In tears at 4am...tossed the mask

graygables · Post by **graygables** » Sat Jul 19, 2008 12:15 pm

and cried myself to sleep. I'm not customarily an emotional wreck, but this whole CPAP thing is making my life worse, not better. I have 2 masks, the ComfortLite 2 (paid OOP) and the Opus 360 (DME provided). The CL2 slips and slides all over my head, despite trying all the suggestions. I've tried both the pillows and the simple cushion and they leak. The Opus is a bit better for the slipping, but the pillow has a funky smell that I can't get rid of for anything and it has developed a whistle. I can't sleep with ear plugs (long story, special needs child). It also has begun leaking whenever I move. I'm awake either listening to the dang thing or adjusting it. Finally at 4am after getting NO sleep and being exhausted, I couldn't get the leaking on the Opus to stop for anything, so I flung it. I'm a side sleeper for the most part, but also very active, toss and turn a LOT. Every movement dislodges the mask, whether it is the pillows or the simple cushion.

There has GOT to be a better way.

bap40 · Post by **bap40** » Sat Jul 19, 2008 12:26 pm

I feel so bad for you. I think maybe you need to try more masks. I know that sounds like no fun, but mask's are the key to this treatment. I have had no luck with opus at all. There are so many variables in this treatment. Before we moved I was a daytime and occasionally a nightime care giver for 3 of my friends special needs children so know how time consuming and exhausting days and nights can be! You will benefit once you can get yourself to a point of using equipment nightly.

Good luck!

Babette · Post by **Babette** » Sat Jul 19, 2008 12:40 pm

I agree with Brooke. It IS HELL until you can find the right mix of interface and pressure that works for you.

I'm so sorry. We've all been there. Go ahead and cry, we're here for you.

I LOATHE the CL2. Never got it to work decently for me.

Keep trying. And go sell that stupid CL2 on CPAPAuction.com or swap it here on Mask Roulette and get something else!!!!

Huggers,
Babette

Goofproof · Post by **Goofproof** » Sat Jul 19, 2008 12:43 pm

Time for a frame of mind change, from "Can'ts Ville" to "Can Ville". The only good thing about you not using your XPAP Treatment correctly is you won't have to worry about it as long. It's not a biggie after you decide to make it work. Jim

DreamStalker · Post by **DreamStalker** » Sat Jul 19, 2008 12:51 pm

Maybe you are having hose routing issues.

Try supporting the hose from above your head, that should help with mitigating of springing leaks.

Also make sure you install the pillows in the Opus 360 frame correctly or you will indeed get whistling and leaks.

Also consider looking into SleepGuy's PAP-Cap. Although it doesn't seem to prevent mouth leaks for me, it does have a lot of potential for use as a stable headgear platform for those having issues with headgear that slides around and doesn't want to stay put.

Don't give up, having to deal with the effects of stroke or heart failure will likely be much more difficult than PAP treatment (that is if you survive the stroke/cardiac arrest).

graygables · Post by **graygables** » Sat Jul 19, 2008 1:03 pm

Thanks, everyone. I do know how important it is (had a friend who died from complications of OSA ) and I also know much of it is a mind-over-matter thing. I am determined to get it right, it was just a really bad time last night. I've got to do something about the funky smell, maybe I need some pursleep to help it (I wash and wash and it won't go away) and I also PMed SleepGuy about the pap cap to see if he thinks it could stabilize things. Maybe we need to get the Dyson guy to work on a mask...

thanks for the suggestions...I really am trying to get this right. My kiddos need me around for awhile yet.

Babette · Post by **Babette** » Sat Jul 19, 2008 1:26 pm

I am reminded of that song "Don't give up":

https://www.youtube.com/watch?v=L-p2sbt_C4w

For all of you newbies. Don't give up. You still have friends.

Huggers,
B.

Insomniyak · Post by **Insomniyak** » Sat Jul 19, 2008 1:58 pm

Graygables,

Wash the mask/pillows in 3:1 solution of 3 water to 1 distilled white vinegar, then rinse in water and baking soda to get ride of the vinegar smell, wash and rinse the mask/pillows in dish soap and water, then if you want put drops of lemon juice in the pillows.

I was given a swift LT pillow by someone and apparantly a cat pee'd near it, these things worked.

Definitely place the hose over your head board or put up a plant hanger that swivles. Other thing is a pillow. Alot of people here use pappillows, personally I went to Big Lots!, and for $12 got me a memory foam contor pillow, allows mask to hang over side while keeping your head contored.

Don't give up. I am experiencing exhaustion after 3.5 weeks but I am thinking it is more because I am catching up.

GOOD Luck!!!!

Needsdecaf · Post by **Needsdecaf** » Sat Jul 19, 2008 2:32 pm

1. Been there, done that (minus the tears).

2. HOSE MANAGEMENT! Make sure your hose is suspended from something. Cheapest / easiest is a plant hook on a bungy type cord. I made my own stand out of $5 of PVC hose.

3. Opus tips:

a) Add lower straps to stabilize. Route them from right where the mask and plastic meet to the spot where the straps hook into the back of the headgear. This really helps.

b) adjust the pillow spacing: In know that the medium pillows fit me the best, but they are still too wide apart. I loop a piece of dental floss tied in a slip knot around the lower stems of the pillows. This pulls them together to tighten the spacing and makes them fit my nose better. You can tell if this will help by pushing the pillows in with your fingers.

c) Enhance pillow seal: use Ayr saline gel on your nares or even better, roll a very flat piece of Mack's silicone ear plugs on the pillows. This really helps me.

Hope this helps!!!

yorkiemum01 · Post by **yorkiemum01** » Sat Jul 19, 2008 4:56 pm

Try supporting the hose from above your head, that should help with mitigating of springing leaks.

This was vital for me as well, as gravity felt like it was pulling the mask
off,not to mention the noise, as I have my machine at bedside on a step stool (low to the ground)
Now this is going to sound tacky, but my home-made version came one night at 2 am when it was on my last nerve. I grabbed a new
tube sock, end cut off, and fed the house over my headboard through the sock, which I duct-taped to the headboard. Now, its quiet and moves smoothly as I toss or turn.

Hang in there...it does get better.

WearyOne · Post by **WearyOne** » Sat Jul 19, 2008 5:02 pm

All the suggestions here are great, I just wanted to add some empathy with the 4 a.m. thing. I've been on cpap for about 18 months. I still remember some nights (rather mornings!) in the first few months still being awake at 2, 3, 4 a.m. going though one mask after the other, heaving them across the room at the dresser and just bawling!

It WILL get better. I know masks are expensive, but once you find the right one, it will be well worth it.

Pam

graygables · Post by **graygables** » Sat Jul 19, 2008 7:36 pm

Thanks all, for the continued suggestions. I did take try the vinegar/dish soap thing, but it didn't do it. I have a really weird thing about smells as it is and this is just FUNKY. I took a whiff of the small pillow I have and it doesn't smell like it at all. So, I tried another cleaning product I use called Diva Wash and it worked great! It's got an orange essence in it and it seemed to do the trick. I'll keep it up and see if that gets the funk out.

We have a tapestry over the bed, so I hung a ribbon from the rod and strung the hose through that for the night. I tried it with the hose connected to the top of the Opus headgear, but it doesn't move properly there (they need to put a swivel on it at that point), so I unhooked it again, so hopefully it will help.

Still don't know what's up with the whistling (and it's a high-pitched annoying whistle). It just randomly starts. I'll have to see how it goes tonight...

thanks again for the tips...I'll let you know how tonight goes!

Babette · Post by **Babette** » Sat Jul 19, 2008 11:03 pm

Oh honey, I was wondering if you were male or female, and NOW I KNOW!!!!

Honey, you can usually sterilize your cpap mask just like you do your Diva. Try boiling it for 5 minutes. Watch it and make sure it doesn't boil dry.

Silicone is silicone - it all takes boiling very well.

Thanks for the good laugh!!! I just sold my Diva - I ended up at Urgent Care trying to tell the Doc in a Box what was stuck in side of me and what he had to do to remove it. I'm clearly NOT a Diva Girl!

LOL,
Babs

Guest · Post by **Guest** » Sun Jul 20, 2008 12:31 pm

The random 'whistling' maybe the exhaust port too close to the pillow or something...everytime you turn this-way-or-that.
I'm a frequent turner at night, useing the Breeze, hose hung over the headboard and the velcro strap slung low up front.
Hope you can find the right mask, too.

Mike B · Post by **Mike B** » Sun Jul 20, 2008 7:14 pm

Hi, I have also suddenly started getting whistling noises. I thought it might have something to do with the change in temp as it’s the coldest time of the year in Brisbane which isn't very cold. I have tried adjusting the humidifier settings down and upwards and confusingly both seem to work for a time. I have also had some success with rubbing the air vents with my hands to get rid of excess moisture and also blowing through the tube. I had great difficulty at first but feel a lot better for persisting.

In tears at 4am...tossed the mask

In tears at 4am...tossed the mask

Whistling noise