I am DONE With Stupid CPAP! :(

[DoriC]

I believe you can exchange masks from the DME for 30 days or sometimes more until you find the right one. My husband is on Medicare and we tried about 5-6 masks in the beginning. DME wasn't too happy but so what! Can you check with your ins.co? It's your therapy. Also we found out pretty quickly that any mask that has Comfort in it's name isn't. For some reason, probably cost effectiveness, the Comfort Gel or ComfortFull are the ones they push the most, but if you can try the Mirage QuattroFF or UltraMirageFF, you might have better luck.

[Karla1958]

I don't have insurance. I had to pay cash for my mask. The Bipap autoSV was donated by the manufacturer but the DME made me buy the mask outright. That is why I wonder if they will replace it. They didn't even give me a receipt, but I didn't notice until I was home.

[talktobon]

Please don't give up. I'm a two month old newbie and have just ruptured my eardrum from CPAP. I'm still trying to fix underlying conditions and haven't begun to work on my leakage issues yet. If you're already there, you're ahead of me! I've read about the gas problems, sinus issues, GERD, etc that are aggravated by this. If you don't have any of that going on, you're ahead of the game. I'm going to try to catch up to you.

A friend of mine got diagnosed with sleep apnea 10 years ago after severe memory loss from it. She was depressed and went on disability. Her memory is still terrible--I've got her example as an incentive to keep me going. She's also encouraging me quite a bit. She had so many difficulties at the beginning, too, but she said she'd be in an alzheimers unit now in her 40s if she didn't find a way to make it work.

Keep going! Good luck.

[ThomasMcKean]

Now my cats wake me up when there is an air leak. I guess the noise bothers them and their sleep. So I'm getting LESS sleep than without it. This is just nuts!

Karla

If there is one thing to take away from this entire thread, from beginning to end, it would be this, Karla:

Welcome to the club.

[SharkBait]

I've come to understand and feel y'all's pain as I try to make it a full night with a FFM. I've got a Mirage Liberty and a F&P HC432. They both seem to be real nice when I try them on and are great for naps, but I've yet to make it a full night with one of them. I always end up back on the Swift LT nasal pillow mask. I could wear the Swift LT 24 hours if need be, but the FFM, I've yet to top 4 hours.

[Karla1958]

Why can't one of you brilliant people develop a mask made out of all gel or all foam... Or one you can dunk in hot water and form to your face... just something soft and squishy and not hard and cold... Who ever thought we would have to sleep in a mask like a fighter pilot? That just doesn't make sense. There has got to be an easier way or a more comfortable way. I wish I could do the nasal thing, but I'm a dreaded mouth breather... sounds like a disease or something... But it's because I have buck teeth that my stupid parents didn't think I needed braces for (or they were too cheap the get them for me when I was young.) Does anyone else have problems with their TMJ because of their masks? I've had TMJ problems since the 1980's (dislocated on one side, adhesions on the other) and it's been pretty good because I take pain meds for my bad back, but with the mask on at night my TMJ is just hurting again.

I noticed last night that my headgear just doesn't fit me right and if I fold up the bottom by one fold, the mask fits better all around. Like I said before, my head is a weird shape! I'm a freakin' freak! But after a few hours of sleep-well,maybe a full hour, the headgear folded back down and I woke up with my mask leaking like crazy again. Then I tried to adjust the velcro again and that didn't work. I woke up this morning with my mask in my mouth choking me! I need a chin rest! That's it! I just can't adjust the straps on the headgear enough to keep this thing in place! Crazy, just plain crazy! I'm so tired and frustrated. Sorry for the whining... and more whining. But whining is all I can do to keep from crying my eyes out! I can't believe I had such wonderful luck getting an expensive machine donated and now because of the darn mask I still can't sleep. GRRRR! Sorry I keep on complaining!

Karla

[SharkBait]

As long as I can breathe thru my nose, I'll continue to tape and use the Swift LT. If you're concerned that you'll "die" in the middle of the night, simply get a fairly inexpensive UPS that will beep at you when the power goes out. If you have a Respironics, then plug her in and you'll have both an alarm and power backup. Resmeds, if I understand correctly, should not plug in but you'll still have the alarm.

Nasal pillows make CPAP an absolutely breeze and if you're having trouble with masks I'd do whatever I had to to get on these things.

My Recipe:

• Nasal Pillows
• Lanolin
• 2" Micropore tape
• Respironics chin strap holding it all together
• 8 plus hours a night of carefree therapy

YMMV

[DoriC]

I'll try to explain what I did with my hubby's headgear which was also too big in the back. I bought a box of velcro One-Wrap, they come in a box of 4 straps 36"x1". I cut a piece off one enough to wrap around the straps on the back not too tight but just to take up some of the slack, sort of like an extra strap across. It fits well now, no slipping and sliding. I bought it at Walmart but I'm sure you can buy it in any hardware store.

[goose]

Hey Thomas....
What's your insurance situation?? What's your DME choices?? Do you have choices??
Reason I ask is the CG FF mask you say is heavy and clunky....My DME is in bed with Respironics and ResMed - the "Big Two" so if I want something not on the shelf they wiggle and whine that it's a special order item.....I just tell 'em I really don't care, order it and I'll wait for it.

Also keep in mind that DME's can return masks to the distributor for replacement at no cost, so don't ever let them tell you that you don't have choices. Leverage your insurance. Play both ends against the middle if you need to. Engage your doctor in the process if he/she is agreeable. The doc should be helpful - he/she's given you the prescription, so they have an interest in getting your treatment right. Use any leverage you have!!!!

Anyway -- If that CG doesn't work in a week or so, get on the DME's butt and let them know you need something else as it's not working. Needing a FF mask, ask for a Quattro - go in and fit it at their office. When you fit it, lay down on a bed with a pillow. It may seem to work standing up, but you don't sleep standing up.....do you?? Don't let them rush you!!! If it doesn't seem to fit right or it leaks a lot or you have to crank it down a lot to make it seal - try a different size!!! It's your treatment so you need to let the DME know that you are in charge -- not them. You will tell them when it's comfortable, not them (how the hell would they know anyway!!!!).
Dude - you can do it!!!! Perseverance is the word to keep in mind all the time. With the help you get here you'll soon, if not already, know more than the DME's about what's going on. Once you're comfortable with all of that, you'll be calling the shots without hesitation.

Keep at it!!!! And keep letting us know how it's going!!!! We're here for ya.
Take care
cheers
goose

[mare (night)]

...... Although you are not likely to die in your sleep (it does happen, however, just ask Reggae White about that) .......

I asked him. He did not answer.

Who is reggae white and what is that about?

[grandmma]

Thomas, ditto all the above. More often than not, the correct mask is the key to the whole CPAP puzzle. It is your life, your therapy - MAKE it work for you! After advice on this forum as to my rights, I tried what must have been a bakers dozen of masks before I settled for two that work more often than not. I've a narrow long face apparently, so the masks are difficult to get right.

For some the mask resolution is permanent, for others such as myself it changes weekly, sometimes daily, and what fittings and adaptions work one night won't the next. Part of the puzzle, challenge, and quest to 'wake up still breathing'!

Use the ear plug trick mentioned above, legs of tights wrapped around to secure, velcro, pins, chinstrap, polident strips - whatever it takes, but MAKE it work. Otherwise, as someone above said, sadly enough you won't have to suffer for long.

[Karla1958]

I finally got a different mask from my DME! I got a Ultra Mirage full face mask. It fits so much better than the Comfort Gel full face mask! It's amazing how well it fits. Here is my question of the day...
Does the DME supposed to provide samples to try on and then give you a new mask? Or are you supposed to take the mask that has been used as the demonstration model? I went yesterday and the DME would not open any new boxes of masks and only let me try on the few returns/demo models and then she gave me that demo model as my mask to take home. It had clearly been used before because there was make-up stuck to the mask seal. Kind of creepy to me. And why would I have to take a used mask?? I paid for a new mask for the first one, but that was already open too when she showed it to me. I don't understand. And she only had one or two masks that were in medium and the Quattro wasn't one of them. I even asked and she said she didn't have any samples of that one for me to try on in my size. Shouldn't I have been given a chance to have a new one? Or is this how it's done? She did say that if she opened a new box with a new mask that she couldn't resell it, but that is what I got. Weird. I'm confused because now I don't know if they are straight with me or not and I think I initially paid good cash for a used mask or a demo mask. And I know the exchange mask had been used because it was dirty. I made sure I washed it before I used it last night. That Ultra Mirage mask is a pain to wash. Why can't they just make them out of anti-bacterial plastic like they do other things now. That would make me feel so much more secure! I'll admit it too that I have a germ phobia. I am happy that this new mask fit well, and I won't be replacing this one, but I am weirded out that I am buying used equipment at full price (especially when the masks show visible signs of other people's make-up! I think they should at least wash them before giving them out again. Don't you?)

I know, I'm always a pain in the patoot! Sorry!
Karla

[Jim Arakaki]

Dear Thomas, please don't give up, your life may be at stake. Get your supplier to help you fit a mask and keep trying until you get one that you can use. When I took my sleep test without the mask my oxygen level was 1/2 of what it should be, over a prolong period I could have been in bad trouble. My doctor advised me not get an operation but to use my mask every night because an operation is not guaranteed to succeed and there is a lot of pain. I know of people who gave up on the CPAP and expired too early. I am in the funeral business and I feel for people who gave up on life. Please hang in there and live.

[DoriC]

Karla, this doesn't sound OK to me. We changed masks several times at the beginning and always got a new mask in a sealed wrapper. This is medical equipment you're using and I would imagine DMEs are required to follow certain sanitary regulations by law. Go back and get a new mask and speak to the manager or whoever it takes if necessary. You're the customer.

[goose]

To answer a question a few posts back.....
Reggie White was a hall of fame professional football player that died from "sleep apnea". Google on "Reggie White" and you'll get more info than you really wanted!!!

He was a GREAT football player!!!!!
cheers
goose