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Frustrated newbie..
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Yveylise Offline

Members

Posts: 11
Joined: May 2014

Machine: Fisher & Paykel Icon Novo
Mask Type: Nasal mask
Mask Make & Model: Zest Q
Humidifier: unsure
CPAP Pressure: 13
CPAP Software: SleepyHead

Other Comments: Currently using loaner machine: REMstar Auto A-flex with F&P Pilario Mask

Sex: Female
Location: Alabama, USA

Post: #1
Frustrated newbie..
Hello all!

I've had my CPAP machine since Feb 2013 and I have to say, it's been a huge frustration. I honestly have not used it completely through the night a single time. When I try, I wake up even more exhausted than when I went to sleep.

I've got my stats in my profile here so you can see what I'm using. My machine does have a humidifier but I have no idea what kind..I'll try to sort that out.

Here are my current issues..

1. The mask is uncomfortable. I don't know whose genius idea it was to put stiff plastic across the forehead but it actually really hurts. The nose masks rests on my upper lip. And to avoid any air leaking out from around my nose I have to tighten the straps to the point where it's unbearable. I'm primarily a side sleeper as well and this mask makes me feel like I'm stuck sleeping on my back. I wake up stiff because I haven't been able to move.

2. I've been waking up gasping for air. Occasionally through the night I'll feel like sort of popping sensation back behind my nose. I have no idea if I've become a mouth breather in the past year or not. Sometimes I can go back to sleep but eventually it makes me feel like I'm not getting good airflow and I find myself ripping the mask off my face. Maybe it's a matter of incorrect pressure? I was told I was a 14 (out of what, I don't know) a year ago. My sleep study showed activity 46-48 times an hour.

3. I've had water run down my nose more times than I can count.

4. Did I mention I was frustrated? Smile

Any help or advice you have is welcome. I'm at my wits end and so is my husband. He's tired of sleeping on the couch. I've email apneaboard to get a copy of my user manual but I honestly don't know what I'll do with the machine once I get it. I also noticed some of you use sleep monitoring software. Can anyone recommend a program that works with my model?

Thanks!

Amy
05-19-2014 08:58 AM
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jeffy1958 Offline

Advisory Members

Posts: 21
Joined: Feb 2012

Machine: S9 Auto
Mask Type: Nasal mask
Mask Make & Model: F & P Zest Nasal
Humidifier: Hi5
CPAP Pressure: 9-13
CPAP Software: ResScan SleepyHead

Other Comments:

Sex: Male
Location: Oshkosh, WI

Post: #2
RE: Frustrated newbie..
(05-19-2014 08:58 AM)Yveylise Wrote:  Hello all!


1. The mask is uncomfortable. I don't know whose genius idea it was to put stiff plastic across the forehead but it actually really hurts. The nose masks rests on my upper lip. And to avoid any air leaking out from around my nose I have to tighten the straps to the point where it's unbearable. I'm primarily a side sleeper as well and this mask makes me feel like I'm stuck sleeping on my back. I wake up stiff because I haven't been able to move.

Amy

For this therapy/treatment to work, you have got to be comfortable. Back sleeping is a real big no-no if you have apnea. I too am a side sleeper and figured if my mask was making me uncomfortable, it was pointless. So I spent time researching and wrote an article about getting the right mask fit. The VA and a private Dr. are using what I discovered to help with some of their patients. Give it a look and see if it can help you. Just click on How To Get The Perfect Mask Fit .

What concerns me is a year plus and you are still fighting.


How To Get The Perfect Mask Fit

How important is Quality Sleep to your heart

What The Mind Can Conceive and Believe - The Body Will Achieve

Positive Attitude = Positive Results / Negative Attitude = Negative Results

05-19-2014 09:48 AM
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Terry Offline

Advisory Members

Posts: 553
Joined: May 2014

Machine: Philips Respironics RemStar Auto with A-Flex (560P)
Mask Type: Nasal pillows
Mask Make & Model: P/R Nuance & Pap Cap
Humidifier: Integrated
CPAP Pressure: Auto
CPAP Software: SleepyHead

Other Comments:

Sex: Male
Location:

Post: #3
RE: Frustrated newbie..
(05-19-2014 08:58 AM)Yveylise Wrote:  1. The mask is uncomfortable. I don't know whose genius idea it was to put stiff plastic across the forehead but it actually really hurts. The nose masks rests on my upper lip. And to avoid any air leaking out from around my nose I have to tighten the straps to the point where it's unbearable.

I've had very good luck with this. Can't post links here, but you can Google "ADAM Circuit Nasal Pillows CPAP Mask"

It looks sort-of primitive, but is extremely comfortable. It's all soft fabric and velcro. The only contact points on your face are the two silicone "pillows" that touch the bottom of your nose.

If you adjust it correctly, nothing even touches your lip.

Terry
05-19-2014 10:24 AM
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trish6hundred Offline

Advisory Members

Posts: 6,430
Joined: May 2012

Machine: Resmed S9 AutoSet for Her
Mask Type: Full face mask
Mask Make & Model: Fisher & Paykel Simplus
Humidifier: H5i Heated Humidifier
CPAP Pressure: 10 - 7-20 Cm H2O
CPAP Software: Not using software

Other Comments: I started CPAP in 2008. Totally blind since birth.

Sex: Female
Location: Missouri, USA

Post: #4
RE: Frustrated newbie..
Hi Yveylise,
WELCOME! to the forum.!
I'm sorry you are having such a rough time with your CPAP therapy but,I encourage you to stick with it.
It sounds like you might need to talk to your DME, (Durable Medical Equipment,) company about trying a different mask.
There are many of them out there and the mask is the hardest part of this therapy, so don't be shy about asking to try different ones.
Hang in there for more suggestions.
Don't give up and best of luck to you.

trish6hundred
05-19-2014 10:37 AM
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jaycee Offline

Preferred Members-2

Posts: 115
Joined: May 2014

Machine: S-9 Autoset
Mask Type: Full face mask
Mask Make & Model: Quattro Air Large
Humidifier: 5i
CPAP Pressure: 9-13
CPAP Software: ResScan

Other Comments: RT at a DME

Sex: Male
Location:

Post: #5
RE: Frustrated newbie..
Most insurance plans will pay for a new mask every 3 months (headgear every 6).

There is no "perfect" mask that fits everyone. All faces/noses/personal preferences are different. Find the mask that works for you. Keep pressuring your DME & doctor to come up with a solution for you.
05-19-2014 10:47 AM
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Yveylise Offline

Members

Posts: 11
Joined: May 2014

Machine: Fisher & Paykel Icon Novo
Mask Type: Nasal mask
Mask Make & Model: Zest Q
Humidifier: unsure
CPAP Pressure: 13
CPAP Software: SleepyHead

Other Comments: Currently using loaner machine: REMstar Auto A-flex with F&P Pilario Mask

Sex: Female
Location: Alabama, USA

Post: #6
RE: Frustrated newbie..
(05-19-2014 10:24 AM)tcarmen Wrote:  I've had very good luck with this. Can't post links here, but you can Google "ADAM Circuit Nasal Pillows CPAP Mask"

It looks sort-of primitive, but is extremely comfortable. It's all soft fabric and velcro. The only contact points on your face are the two silicone "pillows" that touch the bottom of your nose.

If you adjust it correctly, nothing even touches your lip.

Terry

Thanks Terry, this was my feeling as well. I think I would prefer the nasal pillow type mask. I've tried calling some local med supply places today and they require a prescription. So, I called back to my sleep clinic and basically got setup for an appointment to come in tomorrow.

I've tried for over a year to get in touch with these people. I'm sort of beyond wanting an appointment. The information this board has provided me with this morning makes me want to take this into my own hands, not dish out more money to someone who has yet to help me. I'm going to call back and try to be a bit more direct about asking for a prescription.
05-19-2014 11:03 AM
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Yveylise Offline

Members

Posts: 11
Joined: May 2014

Machine: Fisher & Paykel Icon Novo
Mask Type: Nasal mask
Mask Make & Model: Zest Q
Humidifier: unsure
CPAP Pressure: 13
CPAP Software: SleepyHead

Other Comments: Currently using loaner machine: REMstar Auto A-flex with F&P Pilario Mask

Sex: Female
Location: Alabama, USA

Post: #7
RE: Frustrated newbie..
So, I've called my sleep clinic twice today.

The first time I spoke with the "CPAP manager" and she proceeded to bombard me with a ton of questions I couldn't answer.

Are you getting too much air or not enough?
What do you mean the mask doesn't fit?
What air pressure are you on? (they told me 13 today, I was told 14 before)
Do you want to find a different treatment? What do you want done about it?

Then she decided to schedule me for an appointment to come in and see the nurse so they could go over "CPAP basics" with me. They wanted me to come in for an appointment in June. Yeah, alright.. because I only stop breathing 46-48 times an hour. No rush guys.

I'm able to go in tomorrow if I'm willing to drive out of town. I am because the med supply place I want to go to is near there. That's fine.

She also told me I wouldn't do well with the nasal pillow option because my pressure setting is so high. I'll decide that for myself, thanks.

I was so frustrated after this that I just called back and directly asked for my prescription so I could go to the med supply place.

The lady told me I could get it tomorrow by asking my nurse for it during my appointment. I asked if I could go to the local clinic and pick it up today and she said "no, because those types of requests usually take a day". So, I can get it immediately after asking tomorrow, but if I ask today I can't get it today? Then she went on to use scare tactics with me..

"Well, if you choose to buy your equipment through someone else you won't ever be able to buy it through us again."

Fine.. because you've helped me so much already.

I felt empowered this morning.. now, not so much.
05-19-2014 11:35 AM
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retired_guy Offline

Preferred Members-2

Posts: 2,744
Joined: Jan 2014

Machine: ResMed S9 Autoset
Mask Type: Nasal pillows
Mask Make & Model: Resmed Airfit P10
Humidifier: ResMed
CPAP Pressure: 10.6/14, EPR 3
CPAP Software: ResScan SleepyHead

Other Comments: Is it bedtime yet?

Sex: Male
Location: Beautiful, albeit very wet Oregon Coast

Post: #8
RE: Frustrated newbie..
HI! I am glad you found us! We do want to help you and we won't even have our feelings hurt if you do try different DME's along the way....

First of all in order for this to work you must be committed to the idea of life with cpap. It sounds like you are, and it sounds like your husband is way supportive of you doing that. So that's good. Now all that remains is the "how to."

When it comes to the mask I really like the P10 pillows mask. It's very lightweight and it doesn't give me any crap whether I'm on my back, on my side, or sleeping upside down. Which, admittedly, I don't do often. The P10 comes with 3 sizes of pillows, conveniently labeled small medium, and large. I'm a size medium but I actually prefer using the size large most of the time. So don't be afraid to try sizes other than what you think you "should" use.

Masks can be ordered on-line through most vendors without a prescription. They simply have a provision where you order the head gear separate from the mask part. That satisfies the stupid law that says we can't order a mask without a prescription. Of course, if you have a prescription, you can use that and be done with it.

If you can visit with a DME supplier somewhere in your area that would be a fine thing, because then you could see the options for yourself. But if you can't don't let that slow you down.

The idea that the pillows mask won't work at 13 or 14 pressure is not accurate in my experience. Like I say, I might elect to use the large pillow rather than the medium, but that's about it.

Ok. Enough about the mask. What about your machine? Have you had it long enough to justify a new machine? If so we have some strong opinions as to what that new machine should be. So don't buy one until you become more familiar with the options. We'll get into that once you get your mask options sorted out.

One thing: Visit the Resmed company website and review their mask options. In particular their new Air F10 full face, N10 Nasal, and the one I recommend the P10 Pillows.. When you visit the DME don't let them talk you into a model that might not be the latest and greatest thing simply because they haven't ordered in any of the new ones yet.

And review the recommended suppliers from the list we keep on this website if you feel you would just like to order something in yourself and be done with it.

Mostly, when you get your new mask it will become now you use it, all the time. No fair quitting in the middle of the night! So get comfy, and get ready to make this stuff work for you.
05-19-2014 12:05 PM
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Terry Offline

Advisory Members

Posts: 553
Joined: May 2014

Machine: Philips Respironics RemStar Auto with A-Flex (560P)
Mask Type: Nasal pillows
Mask Make & Model: P/R Nuance & Pap Cap
Humidifier: Integrated
CPAP Pressure: Auto
CPAP Software: SleepyHead

Other Comments:

Sex: Male
Location:

Post: #9
RE: Frustrated newbie..
(05-19-2014 11:03 AM)Yveylise Wrote:  Thanks Terry, this was my feeling as well. I think I would prefer the nasal pillow type mask. I've tried calling some local med supply places today and they require a prescription. So, I called back to my sleep clinic and basically got setup for an appointment to come in tomorrow.

FWIW, mask, parts, hoses, etc. seem to be easily available on the internet without a prescription, so if you have a browser and a credit card, you can probably find whatever you want if your DME isn't cooperative.
05-19-2014 03:10 PM
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glfredrick Offline

Preferred Members

Posts: 38
Joined: Apr 2014

Machine: ResMed S9 Autoset
Mask Type: Full face mask
Mask Make & Model: Quatro Mirage
Humidifier: ResMed H5i
CPAP Pressure: 14-18 auto
CPAP Software: Not using software

Other Comments: Bi-vocational Pastor

Sex: Male
Location: Near Sheboygan, WI

Post: #10
RE: Frustrated newbie..
(05-19-2014 03:10 PM)tcarmen Wrote:  
(05-19-2014 11:03 AM)Yveylise Wrote:  Thanks Terry, this was my feeling as well. I think I would prefer the nasal pillow type mask. I've tried calling some local med supply places today and they require a prescription. So, I called back to my sleep clinic and basically got setup for an appointment to come in tomorrow.

FWIW, mask, parts, hoses, etc. seem to be easily available on the internet without a prescription, so if you have a browser and a credit card, you can probably find whatever you want if your DME isn't cooperative.

Precisely, and I divorced my sleep doc and DME a LONG time ago for self-guided care. It is possible if you learn your way around the process.

Start by trying different masks. You can order them at will without a prescription. You MAY want to try a full face mask instead of just nose pillows. I have to use the FF mask because I am a mouth breather for sure and once I open my mouth, any CPAP help is gone (plus I snore, so a FF mask stops all of that nonesense and my wife stays with me!).

I like the Resmed Mirage Quatro and I take a medium size. Everyone is different, and the size of the mask has more to do with the proportions of your face than your actual size. It has to fit properly to be useful.

I also had my wife make pads from fleece that slip over the headgear to stop the tracks on my face every morning. That is a great help!

She also made me a custom pillow for side-sleeping that has mask cut-outs on each side. We got a memory foam pillow from a big box store, added a slice of another old foam pillow to the bottom to boost the height to my standards (I have broad shoulders!) and I now have a great head-cradling pillow. For the mask cutouts she used an electric knife (cuts through foam like it is warm butter!) and she cut out scoops where the mask fits when I sleep. No more pressure on it while I am on my side.

You can BUY all that stuff and spend hundreds of dollars or you can get creative and do it at home for pennies. It all works!

Oh, and hang in there. I'm now about 8 years in and I've only missed two nights in all that time. I run 18 cm pressures and I would be dead by now without my hose! Last Friday night I actually banked 9.75 hrs of sleep with the mask in place. i was exhausted after a long week and short hours on many other days so I slept in past my normal 4 am wake time. It was nice! My new S-9 autoset machine is very comfortable! Just saying that it CAN be done!
05-19-2014 03:32 PM
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