F&P Pilairo Q Nasal Pillow -Switched to DreamWear

[Guest]

Yes, I think you should make an appointment and have someone help you with mask type, size, and fit.

[moonslice]

Hello mysterious "guest." Are you my DME, and you've figured me out

Anyone else think their supplier stalks them? Probably totally made up in my head.

[Jay Aitchsee]

I guess I can just make an appointment and take everything in with me and see what happens

Yes, I think you should make an appointment and have someone help you with mask type, size, and fit.

Hello mysterious "guest." Are you my DME, and you've figured me out
Anyone else think their supplier stalks them? Probably totally made up in my head.

Nope, nothing quite so nefarious, just me agreeing with you in a posting from another computer

[moonslice]

Jay.

I have an appointment on Tuesday. If they don't have the AirFitP10 pillow, is there another one that is recommended, or should I just insist. Not sure if they carry all. They probably do have it.

Also, in case I end up staying with Dreamwear, I'm wondering if you wash the inside of the headgear. It really seems like you'd not want to since it looks like water would get caught in there. I wash the cushion and I wash the humidifier tray. That's all I've been washing. I haven't washed my hoses or done anything with my filter. I need to dig out that sheet they gave me that says when to do what.

Right now, it's the same story, I wear the mask for about 40 minutes and wake up and take it off. I don't know if it's because I'm trying to turn over or what. I know it leaks when I sleep on my side.

I have a weird feeling in my throat like it's swollen or something and I keep coughing in mornings. Husband said I was snoring badly this morning. I'm wondering if it's because I had wine last night -- not even a full glass though.

Happy Saturday.

PS- Leaving on my trip on the 12th, so need to get the medical alert tag laminated/turned into luggage tag for the bag if I'm taking it with me. Still haven't decided. Any tips on getting that done? Weird that it doesn't already come like that. I just got a xeroxed piece of paper.

[Jay Aitchsee]

I don't wash anything but the cushion. Not the hose, or the mask frame, or much else, for that matter. I wash the water container once in a while and I wash the headgear once in a while. I have never washed a hose. I don't think there's a need to. I get a new one every couple of years, or so.

I have traveled frequently with my cpap in it's original ResMed bag as a carry-on and I've never bothered to print a med alert tag. Most TSA recognize it by the bag and I assume flight crew do as well since none have ever mentioned me having too many carry-on bags. Although, I can see the benefit of it to calm other passengers who might otherwise think you're getting away with something Most people recommend carrying rather than checking your CPAP.

Masks are such an individual thing it's hard to make a recommendation. The ones that have worked best for me are the P10, and the Dreamwear, nasal masks and The ResMed AirfitF10, Quattro Air, and the Simplus full face masks. You need to try the mask at the DME to see if its going to work for you. Lie down with it on and pressurized. If they don't have a bed, see if they have a sofa. Take your Dreamwear with you and make the DME tell you why it's leaking. Make them earn their money.

As far as taking it with you on your vacation, I couldn't imagine going anywhere without mine, but If you're only going to wear it 40 minutes a night...

Snoring badly probably means you need to be wearing your mask

And a Happy Saturday to you, too

Edit: You might find your sleep lab to be a good resource for finding and fitting a new mask. They reuse masks after sterilization, so they don't mind getting one "dirty" trying it out. They usually don't have patients during the day so they might be able to see you. They also get replacement masks fairly frequently, so they might just give you one they're about to discard. I've been to my labs a couple of times and they were eager to help. It's not really a medical procedure, the lab is just offering assistance, so there's no scheduling, payment, or insurance involved. Give the Lab Supervisor, usually a Respiratory Tech, a call and ask if someone might help you with fitting.

[moonslice]

I just got back from my appointment and I'm upset. They didn't bother explaining to me when I took home the Dreamwear that it was the only mask exchange I'm allowed. Might have been nice to have been told that! I was under the impression I could keep swapping it until I found the one that works for me. I wasn't going to get 10 or anything, but a second swap is not unreasonable.

She gave me a used ResMed AirFit, but I'm freaked out about using one that has been previously used. She said it might have just been for fittings, or in the sleep lab, or maybe a return. She said the nasal pillow was new, but I didn't see her open the package. She admitted to splitting packages too, but I suppose they give the other sizes to people who need them. So the pillow I got came from someone else's package who needed a large.

Anyway, I got to keep the Dreamwear since they won't do another swap, and the used one was just given to me. When I left she said, "Some people this just doesn't work out for."

She couldn't explain why I felt so much more air on my side. She said it's a frequent problem with the Dreamwear.

Last night I took an Ambien and used the chin wrap. I woke up at some point with the chin wrap and the headgear on my stomach. I had disconnected it in my sleep, not really an easy thing to do. I have no memory of taking it off. I guess I could try again with the Ambien and no chin wrap. I was thinking maybe the chin wrap would solve the waking up issue.

I slept 2.3 hours with the cpap last night, the longest on record, but that was only because I had taken an Ambien.

I've been having big problems with insomnia, and when I do get to sleep, I wake up with breathing problems. I feel like I'm in a downward spiral and I have no other choice but to go back on HRT. I'm willing to risk blood clots and cancer, etc. If OSA is more common in menopause, then HRT must help it. Besides, I know it will get rid of my insomnia, as it did before. And my freaking hair is falling out, and I've been unable to find a medical cause. Maybe the HRT will make that problem go away.

Is the AirFit headgear machine washable? The used one I was given has makeup stains on it.

[Pugsy]

Yes, the AirFit P10 nasal pillow headgear is washable. All parts are washable. I just go through washing mine not long ago.

[moonslice]

How did you wash it? Is it MACHINE washable?

[Pugsy]

I have washed the stretchy part of the headgear in the washing machine but I wouldn't wash it with the frame attached. The stretchy part will come off but it can be a pain until you figure out how to take it off and put it back on.

I mainly just hand wash all my cpap stuff in really hot soapy water and rinse well. I don't even bother to soak it. Then lay out to dry. Have been known to take outside and hang on the porch to hurry up the drying process.

Your DME should have explained the mask swapping thing clearly up front.
Most of the mask manufacturers have a 30 day return policy PER mask and they will reimburse the DME for returned masks but the DME has to do extra paperwork so many come up with their own in house policies like 1 mask swapping allowed or 30 days or whatever. They are just lazy though and will blame your insurance when in fact it is their laziness...they won't lose money...the mask manufacturers will give them credit for any returned mask.
Some DMEs will do the extra work or they develop a different in house policy that isn't so stringent.
Mine allows 60 days and I can swap for any number of masks within that 60 days....and even now I can do it as it is not tied to when I started therapy.
Some DMEs only allow newbies to therapy that 30 day swapping time and won't allow cpap veterans to even make one swap.

[Jay Aitchsee]

I'm sorry your appointment turned out so lousy, but it's something many of us have faced. After the initial outfitting, we've ended up pretty much on our own.

As Pugsy says, most everything is washable, I wash stuff in the sink making some sudsy warm water with Dawn Detergent, swish the stuff around pretty good, rinse, and then let air dry on a towel. I'm sure the equipment you got today will be OK to use after a good washing.

I can't advise you on HRT, but I'm sure others might be able to offer opinions.

Insomnia's tough. Did you read Roby Sue's posts? I think Pugsy sent you a link. About the only advice I can give is to be particularly strict in adopting the practices of Good Sleep Hygiene and try to stop worrying about things that have to do with sleep, like sleep itself and all the things that go along with CPAP treatment.

Many people do unconsciously remove their masks at night. Some have resorted to placing a piece of tape or something over the frame to wake them, if they try to take it off.

I would consider a short course of low dose ambien, 5-10 mg for a week or so, while trying to adjust to the treatment. Low dose Ambien, in my opinion, is fairly benign, but I think it's rather easy to become habitualized to it. In low doses, it most often doesn't produce a drug hangover and the sleep it does allow seems to be restorative. Unfortunately, it has a short half life so it usually only lasts for about 4-6 hours, but some sleep is better than none.

If your insomnia doesn't improve, you may have to seek professional help.

I wish I could offer more.

Here's a link to the P10 manual in case the DME didn't give you one: http://www.resmed.com/us/dam/documents/ ... er_eng.pdf

[moonslice]

Pugsy, yeah it IS difficult to remove from the frame. I broke a nail doing it. Your response has me wondering whether a different person at the same place might allow me to swap it. I wonder what they'd do if I just returned the whole thing to them and said I'm going with a different DME. Did I mention that they never even brought that option up after my sleep study? I woke up and was handed a piece of paper with my premade appointment with the DME affiliated with them. I know I have several others I could use, but this one is close to my house.

When you buy online, you can't use your insurance benefit, correct?

Jay, thanks for the link. No, I didn't get a manual from them. And it does seem like I'm on my own. They have offered very little in the way of solutions for me. I was struck that the DME seemed to even be encouraging me to give up today. What was with that comment about how it doesn't work for some people?! Maybe she thinks I'm too difficult.

It seems that with the Ambien, I'm more prone to removing the mask without being awake to know what I'm doing. But I've only had that experience twice. Maybe I'll try it again. It was nice to be able to sleep! I did feel slightly hung over today, but not too bad. It was more of a don't-want-to-get-out-of-bed thing.

[Pugsy]

Normally when you buy online you do so without insurance being involved.
Now there may be a few insurance plans out there that will consider an online retailer like cpap.com an out of network supplier so you can at least have some partial reimbursements but those plans are getting very rare. Cpap.com can't file insurance in lieu of payment but they will furnish you with a form to file for reimbursement (or they used to do that) but that doesn't mean your insurance will even recognize them...but you can ask.

There are some online suppliers who will file insurance...easybreathe.com...LibertyMedical...AmericanHome patient...to name a few but you would have to check with your insurance company to see if they had contracts with the online retailer that will file insurance in lieu of payment. Or better yet get a complete list from your insurance company and start checking for the ones that have an online presence.

I had a terrible time with the P10 stretchy stuff...in fact didn't even know it would come off for quite a while. Once I got it off I couldn't get the damn thing to stay on because I didn't pay close attention to how it came off.
There is a video available that shows how to put on the stretchy part over the little plastic arm thingies.
https://www.cpap.com/productpage/resmed ... dgear.html
I think you may have to click on "show more images" to get the videos to show up.

Once you figure it out it's easy but not the first time like you are trying to do and under the stress you are under. Don't try to take it off...just wash it all together. Save you a headache and worry about removing it later.

[Jay Aitchsee]

It seems that with the Ambien, I'm more prone to removing the mask without being awake to know what I'm doing.

Yeah, Ambien tends to give you amnesia unless you wake fully, so you don't remember doing some things. Sometimes used as an excuse by celebrities

I have to admit that removing that strap the first time is a little tricky. The video is helpful.

I don't like to recommend buying from other than our sponsor, CPAP dot com, but I if you search online you can buy a lot of mask parts piecemeal relatively cheap without a Rx (and likely no insurance reimbursement). For example, I just bought two Dreamwear cushions for $18 including shipping. Even though these would have been fully covered by my insurance, I'd rather buy online and have them delivered to my door with a couple clicks of the mouse than go through the hassle of dealing with my DME.

[Okie bipap]

Another source for masks is ebay. I picked up two brand new masks still sealed in the bag for about 3/4 of the price of one mask. Some people may get extra supplies through their insurance and then sell them. Some of the prices I have found have been very reasonable while others are almost as much as you can but it on line. Some of the sellers will actually accept less than the listed price if you are willing to take time to haggle with them using email.

[moonslice]

Thanks everyone. The ResMed was still drying last night, so I guess I'm trying it tonight. I had to take the strap off to wash it well since it was used. Maybe I can get over my germ freakiness. I may well have to watch the video to get it back on. Did I mention I messed up a nail getting it off? Just got a manicure today, so maybe I'll talk my husband into putting it back on for me.

I have checked with my insurance and ENT office and have found out that if I get the oral appliance through my ENT my only cost is $140. And I can also keep the CPAP. Seems silly not to try. It will be a few weeks before I get it though, so going to continue the cpap and see if anything magical happens. If continues as is, there's no way to meet compliance unless I wear it during waking hours. Oh, and my dentist who I also saw today and who doesn't file insurance for oral appliances, said he's not had any problems with people having teeth issues from using them. Only thing is that when you first get up in the morning, your teeth may feel like they don't want to meet when you bite down.

I had a headache yesterday, so was wondering if it was from the Ambien the night before. It was 10mg, so tried breaking it last night and the 5 mg didn't work for me. No sleeping with the Dreamwear last night. I wore it for 2 hours before giving up, but I did notice if I severely tightened the straps, it didn't leak. However, it felt really bad on my nose that way. It's confusing to me still whether the main issue is insomnia or the CPAP keeping me up. I had insomnia before the CPAP as well, but seems worse lately.

Tonight I'm going to try the Resmed AIrFit but not sure I will do Ambien again. Tomorrow I have the appointment to discuss getting back on HRT for insomnia. I will ask if he thinks it will help OSA, but I have a feeling he will just say that it's not prescribed for that for legal reasons.