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New member (Diagnosed with UARS)
#1
New member (Diagnosed with UARS)
Hi,
I am new to the boards. I am a 41 year old female who was recently diagnosed with UARS. I have been having horrible sleep onset insomnia for the past 3 years. It affects my mood severely, which in the past, I had no problem with. Towards the end of my pregnancy recently, my husband insisted I get a sleep study because he was hearing me gasp all night long and snore very heavily.

I just received my machine last week, and haven't attempted to sleep with it. Just getting used to the feel of the mask and trying to create positive feelings about it. I don't want to get my hopes up because I feel like I've tried so much for the insomnia, but if I could sleep well again, it would be like someone gave me my life back.

Any words of encouragement appreciated. Thank you. I look forward to learning from everyone.
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#2
RE: New member
Try practicing by using the machine during the day and watching TV or reading a Book. Download SleepyHead on to your computer so you will be able to track your progress. It's the program everyone here uses. Links are just below.

It takes some time to get use to but you'll get settled in and feel better in awhile.

Good luck and Welcome to the board.

   

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#3
RE: New member
You seem to be using a pretty wide-open settings 5-15 which suggests to me you did not have a titration study. I hope you will stick around and let us try to help you get accustomed to the machine and feel more comfortable with the therapy. For starters, you should obtain the clinical manual for your machine which explains the settings and how they work with your sleep disordered breathing. The manuals are free here: http://www.apneaboard.com/adjust-cpap-pr...tup-manual

We will be able to help you optimize therapy better if you download the free SleepyHead software and install it on a computer or laptop. This software gives a high level of detailed reporting on your use of the CPAP and it's effectiveness, making it possible to troubleshoot any issues that might occur.

I am going to suggest a slightly higher starting pressure, and the use of EPR (exhale pressure relief), which works better with UARS patients to comfortably resolve the flow limitation from the upper airway resistance. The EPR is a comfort setting that can reduce exhale pressure by 1, 2 or 3 cm-H2O pressure. It will likely make your experience more comfortable and effective. You can do this, and I suggest you just drop-in and start the therapy tonight. Putting it off will just make you more anxious, and there is nothing to worry about. Go for it.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

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#4
RE: New member
Hello tarah, I like Walla Walla's advice above (to try your mask and machine while watching TV, etc) if you're feeling apprehensive at all.

I'll also second his advice to download Sleepyhead so you can post data once you start using the machine overnight.

For personal experience, I had insomnia pretty bad prior to therapy. While xPAP doesn't "cure" insomnia per se, I have found that not having broken sleep disrupted by apneas has led to much better sleep habits and has helped break a negative cycle.

Hope you have a similar experience. If so--you will come to love your machine.

Welcome!

Bill
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#5
RE: New member
My mom and sister were also recently diagnosed with apnea; my mom has had it for 20+ years, my sister has probably had it since childhood, and I have had it for at least 20 years, since I had to wear a retainer for teeth grinding, which we now know is breathing troubles.
I am going to try the mask tonight. I have to do this for my sweet little ones, and for myself.
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#6
RE: New member
welcome to the forum
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#7
RE: New member
You can do this!

I am a newbie myself and newly familiar with the various hurdles.

Absolutely, sit around and do stuff with the mask on and blower going. You may find, like I did, that this is better than eating a piece of pie! It fills me with nice cool air, slows me down, and gives me a break from everyday anxieties. You couldn't pay me to give back this machine simply on that basis!

Do that for a day or two and then report your experience here. Folks on here can coach you forward.


The key to treatment success, IMO, is to take it on at your own pace. Some newbies here can generate pretty SleepyHead charts from the get-go and then finesse later.

Me? Despite my competitive nature and wanting (per normal) that I had to master everything quickly, I had to ignore all that. Even small steps didn't work for me! I had to use micro-steps. That is still the case.

Don't anticipate that APAP is a quick fix for insomnia. It may address many issues on the way to correcting for insomnia. It's all a process. You may find many other benefits that you didn't know were impacting your sleep. You will certainly find that "sleep hygiene" is an essential corollary to CPAP success.

You lucked out and got a machine you can interact with and adjust. This is treatment for you. Make it yours.

Important: don't lose sight of your compliance obligation, otherwise the machine will be confiscated. Don't run the risk of losing the machine while you still need time to figure it out. Learning the machine and making it work for you could take considerably longer than your compliance period.

Some tasks while you get used to wearing the mask when you're awake: 
-Mask fiddle takes practice. Pay attention to leakage and how to get your mask to behave on your unique face. The positioning is different when you're asleep, but you still have to know how to make adjustments.
-Get a fix on how to make the equipment nice and comfy. For me, this has meant hose covers and headgear padding; it also means having them pretty wild and colorful; my setup looks like a bad hippy costume, but I also don't get awoken by the rough feel and sound of hoses. You can even get holiday-themed accessories!
Some folks like "hose buddies" and clips. If you go on Supplier #1 website, you'll get ideas for accessories. You'll also want to look at Pad-a-cheek.
-Get really familiar with mask designs in case you have to/would like to use a different mask. Supplier #1 is a good place to see them all laid out.
-Download your clinician's manual (see the top menu).
-Get an SD card and card reader so you can read and post SleepyHead data. This is crucial for getting coaching on this forum.
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#8
RE: New member
I tried the machine last night and it did not go well. Not only did I not come close to sleeping with it, the anxiety it's creating for me made going to sleep without it extra difficult. I slept a few hours in the early morning.

I'm going to talk with my psychiatrist this week about the machine. Anxiety can get out of control quickly for me. For now, it needs to go in the closet for a week until I can face it again. Trying to strong arm my way with it is not going to work.
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#9
RE: New member
Back up some steps in the process before you put the APAP in the closet.

I would venture to bet that the majority of folks on here have had anxiety in starting to use the equipment and plenty before they got it.

Read my post above. I am serious about taking micro-steps.
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#10
RE: New member
O.k. right, microsteps. Like just putting the mask on without being hooked up for a few weeks or even months, until it doesnt feel like i want to rip it off and throw it in the trash.  Then reevaluate. Thanks for the perspective.
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