Newbie,thinking of giving up

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
Sleepybaby
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Re: Newbie,thinking of giving up

Post by Sleepybaby » Wed Nov 25, 2009 11:11 pm

jweeks wrote:Hi,

The numbers that you report above do not look too bad. It might be helpful reset the numbers to zero so you can see one day results rather than the 7 and 30 day averages. It looks like they have trended down.
I agree that resetting will help me better to understand the differences.

My next question is how you got to this point? Did you have a formal sleep study in a sleep lab? Are you being treated by a board certified sleep doctor? Or a medical doctor? How did you know what machine to buy, and what settings to put on the machine?
I had two sleep study in two years period,which all turned out that I had snoring only,but not apnea.The lowest SO2 for both tests were 90% and 87%.The medical doctor suggested that I may do not need CPAP,then I just let it go.After that,I had almost all the physical tests/checks,and all turned to be OK,even I had consulted with the psychologist to be good mentally.Seemed to be totally OK physically and mentally.However,in the past 8 years,I felt so tired and sleepy everyday.Every working day,two cups of very strong black coffee,which I know how strong they are,because I tried one bag packing of the strongest coffee already in USA,which my customer mentioned,but could not recall the name of brand.If not working day,but holidays,I would wake up in the monring,have the breakfast,then immediately go to bed until noon.Just after lunch,would go to sleep again,and until 3PM wake up.Even I had enough sleep in the day,I would go to bed at the normal time like 9:30 or 10:00 PM in the night.Described are my life before CPAP.Physically and mentally well,I decided to think about CPAP again.After a lot of searching and paper work,I found the Respironics agent in another city and tried for two nights.The second night was just too perfect and I was refreshed and felt great.Then I decided that I should start with CPAP.The machine tried was not my present,but old version you called Respironics tank auto CPAP.And my 90% pressure was titrated to be 8.0cm.In fact,the second day of trying the machine was the best so far.Only one time wakeup at about 4 to 5 AM,then I felt asleep again and woke up around 7:00AM in the monring.And the next daytime was also the best ever.I do not know why.Even my settings were same as titrated.



I am suspecting that you need to have a new sleep study. It is very possible that you have something else going on, or have more than one sleep disturbance. It could be issues with the medication. It could be that you do not react well to the pressure changes on the auto machine. It could be that you are sensitive to the pressure and that is causing issues (which a BiPAP or CPAP might help with rather than your APAP machine). It doesn't seem like us random internet OSA patients are going to be able to guess it from the opposite side of the world.
With auto CPAP,I tried already only CPAP,but not auto,still no differences or improvement.Even worse,the noise was so loud at the very beginning,which made me difficult to fall asleep.With ramp and low pressure,can fall asleep easier.High pressure means louder noise.

Another possible dynamic is that your body may have adapted to fragmented sleep, and now your brain is so used to waking up that it has become a habit. If that is the case, about the only real cure is to practice. And by that, I mean give it a month or 6 weeks, and see if you are seeing any changes in your sleep patterns. It took me 3 months to get to the point where I could sleep 7 hours, so this might take some time for you.
I have already used the CPAP for 7 months,dear!Enough time to practise,I think.

I'm sorry I don't have anything magic to help. I'll I can do is to offer to help you solve problems and to encourage you to keep trying.
Thank you so much.I wish for magic things also.

-john-

Sleepybaby
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Re: Newbie,thinking of giving up

Post by Sleepybaby » Wed Nov 25, 2009 11:15 pm

KatieW wrote:Sleepybaby, you said you're in China? Isn't the internet wonderful? I'm so glad you found this forum, and that there are many people here who want to help.

As you can see from my avatar, I am Chinese, born in Canada, but my mother was born in Canton province. I've lived in the US for 25 years, after marrying my husband.
Marvellous!
Have noticed your logo before,you do look like Chinese.Finally confirmed by you.That's great!

Sleepybaby
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Re: Newbie,thinking of giving up

Post by Sleepybaby » Wed Nov 25, 2009 11:27 pm

DoriC wrote:Yes, it is hard to give any meaningful advice right now, but you can reset the therapy usage to 0 as below. Also, if you're not having too much trouble exhaling with that relatively low pressure, you might want to lower the Aflex to 2 or 1 and see if that makes a difference. Keep us updated and don't give up,. Dori

Resetting the M series machine's weekly/monthly averages back to zero:
1. Unplug the machine at the back.

2. Hold down the left and right arrow <- -> buttons together while plugging in the power at the back. Machine will make two quick beeps. Keep holding the two buttons down for about 6 or 7 seconds more until you hear a single beep. You'll see these words on the screen:

<-- DATA --> SETUP +

Release the two arrow buttons.


2. Press the RIGHT arrow key.
"Therapy Usage" will appear on the screen with "7 Day Avg" "30 Day Avg" "Hrs/Night"

3. Press and HOLD down the minus key (-) for at least 5 seconds until the Hrs/Night numbers reset to 0:00.
Release the minus key.

4. Press the On/Off button to exit.

Resetting the therapy details does not erase or affect data on the Smart Card. It's simply a way for you to get to see overnight results the next day in the LCD window, instead of a running weekly/monthly average.
So useful and detailed.I cannot say more...

Sleepybaby
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Re: Newbie,thinking of giving up

Post by Sleepybaby » Wed Nov 25, 2009 11:31 pm

[quote="peppi"]I wonder if your Aflex setting is similar to ResMeds EPR setting.
I changed my setting from 3 to 2 last evening and I notice the machine responds quicker to inhale than on 3.
How did you find that?Very surprised to know.

Sleepybaby
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Re: Newbie,thinking of giving up

Post by Sleepybaby » Thu Nov 26, 2009 9:01 pm

Yesterday night,I tried again to change the settings as below:

Auto
A-Flex Level 1
Max pressure:14.0
Min pressure:6.0
Auto ramp time:0:30 min
Auto ramp pressure:4.0

I seemed to sleep last night without even one wakeup.That is good.However,why I am not refreshed today?I am still feeling very tired and sleepy today,even I can say that it's worse than the nights with 3-4 wakeups.Very surprised and do not know why.

Also,I put the machine lower on the floor,and still rainout in the mask.Still haven't tried hose cover.Maybe will not work out also.

DoriC,according to your instructions,reset the machine data to be Zero successfully last night.However,this morning I checked and no data shown on the screen at all,still 0:00 for system leak,AHI,and therapy usage,and 90% pressure.There should be some data,since I used the machine last night.What happened?Clarify for me pls

SaltLakeJan
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Re: Newbie,thinking of giving up

Post by SaltLakeJan » Thu Nov 26, 2009 10:16 pm

Sleepybaby,
I'm joining the people here who given you excellent advice. I have a couple of simple things to add. I had rainout when I started Cpap in January 2009. Someone on this forum told me to put as much of the hose as I could under the bed covers.
That helped greatly until I got a heated hose.

I noticed your mask is a Profile Light. I found this information for your mask online

"When choosing a size in the Profile Lite, keep in mind that the size range is very wide, from petite to large. The large sizes are rarely used by anyone but very tall people, and even the medium can be too big for many men."

I don't recall you mentioning the size of your mask. It may be entirely too large for you.

I'm am sorry about your loss. It may take a quite a while to finish the natural grieving process.

Please do your best to continue with your therapy. There are knowledgeable people here to help you.

My very best wishes for you.


Jan

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Pugsy
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Re: Newbie,thinking of giving up

Post by Pugsy » Thu Nov 26, 2009 11:00 pm

Sleepybaby wrote: I seemed to sleep last night without even one wakeup.That is good.However,why I am not refreshed today?I am still feeling very tired and sleepy today,even I can say that it's worse than the nights with 3-4 wakeups.Very surprised and do not know why.

Also,I put the machine lower on the floor,and still rainout in the mask.Still haven't tried hose cover.Maybe will not work out also.

DoriC,according to your instructions,reset the machine data to be Zero successfully last night.However,this morning I checked and no data shown on the screen at all,still 0:00 for system leak,AHI,and therapy usage,and 90% pressure.There should be some data,since I used the machine last night.What happened?Clarify for me pls
Sometimes when resetting data to zero it takes a few hours for the new data to show up. When I did it the data didn't show up till afternoon.

Do the hose cover thing. It will help some with the rain out. Also remember that sometimes the rainout in the mask is condensation from moisture in our exhaled air.

Wake up refreshed? Ahhh, not always easy to attain that goal. I have good data nights and so so sleep nights and most of the time I seem to miss those mornings where I feel grand. Instead I am in pain and tired and move slowly. I have other issues besides OSA that impairs my sleep quality. I have had a handful of days where the "miracle" happened. It does occur, just not as often as we want. Even if I saw no improvement in that aspect of things I would never give up. I would be thinking "prevention" and stopping all those ugly complications from untreated apnea. I have seen slight improvement though. Tiny glimpses.

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DoriC
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Re: Newbie,thinking of giving up

Post by DoriC » Fri Nov 27, 2009 9:44 pm

Pugsy wrote:
Sleepybaby wrote: .

DoriC,according to your instructions,reset the machine data to be Zero successfully last night.However,this morning I checked and no data shown on the screen at all,still 0:00 for system leak,AHI,and therapy usage,and 90% pressure.There should be some data,since I used the machine last night.What happened?Clarify for me pls
Sometimes when resetting data to zero it takes a few hours for the new data to show up. When I did it the data didn't show up till afternoon.
Yes, if I remember, that happened with our new(used) backup machine a few months ago, we thought it was broken but the data showed up later.

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Sleepybaby
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Re: Newbie,thinking of giving up

Post by Sleepybaby » Sun Nov 29, 2009 7:10 pm

Yes,Jan,my mask is Profile Light,sized "SM",which means between small and medium.This weekend,I tried another mask Resmed Mirage Micro,and Activa LT.The sizes are large and wide,and just found they are even noiser than my present Profile Lite.So I am now so much confused about the masks.Where can I get the quitest mask?

Sleepybaby
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Re: Newbie,thinking of giving up

Post by Sleepybaby » Sun Nov 29, 2009 7:25 pm

Pugsy and DoriC,thanks a lot for your own stories.Will try to check the data again tonight.

Wake up unfreshed?Is it common for most of the people?

Pugsy,when did you start with the CPAP?The time of therapy will also matter,I think.Wish you good luck.

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roster
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Re: Newbie,thinking of giving up

Post by roster » Mon Dec 07, 2009 7:03 am

You may also be interested to know that Dr. Steven Park is a leading-edge writer on the subject of obstructive sleep apnea (OSA). He is of Chinese ancestry and has some things to say about the prevalence of OSA in the Chinese population. He has written an excellent book and you can find many of his writings at http://doctorstevenpark.com/about . Be sure to click on Articles, Expert Interviews and Sleep Apnea Blog.

BTW, I found the A-Flex feature made the machine noiser and interfered with my sleep. You may want to try turning it off.
Rooster
I have a vision that we will figure out an easy way to ensure that children develop wide, deep, healthy and attractive jaws and then obstructive sleep apnea becomes an obscure bit of history.https://www.youtube.com/watch?v=0ycw4uaX ... re=related

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DoriC
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Re: Newbie,thinking of giving up

Post by DoriC » Mon Dec 07, 2009 10:29 am

rooster wrote:. He has written an excellent book and you can find many of his writings at http://doctorstevenpark.com/about . Be sure to click on Articles, Expert Interviews and Sleep Apnea Blog.

BTW, I found the A-Flex feature made the machine noiser and interfered with my sleep. You may want to try turning it off.
Ditto for the Cflex as well. I also learn a lot from Dr. Park's articles. Thanks for reminding me to check on him again.

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Mask: Mirage Quattro™ Full Face CPAP Mask with Headgear
Additional Comments: 14/8.4,PS=4, UMFF, 02@2L,
"Do or Do Not-There Is No Try"-"Yoda"
"We are what we repeatedly do,so excellence
is not an act but a habit"-"Aristotle"
DEAR HUBBY BEGAN CPAP 9/2/08