Advice needed for struggling CPAP user

[Fubblin]

Fubblin what size nasal interface did you try with the P-10. Most people are surprised to learn the larger size is more comfortable, and that the openings on the pillows don't go IN your nose, but rest on the outside. Also, the For Her version is smaller, and comes with clips to adjust the strap size without cutting.

I have tried the small medium and large pillows. The small pillow leaks no matter what position I am in and the large pillow is pretty finicky in the positions I can be in while maintaining a good seal with minimal leakage. The headgear is comfortable for the P-10 and it fits pretty well after my jerry-rig on the strap. The main issue I have is the pain that comes with all size pillows. If the small pillow leaks, wouldn't the for her pillows leak as well?

[trish6hundred]

Hi Fubblin,
WELCOME! to the forum.!
I'm sorry you are having so much trouble getting used to CPAP therapy. Hopefully, you can find something that will work for you.
Hang in there for more responses to your post and good luck to you.

[Fubblin]

Thank you kindly. Unfortunately I found out today from the DME I have 2 weeks to bring up my compliance or I have to give back my Dreamstation, they also informed me I cannot get any supplies until I prove that I am using it. I am hoping I can get my doctor to advocate on my behalf that I am trying. Does anyone have experience dealing with insurance/DME when it comes to compliance and working with the insurance company? I really want to use the therapy but I am afraid 2 weeks is not enough time, especially since I currently have no mask that works for me.

The rough outline I was told today was they would like to see at least 4 hours consecutively for 22 days out of the month with a review happening after the first 60 days of receiving my machine and a return on no/low compliance within 90 days, but my DME has lied to me before so I may just have to verify it directly with my insurance company.

[Sleeprider]

At this point you're going to have to "man-up" and get the hours, or self-finance your machine. This is basic Medicare / insurance guidelines. You can use the machine while sitting around watching TV, or try to get some quality sleep. It doesn't matter but you've simply run the clock down. Most insurance plans and Medicare consider the first 90 days a trial, and will not pay for the therapy unless you show "compliance". You have 3-months to show that in any 30 day period, you used the machine at least 4-hours per day on at least 70% of days. So you need 22 days of 4 hours or more, or they repossess the machine. If you run the clock and don't show this minimal compliance, you are out of the program and not covered. No exceptions.

You need to get over your complaining, and buckle down, or accept that you will pay for your own equipment, or not be treated. Tough love. Quit complaining and do what it takes, or accept that you are one of the 50% of patients that fail.

[Apneaway]

Sounds like the main problem is you can't fall asleep easily. Machine is only good when you are actually sleeping. I'd try to tackle the sleep problem if I were you. I'm surprised you can stay up for that long without feeling sleepy.

You probably have tried taking a hot bath, drank a cup of milk, or listening to music before sleeping.

[Sleeprider]

Tough love didn't work....oh well.

[49er]

Hi Fubblin,

You might want to try the Sleep Weaver Elan cloth mask listed in my equipment profile. It is typically a mask that is recommended but I have found it is the only one I can tolerate.

Supposedly, it is hard to master the leaks but I haven't have had any trouble in controlling them.

Obviously, your milage will vary but what you do have to lose by trying it?

[Fubblin]

I would like to again thank everyone for their advice. I have received a waver of compliance from my insurance company after an extended hospital visit and talking with insurance, dme and my sleep doctor. There was a problem with my prior authorization on my 1 year prescription for a sleep mask. This will give me 90 more days. I went in because I was having heart palpitations and blurred vision. My sleep deprivation is putting a lot of strain on my heart and taxing my immune system which would explain why I have been feeling like i have a fever. I am still waiting on results of my brain MRI.

The doctor at the hospital recommended I be fit for a dental appliance when I see my sleep doctor for the next compliance check up. I will be trying one of the sleepweavers when I next visit the DME.

The 2 days before I went in I tried again to wear the masks while watching TV. The p-10 wont stay in place while upright so that left me with the Dreamwear or Wisp. I alternated the 2 but still could not make it to 4 hours of continuous use due to the pain of the Dreamwear and nasal compression of the Wisp. If the sleepweaver does not work at least I know I can try the dental appliance.

Sounds like the main problem is you can't fall asleep easily. Machine is only good when you are actually sleeping. I'd try to tackle the sleep problem if I were you. I'm surprised you can stay up for that long without feeling sleepy.

You probably have tried taking a hot bath, drank a cup of milk, or listening to music before sleeping.

This is the one area where I have exhausted every option available, I have suffered from these sleeping issues since I was a toddler and the doctors have no more recommendations. The main issue comes down to not being able to fall asleep even when I am exhausted and seeing cobwebs.

[BadGoodDeb]

For the P10 -- yes, there are now clips that'll make the strap be tighter. No, they don't automatically come with the "For Her" mask kit (at least, they didn't in April, tho the clip was still new then). For 10-20 bucks, you can buy them yourself, from one of the vendors in our list up above. [ Well, except that I can't find them anywhere .... ] The "For Her" kit has a *strap* which is an inch or so shorter than the regular one. That might help. $29 at, for instance, #10 on the list. They don't advertise the strap as different in length, but I got two kits side-by-side (by accident) and was able to measure them.

Also, try the lanolin. It's sold in the nursing mothers section of any store; they use it for ease of the nipples (sorry)- brand name Lansinoh in the USA. A teeny tiny bit of that rubbed on the inside edge of the nostrils kept me from having the sores you refer to. It is much thicker than the AYR gel (which is water based) so it also kinda sticks to the mask and provides a seal. Yet, it isn't petroleum based, so it won't harm the vinyl of the mask.

Re hours: the machine only *helps* when you are asleep, but I think you can get "compliance hours" in while you are awake and watching TV or something. That might also help adjust you to the mask too.

Glad to hear they've finally acknowledged you have a problem, and have given you more leeway with the time frame.

[Fubblin]

I will try lanolin, the AYR didn't work any better than my homemade saline solutions. I am also going to pick up some cloth medical tape tomorrow as well to try on my Dreamwear (I want this mask to work so much). I have adjusted my P-10 strap with another Velcro strip, so far it is fitting well while laying down but I can't get it to stay in place while sitting upright without it being too tight and hurting my nares. Progress has been made, at least it does not leak even when I tossed and turned for several minutes testing.

Here goes night #1 with the newly fitted P-10.