Newbie,thinking of giving up

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
pmcall57
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Re: Newbie,thinking of giving up

Post by pmcall57 » Mon Nov 23, 2009 8:39 am

There are solutions to the water problem: hose covers, heated hoses. Search for "rainout" here on the board.

I'm so sorry for the loss of your baby. But please don't give up ...

Pam

Sleepybaby
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Re: Newbie,thinking of giving up

Post by Sleepybaby » Mon Nov 23, 2009 8:36 pm

Thanks for all of your guys.Here is a great forum with nice people.Now encouraged to get a new start.May KatieW is right,I should try one way one time to see the difference.Will report here and discuss with you guys.

For the rainouts,if I lower the machine than the bed,will the water come to the machine itself and destroy it?That will be too bad then.
Hose cover?Does it mean that cover the hose with towel or something else?I am not sure of that.
Heated hose?Heat the hose before sleep?Or there is a hose which it can be heated automatically itself?Confused.

BTW,I do not use the humidifier at all.

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Muse-Inc
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Re: Newbie,thinking of giving up

Post by Muse-Inc » Mon Nov 23, 2009 8:49 pm

Rainout: put the machine lower than the bed. Some of us have it sitting on a library step, those 9-12 inches high single steps, holds the machine nicely, and sits nicely between my nightstand and bed.

A hose cover is like a thick sock for the hose. Rainout occurs because the air is warmer than the room air which cools the hose causing condensation inside the hose. Rainout reduces the pressure so is something you want to avoid. Cutting the tops of several old athletic socks off and threading the hose thru them would be one way to see if a hose cover helps. I just made one out of some fleece and got some small ponytail scrunchies (covered elastic hairbands ) to close off the ends so cold air won't seep inside.
ResMed S9 range 9.8-17, RespCare Hybrid FFM
Never, never, never, never say never.

jweeks
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Re: Newbie,thinking of giving up

Post by jweeks » Mon Nov 23, 2009 8:54 pm

Sleepybaby wrote:For the rainouts,if I lower the machine than the bed,will the water come to the machine itself and destroy it?
Hi,

Yes, the water will run back into the machine, and yes that is OK. The water will end up in the humidifier tank, and it will never get to any part of the machine where it can hurt either you or the machine. That beats having it run down into your nose, which has happened to me a few times, too.

BTW, you might want to try running with the humidifier turned on. Try it on a low setting at first. A little warmth and moisture in the air can make it a little more comfortable.

-john-

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roster
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Re: Newbie,thinking of giving up

Post by roster » Mon Nov 23, 2009 8:57 pm

Never mind. I see you are asking the same questions in two separate threads. Tsk, tsk.
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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Gerryk
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Re: Newbie,thinking of giving up

Post by Gerryk » Tue Nov 24, 2009 10:54 am

I see your questions about the hose cover and the water running back into the machine were answered. As far as not knowing what all these terms mean, we were all there once and forget that and just use those terms. If you do hear something you don't understand you can ask us, go take a look up above where it says newbies start here or go to the WIKI many of the abbreviations and terms used on these boards are there.

Keep at it

Gerry

rise&shiner
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Re: Newbie,thinking of giving up

Post by rise&shiner » Tue Nov 24, 2009 11:35 am

The fact that you have reached out to all of us this forum proves that you want to succeed with your tratment. that's the first step to recognize that you need help and then go and find it, decipher the information and keep finding something that will work for you.

Even though the Series m is a great machine it might not be the machine for you. The reason there are so many manufacturers coming out with the "perfect machine" it is just like trying to find the "perfect" mask sometimes it takes trying out different equipment which I know can be expensive.

You can see if there are others in your rea who have a different cpap from the one you have and see if you can give it atry sometimes just hooking up your mask for 30-60 minutes is enough time to so if it is worth invesing in another machine.

I don't believe that you indicated whether or not you were taking any medication? Maybe taking an antidepressant might be helpful to you. If you re not doing physical exercise that might be helpful also with all you are going through. Yoga or pilates might just be the thing.

Please remember that we all participate in this forum to not walk this journey alone and to have a better life, so we're here for you.

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Sleepybaby
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Re: Newbie,thinking of giving up

Post by Sleepybaby » Tue Nov 24, 2009 10:35 pm

Muse-Inc,& jweeks,thank you for your advice.Tonight I am going to put the machine lower on the floor to see whether I can avoid the rainouts.Yesterday night,the rainout came to my nose again.Also,thanks for the making of hose cover,which is very helpful to make me understood.

Rise&Shiner,I am going to give a try for Resmed S8 II machine,and Resmed mask maybe this week.You know that I am not in USA,but in China,where such CPAP treatment is so unusual.In that case,I can hardly share with others,and we do not have enough choice of different vendors.Also,we do not have the medical insurance to cover the expenses.All these make me difficult.Really thank all of you.

Sleepybaby
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Re: Newbie,thinking of giving up

Post by Sleepybaby » Tue Nov 24, 2009 10:43 pm

Yesterday night was my first trial of solutions.Change the pressure to be Min 7.0 to Max 12.0,and no improvement last night.

My machine is Respironics M series auto CPAP,with Respironics Profile Lite Gel Nasal Mask,without humidifier.

Here below my settings and some readings:
Auto
A-Flex setting 3
Min:7.0
Max:12.0
Autoramp:0:20 Min at ramp pressure 6.0
90% pressure:9.4 (7 days average)
9.2 (30 days average)
System Leak:27.1 (7 days average)
25.4 (30 days average)
AHI:3.4 (7 days average)
4.1 (30 days average)

Any problems?And what makes the wakeups?

jweeks
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Re: Newbie,thinking of giving up

Post by jweeks » Tue Nov 24, 2009 11:16 pm

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.

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 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.

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'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.

-john-

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KatieW
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Re: Newbie,thinking of giving up

Post by KatieW » Tue Nov 24, 2009 11:32 pm

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.

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DoriC
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Re: Newbie,thinking of giving up

Post by DoriC » Wed Nov 25, 2009 11:21 am

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.

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tattooyu
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Re: Newbie,thinking of giving up

Post by tattooyu » Wed Nov 25, 2009 12:59 pm

DoriC wrote: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.

...
Wow, quite some steps to reset data. Makes me glad I have a ResMed!
Sleep well and live better!

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peppi
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Re: Newbie,thinking of giving up

Post by peppi » Wed Nov 25, 2009 1:20 pm

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.
This feels more natural to me and it also helped lower my HI to 4.5 . from 5.5

Im wondering if you have tried playing with that

Best,
Phil
Thanks,
Phil

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DoriC
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Re: Newbie,thinking of giving up

Post by DoriC » Wed Nov 25, 2009 2:54 pm

Yes, Aflex is like EPR, both exhalation relief, but they work differently. It didn't match my husband's breathing pattern so we turned flex off completely and he breathes more naturally now.

Tattooyu, I know resetting looks complicated but if I can do it then it's easy. And I love my Respironics!

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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