New User Confused and Overwhelmed

[sleeptimeinNY]

Just got my machine last Monday. I never thought about doing any searches, so I was completely and totally naive when the DM came to the house with the machine, went over how it works, tried to fit the mask and left. As you all know, there I was with this huge full face mask staring at me. First night after 2 hours of trying to get to sleep, took it off. Third night after one hour of trying to get to sleep, took it off. Fourth night, I did get to sleep (YAY) but after two hours, woke up and took it off.
I found this website and wow, I am trying to digest all the information that is here... it is awesome. I do not feel so alone (I have yet to even meet with my doctor, I had to call him and have an appointment with him next week), and have learned so many valuable tools and suggestions and encouragements. I am determined to do this and after reading some of your blogs, I am now determined to do it with the right attitude.
As it turns out, I got the basic S-9 Resmed Escape, with a humidifier. I plan on asking my doctor to prescribe the Autoset (I think) so that he can monitor the readings and I can also.
It makes me angry that so many people are out there being diagnosed with sleep apnea, they are given the machines and basically, "see ya" and "have a good night".
I have not even seen my report yet. I am trying to get it from my sleep center so I can go over it myself before I see my doctor, but they haven't sent it yet.
Anyway, I'm sorry this is so long and I know you all have heard this time and time again from all the newbies, but your posts have been so encouraging for me because I am still trying to accept this and now I know I am not unique.
Thank you to all of you for helping me so far.... and will keep you posted on how I'm doing.
I don't have the information on me now, but I think my mask is the Mirage full face mask. When I did my second test with a mask, they tried a nasal mask and I was gasping for air, couldn't figure out where to breathe from, so they put the full face mask on. I am more than likely a mouth breather.

thanks again everyone!

[Pugsy]

Welcome to the forum.
All this can be rather rough at the beginning and for some people a lot of hard work.
Mask issues are probably the hardest to sort out and really a war that we rarely ever truly win.
Sometimes there are modifications to help make things easier with the mask and don't hesitate to get with your DME about possibly even trying a different mask.

[pap4life]

This CPAP thing is quite easily overwhelming. BUT you appear to have the right mind set and attitude to accomplish what is needed and that is to get started on CPAP therapy.
The mask issues are going to be the biggest obstacle to overcome. Once you find a comfortable and non leaking one, you will welcome the mask every night and good sleep will again return to your life. You will look forward to hooking up every night.

Very good idea too request or demand a full data capable recordable machine and not just one that counts only the hours of usage.
If you are a mouth breather a chin strap may help with that. Full face mask are notorous for leaking. Nasal pillows seem to be the least type to leak for most people.

[Super Iridium]

Why did you end up with a full face mask?

I'm just wondering, because I started with a Resmed Mirage mask (covering the nose only) and loved it from the very first night. I've also just got a Swift FX nasal pillow mask, which seems to work well too. During my second sleep study, however, the nurse asked me to try a full face (nose and mouth) mask, and it was horrible. I couldn't even imagine doing this therapy if that mask was my only choice.

An auto machine will help too, but I'd get a new mask first and worry about the machine later.

[NateS]

…An auto machine will help too, but I'd get a new mask first and worry about the machine later.

With all due respect, and while I agree that this new user needs to try to get a mask which works well, I think she also has to put her foot down right now about getting a fully data-capable machine, or she is going to be stuck with the Escape they gave her. The more days that go by, the easier it will be for the DME to brush her off. Later will be too late.

Regards, Nate

[sleeptimeinNY]

thank you for your replies.
When I had the sleep study, they put the nasal mask on, while I was still up and awake and I found it hard to breathe, so they did the full face.
I don't mind a full face mask, but I think I might switch this one out .. I was looking into the Quattro FX full face mask because it doesn't have the forehead thing on it.
I am a side sleeper (although would love to sleep on stomach) so I was getting leaks out of the mask down by my chin. Don't know if the Quattro FX will be worse for that.
I am going to give the DM a call because when she brought the Mirage she did say there was another mask that I could wear my glasses with, so I'm assuming that is the Quattro.
I'm trying not to dread going to bed at night
My appointment with my doc is on Monday, so if DM needs a new prescription, I can get it from him.

[ohwhatanight]

I don't have the information on me now, but I think my mask is the Mirage full face mask. When I did my second test with a mask, they tried a nasal mask and I was gasping for air, couldn't figure out where to breathe from, so they put the full face mask on. I am more than likely a mouth breather.

Welcome! I've only been here 2 weeks and everyone has been so helpful. Feel free to ask any questions you have.

They tried a nasal pillow with me too first at the sleep study - my initial instinct was to gasp like you did and I immediately said "no way!" So, I only had less than a minute of experience with it. Turns out, the tech had it on full pressure, much higher than what I ended up being prescribed. I had no idea what to do with that blast up my nose and was convinced I would never be able to exhale. I ended up with a machine with exhale relief so a nasal pillow turned out to be actually really, really comfortable now with MY prescription and machine. I was an awful mouth breather before I started on CPAP, I'd wake up several times a night with my mouth dry as a bone. But with the humidifier and 12 hour Mucinex before bed, I can breathe very comfortably through my nose all night.

I was fortunate that I got a different guy at the DME when I went back to get a mask change. This guy let me try a nasal pillow with my own machine on my settings and sit there with it for over 15 minutes to get used to it and see if I really was okay with it. It's been such a huge improvement for me over the first mask they set me up with. Someone here suggested NOT letting them come to your house, but going there where they have more machines and masks to try. Also, take your whole setup with you so you are really comparing apples to apples. (Just be sure and empty the humidifier first!)

[Kairosgrammy]

Welcome. You are not unusual. Many of us, including me, were give a cpap, told how to use it (mine wasn't even set up at the house, I picked it up at the dme and shown how to use it) and that was the last I heard from anybody. It's taken me 8 years but I finally decided that I'm not going to be stupid about my treatment any more.

My basic question is why is your mask a problem? Are you claustophobic, is it hurting your nose. The reason I ask is because it is very, very important to have the right mask for you. Not all people do well on the same mask. If you look at everyone's here's cpap and mask info, you'll find quite a variety. Masks are definitely not one size fits all. One mask that works great for some, is horrendous for others. Unfortunately, how a person does with their mask is the single most important predictor of whether a person is compliant with CPAP therapy.

The first mask they gave me was a nasal mask. This kind of mask only covers the nose. I tried for 3 weeks to use it. At the end of 3 weeks, I was more tired than I was before I started cpap therapy. Hard to imagine being more tired!!! As soon as I put the mask on, my heart would start beating hard and I'd feel like I was gasping for air. I felt so anxious, I thought I'd jump out of my skin!!! I finally went back to the dme and told them what was going on. The RT says, oh, we can fix that. She gave me a new mask that was the forerunner of the Swift FX. I never had a problem sleeping with the cpap again. Now, had she told me when I first got the machine that if I had any problems, come see her immediately, I wouldn't have gone for 3 weeks. Going to the DME was really an act of desperation.

It is important that you advocate for yourself and you will be a better advocate if you #1 stay informed and #2, don't put up with any guff from the DMEs and docs!

Just got my machine last Monday. I never thought about doing any searches, so I was completely and totally naive when the DM came to the house with the machine, went over how it works, tried to fit the mask and left. As you all know, there I was with this huge full face mask staring at me. First night after 2 hours of trying to get to sleep, took it off. Third night after one hour of trying to get to sleep, took it off. Fourth night, I did get to sleep (YAY) but after two hours, woke up and took it off.
I found this website and wow, I am trying to digest all the information that is here... it is awesome.

[chunkyfrog]

When you are asking for a new RX, respectfully insist on 'leak' data,
and if you are looking at maybe subtracting some 'fluffiness', (not that you need to)
hint that your pressure might change, so the Autoset is the only one to handle that.
Hey; you can request "the pink one"---
As far as I know that would only be an Autoset (also available in neutral silver/grey)

[Mary Z]

I tell you, no matter what research you do you may get stuck with the wrong machine. After four years of CPAP therapy I was ordered an ASV machine. The machine I got was an older model and there is not even software available for this machine anymore.
Thanks to the help of a member of this forum I am in the process of getting the DME to change out the machine. Waiting for a phone call as I write as a matter of fact. I wish both of us luck in the processs of getting a machine that anyone interested in monitoring their own therapy deserves. So don't get down on yourself, without the help of this fellow forum member I would not even have known had an older machine.

[robysue]

…An auto machine will help too, but I'd get a new mask first and worry about the machine later.

With all due respect, and while I agree that this new user needs to try to get a mask which works well, I think she also has to put her foot down right now about getting a fully data-capable machine, or she is going to be stuck with the Escape they gave her. The more days that go by, the easier it will be for the DME to brush her off. Later will be too late.

Regards, Nate

Seconding Nate's post. The longer you wait to start pushing to get a machine with more data, the less likely you will be successful at doing so. JanKnitz has some excellent tips on what to do when you've been "given" a brick. Check out her essay Help! I'm stuck with a brick.

[hades161]

Welcome to the Forums !

This is the First Stage. ------------> Second Stage with effort.

OMG WTF ~! --------------------> Oh Yeah Baby !

It's a challenge make no mistake about it but you can get there.

[sleeptimeinNY]

hades161..... OMG those 2 images are AWESOME!! Thank you so much for the laugh it gave me.... I am still trying to get along. It's been a week and I have only made it one full night with the mask. I finally have an appointment with my doctor today and plan on having him prescribe me the S9 Autoset machine and will try out a new mask also.

[Kairosgrammy]

Now if I'd know they came in pink

When you are asking for a new RX, respectfully insist on 'leak' data,
and if you are looking at maybe subtracting some 'fluffiness', (not that you need to)
hint that your pressure might change, so the Autoset is the only one to handle that.
Hey; you can request "the pink one"---
As far as I know that would only be an Autoset (also available in neutral silver/grey)