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[Treatment] Advice on getting used to CPAP
#1
Hi - I've spent two fairly miserable nights so far using my new DreamStation APAP (humidifier and heated tube), w/ Amara face mask that covers my mouth and comes just up to my nose. I figured I needed the mask that covers my mouth as I think my mouth is often open when I am relaxed and sleeping.

Anyway - any tips for how to learn to like this equipment? My AHI at the sleep lab was 31, on night one with this APAP it was 11 and on night two it was 20. I seem to spend the first few hours of the night terrified of all this equipment on my face; then finally fall into a deeper sleep the last three hours.

This is the first time I've ever had a machine (other than at the sleep lab).

Thanks for any advice!

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#2
Hi JaneAM,
Welcome to Apnea Board!
It takes a little time to get used to therapy, especially when all of a sudden you have something on your face and you are hooked up to the end of a hose. Smile

This is what I used to do when I first started....Move your machine out to a living room and wear your mask with machine running while you watch TV or read (if you are able with a full face mask.)
You will be surprised when you are distracted how fast the time goes. This will help you to get used to it a little faster. It doesn't hurt to move your machine, just empty water in humidifier first.

Your AHI is still a little high. I would recommend that you download the free SleepyHead software and start to use it. This will help you in understanding your therapy better.
http://sleepyhead.jedimark.net/
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#3
Hi Jane. "Miserable" is an absolutely normal way to feel when you first start using xPAP therapy.

Good for you for finding this forum. It's a great resource for helping to solve comfort and technical issues with getting good xPAP therapy.

OpalRose's suggestions are good ones. I did some similar "getting used to breathing with my machine and mask" while lying in bed with music playing. Sometimes I would use an e-reader. It does take time to learn to relax with all that gear on and to get used to the sound of the air.

I have some problems with anxiety and mild claustrophobia, so I ended up also using lavender essential oil in my bedroom and taking a bath/shower before bed for relaxation.

The air coming from the machine may feel like a gale force wind at first. I found that it just took some time to get used to that. (Days, not weeks.)

One machine setting to check is the expiratory pressure relief value. I think it's called AFlex on your machine. It may be turned off or may have values of 1, 2, or 3. (In the "Settings" menu, I believe, or it may have its own menu.)

If you feel like you are having a problem specifically with exhaling against the pressure, increasing the AFlex setting will make that easier.

Another number that you might look in the Settings menu and note down is the humidity setting.

If you notice that you're waking up with a dry mouth or nasal passages, you may need more humidity.

If you look at the data provided by your machine (probably under "Info"), make a note of the % value for "Large Leak". It's important to know if you are having lots of leaks from your mask.

Also make a note of the 90% Pressure value. That can give information about why your AHI isn't lower.

A lot of us on this forum use software called SleepyHead to download data from our machines to see if our pressure settings are treating our apnea adequately. There's a link at the top of the forum page to the SleepyHead software if/when you want to do that.



(06-05-2016, 02:34 PM)JaneAM Wrote: Hi - I've spent two fairly miserable nights so far using my new DreamStation APAP (humidifier and heated tube), w/ Amara face mask that covers my mouth and comes just up to my nose. I figured I needed the mask that covers my mouth as I think my mouth is often open when I am relaxed and sleeping.

Anyway - any tips for how to learn to like this equipment? My AHI at the sleep lab was 31, on night one with this APAP it was 11 and on night two it was 20. I seem to spend the first few hours of the night terrified of all this equipment on my face; then finally fall into a deeper sleep the last three hours.

This is the first time I've ever had a machine (other than at the sleep lab).

Thanks for any advice!

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#4
Yup, what they said. Get used to it during the day. Wear it and get used to the feeling and sensations. Play with it. Figure out the fit. Just chill with it.

When you get ready for bed, get it on, lay down, test it for leaks. There's nothing to be anxious about. It is just air.* If you are not asleep or feel anxiety still after half an hour, get up and do something relaxing. Away from the bed. After a few minutes and you are feeling better, lay down and try again.

*But, yeah, it is a lot. It is a machine hooked to your freakin' face. You look absolute gaw-juss with it on, I'm sure. We all do. We all go through this to some degree. And really, we all realize there truly isn't anything to be anxious about. It is just air. It isn't even enough air to inflate a balloon. It will be okay. Honest. Beats the alternative: a slow death by multiple diseases caused by sleep apnea.
PaulaO2
Apnea Board Moderator
www.ApneaBoard.com


Breathe deeply and count to zen.

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#5
Hello and Welcome to the Apnea Board. You seem to have an overall positive attitude and desire, but this needs to change, " I seem to spend the first few hours of the night terrified of all this equipment on my face; then finally fall into a deeper sleep the last three hours."

Why do you feel terrified of the equipment? It is not dangerous, it is there to save your life. The pressure is not really high as Paula's ballon experiment shows. It is inconvenient, yes. Unattractive, yes, certainly. Claustrophobic? Yes, for some of us.

Please stick with it, for yourself and your loved ones. It can be very normal and not disturbing to your sleep. Using SleepyHead is a good way for us to help you.
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#6
It's all about trust and that just takes a while. What is the new normal, sounds and feelings. With the mask on and machine turned off you can still breathe just fine, no treatment but you get air.
There are many comfort settings and unless you are the mystery "default" person, you will need to adjust some or all of them to get comfortable with this.

Start looking into the free sleepyhead software and you can see exactly what is happening all night, also gives people here some data to look at to help you out. learn the new language that comes with this. You can now feel congested without being congested. You may like high or low humidity, warm or cool air. You may find you have problems exhaling into pressure. there are adjustments for all this and more.

Hang in there and get used to it, it really does work.
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#7
A follow-up for green wing's comments: the DreamStation has both A-Flex and C-Flex. I have tried both when I was starting out and found that A-Flex felt much more natural. I've gone from 3 down to one as I have gotten used to it.

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#8
Thanks Everyone for the excellent advice! After night 4, I could say I've moved from "terrified" to "starting to adjust." A few more questions for you experts:

Is Sleepyhead software the same thing as DreamMapper? I have tried to download the DreamMapper that came with the machine but it has yet to work. I've called the medical device company several times - they are not very helpful. I've called the 800 # that is connected with the software but no one ever answers the phone. So thinking maybe I should try to hook up with Sleepyhead software.

I do see some #s on the machine in the morning, but have some questions: Can someone explain the meaning of the "90% Pressure" reading? I have gotten values of 14, 10.5, 9.5 - but don't know what that means.

Can someone explain the meaning of the "Periodic Breathing" reading? I have gotten values of 3%, 0%, 1% - but again, not sure what that means.

My AHI # has been pretty varied - 11, 21, 7, 17. I will try to increase the humidity and see if that helps. (Sleep lab AHI was 31)

Thanks to all who are helping me with this! You are much more helpful than either my doctor or my medical device company - both are quite hard to reach on the phone to explain things to me.

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#9
Congratulations on moving from "terrified" to "starting to adjust", that is a big step in the right direction.

DreamMapper only shows some summary information. It is OK for a quick check on how things went last night. Sleepyhead shows the very detailed data that you machine collects and displays things in a manner that a doctor or respiratory therapist might use. It also displays the summary information that DreamMapper shows. Only SleepyHead displays the detail of data that people here need to see to give you advice. You do need to go to dreammapper.com and setup an account, or do this from the app. I had a lot of trouble with the bluetooth connection and you might need to restart both your DreamStation and device. Personally, I have given up using DreamMapper. If you get a Wifi SD card for the DreamStation, this makes SleepyHead very easy to use.

The 90% pressure is the pressure at which you are AT or BELOW for 90% of the time. That is is decreasing is a good sign. Periodic Breathing is a pattern of waxing and waning breathing that can signify other health issues. Some is normal and your percentages don't look like a concern to me. I had a lot when I started and it has gradually reduced.

A varied AHI is not unusual, especially when starting out. Yours is a bit on the high side suggesting that more pressure may be needed, though you might want to get more conformable before you try that. If you are having a hard time falling asleep or staying asleep, be aware that the machine will mis-report this as AHI related events (called sleep/wake junk). Our waking breathing is much more irregular than while we are asleep. So your actual AHI while sleeping might be lower than what is reported. Posting some graphs from SleepyHead will allow use to comment on what is actually happening

Sweet Dreams!
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#10
Hi Jane. That's great news that you're starting to adjust.

SleepyHead and DreamMapper are two different things. SleepyHead is free software that lots of people on this forum use to look at their treatment data. It's much more comprehensive than DreamMapper.

My machine isn't compatible with DreamMapper, but I have seen comments from other people on this forum who use it saying that they like it to give a quick and concise summary of treatment stats. It's handy because you can access it with a smartphone.

The 90% number for your pressure is a percentile value. It means that 90% of your pressure values were at or below the number shown.

Or, to put it another way, your CPAP machine pressure was at or below that pressure value for 90% of the time the machine was on.

The 90% value is useful for seeing how high your machine needed to go to control your apneas.

AHI is your average apnea-hypopnea index for the night, as you probably know from your sleep study. Under 5.0 is considered "treated adequately", but it's usually possible to get values well below 5.0.

Periodic breathing is defined here: Periodic Breathing If it's happening a lot, it's potentially a concern. If the percentage is very low, then not a concern.

I would adjust the humidity as needed for comfort. If it's too low, it can cause you to wake up with dry nasal passages and mouth. If only your mouth is dry and not your nasal passages, that may be from having your mouth open.

Oh - another important number to look at in SleepyHead is "Large Leaks". Your CPAP machine data screen will also tell you if that is happening.

Your experience with your doctor and your medical device company are what more of us than not experience. Sometimes persistence helps, sometimes not.

I found it very disconcerting to have a sleep doctor show me study results and tell me that I had "SEVERE obstructive apnea", but then not return phone calls when I had problems with using the CPAP machine.

So, SleepyHead. SleepyHead shows you your data in both tables and graphs. Under the "Daily" tab, you will see a chart with tick marks representing each time your machine detects an obstructive apnea, an hypopnea, etc.

There will be a graph for your CPAP machine's pressure that will show how the pressure varied in response to the apnea events.

The flow rate graph is a chart showing your breathing in liters/min.

There's an AHI graph in SleepyHead. That AHI is an hourly moving average. That allows you to see if you are having more apneas during certain periods of the night. Many people do - it can happen because you're in a very deep stage of sleep or in REM sleep, or if you're sleeping on your back.

Since you have an auto-adjusting CPAP machine, it's supposed to vary the pressure as needed to treat your apnea during all stages of sleep.

There's a link at the top of this page where you can download SleepyHead. There is also a wiki called Beginner's Guide to SleepyHead that is very helpful.

You may want to print out some of it for reference. (The whole thing is 74 pages.)

It's a lot of new terminology, but it becomes familiar pretty quickly.

If you have questions, just ask. You'll generally get an answer pretty quickly.

(06-07-2016, 03:02 PM)JaneAM Wrote: Thanks Everyone for the excellent advice! After night 4, I could say I've moved from "terrified" to "starting to adjust." A few more questions for you experts:

Is Sleepyhead software the same thing as DreamMapper? I have tried to download the DreamMapper that came with the machine but it has yet to work. I've called the medical device company several times - they are not very helpful. I've called the 800 # that is connected with the software but no one ever answers the phone. So thinking maybe I should try to hook up with Sleepyhead software.

I do see some #s on the machine in the morning, but have some questions: Can someone explain the meaning of the "90% Pressure" reading? I have gotten values of 14, 10.5, 9.5 - but don't know what that means.

Can someone explain the meaning of the "Periodic Breathing" reading? I have gotten values of 3%, 0%, 1% - but again, not sure what that means.

My AHI # has been pretty varied - 11, 21, 7, 17. I will try to increase the humidity and see if that helps. (Sleep lab AHI was 31)

Thanks to all who are helping me with this! You are much more helpful than either my doctor or my medical device company - both are quite hard to reach on the phone to explain things to me.

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