I Hate My CPAP!

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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cherylgrrl
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Re: I Hate My CPAP!

Post by cherylgrrl » Tue Sep 18, 2012 10:40 pm

I can only report on my own experience with Ambien. It has been very gentle. If I awake a couple hours after I take it, it doesn't keep me from getting up, using the restroom, etc. During my second sleep test, I took one then still couldn't go to sleep. I asked the sleep tech if I should take another at midnight knowing they'd want to wake me up and hustle me off shortly after 6 am. The sleep tech told me I could take a second anytime until 2 am. So I did, and I had a successful titration.

I took it almost every night after getting CPAP for about 2 months. Then only on the nights I tried a full face mask. Now now at all. It was tremendously helpful, and I'm really glad I had a prescription.

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ValShotz
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Re: I Hate My CPAP!

Post by ValShotz » Wed Sep 19, 2012 3:43 pm

Hey, I just wanted to drop a quick note from my tablet to say thanks again for all this information. I'm on vacation this week but as soon as I'm back to my laptop, I'm gonna have tons more questions. I didn't want anyone to think I just flaked out. Thanks again!

-Val

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the_nap_ster
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Re: I Hate My CPAP!

Post by the_nap_ster » Thu Sep 20, 2012 6:10 am

Hi Val,

I know I'm late to this party, but let me say: WELCOME!

Like others, it drives me crazy when doctors tell people it'll only take a week or two to adjust to CPAP. With compliance around 50%, I just don't think that's true. Some lucky ducks do great out of the gate, but it is more of a struggle for MOST of us. If doctors told us to expect a decently long adjustment period and warned us that our sleep might get worse before it got better, I think it might set expectations more accurately. Because we don't use our CPAPs (just) to sleep better. We do it so our organs don't fail. And it's worth the struggle!

I'm one of those that took MONTHS to adjust. Maybe six months. I don't say this to discourage you, but just to let you know that you're not alone. For me, finding the right mask was really, really hard, and it took trying over 20 of them (along with various chin strap/taping arrangements) to find a few that work for me. But now I LOVE my masks, and my APAP! I can't sleep without them. In other words, it gets better!

Here's what I WISH I'd tried sooner:

-- Mask liners. I love my Padacheek liners. Love, love, love. But the RemZzzz liners work too. They made masks go from *miserable* to *comfortable* for me. They eliminate that hard, sticky silicone feel, prevent leaks, and stop masks from sliding around. And they only work BETTER when you use moisturizer! I think these should be standard issue when you get a mask, so you can at least TRY them. Single most important thing I did to turn my experience around.

-- Trying more masks. Trying on masks is like dating, and one person's Prince Charming is another person's frog (and not a cute Chunkyfrog either! ). There are very few BAD masks, but there are a whole lot of masks that won't work for any one person. There is just no way to know what the right mask for you will be based on someone else's experience. Once I just resigned myself to TRYING a bunch and learning when to say, "This shape just doesn't quite fit my face," I finally found some of my Prince Charmings. And for me, that meant trying several types of masks too: nasal (fabric and non), nasal pillows, FF, and hybrids. I learned what MY trigger-points are, like having anything hard over the bridge of my nose. That let me figure out what kinds of masks to focus on. The first couple of masks people try OFTEN don't work out for them. I wish I knew that going in.

-- Use that software! Let me reassure you, it is almost impossible to delete your data. I mean: you'd have to WORK to figure out a way to delete it! Don't worry about it. But the data will help you pinpoint what is going on with your therapy. It will tell you if you need to tweak your pressure, if your mask is too leaky, etc. Trying to problem solve without access to your data is like trying to drive to work blindfolded. It just won't end well. And the software is REALLY easy to use, and people here will help walk you through every step of the way.

I hope you're having an amazing vacation, and we look forward to more of your questions when you get home!

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The Sheikh
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Re: I Hate My CPAP!

Post by The Sheikh » Sat Sep 22, 2012 3:38 pm

In the beginning I couldn't even wear a tiny nasal breathing strip across my nose without feeling panicked. The full face mask was a gagger as well as the nasal mask. But after wearing the mask with the machine running for several hours each day while working at the desk, I was OK with it.

But then came the final acceptance: About the best advice I've ever heard for getting used to the mask and associated CPAP trip...

Convince your brain that the mask is your FRIEND. The subconcious will eventually realize that the mask is helping it to live, breath and feel better. In the beginning, the brain feels a new obstruction on the face and thinks, "aha! So maybe THIS is what's been smothering me. Never felt it on there before." But over time it realizes the mask is the reason it can now let go and sleep without fear.

So, whenever I get an occasional clastrophobic feeling, I simply repeat over and over, "The mask is my friend, the mask is my friend." And the feeling goes away as I drift off to sleep.

But it does take time, depending on your body's ability to adapt to change.

Tom

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glenwood73
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Re: I Hate My CPAP!

Post by glenwood73 » Sun Sep 23, 2012 5:52 am

Hi, Valerie

I too just got a new machine same as yours, it seems very quite compared to my old one.. I have a fisher paykel full face mask that I love...Maybe you should try this mask since you are a stomach sleeper like me....My problem is I still feel very tired in the morning. I have no problems with machine or mask..Well good luck and welcome to the sight...





Mike

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ValShotz
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Re: I Hate My CPAP!

Post by ValShotz » Thu Sep 27, 2012 7:38 pm

I apologize that it's been so long since I've replied to the great advice and information here. I'm still having quite a tough time adjusting to my mask, but since several of you have mentioned the awesome products at Pad A Cheek, I'm looking forward to placing an order for a couple of things next week. I don't go back to see my sleep doctor until December, so I am hoping that by then, things will have gotten better, but I'm trying not to put any pressure on myself to get it down pat in any certain amount of time. If it's not working out well by the time I see him, I'm definitely gonna ask for a mask change.

I thought that Sleepyhead software was really neat. Thanks to all of you who suggested that! I've only used it twice since I found out about it, so I'm still kind of feeling my way through it, but I found out something really interesting:

My husband and I went on vacation last week, and, of course, I brought my CPAP setup along with us. I don't know what it was about the trip, but I slept like a baby the whole time we were at the beach. I didn't wake up with mask moving issues, no aches and pains, and no problems with leaks. I mean, honestly, it was the best week of sleep I've had since I got all of my equipment. But here's the funny thing -- when I got home, I popped my SD card in my computer to see what data I could find about that week on Sleepyhead, and if I'm reading this correctly, which I think I am, I didn't have a single night of "open airway" data collected on there. I have no idea what this means, except that, obviously, the machine didn't record any signs of my airway being open while I slept that whole week. So I have to wonder, if my airway wasn't open on its own, how come I slept better than I have when I do have an open airway part of the night? I thought that was so strange! I would have thought that if I had an open airway, it would be the most natural way for me to sleep, so I would wake up feeling well rested. Does this mean the machine was basically doing the breathing for me the whole time we were away? I'm looking forward to asking my doctor this when I see him in December, if I remember. It just seems so weird to me that the whole time we were away, I slept perfectly, but as soon as we returned home, the problems arose again.

Anyway, thanks again to all of you for listening to me and helping me get adjusted to this. I really appreciate it, and I look forward to learning more from everyone!

-Valerie

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Xney
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Re: I Hate My CPAP!

Post by Xney » Thu Sep 27, 2012 7:46 pm

I'm not sure what the data or lack of it means, but how did your sleep feel after a few days, more rested?

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The Sheikh
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Re: I Hate My CPAP!

Post by The Sheikh » Thu Sep 27, 2012 7:54 pm

ValShotz wrote: I didn't have a single night of "open airway" data collected on there. I have no idea what this means, except that, obviously, the machine didn't record any signs of my airway being open while I slept that whole week.
-Valerie

From what I read, you had no central apneas while at the beach and you normally do at home.

Just a guess, but the beach is at sea level - what is the elevation at home? Higher elevation (less atmospheric pressure) can spur centrals. It depends on how close you are to the edge.

Also, when did the majority of centrals occur at home, when falling asleep?

Another possibility is that you were having different sleeping patterns at the beach due to the salt air - and possibly being more tired due to more sun, etc. Perhaps these new sleeping patterns were better to nuke the centrals. But the real world is sleeping at home, so keep doing your detective work.

Tom

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chunkyfrog
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Re: I Hate My CPAP!

Post by chunkyfrog » Thu Sep 27, 2012 9:33 pm

I believe that "Open airway" in Sleepyhead means an open airway apnea, either a hesitation due to a
brain glitch or simply holding your breath while changing position in bed or reflexes while
transitioning between sleeping and wakening. This may have been absent because you were
more relaxed on vacation. Normal life has more stress stimuli, and may raise the number of
recorded open apneas. Again, unless open apnea numbers are unusually high, not usually a problem.

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todd2968
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Re: I Hate My CPAP!

Post by todd2968 » Thu Sep 27, 2012 11:47 pm

I feel your pain. I have same machine and have turned off and drained the water all together.
I stop worrying about leaks and wear it comfortable and try to not have leaks but my stats say its not a big deal.
Down load the program to read the sd card data and look at leaks and if good and bad nights
Google sleepyhead cpap
Good luck

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archangle
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Re: I Hate My CPAP!

Post by archangle » Fri Sep 28, 2012 3:09 am

ValShotz wrote: I popped my SD card in my computer to see what data I could find about that week on Sleepyhead, and if I'm reading this correctly, which I think I am, I didn't have a single night of "open airway" data collected on there.
Please describe what you mean by "open airway" from SleepyHead.

If you're talking about "OA" or "CA" on SleepyHead, that means "Obstructive Apnea" or "Clear Airway" apnea.

Do you mean the green and white horizontal stripes in the "Event Flags" area? SleepyHead has the somewhat confusing feature that it doesn't show OA or CA rows if you don't have any.

If that's what you mean, that's great. Not having CA or OA an indication your CPAP is working well.

What does SleepyHead show on the left of the details screen under AHI. hypopnea, apnea, etc.?

One caution, a number of people have reported that S9 machines occasionally get stuck on a false AHI=0 reading. Unplugging the power and plugging it back in resets it.

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ValShotz
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Re: I Hate My CPAP!

Post by ValShotz » Fri Sep 28, 2012 8:23 pm

Xney wrote:I'm not sure what the data or lack of it means, but how did your sleep feel after a few days, more rested?
I don't know, on some days I did and on some I didn't. I'm not sure if it was because of my sleep patterns or because some mornings I woke up to go to the bathroom and couldn't fall right back to sleep afterward. Interesting question!

The Sheikh wrote:From what I read, you had no central apneas while at the beach and you normally do at home.

Just a guess, but the beach is at sea level - what is the elevation at home? Higher elevation (less atmospheric pressure) can spur centrals. It depends on how close you are to the edge.

Also, when did the majority of centrals occur at home, when falling asleep?

Another possibility is that you were having different sleeping patterns at the beach due to the salt air - and possibly being more tired due to more sun, etc. Perhaps these new sleeping patterns were better to nuke the centrals. But the real world is sleeping at home, so keep doing your detective work.

Also an interesting question. It's apparently about 300 feet above sea level where I live, but I wonder if it's enough to make a difference. The sleep pattern thing is pretty right on, especially the part about being in the sun some of the time, and in salt air and water. Maybe all of this means that I need to get my butt a condo at the beach and move out to the coast!

As far as knowing when the majority of central apneas occurred, I'm not really sure. I've looked at Sleepyhead to try to figure it out, but I can't seem to find a way to break each day's data down by time. I'm gonna post a screenshot of the AHI graph below, but I'm not sure if that even helps any since you all aren't able to hover over each day like I can here with the program open.

archangle wrote:Please describe what you mean by "open airway" from SleepyHead.

If you're talking about "OA" or "CA" on SleepyHead, that means "Obstructive Apnea" or "Clear Airway" apnea.

Do you mean the green and white horizontal stripes in the "Event Flags" area? SleepyHead has the somewhat confusing feature that it doesn't show OA or CA rows if you don't have any.

If that's what you mean, that's great. Not having CA or OA an indication your CPAP is working well.

What does SleepyHead show on the left of the details screen under AHI. hypopnea, apnea, etc.?
When I wrote "open airway," I misspoke (miswrote ), and what I meant was "clear airway." I didn't know until just now that it was an apnea (central apnea, if I read another thread here correctly), and I mistakenly thought that it meant my airway was clear on its own, without the help of the machine, and that it was recording data of me breathing fine by myself. I guess it does mean I had no central apneas at that time, though, which, like you said, is pretty great. The AHI for that week is anywhere between .30 and .97, the data for OA and hypopnea (light and dark blue) is kind of scattered, both occurring each night, and I only had "apnea" events (green) twice.

This software is SO fascinating! I wish there were something like a tutorial to help me interpret all of this. I will have to look after I post this, but I'm sure some clever CPAPTalk user has posted useful information on this board somewhere. The help page it comes with isn't very helpful at all, but I sure do love looking at all the graphs, even if I don't really get what it all means.



Here is a screenshot of the data my SD card contains for AHI. I hope it's easy enough to see. I took my vacation from September 15-22, but it still shows the month before, just for comparison's sake. Again, thanks to all of you for your input! Have a great weekend!

Image

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Xney
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Re: I Hate My CPAP!

Post by Xney » Fri Sep 28, 2012 10:51 pm

Your AHI numbers look fine! Assuming your leaks and hours of use are good, too

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Re: I Hate My CPAP!

Post by Pugsy » Sat Sep 29, 2012 6:37 am

If you will look in my signature line I have a link to the Glossary for SleepyHead software. The terms are what we have gleaned from ResMed reports and Respironics reports so the definitions of the terms are the same no matter which software you are using.
There is also a SH tutorial and while that is specific to SleepyHead some of the discussion is about what is seen on the reports and even though the visual image may be different the overall meaning is the same.

Some common things to understand from ResMed machine reporting..
First is the 95% number...all that means is that for 95% of the night you were at OR below that number. People tend to forget the "or below" part. So it is just a number that can vary quite a bit sometimes.
Leaks...ResMed machines subtract a generic vent rate (your mask at your pressure) prior to reporting the leak numbers so what you see is excess leak only. ResMed says that they can handle leaks up to 24 L/min before they run into trouble. So we try to avoid 24 L/min red line as much as possible. If we get close or go over for brief periods of time it isn't the end of the world though.
Now any link that wakes you up is unwanted..even a small leak...but because it has disturbed your sleep and not because it was maybe excessive.
I hit 26 L/min night before last but only for about 5 minutes..slept right through it. I am not going to worry about that at all.

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Re: I Hate My CPAP!

Post by Starlette » Sat Sep 29, 2012 3:18 pm

Pugsy wrote:First is the 95% number...all that means is that for 95% of the night you were at OR below that number. People tend to forget the "or below" part. So it is just a number that can vary quite a bit sometimes.
Oops I thought wrong about that number all this time. Glad you corrected my thinking. All this time I thought 95% was due to test probes.
I looked back at SH and noticed you are correct.

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