newly diagnosed - my story

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
amyandtoby2011
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Location: Missouri, USA

Re: newly diagnosed - my story

Post by amyandtoby2011 » Fri Nov 04, 2011 2:14 pm

All I can say is... Mmmmm, good sleep.
lol
I got my machine, and by the time I got home later in the evening I wasn't feeling all that tired. I knew it was just the excitement and overstim of all that noise at the bowling alley.I worked to settle my brain down, and tried to sleep sometime between 12:30 and 12:45. I woke within the hour when my dog moved at my feet, and then kept getting leaks around the bridge of my nose near my eyes. I finally got really annoyed, somehow got it to work, and fell deeply asleep.
A couple more times waking up, once when I took the mask off for a couple minutes to let my face kind of have a change of sensation, then I woke up at 8:30. I remember thinking, "Okay, I could get more sleep, but why am I up this early?" I puttered around briefly, and did go back to sleep. It was the deepest sleep I feel I had all night/morning.

Is it normal to want to sleep, even taking my customary naps, still? I know it was my first night, but I feel today like I could just sleep and sleep, and I wouldn't really care. It feels like restorative sleep, not the I'm-waking-up-feeling-half-dead sleep of all these years.

My speaking voice is higher when I wake up on CPAP than it used to be. I'm a second soprano, but I have a fairly strong lower range. It's always baffled me why my speaking voice kept dropping lower and lower over the years-not drastically, but dfinitely noticeable. I woke up from my nap and was able to sing a little. That baffles me in a good way.

I keep Toby clipped to a leash at the foot of my bed when I'm not in my room. I'm not sure if he'd take a liking to my mask, but I'm not willing to take a chance--afterall, he is a dog first.

Edit: Can't figure out how or where to fill out my equipment in my profile. Started a new thread, asking some very specific questions about it, because I'd really like to figure this out.

And, I agree. My sleep felt wonderful! I think I slept too much today, though. Feel in a bit of a fog. But I feel calm and relaxed, too, like I know it was good sleep.

_________________
Mask: Mirage Quattro™ Full Face CPAP Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: Diagnosed 10/25/11; sleep studies on 10/24/11 and 10/31/11; CPAP received on 11/3/11. Set to ramp from 12-16. Climateline and small quattro.
Last edited by amyandtoby2011 on Fri Nov 04, 2011 3:17 pm, edited 1 time in total.

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RomeinDNVR
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Re: newly diagnosed - my story

Post by RomeinDNVR » Fri Nov 04, 2011 2:19 pm

Great to hear your first night went so well!!!

I think it is completely normal to want to keep sleeping, your body hasn't had a good night of restorative sleep in so long it is only natural that it is asking for more. I hope you continue to have good nights!

Rome

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Machine: PR System One REMStar 60 Series Auto CPAP Machine
Mask: Wisp Nasal CPAP Mask with Headgear - Fit Pack
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amyandtoby2011
Posts: 29
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Location: Missouri, USA

Re: newly diagnosed - my story

Post by amyandtoby2011 » Sat Nov 05, 2011 9:08 am

Well, last night felt like a fitful night. I kept getting leaks up by my eyes, no matter what I did. Too much tightening of the straps made my face hurt, so then I'd loosen them. The leaks would start up, and I'd go through it all over again. I must have removed my mask three times in the night to fix it. I woke around 7:30, after maybe six hours of sleep, took the mask off, and promptly fell asleep for another hour or two. I didn't mean to do that, and in fact, until I checked the time, didn't realize I'd slept. Only my dry mouth gave it away.
I forgot to ask the size of my headgear, but it's whatever came with the extra-small Mirrage Quattro. I was wondering last night, "Well maybe I just need smaller headgear." I don't think that's it--the straps can go pretty tight. I just think I have a small nose. lol

I feel rested, though still somewhat sleepy. I'm kind of annoyed at the mask for interrupting my sleep like that. That and, whene I was half-asleep and went to put the whole thing on, I woke back up, which means it took me a while to actually sleep.
But I can say that i'm trying new positions now. Lying on my side seems to be the difficulty--the mask likes to move around then. How do people even sleep on their stomachs on these things? *boggle*

_________________
Mask: Mirage Quattro™ Full Face CPAP Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: Diagnosed 10/25/11; sleep studies on 10/24/11 and 10/31/11; CPAP received on 11/3/11. Set to ramp from 12-16. Climateline and small quattro.

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TalonNYC
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Re: newly diagnosed - my story

Post by TalonNYC » Sat Nov 05, 2011 9:35 am

Hang in there. getting used to the mask and taming leaks are the two biggest hurdles.

But, remember that you sleep on a mattress and sleep in pajamas. You mind has learned to edit those things out of your "world" when you sleep. Your brain will do the same for the C P A P system as well, and usually quite quickly.

As for the leaks, it's often trial and error, so keep trying!

amyandtoby2011
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Location: Missouri, USA

Re: newly diagnosed - my story

Post by amyandtoby2011 » Mon Nov 07, 2011 5:18 am

Not even sure what woke me, except maybe the weird popping sounds my machine was making. I got scared, took the mask off, and the sounds continued. Now, whenever I turn it on without it on my face, there's sprinkles of water that wet my hand.
I've heard the term rainout, but not sure how to deal with this. Too tired to think up a good thread or to search for another one to put this.
The humidifier isn't even that full--it had more water in it yesterday afternoon than it does now. Would pouring more out help? Did I break my machine?
Later I'll move this someplace else if it's better. Might just go to sleep without it, so tired. Don't want to sleep like that, though.

_________________
Mask: Mirage Quattro™ Full Face CPAP Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: Diagnosed 10/25/11; sleep studies on 10/24/11 and 10/31/11; CPAP received on 11/3/11. Set to ramp from 12-16. Climateline and small quattro.

cflame1
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Re: newly diagnosed - my story

Post by cflame1 » Mon Nov 07, 2011 5:51 am

Is there a chance that you put too much water in the humidifier?

_________________
Mask: Hybrid Full Face CPAP Mask with Nasal Pillows and Headgear
Additional Comments: also have various other masks and a Legacy Remstar Auto Bipap with BiFlex

amyandtoby2011
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Joined: Sat Jan 01, 2011 12:00 am
Location: Missouri, USA

Re: newly diagnosed - my story

Post by amyandtoby2011 » Mon Nov 07, 2011 5:52 am

I drained a little water out of the humidifier. Seems to be working better. Now to sleep again..

_________________
Mask: Mirage Quattro™ Full Face CPAP Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: Diagnosed 10/25/11; sleep studies on 10/24/11 and 10/31/11; CPAP received on 11/3/11. Set to ramp from 12-16. Climateline and small quattro.

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Pugsy
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Re: newly diagnosed - my story

Post by Pugsy » Mon Nov 07, 2011 9:28 am

It takes only a tiny bit of water in the hose or mask to make some awfully loud weird sounds.

Overfilling the humidifier tank might allow some of the water to get blown into the hose and make some horrible sounds.

Rain out which is condensation in the hose or mask will also make some horrible sounds. Did you get the climate line hose with your machine or the standard hose? It offers more flexibility in settings that will help eliminate rain out in the hose and mask.

You might need a little fleece hose cover, we call them hose cozy to help limit condensation in the hose depending on which hose you use and what humidifier settings you need.

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Machine: AirCurve™ 10 VAuto BiLevel Machine with HumidAir™ Heated Humidifier
Additional Comments: Mask Bleep Eclipse https://bleepsleep.com/the-eclipse/
I may have to RISE but I refuse to SHINE.

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amyandtoby2011
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Location: Missouri, USA

Re: newly diagnosed - my story

Post by amyandtoby2011 » Mon Nov 07, 2011 10:20 am

The other night, and sometime on Saturday morning, I noticed my humidifer was dry. So yesterday when I filled the chamber I put a bit more water in, knowing there was a chance of rain out. But when it happened in the middle of the night, it shocked me so much I was convinced my machine had broken, and all I could think was that I wanted it to work, and needed more sleep. Then I remembered to pour a little water out, and that donig so might fix the problem. Worked like a charm, after I let the few water droplets come out, and wiped the mask.
I think mine's just the regular hose. My DME didn't say anything about climate line anything, and I didn't think to ask.

On the S9, I've been experimenting with the humidifier. I've been keeping it around a 4, sometimes 3.5.

_________________
Mask: Mirage Quattro™ Full Face CPAP Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: Diagnosed 10/25/11; sleep studies on 10/24/11 and 10/31/11; CPAP received on 11/3/11. Set to ramp from 12-16. Climateline and small quattro.

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Pugsy
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Re: newly diagnosed - my story

Post by Pugsy » Mon Nov 07, 2011 10:37 am

The regular hose has more of a chance of developing true rain out which is condensation in the hose as opposed to a little blow by from over filling the plastic tank.

If you get more water in the hose or mask and you are sure that you didn't over fill the tank you might talk with your DME about the climate line heated hose or consider adding a hose cozy over the long hose.

While the little sprays of water won't hurt you, they are sure annoying and the sounds will sure wake a person up.
So we try to limit them as much as we can.

_________________
Machine: AirCurve™ 10 VAuto BiLevel Machine with HumidAir™ Heated Humidifier
Additional Comments: Mask Bleep Eclipse https://bleepsleep.com/the-eclipse/
I may have to RISE but I refuse to SHINE.

If you want to try the Eclipse mask and want a special promo code to get a little off the price...send me a private message.

amyandtoby2011
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Location: Missouri, USA

Re: newly diagnosed - my story

Post by amyandtoby2011 » Mon Nov 07, 2011 12:18 pm

Well, I obviously can't type well when I've just awakened.

My DME called about half an hour ago to check how I was doing. We talked about the rainout and the leaks. She said that if I'm still having trouble in the next couple days to let them know and we can look into the climate line hose/tubing. With the leaky mask, I'm not sure what needs to happen there. Too tight, it hurts my face, too loose, it leaks. (Wait, I think maybe I said that the other day?)

I'm going to keep trying, might need some ideas along the way.

_________________
Mask: Mirage Quattro™ Full Face CPAP Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: Diagnosed 10/25/11; sleep studies on 10/24/11 and 10/31/11; CPAP received on 11/3/11. Set to ramp from 12-16. Climateline and small quattro.

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BlackSpinner
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Re: newly diagnosed - my story

Post by BlackSpinner » Mon Nov 07, 2011 12:22 pm

amyandtoby2011 wrote:With the leaky mask, I'm not sure what needs to happen there. Too tight, it hurts my face, too loose, it leaks. (Wait, I think maybe I said that the other day?)

I'm going to keep trying, might need some ideas along the way.
Masks have a 30 day return on them - provided by the manufacturers.
The Quatro should float like a hover craft on your face and not hurt at all. However some of us don't have the "Ken & Barbie" face it seems to be designed for. There are many, many full face masks on the market and your DME should provide more then one for you to try out.

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Machine: PR System One REMStar 60 Series Auto CPAP Machine
Mask: Hybrid Full Face CPAP Mask with Nasal Pillows and Headgear
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71. The lame can ride on horseback, the one-handed drive cattle. The deaf, fight and be useful. To be blind is better than to be burnt on the pyre. No one gets good from a corpse. The Havamal

amyandtoby2011
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Joined: Sat Jan 01, 2011 12:00 am
Location: Missouri, USA

Re: newly diagnosed - my story

Post by amyandtoby2011 » Thu Nov 17, 2011 7:56 pm

Hello again. I'm sorry it's been a week or so since my update.

Last week, I kept waking up feeling like something was permanently pressed against my face. I had a mark on the bridge of my nose, and a small one on my chin. Neither were really obvious, just noticeable if pointed out to someone.

I think around the middle of the week, I called the DME. They were very quick, sending someone out on Monday morning. I switched from the extra-small quatro full face to the small. It fits much more comfortably, there's just one problem... my nose is small, I guess. I kept waking up last night to puffs of air up by my eyes. With the extra-small, I had the problem of leaks, but the mask was way too tight on me. Now that I have the small one, and it fits so much more comfortably-no more marks or feeling for hours like I have something plastered ot my face-I have this problem.
And, this week, of all the things I could do? I've started pulling the mask off in my sleep! Last night, I woke around three something without my mask, and I lay there a couple minutes just pondering, "How did I get the mask off, and when?" I couldn't remember doing it, but the weird part was, it was laying facedown on my machine, which is where I put it during the day.
"boggle"
Last night, my sleep was very interrupted, and even when I felt like it wasn't, I know it was because the little puffs of air around my eyes were in my dreams.

On a different note, I switched from the normal tubing that came with my machine to the climateline. I'm still finding a good setting--feels weird when the air is warm, but I need the humidity--trying to find a balance there. My humidifier hasn't been bone-dry in the middle of the night this week, which is an improvement.
I feel frustrated with the mask. Too small, and I had marks and leaks. Comfortable fit, and I still have leaks, but no more marks. Can I win here?

I like the quatro because of the quick snap things on either side of the mask. I can handle velcro, but to have to undo it, then readjust it every night isn't something I want to do, so I'd really like to make this work somehow.

I feel tired today because of all my interrupted sleep. I hope I can sleep better tonight.

Thoughts on the mask?

_________________
Mask: Mirage Quattro™ Full Face CPAP Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: Diagnosed 10/25/11; sleep studies on 10/24/11 and 10/31/11; CPAP received on 11/3/11. Set to ramp from 12-16. Climateline and small quattro.

amyandtoby2011
Posts: 29
Joined: Sat Jan 01, 2011 12:00 am
Location: Missouri, USA

Re: newly diagnosed - my story

Post by amyandtoby2011 » Fri Nov 18, 2011 6:06 am

Need to come up with a better subject line...

So I'm up since four or so. Mask has been off, and I've been reading the forum and thinking.
I'm still confused if my nose is small, or if it's something else causing my problems.
Just now, I remembered that when I tried the mask on Monday with the DME here, I had my hair up in a ponytail. I have long hair, and lots of it. This week I've had it down when I slept. I just put it up, and I feel pretty good with the mask on. Granted, I haven't tried laying on my side. Sometimes I wonder if I should just relegate myself to sleeping on my back, regardless of the fact that I love sleeping on my side or stomach--at least I used to.
Maybe I should get my hair cut so I can handle a better fit around my head?
I'm not opposed to trying a new mask, but I relaly love these clips that make adjusting, then leaving the straps, possible.
Now, how to deal with dry mouth, or better yet, keeping my mouth closed. I feel I breathe better with my mouth closed, even though it's a full face mask. Tired of waking with the dry mouth from hell.

Is it strange to have one side of the mask a little tighter than the other? I had them both the same, but the right side leaks more than the left... I know you're supposed to have them equal, but why is it always the right side?
Is my face asemetrical?
Just throwing out random thoughts before I try sleep again.

_________________
Mask: Mirage Quattro™ Full Face CPAP Mask with Headgear
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control
Additional Comments: Diagnosed 10/25/11; sleep studies on 10/24/11 and 10/31/11; CPAP received on 11/3/11. Set to ramp from 12-16. Climateline and small quattro.

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msradar65
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Re: newly diagnosed - my story

Post by msradar65 » Fri Nov 18, 2011 12:30 pm

Amy,
I think you are off to a good start. Keep playing with the mask until you find a good fit. You may also want to try a mask liner from Pad-a-cheek. That could help with the mask seal. They are made of a very soft smooth thin fabric. Karen does beautiful work with the mask liners.

As far as keeping you mouth shut. LOL it comes with lots of practice. I never had an issue with mouth breathing. I think if you get the climate line hose you may not feel as dry.

With the climate line you set the temperature you feel best at and the machine does the rest. It delivers 80% humidity at the temperature of your choice.

I personally have mine set at 65 degrees. In the summer I turn the humidifier off and use it in passover mode.
Diagnosed 08/31/10. Titration 9/02/10. Started CPAP 11/01/10. Auto mode 10-15cm. Alternate mask GoLife for her. Back up mask Full-life full face w/Pad-a-cheek mask liner. Comtec CMS F50 wrist pulse oximeter. Sobakawa Cloud Pillow, Sleepyhead software