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

[defy]

Background: I've been told pretty much my entire life that I snore really loudly, but it was never addressed by my doctor or anything. It was just something family would point out. I've also been told I grind my teeth (loudly) in my sleep my whole life but again nothing was ever done about it. As an adult, my doctor mentioned sleep apnea a couple times in the past couple years, but I didn't do a sleep test until earlier this year. Back in May of this year I did a whole bunch of different tests because I was worried about my lungs/heart, because I get out of breath all the time. All of my tests came back normal, except the home sleep study where they messages me and said I have severe sleep apnea with an AHI of 33.3.

They recommended starting CPAP therapy so I agreed.

I was told I may research different mask options and choose one. So I did- I spent hours and hours for days researching and trying to figure out what would be the best fit and what would address the concerts I already have (mouth breathing, tossing and turning, etc). I was pretty sure the the resmed airfit f30i would be the best place to start.

I was told they contract with Apria. That Apria would contact me in 1-2 weeks of receiving the referral. (They never did.) What followed was weeks and weeks of missed calls, calling Apria and being told one thing, waiting to hear back and never hearing back, calling Apria again and being told something completely different. The first order was cancelled for who knows what reason. I called Apria, spoke to a rep who asked what kind of mask I wanted, and then when looking at my order said the order had a nasal mask on it (the n20 I think?) so she she would edit the order to change it to the resmed f30i and placed the order and said someone from Apria would call me to go over the billing stuff and confirm the order or some. Several days later I get a call from someone from Apria about a supply order and what I needed and I said I was confused, I don't know what supplies I need, I've never even gotten my first cpap machine or anything, and this person had no idea what I was talking about and then said the order needed to go somewhere else and someone else would call me. I wait and wait. I never get a call. I finally call Apria again, this time the rep I spoke to said my order was cancelled because the previous rep tried to change the masks on it and they're not allowed to do that only the provider can do that. This rep said they could restart the order, that someone else would call to confirm it and go over billing stuff, and she said to not bother bringing up to masks and just wait until I get my machine then call and ask for a new mask. Reluctantly I did what they said. Eventually I get my cpap machine and the nasal masks. I call Apria to ask for a different mask, first person I spoke to asked what size I need. I said I don't know??? I've never used a cpap before, never used this mask before, no one has met with me to ask what I wanted or fit me for a mask. The Apria person was very huffy and impatient and was all well I can't order it if I don't know what size, and you want to get the size right because you only get 1 replacement in the first 30 days, figure it out and call back. I call Apria again and the next rep I talk to doesn't ask about the size and just says they'll put the order in, puts me on hold for a while, then they come back and say that can't order the new masks, that they have to receive an order for a new masks from my provider.

At this point it's been months of going back and forth. I contact my provider, and am told to call the specialist scheduling line to schedule a mask fit appointment. I schedule the appointment, it's of course like 6 weeks out and there's nothing sooner. I took it and kept calling to try to get a sooner appointment but nothing.

I go to the mask fit appointment. The guy was very nice, listened to me, looked at a few different masks with me. He said he's been hearing a lot about how frustrating Apria is. He placed the order for me, and worded it with context to try to get them to work with me because it was past the initial 30 days free-mask-exchange period. He said hopefully we could figure something out, if not they'll have to bill my insurance and I'll have to pay for it. (But my insurance covers everything 100%... I'm on medicaid and stuff.)

I get a call from Apria saying my order isn't eligible and it's been cancelled.

At this point, I'm frustrated and tired. I'm sick of dealing with Apria. My anxiety over this is ten times worse. It doesn't help that every person I talk to at Apria says something different, and then half the people I talk to have a rude or aggressive tone. It's so bad, my anxiety makes it so so bad, I feel like I'm going to have a panic attack when I think about trying to contact them. It took me two weeks to fight past the anxiety and call them, again, and ask what the problem is and what I do next.

I finally called them. I get yet another aggressive sounding person. They said it was past the first 30 days, so they won't send me a new mask and headgear, and that I'm ineligible for new head gear until the end of December. I tried explaining everything, all over again, how I had no choice because they refused to give me a new masks, they said I had to have my provider order, but it was impossible to see my provider in the first 30 days. They said the only thing I can do is call my insurance and asks if they'll pay for new headgear before December. I gave up and hung up.

I'll try to call my insurance, but that's going to be a complicated headache.

It's been 3 months of this.

And my fatigue is worse than ever. I can barely drag myself out of bed to go to work. On the weekends I'll sleep for for 12-15 hours, then I try to get up and I can manage for 2 hours at best and then I get so intensely tired. All I want to do is lay my head down on my desk or curl up in bed and go back to sleep. I'm tired all the time. So intensely tired. During the work day caffeine and my adhd meds help, and if I'm hyperfocused on something then I don't feel as tired. But the rest of the time I'm so exhausted all the time.

But trying to get started on CPAP therapy and stuff, it's been so stressful. I just want to give up and not deal with it anymore. Send the stupid machine back and be done with it.

I keep wondering if it's even worth it. What if it doesn't even help? What if this mask isn't right then what do I do?

I'm just so tired of this. And I'm upset because I don't understand why I wasn't fitted for a mask first to begin with. This whole thing has been so confusing and it's so hard to get answers.

And having to deal with this when I'm so exhausted... and when it's making my anxiety even worse. Like I already have extremely bad anxiety, especially phone anxiety, and having to constantly call them and deal with them and get told different stuff all the time.

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.

[ChicagoGranny]

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

[Julie]

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

[zonker]

welcome to the zoo!

But trying to get started on CPAP therapy and stuff, it's been so stressful. I just want to give up and not deal with it anymore. Send the stupid machine back and be done with it.

so i'm a little slow this morning. the bulk of your text seems to be directed at crapria. are you saying you DO now have a machine and mask?

if so, the forum can help. but we would need more info from you. what kind of mask and machine? this is an important first step. we don't all use the same machine and certainly not the same mask.

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.

there is a software program that's free that will help give us further facts. but, we need to know if you have one of the machines with which it's compatible.

so let us know so we can get started helping you.

good luck!

[Miss 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. The whole purpose of what you're doing is to stop feeling sleep-deprived. Using PAP has an excellent chance of getting you there.

Like Zonker, I'd be curious whether you already have your machine and are just snarled on the mask. Do you have things like a hose that goes from your machine to your mask? Filters for your machine?

In a pinch, and if you have the money to do it, you can buy a mask on your own dime while you're waiting to sort out the DME stuff. You can piece together a resmed airfit f30i from parts available on Amazon, or if you have a copy of your prescription, you can buy an assembled unit from an online company like cpap.com, which underwrites this forum. They have a good return policy on masks.

[Julie]

And some have found stuff on e-bay, FB marketplace, etc. etc.

[defy]

I did receive the machine. I was sent the ResMed AirSense 11, and with it a fit kit for the ResMed AirFit N20.

I admit I haven't tried to use it. Because I'd been going back and forth with Apria, I thought I shouldn't, I didn't know if I'd have to return them or what. No one ever explains anything or gives me clear answers.

I mouth breathe though. I've tried everything not to over the years, but my mouth always falls open in my sleep. I mouth breathe a lot of the time during the day too; if I try to only nose breathe, it feels like I'm not pull in enough air. In addition to that, I get nasal congestion at night a lot of the time. Some nights I'm fine, other nights I go to bed and my nose gets all stuffed up and I literally have to mouth breathe.

Plus just looking at the AirFit N20 makes me feel really anxious. The way it sticks out so far from your face and the hose sticks out from it and wraps around you. The thought how I'd be constantly getting tangled up in the hose while I toss and turn and change positions, cause I toss and turn a LOT.

When I finally actually had my mask fit appointment and got to actually try out the different masks, the f30i really did feel kind of 'right', along with a couple other similar types of masks that I can't remember the names of. It just makes me even more frustrated because I don't understand why a mask fit wasn't done first. Everything I'd read online had said the mask fit was the first step of the process and you'd pick a mask that way and then order the stuff, but that's not what happened with me.

In a pinch, and if you have the money to do it, you can buy a mask on your own dime while you're waiting to sort out the DME stuff. You can piece together a resmed airfit f30i from parts available on Amazon, or if you have a copy of your prescription, you can buy an assembled unit from an online company like cpap.com, which underwrites this forum. They have a good return policy on masks.

I've thought about this a lot and I really really wish I could just do this. Unfortunately I really don't have the money right now. Which sucks because I looked at them and they're reasonably priced, but I'm just that broke right now.

[ozij]

Tossing and turning a lot is frequently a result of the breathing disruptions cause by Obstructive Sleep Apnea.

Nasal rinsing can help with a nose that stuffs up intermittently.
You can read more about it here, for example.
https://my.clevelandclinic.org/health/t ... irrigation

[zonker]

I mouth breathe though.

there are a couple of things that will help with that. one in a foam cervical collar. this helps keep the jaw from opening. this can be found at most drug stores. it's usually in the "senior section" with bedpans and canes and the like.

another is a chin strap which can be found online in places like amazon.

with either of these methods, you may find that you'll have to use mouth tape or scuncis to keep your lips from parting while you sleep.
[/quote]

Plus just looking at the AirFit N20 makes me feel really anxious.

something to try to see if it reduces your anxiety about the mask or really any mask is to wear the mask while awake. while watching tv. gardening. doing the dishes. what have you.

most of us suffer this same anxiety when we first start. i certainly did! and it's perfectly natural. you've slept without this thing for umpity-ump years. your brain doesn't want this "intruder". it thinks there's an alien on your face trying to suffocate you!

so you want the brain to realize that life goes on even with this thing on your face. so you may want to give that a try.

good luck!

[Steerpike58]

I did receive the machine. I was sent the ResMed AirSense 11, and with it a fit kit for the ResMed AirFit N20.

I admit I haven't tried to use it. Because I'd been going back and forth with Apria, I thought I shouldn't, I didn't know if I'd have to return them or what. No one ever explains anything or gives me clear answers.
...

Well despite this entire process being terribly mis-handled, it seems like you got a decent machine that should serve you well. I'm surprised you didn't get a trial machine first, to make sure the machine is right for you. But at least you got a good machine. So now you just have to find a mask that works.

Plus just looking at the AirFit N20 makes me feel really anxious. The way it sticks out so far from your face and the hose sticks out from it and wraps around you. The thought how I'd be constantly getting tangled up in the hose while I toss and turn and change positions, cause I toss and turn a LOT.

I had a similar concern, but to my great surprise, the mask doesn't 'get in the way' and I don't get tangled in the hose - my two biggest concerns. The biggest challenge for me was getting a mask that fits perfectly; I've had 6 masks so far and I'm still not settled on one. But - my sleep clinic keeps giving me new ones to try at no extra charge. It seems odd you are being asked to work this part out with the vendor; it should be between you and your doctor(s) / sleep clinic to settle on the right machine and the right mask FIRST, then start ordering stuff from vendors. Are you in the US?

When I finally actually had my mask fit appointment and got to actually try out the different masks, the f30i really did feel kind of 'right', along with a couple other similar types of masks that I can't remember the names of. It just makes me even more frustrated because I don't understand why a mask fit wasn't done first. Everything I'd read online had said the mask fit was the first step of the process and you'd pick a mask that way and then order the stuff, but that's not what happened with me.

Thank goodness you finally got your mask fit appointment! I'm with you - why wasn't this done first? Anyway - it happened; better late than never! Don't hesitate to ask for different masks. I complained of 'leaks' and they first said 'our data doesn't really show any leaks' - but I told them even a minute leak around the seal can cause a loud 'trumpet' sound that wakes me up, and they immediately give me a bunch more to try.

[defy]

An update.

So Apria wouldn’t give me a new mask, but my respiratory therapist sent me the Airfit F30 from their own stock. (I wasn't expecting this and am still really shocked at how kind that was.) Not exactly the one I wanted (I wanted the F30i) but it was better than the nasal mask thingy. So I tried to start using it.

I started over the past weekend. The first night I managed to keep it on for 1 hr 13 minutes. Night 2 I kept the mask on for 1 hr 30 minutes. Night 3 for 2 hrs 35 minutes.

Last night I lasted 42 minutes before I shoved it off. I wasn’t feeling well and my nose started feeling congested and even when I tried breathing through my mouth I felt like I couldn’t quite breathe, and the mask felt too warm and clammy/muggy. I think that might’ve been cause I tried testing out the different settings and playing with the humidity to see how it felt before changing it back to auto.

The other nights, it felt okay when I started using it. I didn’t know what I was expecting really. It didn’t really feel like anything was happening until I broke the seal and discovered that yes air in fact was blasting through the hose. It was strange how I couldn’t really feel it like blowing into my nose/mouth. Again I didn’t really know what to expect.

So I laid in bed with the mask on. Those hose coming out the front wasn’t as bad as I thought, but I still don’t really like it.

So it starts out okay, and I guess I’ve managed to doze off a little bit with it on. Next thing I know my mouth is full of air and my cheeks are puffed out like a chipmunk or something. It’s really uncomfortable and I try to push the air out of my mouth but I can’t. I usually get annoyed and take the mask off. I don't know why this happens or what to do about it.

Another thing that’s been annoying is the mask kind of pressing into like sort of my upper lip area, kind of near the corners of my nose. I assume it’s from the frame. When I had the mask fit appointment there was was some other similar mask I tried that pressed a lot more against that area and ny respiratory therapist said it was cause of the frame coming up higher than the F20 does. It doesn’t hurt or anything, and it’s not pressing really hard. But it gets really bothersome and annoying fast. Loosening the top straps helps a little and obviously tightening them more causes it to press harder in those spots. I’m still trying to figure it out.

I’ve also had issues with mask leaks coming from the very tip of the nose part. I don’t know if my nose is just too small or something but it’s hard to get the mask to sit/lay just right near the tip of my nose so that it won’t leak. It's like the silicone just kind of gapes a little right under the tip of my nose and air leaks out unless I fiddle with it and poke at it until it kind of lays just right.

I’m also still trying to figure out what to do with the mask and hose during the day and how to store it. I’ve just been trying to coil it loosely and get it to stay on the shelf but it’s really messy. I don’t know if I should hang it somehow or gather it into a loose bag.

Also do I really need to wash the mask every day? Or is there some kind of alternative like a wipe to wipe it down with. I’ve seen lots of different mask wipes on Amazon but I wasn’t sure which ones are okay, like if they actually work to clean it and won’t hurt it and stuff. It’s just really freaking tedious to have to wash it.

Also I’ve seen like cloth mask cover/liner type things. And I’ve been debating looking into them. I thought I wouldn’t have a problem with the silicone on my skin but it’s starting to feel bothersome? I can’t describe it. I don’t know.

Anyway. That’s my update.

[ChicagoGranny]

So Apria wouldn’t give me a new mask, but my respiratory therapist sent me the Airfit F30 from their own stock. (I wasn't expecting this and am still really shocked at how kind that was.) Not exactly the one I wanted (I wanted the F30i) but it was better than the nasal mask thingy. So I tried to start using it.

How kind was it if they didn't provide you with the model you wanted?

my nose started feeling congested

This can ruin anyone's CPAP therapy.

It was strange how I couldn’t really feel it like blowing into my nose/mouth.

Nothing is blowing. It's just lightly pressurizing. The last 'P' in CPAP is for 'pressure', not 'blowing'. It's common for users not to feel the air pressure.

Those hose coming out the front wasn’t as bad as I thought, but I still don’t really like it.

There's that dirty Apria, incapable or unwilling to provide the model you want.

Next thing I know my mouth is full of air and my cheeks are puffed out like a chipmunk or something. It’s really uncomfortable and I try to push the air out of my mouth but I can’t. I usually get annoyed and take the mask off. I don't know why this happens or what to do about it.

Practice keeping the tip of your tongue on the roof of your mouth. Practice this anytime you are awake in bed. Practice it while you are typing on your PC. If your cheeks balloon while awake, open your lips slightly to release the pressure. Then, close your lips and practice keeping your tongue on the roof of your mouth. I've practiced enough that it usually doesn't bother me. I think it is always when I am awake and never when I am sleeping.

Another thing that’s been annoying is the mask kind of pressing into like sort of my upper lip area, kind of near the corners of my nose. I assume it’s from the frame.

The force of pressing is proportionate to how tight the straps are. A common mistake is to overtighten the straps. Watch some YouTube videos about fitting and adjusting that mask.

I’ve also had issues with mask leaks coming from the very tip of the nose part. I don’t know if my nose is just too small or something but it’s hard to get the mask to sit/lay just right near the tip of my nose so that it won’t leak. It's like the silicone just kind of gapes a little right under the tip of my nose and air leaks out unless I fiddle with it and poke at it until it kind of lays just right.

Watch those YouTube videos. Make sure opposing straps are adjusted to the same length.

Do you need to see an ENT about your nasal congestion? Note, a high humidity setting can cause congestion in some people.

You sound whiney, but you seem to be on a path to achieving good CPAP therapy.

Thanks for staying in one thread while you are going through your startup period.

[defy]

How kind was it if they didn't provide you with the model you wanted?

To be fair, when I saw him for the mask fit appt, he didn't have the F30i for me to try. He thought they were supposed to have them but he couldn't find any. So I assume he still didn't have them so he sent me the F30 from their own stock since I tried it on in person and was okay with it, and it's so closely similar except for the F30i having the hose attach at the top of the head instead of the the front of mask frame. It was kind of the next best thing since Apria wouldn't send me a mask.

Nothing is blowing. It's just lightly pressurizing. The last 'P' in CPAP is for 'pressure', not 'blowing'. It's common for users not to feel the air pressure.

I guess that's technically true. But like when you take mask off there's air blowing out of the hose, that's why I was confused when I couldn't really feel anything when the mask was against my face with a good seal.

There's that dirty Apria, incapable or unwilling to provide the model you want.

I really hope they won't give me problems again when I'm past the date they gave me when they said my insurance would pay for a new mask and headgear, and that they'll just let me order the damn thing. This whole situation still makes me angry and frustrated.

Practice keeping the tip of your tongue on the roof of your mouth. Practice this anytime you are awake in bed. Practice it while you are typing on your PC. If your cheeks balloon while awake, open your lips slightly to release the pressure. Then, close your lips and practice keeping your tongue on the roof of your mouth. I've practiced enough that it usually doesn't bother me. I think it is always when I am awake and never when I am sleeping.

I read something about this earlier and I'll try it. So far, I seem to wake up with my cheeks ballooned out and my mouth open cause I usually mouth breathe in my sleep. (I've tried chin straps and other stuff but my lips always part and my mouth opens slightly in my sleep.) When this happens it also usually feels kind of difficult to exhale and stuff.

The force of pressing is proportionate to how tight the straps are. A common mistake is to overtighten the straps. Watch some YouTube videos about fitting and adjusting that mask.

Makes sense, but I have the straps pretty much as loose as possible. But I'll look into it.

Do you need to see an ENT about your nasal congestion? Note, a high humidity setting can cause congestion in some people.

I haven't seen an ENT no. But I do suspect it was a lingering affect of the high humidity, cause I was experimenting with the settings while trying to wear the mask for a bit, and I set it really high to see what that felt like. Then I turned it back to the auto setting when I tried to go to sleep.

You sound whiney, but you seem to be on a path to achieving good CPAP therapy.

I don't really appreciate being called whiney, but ok...

I'm still struggling to reach a place of acceptance when it comes to all of this. But I'm no where near it. I'm still upset and frustrated and kind of resentful that I'm going to need a machine in order to sleep for the rest of my life. Like, I don't want this. I know it's really common, and supposedly I'll feel better eventually, and blah blah. But I hate it and I don't want this. I dunno. I've been trying to work through it but it's been rough. This has just been hard to accept.

[ChicagoGranny]

kind of resentful that I'm going to need a machine in order to sleep for the rest of my life

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.

[Julie]

Whine, whine... grow up already.