Have had machine 2 nights--ugh! No love lost here.

[bluecow]

I'm so happy I found this website. I've already looked into ordering software for my machine. I had 2 sleep studies, one without CPAP and one with, and machine was prescribed without even seeing the doctor! Crazy. I am going to request copies of my test results. At least I went to medical supply store rather than have them come to my house, as I wanted full choice of masks--I had to have full face unfortunately, as I have bad allergies. I was given Remstar Plus C-Flex machine, but I tried on full masks and ended up with Quattro.

Wearing this mask machine really sucks--so far, the first night I put it on my husband couldn't help laughing hysterically. That was actually funny. I then threw it off my head after 3 hours and went back to sleep, it was driving me crazy. Last night I awoke with terrible headache, loosened the mask, but then woke up with "air sucking" from sides when my cheeks relax. I also woke up with stuffy nose and very stiff neck. So now I think I need to order a special pillow. How long do I tough it out?! I'm more exhausted than ever today.

Questions:
1) Has anyone had stuffy nose from using full face mask?
2) Do pillows help comfort and painful neck in morning?
3) Is software worth it to monitor progress?
4) Anyone using the Remstar Plus C-Flex that can give me any helpful hints? I like the air as cool as possible, so I did turn dial down to "0"
5) I love to travel--will I have to travel with this thing? I'm thinking NOT!

Thanks ahead of time for anyone who has time to give me their 2 cents worth

[Jaylee]

I don't think I could wear a FFM either. I have allergies, so in order to use a nasal mask I have to neti pot every day and take two allergy medicines.

I would keep trying, don't give up yet. Two days is really soon, there are a lot of things you can try first. There are a lot of people here who I am sure will have suggestions for you.

[Julie]

Hi, and welcome. You will get lots of help here, but you also have to give things a chance. First nights (and 2nds and 3rds) can be awful, but don't have to continue forever, things just need to be tweaked. As far as your nose goes, turn down (or even off) the humidifier - it's a 'comfort' thing for many people, but not 'therapy', just like the ramp feature, and while some people need it set high, others get congested, so try it at a lower setting at least for now. Loosen up the mask a bit and jiggle it all around once it's on - you may have the bottom half too tight, which will give you a sore neck, as can tension from the whole business. The mask should not be actually uncomfortable, and too tight can create leaks in other places by distortion. If it wasn't fitted to you properly, or just isn't for you, there are loads of others out there (I use the Ultra Mirage FF). Take your time and change one variable at a time, so you can get a better idea of what works and what doesn't. Also, it all works better if the room air isn't too warm (though doesn't need to be cold), and tell your husband a little understanding would be nice!

Do a forum search on travel - loads of people do it and there are lots of tips and hints about how to do it and deal with the airlines.

[jdm2857]

First things first. The Remstar Plus you have should have been called the minus as it does not provide efficacy data (pressure, leak, AHI, etc) -- it only does compliance (hours used). With this machine the Encore software will do you no good.

The good news is that most DMEs (durable medical equipment supplier) will allow you to exchange your machine within the first 30 days. Assuming that your DME prefers Respironics, you want at least the Remstar Pro. The System One Pro would be good too. Or you can try to get an Auto out of them.

But do it soon.

[bluecow]

Thanks for telling me what DME means--they were not that helpful at all! I questioned him on the machine several times, and he said "this is the best one." I will call tomorrow and request a change, as I'm a computer geek and want to be able to monitor my own progress with software!! Remstar Auto would be nice, but I hear back and forth on that. Which auto would I request?

For facemask, I guess I'm stuck with using full face mask until I can figure out a way to control my allergy at night. I take medication, but I often still remain stuffed up.

I do notice my facemask "blows out" air toward my husband when I am facing that way. Anyone deal with that? I don't want to give him a chill

[Janknitz]

1) You should take the suggestions above to try to deal with the allergies--saline rinses, nasal steroids, allergy meds (I take generic Claritin with good results). If you use a nasal mask or a nasal pillow mask, you may even find that your sinusitis improves--mine did! I'm not stuffy all the time anymore, and the air through the machine is filtered, which also helps my allergies. Correct humidification helps too, see #4.

2) My experience with the Quattro is that I had to keep my head so stiff to keep it from leaking that my neck and back were a mess. The right mask will help a lot--the quattro may not be it for you, and you should experiment with pillows as well. Different pillows work for different people. I use a Tempurpedic "orthopedic" pillow with a thin neck roll on one long edge, a thicker neck roll on the other. This makes a perfect "valley" for my mask when I lie on my side. But almost everyone here has their favorite pillow set up, it's pretty individual.

3) As jdm points out, software will do you no good on this machine. Glad to hear you are going to get it changed. DME's lie and aren't to be trusted. Don't let them snow you that you "need a prescription" to get a data capable machine or "it's not covered by your insurance". Neither is true. If they give you a hard time, let us know and we can tell you how to deal with them.

If you want to stay with the Resperonics line, ask for the System One Pro with C-Flex, or even better, the Auto (they will try to tell you you must have a prescription that calls for an auto, also not true, but you may need your doctor to write that in your prescription just to shut them up). People here prefer the Resmed S9 systems, but DME's tend to buy things in bulk and may not have that readily available (if you still want it, you can insist, or try another DME).

4) I think you should experiment with the humidifier settings. Too much humidification will bother your sinuses, but so will too little. Try a setting of 2 and if that's not good, go up or down and see what happens. (I get a stuffy nose and headache over 2, a lot of sinus pressure if it's set under 2). In the System One machines, the humidifier in the normal settings does NOT heat the water noticeably if at all (there's a way to switch to classic settings which do heat the water). So the air from the machine stays very cool, which is great in the summer (not so great in the winter).

5) Bad news: you have to travel with CPAP. Good News: PR is pretty portable, especially if you forgo the humidifier for the trip, but some people buy a smaller, lighter travel machine. SA does not go on vacation when you do--you need CPAP every time you sleep. But try not to obsess on this--take it one night at a time.

Once you get the machine and mask set just right, you are going to have incredible nights of sleep and you won't want to sleep without it anymore.

[dave21]

1) Usually with a full face mask you get a dry mouth. I thought I was a mouth breather to start with as I always thought I breathed through my mouth as I'm regularly congested with sinuses, but after trying a nasal mask I found that I didn't really breath through my mouth at all. You should try some other masks and see if you do need a full face or not. A ResMed Activa is a good nasal mask or if you want to try just pillows try the ResMed Swift FX.

2) I don't get a painful neck even when I had a FFM so I would doubt it, painful neck is probably more from how you're sleeping, e.g. on back, side etc.

3) Yes, software is very worth it to monitor your own compliance if you can get it. Just think of a diabetic having to monitor themselves. A lot of doctors still don't think it's worth us monitoring ourselves, but if you feel lousy one morning you can check the stats and know straight away whether you just had a bad night, or if it's was due to Sleep Apnea.

4) Sorry I'm using ResMed so can't help much with a RemStar but others here can help

5) Unfortunately if you have sleep apnea and you're in need of a machine you will need to use it EVERY NIGHT. That includes when you're on vacation or traveling. A lot of people (myself included) either travel light without a humidifier tank or get a smaller machine to take with you (especially if you're traveling weekly).

Hope that helps!

Thanks
Dave

[bluecow]

Thanks so much for everyone's help. I am going to contact DEM tomorrow and fight for what I want. I just got equipment Monday, so I'll pack it up and stand on their doorstep if I have to. I also just wrote a letter to my long-term primary care physician asking if he can re-word prescription if necessary, to state I need "access to Leak, AHI and AI" as well as APAP machine. I got to thinking that in the Sleep Lab, my nose was clear, but at home I'm often stuffy--so it seems an auto machine would do better for me.

I am going to try for the Resmed S9--is there one model better than the other?? I have good insurance, and I don't see why they can't give me what I want--they will get paid. Other option is to order online and try to get reimbursed, but I'm lazy

I might try the Activa mask as someone just recommended--I am an active sleeper, and maybe that would work better for me. And maybe my nose will be less stuffed with the right nasal mask and some antihistamine!

[kteague]

Yeah, those beginning nights can be rough. I've thrown a mask or two up against the wall in the middle of the night. Took all the restraint I could muster to not get out of bed and put my shoes on just for the satisfaction of stomping on it too. (Money is a great restrainer.) Be very targeted in your mask complaints, as when we are vague things seem so much bigger and unsolvable. Give this time and patience as you would give any new endeavor, knowing that time will reward your efforts.
1) I've had a stuffy nose even with nasal and nasal pillows style masks. It helps to keep my humidifier turned down. With the nasal mask, it wasn't the right size and pressed down on the side of my nose/cheek enough to block the sinuses. Being a full face mask may not be your problem. Congestion isn't a cpap vs auto issue. The newness of you mask could be.
2) In the beginning, one can get pain from being tense or trying to maintain an uncomfortable position to prevent mask leaks. You will figure out the best firmness and style of sleeping pillow for you and your mask. I need a firm one and sleep on my side with my mask hanging off the edge. Some buy special pillows for cpap use, some do their own chop-job to a foam pillow. You'll figure it out. Unfortunately it's trial and error, but reading what others have done may give you some ideas. Some masks have a lower back strap that goes around the base of the skull at a point that causes pain due to the musculature in that area. Is your mask too tight, or can you move it just a tad either up or down and see if it helps.
3) Yes, when you change machines.
4) You were intentionally misled about that machine. They gave you the one that gives them the greatest profit. If you'd never asked that's one thing, but you did and they weren't forthcoming. It will treat your apnea, but you'll have no way to troubleshoot if you have problems.
5) Either that or another one. Pick your pleasure.

[DreamOn]

Welcome, bluecow! You've had some great advice from the others. I'll try to answer a few questions that may not have been addressed yet.

There are two models of the ResMed S9 machines. One is the S9 Elite, which is a regular CPAP machine. It runs at one set pressure. The other is the S9 Autoset, which is an APAP (auto-adjusting) machine. That one can be run two ways: either with a range of pressure or as a single-pressure CPAP machine, so it's more versatile than the Elite.

Your insurance company will pay the DME the same amount for your machine regardless of which machine you get -- low-end CPAP, high-end CPAP, or an APAP. The billing code is the same for all CPAPs and APAPs: E0601. Because they're paid the same amount regardless of the machine, the DME often tries to sell the one they will make the most profit on. If your current DME is not cooperative, you may be able to go to another. You may want to call your insurance company and ask if there are other in-network DMEs.

I'm not sure if you chose the correct machine in your equipment listing because the photo shown there is for an older Respironics model. The PR (Phillips Respironics) System One series are their newest machines. That may be what you have. Does yours look like the one in your equipment photo?

If you can wear a nasal mask, the Activa and Activa LT are good choices. The straps can usually be worn quite loose and the cushion seems to seal well. At least that's been my experience. If you are a mouth-breather and use a nasal or nasal pillows mask, then you may need a chin strap and/or tape your mouth. There's lots of information on the forum regarding that. There are also two "hybrid" masks, that have both nasal pillows and a cushion over the mouth: ResMed Mirage Liberty and InnoMed/RespCare Hybrid. Whatever mask you choose, be sure that you're fitted properly -- preferably lying down, with the machine running at full pressure. Most mask manufacturers have a 30-day exchange policy.

You may want to try a saline nasal mist, like Ocean or Simply Saline. As someone else mentioned, many of us have less problems with congestion now than we did before CPAP when the humidity is set at the right level.

Regarding the vent blowing on your husband, some people put a small pillow between, and that can help. (Just don't block the vent, of course.) I use a nasal pillows mask called the AEIOMed Headrest that vents upward, out of the way of pillows and partner, which I love. You'll find what works best for you.

You may have to be very persistent with the DME to get what you want, but it is worth the effort to get a machine that's fully data capable. It can help immensely to track the data, especially if you're having any problems. Please let us know how you do!

[sunnyway]

You might consider a "total face" mask. I tried about a dozen masks: nasal pillows, nasal masks, and full face masks. They all woke me up with noisy leaks (raspberries and face farts), and left me with dry mouth in the morning. I like the Respironics Total Face mask and FitLife mask. Check them out at https://www.cpap.com/cpap-masks/total-f ... p-mask.php . The FitLife is on sale right now.

[Julie]

Just wanted to say that it is by no means standard that you 'get a dry mouth' with full face masks. I never have, and I think someone, ahem, might be posting their own experience as being usual, but it isn't.

[djr1215]

1) But almost everyone here has their favorite pillow set up, it's pretty individual.

I second this. I think the right pillow is just like the right mask - it's going to take trying different ones to see what works for you. I bought a special Cpap pillow - with the side cut-outs for the mask, place for your ear, neck, head, etc. It is now on the other side of the bed and I put my Ipod in one of the side cut-outs so that the Ipod doesn't slip all over the bed. I went back to a pillow I had bought previous to CPAP. This is a microbead filled pillow that allows me to create the indents for mask, etc where I need them at any given time and doesn't force me to sleep in one position to fit my mask to the pillow.

Is your nose just stopped up? or do you have a deviated septum? Mine always feels stopped up, but the main problem is that I have a deviated septum.

[kempo]

Bluecow I can relate with the allergy. About 3 weeks ago my personal Doc set me up for a sleep test. While in the exam room he looked up my nose and said I needed to clear up my stuffy nose before I take the test. He gave me a prescription for OMNARIS. After using it for three weeks I can breath through my nose better than ever. I use to wake up with a stopped up nose nightly but not any more. If you get the prescription and you have insurance, you can go to the OMNARIS website and copy a coupon to give to your pharmacist. Your co-pay will only be $11 a trip instead of $50. It sure has helped me. Good luck!

[KC5cychris]

I do notice my facemask "blows out" air toward my husband when I am facing that way. Anyone deal with that? I don't want to give him a chill

I use the Quatro as well my Wife says it feels like a bug crawling over her. Its been a month now and she has gotten used to the little bit of air and we have moved on, she even asks when I get into to bed where my mask is, so I will say it has made a difference even in her sleep.

welcome and hang in there it gets better

Chris