New User - trouble adjusting (wants to change settings)

[jjjmac]

Okay, well... I'm not sure what's going on here. I know it can take time to adjust, but I'm starting to get a little worried, as it's been almost 3 weeks now and I still haven't made it through a night with the mask on all night (and the issue doesn't seem to be getting better).

To get it out of the way - I do kind of hate the CPAP for several reasons - limiting sleeping positions for one, just the ridiculousness of the gear for another, and several other relatively petty reasons - most of which I AM getting over.... and just accepting that this is part of life now. And I am grateful to have good insurance and to be able to get a machine, etc. I do think accepting the machine is step #1, so that is a little encouraging.

I got tested for apnea originally because of lingering tiredness during the day and based on some observations of snoring from my boyfriend (and feeling bad and embarrassed that I was keeping him awake). I would feel okay when I woke up in the morning, but then really tired again mid-morning to early afternoon and on days when I did nap, I would nap for 3 hours at a time. However, I rarely woke up with headaches and I do not have any heart issues at this point, nor much else in the way of symptoms. I do have allergies (rather constant post-nasal drip) and the doctor said I had a long but narrow airway. Both my parents and sister snore a lot and have chronic insomnia and problems sleeping and are always tired - I would guess they have apnea too, but none will get tested. I am a little overweight; none of them are. (And even when I have lost weight, I am still reported to snore).

Anyway, I did the sleep study at the end of April and scored moderate (20), but when I look at my test, I see that most of my "events" were triggered when I slept on my back during the test - which I rarely do at home, but did do during the test because they told me to sleep in all positions. So I am kind of wondering how much I even need the machine?

In any case, I did have really bad dry mouth at the beginning. I've adjusted the humidifier and have gotten it to a point where that's usually not a problem. The mask doesn't leak very often - but it does feel pretty tight, and it does feel like it pinches my nose closed just a little near the top. Not a lot, but enough that it freaks me out a little and makes it even harder to breathe through my nose than usual.

I have the full face mask, which I think might be harder to adjust to than some of the smaller masks? But anyway... I have tried adjusting bits here and there, and if I make it any looser then it DOES leak air....so I think it's as tight as it's supposed to be... but I'm wondering if I need a medium instead of a small. My next appt. isn't until Aug. 6th.

The problem is, I can't really fall asleep with it. I start out pretty calm, but the longer the time goes where I don't fall asleep, then I start to get claustrophobic, and then start getting very anxious. So I started taking Unisom and then I WAS able to fall asleep with the mask on most nights... but I pretty much always wake up at 3-4am (go to bed around 11) and end up having to turn it off and take it off because I can't fall back to sleep. When I wake, it seems to be either because the mask slipped or because the air pressure is too high (is set for a range of 5-20). But I'm losing way more sleep trying to initially fall asleep and then, later, trying to fall back asleep, than I ever did to apneas. And I can't keep taking sleeping pills to fall asleep.

The thing is... I never had insomnia (or much anxiety) before. I know it was likely because I was so tired from the sleep apnea, but I could always fall asleep in 5 minutes at night. So being awake for 1.5-4 hours every night is driving me insane. Literally, I start to get rageful in ways that I haven't felt like in many years (since I worked overnights and my sleep schedules was always beyond terrible).

So I don't know what to do. Half the time, I wake up and the mask is off and I don't even remember taking it off. I also have to wear a retainer at night, and before I got the CPAP machine, I had started to remove THAT in my sleep while unaware. aack. I've tried skipping nights from my retainer with the CPAP and that doesn't seem to really help, although it does make me feel slight less claustrophobic.

I'm not sure what I'm asking for here either. I guess - how long does it usually take to adjust to the machine? I'd rather have apnea than insomnia. I'm more than willing to stick this out and try it for at least another 2 months, but I'm afraid that by the time I go back in on Aug 6th, they won't even be able to get any usable data off the memory card because I haven't been able to stick it out a whole night. And I'm wondering if I might be better off trying the dental device, but I'm not sure if I can use that since I have a retainer? Does anyone know how those work?

I'm not sure what numbers, if any, matter from my sleep study but -

Stage 1 - Latency 4.5, Duration 17
Stage 2 - Latency .5, Duration 265
Stage 3 - Latency 23, Duration 78
Stage R - Latency 124.5, Duration 55

Number of Awakenings: 22, Sleep Efficiency 88.2%

Obstructive Apneas - 11, Longest event 19.5 seconds
Mixed Apneas - 1, Longest Event 20 seconds
Central Apneas - 1, Longest event 13.5 seconds
Hypopneas - 12, longest event - 40.5 seconds
RERAs - 112, Longest event - 56 seconds

Overall AHI: 3.6
REM AHI: 6.5
Overall RERA index: 16.2
NON-REM AHI: 3.2
NON-REM RERA: 15.4
Overall RDI: 19.8
REM RDI: 28.4
NON-REM RDI: 18.5
REM RERA Index: 21.8

Respiratory Events by Position:
Back - Sleep Time 2.96, Obs Apnea & Hyp #18, Index 6.1; RERAs #70, Index 23.7
Left - Sleep Time 2.66, Obs Apnea & Hyp #1, Index .40; RERAs #8, Index 3
Right - Sleep Time 1.29, Obs Apnea & Hyp 4, Index 3.1; RERAs #34, Index 26.4

Snoring Summary
Total - 227, Index 32.86, % Test with Snores 49, Snore Arousals 123, Snore Arousal Index 17.8

Oxygen Saturation
90-100% - 412.3 minutes, 99.47% of test
Total number of drops > 4% of baseline - 14
Lowest SpO2 - 90%
Average SpO2 - 96%

Arousals
Respiratory - 78, Limb - 7, Snore - 123, Spontaneous - 100, Total - 308

No arrhythmias noted

LM/PLM Summary
PLM's - 8, Limb movements w/Arousals - 7

[Diablode]

308 arousals, good lord woman! Also seems you have upper airway resistance syndrome rather than sleep apnea with your high RERAs but low AHI, interesting... Still waiting for another night in the lab to confirm it, but my sleep report from a few years back is very similar to yours.

Anyways, about getting used to the mask, it varies from person to person. I've been using cpap for 2 weeks, I was worried about worsening sleep issues as I've had insomnia since I was a child, but first night I slept for 8 hours straight no problem. Its interesting you mention that you didn't have any insomnia issues prior to the mask, its seems like some of the difference between people is how accustomed people are to things bothering their sleep prior to cpap.

A good thing to do to get accustomed to the mask is wearing it while watching tv or reading or what have you with the machine on. It's important that you get used to the mask on your face as well as the pressure. Now what might complicate things is you have an Auto that is set pretty open and it seems as high pressures are what bothers you. Hence the machine will stay at low pressure while awake and you won't be able to get used to higher pressure. You might consider getting into the machine settings, putting it into cpap rather than auto mode and set it to the high pressure thats bothering you, temporarily of course, to get used to the high pressure.

A couple questions to answer that might help other people assist you: What machine are you using? The one you have listed is an older model so I assume its the new 60 series? If so it has the capability to tell you what pressure you are using 90% of the night right on the screen, that information would be good to provide. Furthermore it is fully data capable, you can pull the sd card out of the back and put it into you computer, someone should be able to provide the software to read it (encore basic), I unfortunately don't have the link. You than can view how well the machine is treating you as well as exactly what pressure is causing you to awake.

Trust me I know how frustrating it can be to be awake a lot of the night, but you found a great community here to help you stick it out.

[jjjmac]

I'm not sure when I'll have another night in the lab - there's been no mention of that to this point. But I'll have to look up upper airway resistance syndrome - hadn't heard of that before. Is that better or worse than apnea? I would guess the treatment is the same though, so same issues still apply...

I have the REMstar Auto A-Flex (that model wasn't in the profile list). I'm not sure how to tell if it's the "60 series?" It looks new, and the manual was printed in 2012, so I'm guessing it is the new series.

And yeah, no insomnia issues whatsoever before. I think there would be maybe 2 times a year before where it would take me more than 30 minutes to fall asleep. With my parents and sister having insomnia so bad, I've always been grateful not to have that problem. Man, I'm so jealous that you slept with it all night on the first try!

I have tried wearing it while I'm reading before bed, with it turned on and off... and some nights it seems to end up making more anxious. I think it's pretty much the longer I wear it without sleeping, the worse off I am. If I can fall asleep right away, I'm good for a while (hence, why I've tried taking sleeping pills - and yes, I know it's bad).

The technician who set the machine up did say it was a high range.... I guess that's to try and determine where I actually need it to be, so I am a little hesitant to mess with the settings (esp before I have any really decent readings to draw from). It does have a "ramp" button I can push that immediately decreases the pressure back to 5, and I use that quite a bit - both when it's taking me a long time to fall asleep, and when I wake up in the middle of the night... but once I wake up, I can never fall back to sleep with it, even if I decrease the pressure. I usually try to fall back to sleep for 30-60 minutes and then I take it off because I need to get some sleep, even if it's not quality sleep - it's better than none. (okay, maybe not in reality but I can't make it work without getting at least the crappy sleep).

If I do mess with the settings, I was wondering if it might actually be better to try and just set all night on 5 one night, see if that I wake up... even if it isn;t effective or as effective as it should be, it seems more important (to me) right now that I make it through some full nights with the mask on. Then I could increase it by 5 once I was able to at least sleep with it all night. Of course, the fact that I often unconsciously remove it is also a problem.

On the machine, since you mentioned it, I did poke around the Therapy menu, and the average therapy time is about 3.5 hours. The days greater than 4 hours is 4, and the average AHI is 4.2, Large Leaks and Periodic Breathing are at 0% (likely due to me not wearing it enough?), the 90% average pressure is 11. So 11 would seem to be what I tolerate best? But again, it seems like more time/data is needed to really decide that.

I have seen some mention of taking the SD card out and hooking it up to a reader on your computer. I have a Mac, if that makes a difference. But also, at this point, I really don't seem to have much data to bother doing anything with... so maybe wait until I can hopefully get some better time in. :0/

And I guess 308 arousals is much higher than "usual?" err... :-/

[Diablode]

This is the 60 series: https://www.cpap.com/productpage/pr-sys ... -tube.html
Does it look like that? The previous 50 series looks like that but with a white panel instead of charcoal, basically the same machine but no heated tubing.

The 90% pressure is what the machine was at or below 90% of the time. So I can assume 10-11 pressure is whats bothering you. Starting at a low pressure and raising it as you get used to it isn't a bad idea if you are willing to try, but the reason they left it open is to see what your 90% pressure is so they can close the range later on I assume. But heres the problem in your case, your problem is RERAs, not apneas. CPAP does treat them but whether the machine can accurately detect it in auto mode isn't certain. The respironics machines make an attempt to score them, and can only be seen on a computer, so getting the software setup can tell you if auto mode is even a good idea or if a set pressure may be better.

Can anyone help out with the encore basic software and whether it will work on a Mac?

[kaiasgram]

I have a Mac and use the free SleepyHead software and it works really well, no problems so far. If your Mac is new enough it should have the card reader built into the computer already. I don't know anything about Encore so can't compare the two applications.

Another member of the forum just sent me these links to some good info on RERAs and UARS (I think I'm headed down that diagnostic road too as I have had no improvement in symptoms since starting CPAP a month ago and I have been a "good little patient" and used my machine all night every night!) Here are the links:

http://sleeptreatment.com/index.php?opt ... temid=1992
http://www.apneaboard.com/forums/Thread ... -and-BiPAP

I can imagine you're having a tough time trying to deal with those high pressure settings. Dr. Krakow in his article talks about the benefits of using BiPap instead of Auto or CPAP for UARS because UARS usually requires higher pressures. I appreciate learning about UARS on this forum because as Krakow says, many sleep doctors still don't pay attention to it (mine didn't), and many sleep labs stop titrating once the apneas and hypopneas are controlled, and they stop short of titrating for the RERAs, the respiratory effort related arousals that stress the body and wipe the patient out, and as Diablode said, that's where your biggest problem right now seems to be.

Good luck, I hope you can get back to the sleep lab and correctly titrated on the best machine for your needs. I hope I can too!

[JoeP]

have you considered trying different masks? A nasal or nasal pillow may alleviate some of the anxiety and claustrophobia.

I am able to fall asleep in any position with my nasal pillow mask, and once i am asleep i usually wake up in the same position.

[sleeptimeinNY]

I can't answer all your technical questions... but just want to let you know that it has taken me at least 3 months to adjust to having the mask on my face at night. I did the same thing as you are doing when I first started: taking it off in the middle of the night and sometimes not even aware of doing so. Now, if I take it off, it goes right back on. I hated it when I first started, now it's just part of my night routine.
I did take Ambien for awhile to get me to sleep and admit that I still take 2.5 mg at night to calm my brain to go to sleep.

It also looks like your 5-20 range is really wide. I was diagnosed with straight CPAP of 11, but since I got an autoset machine, I tried 4-15 and couldn't stand it, so I just keep it on 11.

Just hang in there. It takes a lot of patience and determination to sleep with this stuff on our face. It took me weeks to try and move around and switch sleep positions. I even sleep on my stomach with the mask.
You will get lots of good advice here.

Take care,

Ruth

[Stacita]

I'm right about at a month and I feel like I'm turning a corner with the alien facehugger - the past several days I fall asleep easily and stay asleep all night. (Mostly. Sleepyhead told me two nights ago that sometime around 2 am my pressure had gone back down and ramped up again, so either I woke up and hit the ramp button without remembering it, or the cats have learned to ramp me in my sleep. Awesome.) My sleep suddenly feels a lot more like it did before the cpap - which is a good thing in my case.

I hope if you stick it out a little longer you'll hit a good place too. Maybe try the mask liners? The one I ordered for my full face mask just arrived yesterday so I haven't tried it out yet, but I'm hoping it'll fix the occasional leak I still have.

[-tim]

Hi. I play devils advocate in the forum so don't be afraid to ignore anything I say.

Lowest O2 = 90%.... Most people here would love to have that...

Your not bad now but you have all the signs that your going to be bad without treatment. My question is treatment for what?

Why did you have a sleep test? Your reasons are valid but most docs won't go that way. You don't state your age but I'm wondering why didn't the docs go down the depression line of thinking or something else?

You seem to have issues with the mask. Most of us do. You don't use the words that the claustrophobic people use. Can you explain more?

You machine has data. Can you upload graphs of a nights sleep and let the people here take a look at them?

Oh, and Welcome to the forum. Like I said... I'm not the type they let participate in the welcome wagon.

[BasementDwellingGeek]

Stage 1 - Latency 4.5, Duration 17
Stage 2 - Latency .5, Duration 265
Stage 3 - Latency 23, Duration 78
Stage R - Latency 124.5, Duration 55

I think I understand the first line to mean there was a 4.5 minute delay from lights out to the first full 30 seconds on stage one sleep & it lasted for 17 minutes.
I think I understand the last line to mean there was 124.5 minute delay from lights out to REM stage.
I'm confused about .5 for stage 2. How is it less than the stage one latency plus duration? Ditto for stage 3 values.

Can anybody enlighten me and perhaps the OP?

[Wonderbeastlett]

I am so glad to hear someone else is dealing with this! I no longer feel alone! I've had my cpap for a little over 2 weeks and out of those 2 weeks I've slept all night with my mask maybe 3 times! The first week I had my cpap, my mask was leaking like crazy! I had a rough time with my sleep tech. She kept giving too big of masks and finally I ended up with a extra small and it still would leak! I was pulling it so tight I woke up with my nose bleeding! So that was why I didn't use it the first week, that and I needed my nose to heal up. I finally bought the gecko nasal pad which has controlled most of my leaks!

Once I got that taken care of, I started to just lie awake! It doesn't matter what position I'm in I feel sooo uncomfortable. I could be super tired but I wake up almost every hour. I don't know if that's common to new users but I have been doing this for the last week. I want to say its just an adjustment issue and eventually I will get over it. Hopefully all of this just becomes second nature!

[DoriC]

Your sleep may be disturbed because of the changing pressures, some people are very sensitive to that. My husband can only use a very narrow range if he uses auto. It might be a good idea to try straight cpap at 10cms which would probably take care of most of your apneas and the steady pressure may be less of a disturbance. Are you using Aflex(exhale relief)?In the equipment section, scroll down to PR System One machine listings and you'll probably find your correct machine there. Also check Pugsy's signature, she has SleepyHead software listed, easy to download and view your data.

[Cindy Lou Who]

If you don't have a physical reason to use a FFMask (sinus congestion, deviated septum, etc) take a look at the Opus 360. The nasal pillows only touch the underside of you nose. Running the hose up over the head keeps it from getting rolled over on and pulling off the headgear. The hose can be unstrapped and it will swivel freely so it's not in front of your eyes. This kind of headgear may help reduce/eliminate claustrophobia.
https://www.cpap.com/productpage/fisher ... -Mask.html
You can look at many masks, FFM, hybrids, and nasal pillow headgear at cpap.com. I use the Opus and, in an attempt to keep therapy air from escaping through my mouth, use a sports mouth guard and chin strap to keep my yap closed.

Hope you get a solution real soon. Wishing you the best!
Cindy

[Sloop]

JJJ

I am just going to toss out a couple of thoughts for you to consider. I have had 3 friends who all had FF masks and they struggled for a long time to get acclimated. If I were you -- my FIRST goal would be to do whatever necessary to move from a FF mask to a MUCH MORE COMFORTABLE nasal mask. While I've never tried one, I keep hearing people here mention chin straps to help keep the mouth closed. I also understand that some people can train themselves to keep their mouths closed. Once you've made the transition to a nasal mask, the world is your oyster as there are probably an order of magnitude more choices for you to get the "perfect" mask or nasal pillows for you.

Next is your insomnia. I keep mentioning SUBLINGUAL melatonin, but very few people seem to want to try it. The Sublingual kind will put you under in a NY minute. For me, the regular melatonin didn't work at all -- but the sublingual is simply incredible. You don't need to take it every night -- just reserve use for when you CANNOT get to sleep. Or -- if you get to sleep but then wake at 3 AM and need to get back to sleep quickly, this is the one that works -- and it is safe, unlike prescription sleep aids (AMBIEN, etc.).

"Although melatonin is commonly known for its sleep-inducing properties, many individuals are unaware of its other very important physiological functions including anti-aging, antioxidant and anti-cancer properties. Unlike other antioxidants like vitamin E (lipid only) and vitamin C (aqueous only), melatonin works in both lipid (fat) and aqueous (watery) parts of the cell neutralizing the damaging effects of free-radicals, highly disruptive chemicals that damage mitochondrial DNA, lipids and proteins through oxidative stress. Its melatonin's ability to work in both mediums, which makes it such a potent antioxidant."

http://www.everydayhealth.com/forums/al ... properties

[kaiasgram]

I use the Opus and, in an attempt to keep therapy air from escaping through my mouth, use a sports mouth guard and chin strap to keep my yap closed.
Cindy

Would you post a link to a photo of the sports mouth guard? (Or maybe you'd like to post a photo of you wearing yours ? )