Newbie with issues and questions

[crazzeescrapper]

Hi everyone. I'm so glad to have found this site. Had my machine since 10/5 and have yet to get through a whole night with my mask on.

Started with a Fischer ? Nose mask and it was making me hot at night and I guess I'm a little claustrophobic too, couldn't stand having it on. I was also experiencing some skin irratation where the mask touched my face. On 10/11 switched to a Respironics Optilife nasal pillow mask.

I really like the feel of this mask and the 1st night slept about 4 hours with it on. Since then I've only been about to do about 2 hours a night. I keep waking up feeling like my nose is going to start bleeding. I've increased my humidifier number but nothing seems to help. My pressure starts out at 6 and ramps up to 13.

My question is, should my pressure be different since I'm now using a different type mask? My apnea test with the mask was using the nose mask, and the funny thing was I slept fine that night. Now with the nasal mask it just feels like way too much air since it blows in directly.

Another thing, I keep waking up with my mask off. I must be taking it off during my sleep. This has happened to me at least 4 times within the last 2 weeks. Anyone else have this problem?

I look forward to chatting with all you hose heads on here. Thanks in advance for your suggestions.

Tracy

[sleepycarol]

You might try wearing your mask while watching tv, etc. to get used to the feel of it and so it hopefully will get more comfortable with it on.

Keep hanging in there.

[LavenderMist]

Your prescribed pressure would be the same. As far as removing the mask, here are some previous discussions about this topic.

viewtopic.php?t=5103&highlight=taking+mask
viewtopic.php?t=4656&highlight=taking+mask
viewtopic.php?t=1484&postdays=0&postorder=asc&highlight

Hope this helps.

[Snoredog]

it takes the average person about 4-6 weeks to get used to the therapy where they can sleep through the night.

Getting a bloody nose or a sore throat can be expected but they both usually go away.

Humidifier will help, but if you turn up the humidifier too much it will make you congested then you will have problems. Consider a saline-only rhino rinse, don't use any over the counter nasal sprays, those only work for 1-2 days then they actually contribute to nasal congestion. Taking a shower before bed are other things that can help.

Wash your face and mask before bed, skin oils between skin and cushion can cause irritation and cause more leaks. Avoid face creams.

Turning up your humidifier to "warm" the incoming air is the incorrect thing to do and will only cause congestion, rainout and other problems. Rainout is droplets of water that form inside the hose when they hit you in the face under pressure they can wake you up.

IF you want to warm the incoming air without adding too much moisture, consider a cover for your hose or better yet a heated hose. The Aussie heated hose is expensive but worth it during winter. I prefer the incoming air cool and never use the humidifier heat, during the dead of winter I use the heated hose.

Continue to use your ramp, make sure you know how to set the time and pressure for it.

[skits]

I'm on week three, and average one hour a night. And that's not a good thing, but didn't want you alone out there. I started with the nasal pillows (FF mask, tho) and switched to a regular full mask. I couldn't handle all that air going up my nose (felt like I'd be a baboon soon). With the FF mask (nothing in nose) I have no problem with the pressure. But, again, I don't last long. But I'm trying every night in the hopes one of these nights I'll just fall asleep. Hand in there.

[Nightwatcher]

It is very refreshing to read people's honest opinions posted here without having them stepped on by older users.

This is a big adjustment. I am on another board where many new users seem to get bullied and belittled.

But, that happens in almost every support forum. Some folks like to prove they are the sickest - or the most heroic. They can make you feel like a weakling, a fool and a walking dead man.

I appreciate the honestly and acceptance of people's trials and successes here. There have also been lots of good, practical ideas offered here.

PS; I am on month 2 and I am averaging 3-4 hours a night with the mask. I am not sleeping well, and I used to think I slept fine. It's been the worst two months of my life. But I am going to keep trying because I have read of others having good success after weeks of trying.


thank you,

[Slinky]

Hey, the first 30+ nights on CPAP were for me the worst 30+ nights of sleep I ever remember getting (not getting?)!

Bu then I had tried CPAP some 10 years before for 2 1/2 months and eventually gave up due to a mask cutting up my face and no help from the DME supplier. Despite that I had noticed some improvement at that time which gave me the determination to stick w/it this time.

Only once have I woke up in the morning w/my mask off and no idea how it got off! But two other nights I distinctly remember taking it off, going to the bathroom, and then laying back down and promising myself I'll put the mask on in a minute ...... obviously, I didn't!

I can relate to the sore nose! Middle of the winter in Michigan w/no humidity or just passover humidity gave me a raw nasal interior. Air blowing on it was like pouring salt on raw open sore!! Those were two nights I did NOT use my CPAP! I hadn't had problems w/nasal pillows until then but once I switched back to a nasal cushion I opted to forego that direct pressure straight into the nostrils from nasal pillows and have stayed w/a nasal cushion ever since.

I've only once ever experienced rainout at home (I did encounter it briefly during my titration and told the tech so and she ended it at her end). I make it a point to take as much hose as I can under the covers w/me and that has worked well for me. When I was using an over the head hose arrangement w/the ComfortLite 2 (the most comfortable nasal pillows for me) I just put a couple of my husband's thick old hunting socks over the length of the hose.

By the way, that ComfortLite 2 can be like getting two masks in one if you get the option that comes w/2 sizes of nasal pillows and 2 sizes of simple nasal cushion. On the other hand, if you are really into and sold on the nasal pillows, the other CL2 option is 2 sizes of nasal pillows and 2 sizes of nasal seals. The seals sit on the bottom of the nasal openings rather than protruding a SLIGHT distance INTO the nasal openings.

Another nice feature of the CL2 is that you can purchase the nasal cushion, nasal seal OR nasal pillows for the CL2 separately at cpap.com if you want to try all 3 options. AND it has so many adjustment options besides just the straps. You can adjust the angle between forehead and bridge of nose, the distance or length from forehead to bottom of nose, the angle the pillows fit into the nares AND the distance between the nasal openings.

In the end I found I liked the simple nasal cushion better. I never got around to doing the "fix" RestedGal and others have had such good luck with by "decapitating" the CL2. Instead I opted to try the Simplicity simple nasal cushion and I've had my best luck with that. Its one of Respironics oldest masks and it hasn't worked for some. But it has been the one that has worked best for me.

I just celebrated my one year anniversary on CPAP this month.

[momadams]

I started out being able to sleep with the mask for about 3 hours, then would take it off and go back to "sleep".

At some point I had an epiphany: I could put the mask back on at some point in the night and do another couple of hours!

Seems obvious now, but was a huge AHA for me then.


Shari

[allergyridden]

For me the Optilife has been difficult to adjust. I get a smothering feeling, so I make sure the two pieces on the sides are below my mouth. If they are right over my mouth it drives me crazy. If you tighten the sides too much it puts a lot of pressure on your nose. Try adjusting it in front of a mirror, if it smashes the nose too much, it will hurt in the morning. I leave it looser, tossing & turning can dislodge it, but I realize it & put it back, & go on sleeping. As you progress the brain will make these adjustments without totally waking you up.
For a full face mask I use the Quattro because it isn't too close to my nose.
Because it's bigger I don't have the sense of being smothered. I only use that when my allergies are so bad I can't stand anything else. The nasal rinses & the Bipap are actually helping with my sinus issues.
My favorite is the Nasal Aire II. It is just a tube running under the nose & over the ears. I fasten it at the base of the skull with velcro. Very good for people who can't stand anything on their face. Make sure you have Ayr gel, cause the nares have to get used to it. The prongs do insert in your nose, very soft though. Not so ugly either. The Optilife is just my back up.
You can go to Respirionics website & they have instructions for adjusting the Optilife.

[crazzeescrapper]

Thanks to everyone for your advise. I've spent more time reading on the boards, and this place has so much good information. I'm glad I'm not alone in having issues with getting use to the machine.

Thanks,
Tracy

[daddyof7]

I am going on three weeks now and yet to keep mine on. After hours of trying to sleep I rip mine off and try to sleep on my own. My sleep study was perfect too. I slept like a baby for the first time in years! Since the CPAP, worse than ever! Finally got a mask that was semi comfortable and now get rain-out! I have put my unit in the case and use it as a door stop now! LOL

[odawa]

Sometimes I wake up tired and sometimes I don't. It's really strange. I think I sleep all nite, but don't know for sure until I wake up. I'm not getting up all nite to go potty. thats a bonus. I leave my mask on most nites. Only a couple of times did the air blowing make me nervous and feel like I was gasping. I dont understand why some nites I wake up rested and some I don't. I just have to be grateful for the days that I do.

[sleeplessinaz]

Hi---I am a new "hose head" too---been on my machine for almost two months now. I sometimes take mine off about 2 hours before my alarm goes off---I am still trying to get used to it I guess. The sore nose is just now becoming an issue--ICK!!! I do feel better when I wear my "gear" so I am sticking to it and have not gone one night without it yet. Hope you hang in there--I had to swtich masks too --I am on my third type of mask.

[annie123]

I still feel that I am relativly new to this too in some ways after being treated for just over a year. I had a heck of a time getting used to it, but stuck with it (like you're doing right now) and feel so much better. It is worth it in the end! I can't sleep without the mask now...Sounds like a fairy tale at the point you're at, but is really true.
The most important thing is that you're willing to keep trying. It does not sound like you've given up...you're just adjusting and that's the msot important part of the battle.
I called the RT at the DME in tears over the difficulty I had in getting used to it. Luckilly she was sympathetic and supportive and gave me the strength to stick with it.
Keep up the great work and keep trying 'till you find what works for you!

[Kharris]

I had to contact the supplier of my gear several times, I found the e-mail
address, and rated them A for Awful, on the customer satisfaction card
that I sent back to them.
They contacted me about 3 weeks later. I found out my insurance would
pay for 6 new masks a year. All I had to do was get an order from my
doc stating " mask of patients choice or patients comfort.". It took about 3 days to get
the order faxed to the right location. I tried about 5 types of masks,
and finally stuck with a larger size of the one I was using.
My supplier,was not going to volunteer anything, but when asked they
did tell the truth.
I don't recommend harassing them, but call them. they are the "experts"
and when you get someone on the phone, don't let them go. Make a list
of questions and open fire. If they don't know an answer, ask them who
to ask. Don't be afraid to ask for supervisors. This is a fairly serious issue
we are all dealing with, we deserve to know the asnwers.