Tired of Cpap

Dolphin · Post by **Dolphin** » Fri Aug 03, 2007 3:30 am

A.K.A (Carol) It's been a week today and I am already sick of having to use Cpap. I wake up an 1hr or 2 early, my back aches from the neck all the way down to tailbone, AND the bridge of my nose is still not healed from 1st few days of wearing nasal mask.I now use moleskin for protection. I once looked forward to going to bed BUT now I dread it.

P.S Any suggestions on reading material to learn more about sleep apnea. I am reading one now titled "Snoring & Sleep Apnea".

gill · Post by **gill** » Fri Aug 03, 2007 4:11 am

Hi Dolphin, I used to feel the same way about going to bed. I've been on cpap since January this year. I would say it's taken me 6 months and 7 masks to finally get it right, and feel better, but I must stress that I am now feeling so much better, and I wouldn't sleep without my machine now.

Hang in there, it really does get better!

Gill

TerryB · Post by **TerryB** » Fri Aug 03, 2007 4:59 am

Dolphin,
I had a tough time of it for the first weeks. I think there were two major problems.
1. Waking fully to adjust the nasal mask for leaks. Apnea causes a minor arousal which is bad for you, but a complete arousal to mess with the mask is much worse IMHO.
2. Leaking air out my mouth meant I wasn't getting good treatment either.

Now I use a chin strap and lip adhesive to stop leaks and a nasal pillow mask which has almost no leaks. I also use Pur-sleep oils which seem to help me got to sleep and stay asleep during the night.

It CAN get much better IF you identify and fix the problems. This forum is full of folks who want to help and CAN help.

Good luck,
TerryB

Slinky · Post by **Slinky** » Fri Aug 03, 2007 5:27 am

Have you taken advantage of the wealth of information behind the big yellow lightbulb at the top of the page? And behind the big red ball w/the question mark?

Have you given any thought to just WHAT it is that could be contributing to your difficulties w/CPAP and the mask. Try to pinpoint just what problems you're having.

Regarding the bridge of your nose from the mask: 1] is usually we have a tendency to tighten the headgear straps too tight. 2] don the mask slightly lower on your nose than where it is most comfortable, then slide it UP slightly to where it should be. Sliding it up turns the edges of the cushion cover UNDER so they aren't cutting into the facial skin whereas sliding it down, even a little turns those rather sharp edges into the skin. 3] lifting the mask SLIGHTLY away from your face and letting it fill w/the pressurized air from the CPAP before letting it fall back down gently on your face allows for a better seal and reduces leaks. 4] does your mask have an area for adjustment of the angle between forehead and bridge of nose, some masks do.

Have you tried just sitting down during the day or early evening and reading a book, watching TV, knitting, crocheting, doing crosswords, etc. with your mask and CPAP turned on? This helps you adjust to wearing the mask and the pressure from the CPAP while you are distracting your mind from them. It makes adjustment easier than just laying there at night in the dark w/nothing to think about or concentrate on but that mask on your face and that air blowing in your nose.

Are you aware of what apnea can do to your body, your organs and your health over time, over the long haul? Are you willing to continue doing damage to them by NOT treating the apnea? Do you prefer to wait until the damage is done and then try to undo the damage?

Guest · Post by **Guest** » Fri Aug 03, 2007 5:32 am

"Baby steps".

Try to focus on one night at a time. Pretty soon a month or a year will have passed.

We've all had our peaks and valleys in our therapy.....you're no different. It's rather daunting to be in the first few days/weeks and think "I gotta do this for the rest of my life???" But, after a period of time, you won't be able to sleep without it.
In all honesty, after my first week, I took a night off......OOPS.....mistake.
Then, about 2 weeks into it, I came down with a cold and horrible cough and I couldn't use it for 10 nights. HOLY CRAP!.......was my butt draggin' by the time I could keep it on again. That first couple of months was my "compliance maker". I came to look forward to sleeping with it on.

Best wishes,

Den

Sleepdeprived · Post by **Sleepdeprived** » Fri Aug 03, 2007 5:54 am

[quote="Dolphin"]A.K.A (Carol) It's been a week today and I am already sick of having to use Cpap. I wake up an 1hr or 2 early, my back aches from the neck all the way down to tailbone, AND the bridge of my nose is still not healed from 1st few days of wearing nasal mask.I now use moleskin for protection. I once looked forward to going to bed BUT now I dread it.

P.S Any suggestions on reading material to learn more about sleep apnea. I am reading one now titled "Snoring & Sleep Apnea".

itchysmom · Post by **itchysmom** » Fri Aug 03, 2007 6:32 am

Hi Carol. Hang in there, my first couple of weeks were miserable and I was so disappointed because I'm a nurse and I know what this is doing to my body.

I now have a greater understanding and compassion for my patients who are non-compliant with their therapy and it helps me in educating them and advocating for them to get what they need to be compliant with their therapy.

One suggestion I can make for you is to try SleepGuy's Pur-Sleep. I cannot tell you how much using the essential oils has helped me with my therapy.

Also, as others have mentioned, try different masks. There are so many options out there. I personally like the nasal pillows. I can't stand the full face masks, they just wake me up all night and sometimes make me feel panicked.

I am not prone to claustrophobia, but masks make me feel claustrophobic. You might want to give nasal pillows or prongs a try.

If my nose is a little stuffy before bed, the "Clear" pur sleep oil really helps with that and I have little trouble falling asleep now.

Also, take Slinky's advice about mask fitting. Heck, I don't wear a mask, but my patients are often on our hospital bipap machine and I use his suggestions to keep their masks from leaking!! Slinky is one smart cookie when it comes to masks!!

Don't give up please...just keep experimenting and you'll get to the point where you appreciate your little machine.

KAZ · Post by **KAZ** » Fri Aug 03, 2007 7:20 am

Hello and welcome Dolphin. Untreated SA in my case led to an always exhausted condition that led to uncontrollable weight gain. I finally collasped and only some great Docs and big bucks saved my life. I came home from the hospital with a trachea tube and requiring a walker to go two steps. With my machine(BIPAP, pressure 20) and my FFM(no marks,leaks,pain) I now sleep all night and walk several miles each and every day. The excess weight has been falling of and I am no longer prediabetic. I share my story again because I don't know how SA has affected you, but I urge you to press on with until you find the proper equipment to be compliant. Regards

DreamStalker · Post by **DreamStalker** » Fri Aug 03, 2007 7:51 am

I don't know what it is about me but I always access all the possible options/alternatives when making major decisions ... especially when I have the time to do so.

When I was diagnosed with OSA I learned that it was not only the cause of my exhaustion and weight gain but also a short road to the grave with heart attack and stroke. So I guess that made it easier for me to start and continue PAP treatment.

It's a matter of personal priority, life is hard but our organsism is naturally attracted to the easy way of life. Fortunately we have a brain that is capable of accessing our options/alternatives and deciding how to prioritize those options/alternatives ... aren't we the lucky ones?

As for backaches and other uncomfortable side effect of PAP treatment, time allows the organism to adtapt to the new lifestyle ... hang in there.

Dolphin · Post by **Dolphin** » Fri Aug 03, 2007 11:43 am

Thank-you everyone for responding to my concerns and your encouragement. I know this is a lifelong treatment and I'm only a week into it. I will not stop using cpap just b'cause I haven't adjusted to treatment or the mask. I was to the respiratory therapist and showed her how I put on the "nasal" mask and right away she said it was too tight. I will try loosening it up a little and see how I do over the next week or so. BUT be assured I will not stop using cpap, just need to find right mask for me!!

Thanx again to all who replied.

oceanpearl · Post by **oceanpearl** » Fri Aug 03, 2007 11:47 am

[quote="Dolphin"]Thank-you everyone for responding to my concerns and your encouragement. I know this is a lifelong treatment and I'm only a week into it. I will not stop using cpap just b'cause I haven't adjusted to treatment or the mask. I was to the respiratory therapist and showed her how I put on the "nasal" mask and right away she said it was too tight. I will try loosening it up a little and see how I do over the next week or so. BUT be assured I will not stop using cpap, just need to find right mask for me!!

Thanx again to all who replied.

rested gal · Post by **rested gal** » Fri Aug 03, 2007 12:10 pm

Hi Carol,

What pressure range (minimum/maximum) is your autopap set at?

Ask your therapist if she will do you two favors:

1. Download your Smart Card now, and print out the pages for you from the "Full Details" report...not just the Summary or Trend report. If she wants to know why you want her to do that, it's because you want to look at the "Daily Details" graph showing the leak rate.

If she says she can't download the card until a month is up, ask her why not. If she says it's because the data would be erased after the download and that they need all the data from a full month to be on the card when they finally download it (to prove "compliance" to your insurance company) tell her there is a setting in Encore Pro that can be changed so that ALL the data stays intact on the card no matter how many times it's downloaded.

If she doesn't know how to change that setting, she can find the instructions here -- or you can print them out for her ahead of time, to speed things up:

viewtopic.php?p=191913

2. Ask if she will loan you a nasal pillows mask...either the ComfortLite 2 or the Swift 2....or the Breeze (if you sleep mostly on your sides and don't sleep on your back.) Any of those would give the bridge of your nose time to heal with no mask pressure of any kind pressing on it.

Neither of those things are too much for a DME to do to help you get your treatment going more smoothly. Hope she will cooperate with you.

Here are some links to lots of mask topics:

LINKS to MASKS - nasal mask, nasal pillows, nasal prongs
viewtopic.php?p=35286

The mask is going to be the #1 biggest piece of the puzzle to "get right" in order to do this kind of treatment comfortably enough to let you sleep. So pursue the mask issue all you can, even if you can't get the Smart Card downloaded.

RAINSUX · Post by **RAINSUX** » Fri Aug 03, 2007 12:47 pm

Carol, hang in there! It is already working for you, proven by the fact that you are getting your "normal" amount of sleep in 1-2 hours less time. The back pain will go away before long as your body gets used to whatever is causing it. With the help from this group you will solve the mask issue. It's ok to remove the mask when you're having a "bad" night, resolving to try something a little different to make tomorrow night better. Hang in there!

Sam

itchysmom · Post by **itchysmom** » Fri Aug 03, 2007 12:49 pm

RG, I don't know what all of us newbies would do without you!! You are such a wealth of information!!

andyomega · Post by **andyomega** » Fri Aug 03, 2007 5:41 pm

WoW, thats how I felt when I first began using CPAP. Eventualy I stopped using it alltogether and tried an oral appliance.

I got a smart APAP machien with dual pressure for exhaust and intake.
Its alot quieter and I eventualy found a good mask after 3 tries.
I now look forward to strapping it on and going to sleep because I do feel better than before.
Do not give up.

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