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1 year in, some thoughts and advice to newbies
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ISnoreBadly Offline

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Posts: 117
Joined: Jul 2015

Machine: PR System One REMStar Pro 560
Mask Type: Nasal pillows
Mask Make & Model: PR DreamWear Nasal Mask
Humidifier: PR System One
CPAP Pressure: 12
CPAP Software: SleepyHead

Other Comments:

Sex: Male
Location: Lawn Guyland, Noo Yawk

Post: #1
1 year in, some thoughts and advice to newbies
This has been bouncing around in my head for a while, it's kind of a stream of consciousness thing so sorry if it seems a bit disjointed.

Earlier this month was the 1 year anniversary of me starting to use CPAP.

During my sleep test I had an AHI of 63 and my oxygen desaturation was 75%. That's pretty bad. I started on CPAP as soon as I could, tried a bunch of different settings (CPAP and APAP) and many different masks until I found worked worked the best for me.

Every day I would pull the card out of my machine and plug it into the computer so I could scrutinize the data in SleppyHead. And worry over upticks in some graphs and my overnight AHI being 2.5 instead of 1.9 or whatever.

Every day I would come here and read people's success stories and wonder when I was going to start feeling better.

As time went on I found that I was checking SleepyHead every other day instead of daily, then once a week, then once a month. Monday of this week I had an appointment with my sleep doctor so I pulled the card out of my machine and found that the last time I had imported data into SleepyHead was in April.

When I see people posting here saying that they're giving up or are frustrated after a few weeks or months I know that was once them. But I never wanted to stop using CPAP, I just wanted to get back to "normal". Now I know that my life today is the new normal. I will use CPAP for as long as I have to because I don't want to be dead. I don't want to have a heart attack, or fall asleep while driving or any of the many other things that can kill me from having OSA. It's a little uncomfortable but I've learned to adjust and now just about every morning I wake up with the mask still on my face instead of ripping it off halfway through the night.

I do feel better, I'm not nearly as tired as I was at the end of the day. I'm not as forgetful as I was and feel that I'm sleeping better every night. I have found that I don't sleep nearly as deeply as I did, before you could drop a bomb in my bedroom and I wouldn't stir, now my wife gets out of bed to go to the bathroom and I wake up. I'm not sure if that's good or bad but it is what it is.

My advice to newbies is this: Hang in there. It WILL get better. You need to stick with the treatment and if you're having issues work with your doctor to sort them out. The people here on this board are wonderful and provide loads of support and insight into what you can do to increase your chances of success. Ask questions. Find a mask that is comfortable for you and works for you. Everybody is different, what fits my face may not fit yours so you may need to try a bunch of different ones until you find the best one.

Just don't give up. The effects of untreated OSA will kill you eventually!
07-28-2016 03:31 PM
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trish6hundred Offline

Advisory Members

Posts: 6,449
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: #2
RE: 1 year in, some thoughts and advice to newbies
Hi ISnoreBadly,
Thanks for this very encouraging post, and CONGRATULATIONS.! Keep up the good work.

trish6hundred
07-28-2016 07:44 PM
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Mosquitobait Offline

Advisory Members

Posts: 746
Joined: Apr 2015

Machine: Resmed AirSense 10 For Her
Mask Type: Nasal pillows
Mask Make & Model: Airfit P10
Humidifier: integrated, Climate line tube
CPAP Pressure: 9-12
CPAP Software: ResScan SleepyHead

Other Comments: RLS and Bradycardia

Sex: Female
Location: Minneapolis

Post: #3
RE: 1 year in, some thoughts and advice to newbies
Yay!! Glad you are hanging in there. I started off really good and then started ripping the mask off about the time winter hit. Still working through stuff, but I've used my mask all but 2 nights (I was in the ER with a family member and thus did not sleep). It's sometimes a tough road - my new normal means that I'm not napping twice a DAY and am not walking around in a fog! I do think clearer as well. I would like to be back to pre-apnea, but that doesn't seem to be happening.

If sound is waking you, consider adding a pleasant white noise to your sleeping area, something both of you find acceptable. It could be a fan, or, in my case, I use my Itouch and have ocean waves or cicadas playing most of the night (I prefer forest sounds, but the occasional bird sound put my cat on the alert). There are numerous apps for this, but I just made a playlist of my nature sounds albums.
07-28-2016 08:48 PM
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player Offline

Advisory Members

Posts: 412
Joined: Feb 2015

Machine: Resmed A10 Autoset For Her
Mask Type: Nasal pillows
Mask Make & Model: Resmed A10
Humidifier: Resmed A10 Autosset
CPAP Pressure: 11-16
CPAP Software: SleepyHead

Other Comments: It's a... mad world...

Sex: Male
Location: Canada

Post: #4
RE: 1 year in, some thoughts and advice to newbies
Try to get an APAP (Auto) instead of CPAP (Constant). My advice...
(This post was last modified: 07-29-2016 12:58 AM by player.)
07-29-2016 12:56 AM
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garrettmcc Offline

Members

Posts: 5
Joined: Jul 2016

Machine: Phillips dreamstation
Mask Type: Nasal mask
Mask Make & Model: Phillips Wisp
Humidifier: none
CPAP Pressure: 10
CPAP Software: Not using software

Other Comments:

Sex: Male
Location: Ireland

Post: #5
RE: 1 year in, some thoughts and advice to newbies
Thanks for the timely post, 3 weeks in and struggling a bit with the "New Normality" Good to hear that it gets better
07-29-2016 06:10 AM
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ISnoreBadly Offline

Advisory Members

Posts: 117
Joined: Jul 2015

Machine: PR System One REMStar Pro 560
Mask Type: Nasal pillows
Mask Make & Model: PR DreamWear Nasal Mask
Humidifier: PR System One
CPAP Pressure: 12
CPAP Software: SleepyHead

Other Comments:

Sex: Male
Location: Lawn Guyland, Noo Yawk

Post: #6
RE: 1 year in, some thoughts and advice to newbies
(07-29-2016 06:10 AM)garrettmcc Wrote:  Thanks for the timely post, 3 weeks in and struggling a bit with the "New Normality" Good to hear that it gets better

It does, but it takes time. Hang in there!
07-29-2016 08:43 AM
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0rangebear Offline

Advisory Members

Posts: 341
Joined: Jan 2016

Machine: ResMed AirSence 10
Mask Type: Other
Mask Make & Model: Amara View
Humidifier: HumidAire (Built-in)
CPAP Pressure: APAP 12.8-15 EPR 3 (cmH2O)
CPAP Software: ResScan SleepyHead

Other Comments: Ramp off

Sex: Male
Location: Brighton Colorado

Post: #7
RE: 1 year in, some thoughts and advice to newbies
Great post Eat-popcorn
Great advice Thanks
Great-info

Congrats
on your success.
BananaBananaGoodOneBananaBanana


(07-28-2016 03:31 PM)ISnoreBadly Wrote:  My advice to newbies is this: Hang in there. It WILL get better. You need to stick with the treatment and if you're having issues work with your doctor to sort them out. The people here on this board are wonderful and provide loads of support and insight into what you can do to increase your chances of success. Ask questions. Find a mask that is comfortable for you and works for you. Everybody is different, what fits my face may not fit yours so you may need to try a bunch of different ones until you find the best one.

Just don't give up. The effects of untreated OSA will kill you eventually!
07-29-2016 04:43 PM
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Greendog Offline

Members

Posts: 12
Joined: Jul 2016

Machine: Resmed auto airsense 10
Mask Type: Full face mask
Mask Make & Model: Philips Amara View
Humidifier: Integrated
CPAP Pressure: 7-15
CPAP Software: SleepyHead

Other Comments:

Sex: Undisclosed
Location: United States

Post: #8
RE: 1 year in, some thoughts and advice to newbies
Thanks so much for the encouraging information! I started down this path 2 weeks and 2 days ago. It is very intimidating, but when I read about the successes people like you have had, I feel sure that I can do it, too!

Thanks again and congratulations!!

Greendog
07-29-2016 06:23 PM
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Casuco Offline

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Posts: 4
Joined: Feb 2016

Machine: Resmed S9 Auto
Mask Type: Nasal prongs
Mask Make & Model: Aire II Prong
Humidifier: Resmed
CPAP Pressure: 4-20
CPAP Software: Not using software

Other Comments:

Sex: Female
Location:

Post: #9
RE: 1 year in, some thoughts and advice to newbies
Thanks for this. I am a newbie and have "given up" I don't know how many times. I also Know the benefits! I feel so much better and have so much more energy when I can get 4-6 hours on it. It has been a lifesaver. I am still struggling though. Nights I just cannot go to sleep. Last night I moved the machine to the floor. That seemed to help a little with the noise. I still feel when I first put it on, like I am suffocating. I am trying to make my machine into a friend! I will keep on keeping it on!
07-30-2016 08:42 AM
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OpalRose Offline

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Posts: 3,180
Joined: Nov 2014

Machine: PR System One REMstar Auto 560 with A Flex
Mask Type: Nasal pillows
Mask Make & Model: AirFit P10 For Her
Humidifier: REMStar heated humidifier with heated hose
CPAP Pressure: Auto Cpap 10-13 AFLEX 1
CPAP Software: SleepyHead EncoreBasic

Other Comments: Started CPAP Therapy October 23, 2014

Sex: Female
Location: Northeast Ohio, USA

Post: #10
RE: 1 year in, some thoughts and advice to newbies
Hi Casuco,
Your machine is set to a "wide open" range of 4-20 which is not optimal for most of us. It's no wonder that you feel as if you are suffocating. We call it feeling "air starved".

I would like to recommend a pressure adjustment, but you will need to download the SleepyHead software and start downloading your data. Start a new thread to upload your data with your questions.
http://sleepyhead.jedimark.net/

Also, order the Clinicians manual for your machine. This will show you how to make pressure adjustments.
http://www.apneaboard.com/adjust-cpap-pr...tup-manual

My first thought would be to move your minimum pressure from 4 to at least 5 for now until we see some charts.

OpalRose
07-30-2016 09:00 AM
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