticky: Newbies PLEASE READ BEFORE POSTING

Do you want help getting your therapy to work better? If you do, please read and follow the instructions.
Do you want us to confirm you're having a rough time? We do.
Do you want us to confirm nothing helps? We won't
Do you want to express your need to defy whatever life throws at you? Go ahead.
Just remember: Human being got the moon by learning about gravity, and energy, and how oxygen keeps people alive - and host of other things. They didn't get there by simply saying "I'll defy gravity, so there!!!"

None of us can promise you the therapy will work for you.
Is it tough? Yes, it is for many of us.
Can the difficulties be overcome by many people? Yes they can.
Can you overcome the difficulties? We don't know.
Is needing CPAP the worst thing that has ever happened in the lives of those of us trying to help you? No.
Are you feeling like that's the worst thing that has ever happened in your alread difficult life?
Because if you are, Chicago Granny said it perfectly:

Turn your resentment into thanks that there is something to treat our condition.

You seem to be approaching the issues in such a way that you will be successful soon.

Notice, she said OUR condition.
Collectively, we've learned a lot about living with sleep apnea and its therapy.
We'd love to use our experience to help you get to a good place on that in your own life.

[defy]

There's a time and place for going on and on about how you feel - and most definitely to get sympathy, understanding, etc, but you seem to be determined to feel bad about something lifesaving that the rest of us have decided to tackle, manage and get on with, especially considering you spend more time on the former and so little on how you're determined to make it work for you. We get it – that you so don't want to do this, but where's the other part that says you're going to try hard, harder, and leave the negativity aside? You seem to want validation to fail, rather than not, but we've all 'been there' and managed to succeed more so than not. Do you really want to be told to look at the positive and overcome the negative - when I am pretty sure you are an adult but with no grit at all. Don't want to influence other newbies, do you? We will help, but you have to do your part too.

Or else get hold of a therapist and get past the 'don't wanna do this' to where you can say "look what I did", I'm a winner"!

I don't know where you're getting that I'm determined to fail, other than the title of my thread. And that was because I was frustrated and agitated by the back and forth with Apria and my insurance company. If I'd been financially able, I would've said to hell with Apria and bought the mask I wanted out of pocket, but I didn't have the money to do that and was being given the run around for months.

I keep trying to sleep with the cpap every night. And then I come here explaining my experience and my struggle, assuming some of you might have some insight on why this is happening or tips or something. I had questions and I was asking for advice. Maybe my tone is negative but I'm still freaking trying; yeah I'm having a hard time accepting this and for your information I AM working on it with my therapist, but that's a process that takes time too. You don't know me or my life or anything I've been through. If you care so much about influencing other newbies, maybe you should check your attitude. Telling someone to shut up and quit whining isn't going to help anyone and will just discourage people from asking for help.

[defy]

There's another message pinned on top of the forum, the very first message:Sticky: Newbies PLEASE READ BEFORE POSTING

I read that post, and reread it a dozen times or so before posting.

I know things like 'is it worth it?' etc aren't real questions and I never expected anyone to answer them. I was just expressing where I was at at the time of writing. But then I tried asking things like "are cpap disinfectant/cleaning wipes safe to use or does the mask really need to be washed with mild soap every day?" and asking about if those cloth mask liner type things would help with some of the weird issues I was having, but all of that got completely derailed by replies being unhelpful or just rude.

[Pugsy]

are cpap disinfectant/cleaning wipes safe to use

Yes...safe to use but expensive and there are other alternatives that are less expensive if you want to use them that are just as safe to use.

does the mask really need to be washed with mild soap every day?"

Depends on what mask is being used and facial oil accumulation. I can't remember the last time I washed my mask...even the P10 nasal pillow mask.

But in general, daily washing is probably over kill...again depending on your own skin and oils and mask used.

asking about if those cloth mask liner type things would help with some of the weird issues

Have no idea if a mask liner would help with "weird" issues because we don't know that you mean by "weird".
Mask liners can soften the noise of a mask leak so that it is less annoying and liners can absorb some facial oils or sweat.
They won't do much to help with large mask movement leaking though.

I don't mean to be rude but all this cpap stuff questions is going to come with a disclaimer.....like "it depends"...and it depends because there are so many variables that we have going on and that makes "absolute" answers hard to come by.
And even if I was using the exact same mask you are using that doesn't mean that my experience will mirror yours.

[ozij]

There's another message pinned on top of the forum, the very first message:Sticky: Newbies PLEASE READ BEFORE POSTING

I read that post, and reread it a dozen times or so before posting.

Now that you have a machine, and have started using it, a reminder from that topmost post:

3...Hopefully you will have a machine that offers full data an easily available software (free) to use if you are wanting to know how you are doing or if you are having a problem.
See here for information on the software available.

OSCAR https://www.sleepfiles.com/OSCAR/
OSCAR_Installation
OSCAR_-_The_Guide

If you don't have an SD card in your machine, buy one, insert it in the slot, keep it there all night so the machine can record details on to it. Details will be lost if the SD card is not in the slot during usage. And you may need to get an SD card card reader for you computer.
That post contains further instructions about posting data, etc.

[defy]

are cpap disinfectant/cleaning wipes safe to use

Yes...safe to use but expensive and there are other alternatives that are less expensive if you want to use them that are just as safe to use.

What kind of less expensive options are there? I can think of generic alcohol wipes, or stuff like lysol wipes. I'm iffy on using lysol wipes on something going against my face, I assume they'd be too harsh.

does the mask really need to be washed with mild soap every day?"

Depends on what mask is being used and facial oil accumulation. I can't remember the last time I washed my mask...even the P10 nasal pillow mask.

But in general, daily washing is probably over kill...again depending on your own skin and oils and mask used.

That makes sense. My skin is on the dryer side; the mask looked fine but manual had said to wash daily. But I thought that seemed excessive, but I wasn't sure.

asking about if those cloth mask liner type things would help with some of the weird issues

Have no idea if a mask liner would help with "weird" issues because we don't know that you mean by "weird".
Mask liners can soften the noise of a mask leak so that it is less annoying and liners can absorb some facial oils or sweat.
They won't do much to help with large mask movement leaking though.

Sorry, I had mentioned in a previous post and was trying avoid typing it all over again. And I guess it's not really weird issues. It's just I'd been having trouble with mask leaks coming out around-ish the tip of my nose. I've had to constantly fiddle with the mask and adjust it under my nose almost to get it to "lay" just right so that it seals, but any tiny movement might break the seal and air will start leaking out the tip of my nose (and towards my eyes which I'm trying to avoid cause I already have really dry eyes). I don't know if my nose is like a tiny bit too small or something, or if it's just always this fiddly with this mask. It doesn't make any nose or anything really, I just can feel the air blowing out of it.

The other issue was that the mask has started to feel really uncomfortable against my skin. I had no problem with it at first, but now it's getting uncomfortable. I'm not sure how to describe it. It's like I can feel it clinging to my skin and it also gets kind of clammy feeling. Maybe it's caused my skin to dry out more so it's started getting more sensitive to the mask?


Also, I'm still having a hard time with waking up with my mouth getting full of air and my cheeks ballooning out. I've been trying the 'pressing my tongue against the roof of my mouth' thing. I try to force the air out of my mouth, press my tongue up and just breathe through my nose, but it's like I'm fighting against the pressure or something. Like even my nose and sinuses feel like they're too full of air. And it's really hard to keep my lips closed, if they part even a little bit my whole mouth just fills up with air again. I end up pulling the mask off cause I feel like I can't breathe.

[Pugsy]

Way past my bedtime so gotta be short and sweet which is hard for me to do.

Search the forum for "chipmunk cheeks" ....common complaint and the tongue in the roof of the mouth trick doesn't always work so great for some people.
You are using a full face mask???? If so, quit fighting it and just breathe through your mouth. There's no need to block the airway with the tongue when using a full face mask.

As for mask issues and the weird stuff....maybe you have the wrong mask for your face.
Masks are expensive so pretty pricey experiment.

What masks have you tried and why didn't you like it?

[Miss Emerita]

Zonker mentioned something earlier in this thread that I'd like to emphasize. You could probably speed up your process of adaptation by using the machine during the day or evening. Ideally, you'd set it up outside your bedroom and use it while you read, watch TV, use your devices, or do something else sedentary and mildly distracting. This has the effect of getting your brain to calm down about the weird experience.

It's a little heretical, but because you're feeling so frustrated with your night-time experience, I'd suggest hitting the pause button on that for maybe a week while you do your day/evening adaptation sessions -- at least one every day.

About using your tongue -- it can take some practice during the day to get this grooved in, but many people have found they can do it. Here's some more detail: Put the tip of your tongue behind your upper front teeth. Then position the main part of your tongue up against your upper palate. Finally, give a little suck or swallow to create a bit of suction. You should now be able to open your mouth while breathing entirely through your nose.

Although I now do that automatically during the night, a tiny bit of air does sometimes slip into my mouth. It would make my lips open if I didn't use tape on them. That's something you might want to consider. Or, as Pugsy says, if you're using a FFM, you can just open your mouth.

[Jimmy Lotus]

defy, what would really help us help you is if you could please post some OSCAR data.
I understand the resentment, I suppose, about using a medical device for the rest of your life, but if you start getting better or even the best sleep you can easily remember, ain't that worth it?
I know for a pure-D fact that it has been for me.

[defy]

Search the forum for "chipmunk cheeks" ....common complaint and the tongue in the roof of the mouth trick doesn't always work so great for some people.
You are using a full face mask???? If so, quit fighting it and just breathe through your mouth. There's no need to block the airway with the tongue when using a full face mask.

You're probably right. I mean the whole reason I wanted a full face mask was to be able to breathe through my mouth. I wasn't expecting the air to fill up my mouth and puff out my cheeks like this. I'll try searching the forum. I didn't realize people actually called it that so I didn't think to try searching that term. (If there was a 'face palm' smiley it'd be perfect for right now.)

As for mask issues and the weird stuff....maybe you have the wrong mask for your face.
Masks are expensive so pretty pricey experiment.

What masks have you tried and why didn't you like it?

The Aitfit F30 is the only mask I've tried. The mask-choosing thing has been the biggest frustration of all of this. After my at home sleep-study, the doctor said I had severe sleep apnea and recommended me for cpap therapy. When I agreed the doctor told me they'd send the referral to apria, and to research mask options online and choose what kind I want and that Apria would ask me what mask I want. I never got to go anywhere in person and try on different masks like every article ever online said would happen. Instead I had to eventually call Apria because they never called me, the rep told me the order already has the Airfit N20 nasal mask, but she claimed she could edit it and change it. Weeks go by and I never hear from them again. I call them again, and this time a different rep says my order was cancelled because the rep's aren't allowed to change what's on the order, she told me to just order the way it was and then call them once I got my machine to ask for a new mask. I FINALLY get my cpap machine and the nasal mask. I call Apria multiple times to ask for a different mask- the first guy wouldn't order it without knowing what size to order even though I told him I have no freaking idea what size I need I never done this and never had a mask fit or anything, then the next guy I talk to was going to order it but then told me he CAN'T order it because the order HAS to come from my doctor. I contacted my doctor and was told to schedule a mask fit appointment but the soonest appointment was like 6 weeks out, well past Apria's stupid 30 day window window to get a new mask. I went to mask fit appointment, and tried the Evora full face mask and the F30; he didn't have the F30i to try. He put in the order for the F30i for me, with notes explaining how it was literally impossible for me to get in any sooner. Apria still cancelled the order and when I call them I got this really rude agressive woman who was basically 'lol sucks, too bad' because it was past 30 days, even though I tried arguing that no one would let me order a mask and I couldn't get into my talk to my doctor any sooner than this (I tried calling every week to check if there was any cancellations and stuff). They wouldn't send me a mask cause it was past 30 days, and she told my my insurance wouldn't pay for a new mask and headgear until after the end of December pretty much.

So. Yeah. That's how all of that went down. I never got to try on different masks or anything. I was basically told to pick one and hope it works out but then I didn't even get to pick anything at all. I only have the F30 because my respiratory therapist sent me a new one from their own stock and stuff.

There was a little sizing-card thing that came with my mask when I got it. I did check it when I got it cause I was curious, and the width of my nose was definitely right in the middle of the medium size range. And for the most part it feels like it fits okay, it's just the bit right under the tip of my nose that feels fiddly and air escapes out sometimes.

Zonker mentioned something earlier in this thread that I'd like to emphasize. You could probably speed up your process of adaptation by using the machine during the day or evening. Ideally, you'd set it up outside your bedroom and use it while you read, watch TV, use your devices, or do something else sedentary and mildly distracting. This has the effect of getting your brain to calm down about the weird experience.

It's a little heretical, but because you're feeling so frustrated with your night-time experience, I'd suggest hitting the pause button on that for maybe a week while you do your day/evening adaptation sessions -- at least one every day.

I'll try to start doing that Friday and through the weekend. My desk and computer are in my room so it's not too hard, I just need to move it a bit closer to my desk. But I need to move some things around and clean up a bit cause it's gotten a bit Chaotic-ADHD-disorganized at the moment.

About using your tongue -- it can take some practice during the day to get this grooved in, but many people have found they can do it. Here's some more detail: Put the tip of your tongue behind your upper front teeth. Then position the main part of your tongue up against your upper palate. Finally, give a little suck or swallow to create a bit of suction. You should now be able to open your mouth while breathing entirely through your nose.

Although I now do that automatically during the night, a tiny bit of air does sometimes slip into my mouth. It would make my lips open if I didn't use tape on them. That's something you might want to consider. Or, as Pugsy says, if you're using a FFM, you can just open your mouth.

I'm a little confused since you and Pugsy both mention just breathing through my mouth. Cause when I do open my mouth to try to just mouth-breathe when this is happening, the air immediately blasts in and fills up my mouth and puffs out my cheeks. Do you guys mean I just let that happen and breathe through my mouth anyway? Or is that not supposed to happen when I mouth-breathe? Just trying to clarify cause I got confused.

But yeah I started trying to do the nose-breathe and tongue-roof thing cause it was really weird and uncomfortable having my mouth full of air and trying to breathe through that, like it starts feeling hard to breathe. But it's really hard trying to keep my mouth closed cause it just naturally falls open. (And then at the same time as trying to keep my mouth closed, I realize I'm clenching and I start trying to relax my jaw so that my TMJ doesn't flare up, but then it gets harder to keep my lips from falling open... so then I start clenching and round and round it goes lol)

defy, what would really help us help you is if you could please post some OSCAR data.
I understand the resentment, I suppose, about using a medical device for the rest of your life, but if you start getting better or even the best sleep you can easily remember, ain't that worth it?
I know for a pure-D fact that it has been for me.

I'm working on trying to figure out the OSCAR thing. I hadn't really looked into it cause I didn't realize it was that important; I didn't think I was getting into anything to technical or like messing with settings and stuff. I'm usually pretty tech savvy but I'll admit my eyes glazed over a bit while scrolling through the wiki about it. Anyway. I don't know why but I thought it came with an SD card but it apparently didn't. I found a 2 gb one laying around and I'll put it in there. (Is 2 gb enough?)

You're right. It'll be worth it eventually. I don't know why I'm having such a hard time with this.

[Lucky7]

"In addition to that, I get nasal congestion at night a lot of the time."

Hey Dude, or Dudette as the case may be. Let's try to fix THIS one simple thing, because I suspect it might help you.

Options are:

1. see an ENT and tell them what's going on
2. or....a couple hours before bed rinse your nose with a saline solution. And then follow with an intranasal steroid. The best thing I've found is Nasonex, which is now available over the counter.

https://www.amazon.com/NeilMed-100-Sinu ... B000RDZFZ0

Instructions say to use 1 salt packet. Some people do better with two which is a hypertonic saline solution (salt concentration is higher than normally found in your circulation)

BEST NEILMED Instructions I've ever seen:

https://www.youtube.com/watch?v=Br928VfiC1M

UPenn Medicine is not the place for slackers

So, your rinse first, and then use your Nasonex, or Flonase or whatever (I'd stick to those two personally)

How to do THAT correctly (yeah, there is a wrong way to spray medicine up your nose lol):

https://youtu.be/6mlUbV6m-Rs?feature=shared

Let's get your snoot unclogged. Hell, you are probably going to feel somewhat better just from that.

The rest of it? It's fixable. I didn't think I could do this either. Lots of people didn't think they could do it. Fairly common.

Except Apria, can't fix those REDACTED'ers. Find another DME is excellent advice.

Edited to add, sometimes when I'm in a hurry I use spray saline in a can, and not a NeilMed bottle:

https://www.amazon.com/Simply-Saline-Ad ... B0013UU9WK

The Neilmed is way more cost effective thou in the long run.