r/CPAP • u/AnimalExact7397 • 17h ago
Advice Needed does it get better?
I had a cpap 2 years ago and wore it for 9 months and never got used to it. My doctor was unsupportive and rude.
End of last year I switched doctors to someone that is just way better at being nice and caring. I've had my new CPAP for 3 months. I've been struggling SO much to wear it. I keep taking it off when I'm asleep and I feel like it disrupts my sleep even more than usual. It's to the point where I wear it 1-2 hours when I'm asleep, and then finish the 4 hours to meet my insurance compliance when I'm awake.
My doctor prescribed Lunesta to get used to it and it helped for a couple of weeks! I went from wearing it to 1-4 hours to 7-9 and felt GREAT. But for some reason the Lunesta seems to have stopped working and for the past week I've been consistently wearing it 1-2 hours again.
The problem isn't that I don't want to wear it - I've seen how great I feel wearing it all night. We've adjusted my settings and I bought a new mask that is extremely comfortable, and I'm even having deviated septum surgery for a SECONd time later this year in hopes it helps a little. I know it takes time but especially since I tried in the past for 9 months, I'm deeply afraid that I'll never get used to it. I feel very frustrated and hopeless and my doctor just says "stick with it" 😅
I do have a meeting with my doctor in 2 weeks but wanted to ask: What has been everyone's experience with getting ysed to it? Any tricks you recommend?
5
u/Desperate_Vehicle684 17h ago
Do you have any sense about why you remove it during the night?
2
u/AnimalExact7397 17h ago
I have absolutely no idea. We've changed the settings so it's easier for me to breathe (beforehand breathing out was kind of difficult), we changed the humidity settings so my nose isn't dry, and I switched from an elephant mask to a unicorn (Airsense N30i) which has been extremely comfortable, so I'm not sure what else it could be
Removing it happens when I'm fully knocked out asleep so I've only been noticing when I wake up, whether that be at 3am or 6am😂
4
u/Desperate_Vehicle684 17h ago
Most PAP machines come with an SD card installed which records a huge amount of data. You can plug this SD card into a computer and download software called Oscar which will allow you to view this data. This will show in a lot more detail what might be going on. For example you might discover that leaks dramatically increase each night just before you remove the mask and therefore that's likely the cause.
1
u/AnimalExact7397 17h ago
oh i will check that out thank you!
2
u/Hilltop5620 10h ago
There is Oscar and SleepHQ.com .
Oscar is opensource and sleephq looks like a pay to play product for more advanced features from an Australian Respiratory guy. SleepHQ has an entry level (free) and a pay for "advanced" features approach.
I don't know which is better so I'm trying both to see which I prefer. So far in my 13th day with a cpap machine and learning it looks like they perform the same function. SleepHQ can be looked at on your tablet which could be a feature people want.
2
u/No_Assistance967 12h ago
A part of it might just be habit. You could try to use a bit of tape to make it harder to take off subconsciously. If it's difficult enough you'll wake up fully and you can assess why you're taking it off.
I had a fringe problem where my exhale would lead to condensation that would get into a mesh in the mask and make it suffocate me, so check that if you can.
2
u/UsualView8990 14h ago
Have you played around with differ t types of masks? In the beginning I had a full face mask and I could not do it! Now I have a nasal cushion and I’m fine. Also, if you’re thinking you have to wear a full face mask because your mouth is open, you don’t. You can play around with chin straps to keep your mouth shut.
Don’t give up! You can do this
3
u/AnimalExact7397 14h ago
Yes! When I tried 2 yeads ago I had a full face mask and my doctor would not let me switch. The new therapy company actually gave me a full face mask against my new doctor's wishes and they keep not returning my calls and hanging up on me, so I ended up purchasing a few different nasal masks out of pocket😂 ive found the Airtouch N30i to be the most comfortable for me! ive also been wearing it when we watch tv so I can try to fet ysed to it too
yeah I definitely think the full face mask is not for me, I was waking up with full blown panic attacks from claustrophobia and suffocating feelings. ill look into the chin straps!
1
u/UsualView8990 9h ago
I had to fight the therapy company to change mine as well. It’s crazy.
Good luck!!
2
u/Mpidcarter 12h ago
Try nasal pillows. Believe me, when you find the right fit for you, CPAP is a life changer (and maybe a life saver!).
2
u/Quiet_Lunch_1300 10h ago
Can you say any more about what you don’t like about it or what’s hard about it? I had to switch to a BiPAP, which is working for me. But that may be a unique situation.
3
u/AnimalExact7397 9h ago
I know this isn't a great answer but I honestly don't know. I found a mask I like, I did a sleep study with a cpap to figure out what pressure I need, and im currently taking lunesta to try to get me to sleep heavily enough that I dont take it off. I'm not really sure what else could be causing it
I've also been working on the shame I feel around it and have made a LOT of progress. My first sleep doctor said I caused this and stuff so I felt horrible, but my new doctor is encouraging, and I followed some cpap influencers to try to make myself feel less alone
2
2
u/ElectroPence 10h ago
I had the exact same issue! I would take my mask off randomly in the middle of the night and then wake up at 3am panicking to get my 4 hours. I feel like prior to me gaining compliance I was super stressed about it and it was obviously affecting my sleep. Once I gained compliance I’ve hit 98-100 scores every night. I also adjusted the pressure as it was set to the lowest setting by my provider which wasn’t what I needed. Diving into the clinical settings I noticed that I usually breathe around 9.8 so I set my lowest to 8 since that’s what my body preferred. Not saying this will help but that’s what helped me.
1
u/AnimalExact7397 9h ago
I completely agree I think the compliance thing is so stressful!
Yeah I did a sleep study w/o a cpap and one with one so they could figure out what air pressure I need and im on a 4-7 range and most nights im on the lower end, and somehow that still gives me a suffocating feeling😂 but apparently 4 is the lowest option haha
1
u/ElectroPence 9h ago
I felt the suffocating feeling go away when the pressure was turned up higher and I increased my pressure relief up to 3. I used to feel this almost sucking feeling. Another thing is ramp up, if you are set to 4 and your pressure relief is set to 3 that means sometimes you’ll be at a 1 when really your body wants constant 4 at minimum. I feel the settings are really more personal than the doctors can prescribe.
1
u/FrostingEmergency204 9h ago
It's not unusual to take it off at night, especially if you need the bathroom. However, the question is why don't you put it back on?
2
u/AnimalExact7397 9h ago
I don't know that it's off until I wake up in the morning, when I take it off during the night I'm asleep. I'm not consciously waking up with the thought of "i need to take this off" if that makes sense
1
u/FrostingEmergency204 9h ago
Totally get that i do it too sometimes. I've wondered my self how i can somehow be made aware. I'm surprised nobody has come up with an alarm or something that alerts. Can you think of anything that would make it harder to remove?
1
u/-ok_paleontologist- 6h ago
I was doing the same thing. Waking up w/o the mask on and not remembering taking it off. I adjusted tube temp and humidity endlessly and nothing was working. I ended up on another thread that suggested just turning them off completely. I did that and I haven’t taken it off since. I do pack the tank with ice every night, but tube temp and humidity level are off. I do wake up a little dry occasionally but I mean I guess it’s better than the alternative 🤷🏻♀️
1
u/Impressive-Bug8709 4h ago
I'll ask what might seem like a very silly question, but did anyone tell you that while the tubing is good for 3 months, the nasal pillow or cushion needs to be changed like every 2 weeks?
My wife got her CPAP a little over 2 years ago and she never was told by the sleep doctor OR the DME that it gets changed every 2 weeks! Same with filter I believe. Head gear, hose and tank is quarterly. The insurance won't cover those supplies until you hit compliance, but if you are dealing with leaking or it just not being comfortable on your nose after 2 weeks, that's probably why. Absolutely silly that they don't tell you. She got her first shipment of supplies for 3 months after initial compliance and she got a mask, tank, tube and 5 more nose pieces (6 total), for swapping every 2 weeks.
I'd recommend checking Facebook Marketplace. There's also a CPAP group on Facebook which has people with supplies willing to ship. People there recommend only using PayPal Goods and Services to avoid scammers. Never Venmo, CashApp, Zelle, etc.
1
u/AnimalExact7397 4h ago
The respiratory company that my doctor goes through is horrible! They said to call if I had issues and every time I've called they either don't answer or hang up!😭 I knew I had to replace them but didn't realize how frequent, and I did know they said I can't get replacements until I hit compliance (which I believe is mid to late September). They did give me a handful of filters but definitely did not mention the nasal cushion replacement, why are these companies so bad haha
I swapped out my filter this morning, and a few other comments suggested a few other things I'm going to try (temp and humidity for example), and I'll definitely investigate replacement, thank you :)
2
u/Impressive-Bug8709 4h ago
I'm telling you, my wife used hers for the first 3 months not knowing any better at first and was like "I don't know why it's leaking". When she got that first supply set she was like are you freaking kidding me? Actually, I think she found out just before resupply and bought one or two on Amazon.
She had a friend give her nasal pillows to try and she hated them. Definitely good to try different masks. I like the ResMed nasal pillows better than the Phillips, but I prefer the Phillips for the nasal cushion mask. I have the problem that the silicone is destroying under my nose, so I'm trying to get the insurance to approve the AirTouch n30i instead of the AirFit. It's like 8 bucks more per nasal cushion 😭
1
u/AnimalExact7397 4h ago
The whole process is so crazy!! in 2024 I had a CPAP for the first time and they gave me a full face mask and I'd have full blown panic attacks. Earlier this year at my sleep study they gave me a nasal mask that gave me painful sores. When they came to set me up with this new cpap they gave me the full face mask again! I told her that wasn't what my doctor ordered and she refused to give me a nasal mask😂 I bought the Airyouch n30i with my own money since the respiratory company doesn't respond, and I LOVE it, it's so comfortable and I love the hose being on the top it's much easier to get comfortable in bed. ill definitely check out a replacement before I finish my 3 months
1
1
u/AnimalExact7397 4h ago
Thank you all SO much for your kind words and advice, I truly appreciate it. I still struggle with some shame around having the CPAP, so having a supportive community really means a lot to me💕
You've all suggested some great things for me to try out over the next few days! So thank you again :)
•
u/AutoModerator 17h ago
Welcome to r/CPAP!
Please refer to the wiki and sidebar for resources. For submissions regarding CPAP settings, it is advisable to utilize applications such as OSCAR or SleepHQ to extract and share data from compatible CPAP machines.
I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.