Struggling with compliance....

[Dazzles]

I find myself waking up about 3 hours in and ripping my mask off. I feel like I am dying of heat exhaustion. If I cool the room down to compensate I get rain out (and it never really compensates)

It is the same overwhelming urge I have every few hours at work to rip my headset off my head (Work in a call center).

I don't know what to do. I've done everything I can think of -- purchased everything I can spend my money on to help. Hose hangers, barrel covers, aromatherapy, hose cover, mask strap covers -- they helped a LOT by making me able to sleep those 3 hours -- am I expecting too much?

How long does it take to get used to it?

I am just so depressed about this.

[Mary Z]

It takes a different amount of time for each of us. What do you do at work when you have the urge to rip your headset off? At home you may want to reduce your humidity and the heat on your humidifier. Work on your sleep hygiene to see if you can sleep longer. Don't give up. Just keep posting with questions or just for support. Many of us started out right where you are now.
Good luck, keep us posted.

[robysue]

I find myself waking up about 3 hours in and ripping my mask off. I feel like I am dying of heat exhaustion. If I cool the room down to compensate I get rain out (and it never really compensates)

Ok, this is a nasty, uncomfortable feeling. But you absolutely have to quit "ripping the mask off" and then going back to sleep without the mask. Because everytime you go back to sleep without the mask on, you allow your unconscious mind to continue resisting learning how to deal with the mask.

So here are some practical things you should do to help yourself get over this hump:

• First in the middle of the night: When you wake up feeling like you're dying of heat exhaustion and needing to rip the mask off, go ahead and rip the mask off. But then make yourself get up out of your nice warm bed and go into a DIFFERENT (preferably cool) room to settle yourself down, cool off, and regroup. After you are no longer feeling quite so anxious and quite so hot, return to your bedroom and put the mask back on and try to get back to sleep again. Give yourself a reasonable amount of time to get back to sleep---estimate about 30 minutes or so. If you start feeling way too hot again and feel like you have to rip the mask off, then get out of bed yet again. Yes, I know this is not an easy thing to do, but it really is the only way to convince your unconscious mind and body that you have to learn to sleep with the mask on.
• In the morning: Try to do some troubleshooting for the next night. You've tried cooling off the bedroom, but that triggers rainout. And you say you've tried the standard hose hangers, hose cozies, barrel cozies, mask straps, etc. Have you tried moving the machine closer to floor level? Have you tried turning the humidifier down? And then there are the other obvious things to try: How many blankets have you got on the bed? Could you simply throw some of the covers off at night when you wake up way too hot? What about your pjs/nightgown? Are they winter weight? Would sleeping in lighter weight, cotton sleepwear help? What about sleeping in nothing but a large, roomy t-shirt? I know that when I wake up hot, I absolutely have to get my feet out from under the covers. If hubby made the bed with his infamous tight hospital corners, I have quite a battle to pull the covers out, but once my feet are free to stick out of the covers, I cool off quickly.
• Since you use an S9, have you thought about getting a ClimateLine hose? It's pretty clear that you wouldn't want to set the temp very high on the ClimateLine. But if you set it to one of the lower temps, then you might be able to get the humidity you crave without the feeling of waking up sleeping in a stifling hot jungle.
• Any chance some of the feeling of "heat exhaustion" is related to hot flashes related to menopause? If so, then perhaps trying some of the herbal supplements for dealing with menopausal symptoms will help.

You also write"

It is the same overwhelming urge I have every few hours at work to rip my headset off my head (Work in a call center).

Did this problem predate starting on CPAP? Or did it start when you started on CPAP? In either case, maybe there's an anxiety issue also at work here?

am I expecting too much?

How long does it take to get used to it?

I am just so depressed about this.

There are those rare souls who take to CPAP like ducks to water, feel better immediately, and never seem to have any problems with adjustment. But for most new CPAPers, it takes several weeks to two or three months to really get the hang of things and start sleeping reasonably well with the machine. And then there are those who are unlucky enough to have longer, more difficult adjustment periods---as in many months or even a year or more.

I was in that unlucky group. And about all you can do if you wind up in that unlucky group is to keep on trying. Post problems they pop up here. Try all suggestions no matter how odd they strike you. Give folks feedback on what's working and what's not. Keep in touch with your sleep doc's office about your current struggles and see if they can make any suggestions on what to try. Keep in touch with the DME and let them know all about your struggles with compliance and see if they can make any suggestions on what to try.

Because the only good news (if you're in that unlucky group) is that it will (slowly) get better with time. If you keep a sleep log with some notes about how long you sleep each night and how good/bad you feel when you wake in the morning, you will eventually start to see some positive notes in your log. They may be very small and subtle at the start. (Mine was realizing that about 4 or 5 months into therapy, I was waking up several mornings a week without any pain in my hands and feet.). But by writing stuff down, you'll will be in a position to see the small, subtle changes.

Best of luck

[Dazzles]

Thanks so much for your responses!

I'm not menopausal just yet, I'm still in my 20s.

Feeling overheated with a headset on has always been the case. I can't even wear a necklace it makes me feel hot. I have extremely sensitive skin (pale and redheaded, go figure) and anything touching my skin aggravates me and causes weird hot flashes. Even earrings.

I'll try the getting out of bed thing. When I rip my mask off at night I don't MEAN to -- I am just so confused and hot and disoriented it just -- happens. I know that sounds SO LAME to say. I'm usually awakened and very very confused. 90% of the time I don't even remember it happening.

My CPAP is well below my head and I already use the climateline hose. I'll turn down the temp tonight, but my respiratory therapist said not to mess with the humidifer temp too much. She has it set to 80. I'll try 70 to see if it helps.

My sleep hygiene is pretty good. Settled routine, no caffeine. No computer just before bed. I even read and give myself time to settle. I sort of feel like I need to FORCE myself to leave it on. But then I just don't sleep. I've done 3 days of 100% "compliance" where I just stare at the ceiling and cry. My only other compliant nights (over 6 hours that is) is when I took 1/4th of an ambien. I don't wake up then. My sleep doctor says no sleep aids, though, as it makes OSA so much worse. My AHI for those nights was at 0. When I sleep for a few hours with it on I seem to have an AHI of 1 (which is great) plus 1-2 central apneas. Which was never an issue in either sleep study.

I'm going to give everything an insanely thorough cleaning and start "fresh" tonight with all of your suggestions. I am trying to have a positive attitude about it. I tell myself that my body loves breathing fresh clean filtered air at night, and my hose covers are personalized and I made a special place for my machine. I even quit taking my migraine medicine (and deal with almost daily migraines) to see if it would help me fall asleep easier.

[Julie]

Hi - just to clarify, having the cpap below your head is not an issue, having the humidifier lower is one... if it's higher, then the water is far more likely to get into the mask... going downhill and all...

[archangle]

I'll turn down the temp tonight, but my respiratory therapist said not to mess with the humidifer temp too much. She has it set to 80. I'll try 70 to see if it helps.

Ignore the therapist. Turn the humidity off if you like. You may get a dry throat.

I'll recommend if at all possible to get out of bed, stand there and breathe and calm down for a few seconds, then turn off the machine and take the mask off if you need to.

[chunkyfrog]

I just kick the covers off. It works every time.
Taking the mask off only feeds the anxiety, making it harder to keep it on next time.

[Dazzles]

Hi - just to clarify, having the cpap below your head is not an issue, having the humidifier lower is one... if it's higher, then the water is far more likely to get into the mask... going downhill and all...

I'm confused. My humidifier is attached to the CPAP machine. It is also lower than my head in addition to having a hose hanger it provides a LOT of uphill space.

Part of what I hate so much is that I feel like my nasal pillows are still too big. It stretches out my nostrils a lot. Not enough to HURT, but enough to make it sore/uncomfortable. Like something is in my nose spreading out my nostrils. I can't get pillows any smaller for my mask, I'm already using XS. And the whole nasal piece is so big that the bottom portion (that the nasal pillows attach to themselves) actually comes down below my top lip to cover my mouth when it is closed. Which is super annoying. I'm trying out the Swift FX soon, I'm willing to test out 100 masks to find something more suitable. I'm guessing it is just me being picky though

I will keep trying. I am an adult and making excuses is not good

[Pugsy]

. Not enough to HURT, but enough to make it sore/uncomfortable. Like something is in my nose spreading out my nostrils. I can't get pillows any smaller for my mask, I'm already using XS. And the whole nasal piece is so big that the bottom portion (that the nasal pillows attach to themselves) actually comes down below my top lip to cover my mouth when it is closed. Which is super annoying. I'm trying out the Swift FX soon

I will share this with you. I used the Swift LT until the Swift FX was released.
In the Swift LT I could use both sizes..XS and Small with a preference to XS.
In the Swift FX I can use both sizes..XS and Small with a preference to the Small.
I think ( at least to me ) it seems like the Swift FX pillows inner cones are a tad smaller the comparable size on the LT.

Whichever one you end up liking the most...you might want to consider the barrel cozy. It is super nice against the skin. I bought it to help prevent rain out last winter and immediately realized I would use it year round. Not that I really had a problem with the silicone because I never did but having the soft slick material next to my skin was just so nice.
You can see it here. If you are handy person you could likely make your own. I am not handy so I don't try. She shows it with white outside but I use the softer other side that you can see, next to my skin.
I think the white was shows to make it easier to see.
http://www.padacheek.com/PACSwiftII_Barrel_cozy.html

[BlackSpinner]

Part of what I hate so much is that I feel like my nasal pillows are still too big. It stretches out my nostrils a lot. Not enough to HURT, but enough to make it sore/uncomfortable. Like something is in my nose spreading out my nostrils. I can't get pillows any smaller for my mask, I'm already using XS. And the whole nasal piece is so big that the bottom portion (that the nasal pillows attach to themselves) actually comes down below my top lip to cover my mouth when it is closed. Which is super annoying. I'm trying out the Swift FX soon, I'm willing to test out 100 masks to find something more suitable. I'm guessing it is just me being picky though

I will keep trying. I am an adult and making excuses is not good

No you are not being picky. Think about shoes. Would you wear a shoe that fits that way? Of course not. Would you wear a bra that fits that badly?
There are hundreds of masks out there. You can try a mask free for 30 days. The manufacturers provide that option to the DME. They get refunded.

Also once you find a comfortable one, wear it watching tv for a few hours for a week or two. Get your body/mind used to that wearing this is good.

Sleep in the nude. have a fan on. Just kick off the sheets when you feel hot. That is what they tell menopausal women and it works. If it can cool down the incandescent flares under the skin that is a menopausal hot flash it will work for yours.

[Dazzles]

/embarrassed

I already sleep in the buff. With two fans. Ceiling and stationary aimed directly at me. Throwing the covers off comes naturally. I always get hot flashes. I think I may have a thyroid issue but every time I get checked it goes from high back to normal during the re-test a few weeks later. My boyfriend always jokes that he likes for me to go to bed first because I heat the whole bed/room up for him. The sad thing is that it is entirely true.

My mom sleeps with a wet rag to put on her neck. She IS going through menopause so I get all kinds of tips from her.

You're right -- I wouldn't wear shoes or bras that didn't fit right. Thank you for slapping me in the face with logic! I needed it! Sometimes I feel like I am tip-toeing the line between concerned patient and whiny brat. But when it comes to your health-- maybe I should be a concerned whiny patient brat?

I am taking advantage of the library here with the masks. My "DME" is my sleep clinic. I get the impression that I can test what they have in stock and that asking them to order something specific just for me to try out might not happen. When I mentioned hating my mask she just adjusted it and told me it was the best mask for me. They gave me a second mask to try out: Respironics Opti-life? The nasal pillows are super long and narrow. So the width is PERFECT but the length is way too long. I can't get it to seal. I HAVE to wonder what kids use? Probably not nasal pillows.

I've also heard that NEW masks come out at the beginning of the year -- is that true? Should I wait awhile before picking a new mask to try out?

[Sigrid]

Hi,
I want to commend you for being willing to deal with this at your age. Taking your health so seriously takes wisdom and courage. And it is good to pay attention to details in your environment that affect your sleep (including other people (and/or pets) in the same bed/room and their movements, noises, etc, which may wake you) (that's another topic!).

I had similar issues when I first started CPAP about 18 months ago. It helped me to keep the bedroom way cool/cold, loosen the bedding (nothing tucked in), get a cervical support pillow and elevate my head a little, get a hose cozy (fuzzy cover) and a forehead pad from Pad-a-Cheek, and use the humidifier on low only during heating season. I use a room humidifier also, sleep directly on a thick sheepskin for softness, have a sound soother on all night, and keep water and dry mouth spray and hand lotion next to the bed.

Have you considered possible allergies to the materials in the headpiece?

Good luck!

[archangle]

If someone hasn't already mentioned it, get some Lanisnoh HPA lanolin in the nursing mother section of your local drugstore. It helps make the nose feel better, but you may still need different cushions.

[snuginarug]

maybe I should be a concerned whiny patient brat?

Yes, I think you should be exactly that. Acknowledge the yuckiness of it all, but keep on trucking. I am very impressed with your dedication to making this work.

When I mentioned hating my mask she just adjusted it and told me it was the best mask for me.

I could slap this lady. No one can determine what the "best" mask is for you. The best mask is the mask that is comfortable enough to allow sleep, and only you can determine whether it is comfortable. BlackSpinner is right... there are hundreds of choices out there because face shapes and sizes vary so much. You have the right to a mask that is as comfortable as possible. Settling for pillows that make your nostrils feel uncomfortable is not necessary. I believe masks are like true love... the right one is out there just waiting for you, you only have to find it.

When I lived in New Orleans without air conditioning (an insane thing to do!) I kept a spray bottle of water at my bed side, and would spritz myself periodically. I also find that running my hands and feet under cold water helps me cool down quickly. I feel for you about the over heated sleep problems, there is nothing worse than being too hot to sleep.

Keep at it, keep up your good attitude, eventually you will get there.