New (UARS) -- lots of questions

[zan]

Gotcha.

Tried the Dreamstation + FFM again last night, and I may just stop using it at this point because it's not doing me any good. I solved the leakiness issue by sleeping more on my back, but since sleeping on my back is very uncomfortable for me, the net gain was zero. I'll have to wait until next Wednesday to try the AirFit N20s. In the meantime I suppose it'll be vanilla sleep for me.

Is it in my best interest to keep trying with the APAP + FFM? On the one hand, maybe I could learn some more about sleeping with a machine, but on the other this is clearly not the right setup for me. I don't have much to lose since I'll only have this machine available for a few more days before I give it back to my dad, but is there anything to gain if I already know what the major issues are? I'm pretty comfortable for the first few minutes in bed, but pretty soon I have to decide between fixing or ignoring the leaks caused by sleeping on my side, or choosing to sleep on my back. I'm leaning toward trying it again for at least another night.

[Pugsy]

Full face masks are just sometimes hard to deal with even if properly sized and fitted and difficult especially when going at it all alone without any support.
If it is the wrong size or just won't fit your face....don't make yourself miserable trying to make it work.

[palerider]

Do new machines usually come with spare filters or do I need to buy those separately?

Resmed recommends changing their filters "every six months, or as needed'. just change 'em when they look like they're dirty.

[zan]

Added UARS to the thread title, hopefully it'll grab the attention of others who are working with the disorder.

I'm miserable from how poorly I slept last night but it'll still be another week before I can get rolling with my machine. Postage is giving me some grief because my university's mail service is actually completely unstaffed during the holiday break, rather than simply not distributing packages. Totally my mistake for thinking otherwise, so now I have to redirect my supplies and bite my nails into stubs in the meantime.

I've been reading through the pinned "success stories" thread for reassurance that things can get better with CPAP. I'm beyond exhausted but I can't sleep during the day, so as soon as I wake up I'm left to obsess over how tired I am. I visited my cousins for Thanksgiving last night and I missed out on most of the conversation because I was too foggy and in low spirits. D: I don't know how many times I can say "I'm having a hard time because I'm tired" until it starts sounding like an excuse for not participating. I really, really can't wait to find a treatment that works for me. Organizing my writing and even spelling (which used to be one of my strongest suits) is getting hard.

Also, I can't tell if my fatigue is worsening or if I'm just noticing it more because finals are approaching and I've got a lot to do in little time. Does anyone find their daytime symptoms worsen during fall / wintertime? Any idea why?

[slowriter]

Added UARS to the thread title, hopefully it'll grab the attention of others who are working with the disorder.

You need to post some data for us to have any clue. I'd start with just a single, representative, recent night on the VAuto, posted per forum instructions (like in this post of mine).

[zan]

Added UARS to the thread title, hopefully it'll grab the attention of others who are working with the disorder.

You need to post some data for us to have any clue. I'd start with just a single, representative, recent night on the VAuto, posted per forum instructions.

VAuto hasn't arrived yet, everything should be coming in the mail by Wednesday. As soon as I have data I'll post it. Sorry, I've been complaining about my problems with no means of helping them, I'll try to tone it down.

[slowriter]

Added UARS to the thread title, hopefully it'll grab the attention of others who are working with the disorder.

You need to post some data for us to have any clue. I'd start with just a single, representative, recent night on the VAuto, posted per forum instructions.

VAuto hasn't arrived yet, everything should be coming in the mail by Wednesday. As soon as I have data I'll post it. Sorry, I've been complaining about my problems with no means of helping them, I'll try to tone it down.

OK.

I mean, the mask issues are important, independent of the machine, so good if you can make progress on that before the vauto arrives.

But yeah, dealing with fine-tuning for UARS requires that data, and even that only goes so far.

[slowriter]

Do you have any data from a CPAP machine that you can post, to suggest starting settings for the VAuto?

[Miss Emerita]

Zan, it's fine to vent; you're among friends. I thought you might be interested in this information about seasonal affective disorder (from a trusted web site):

https://www.mayoclinic.org/diseases-con ... c-20364651

[zan]

Do you have any data from a CPAP machine that you can post, to suggest starting settings for the VAuto?

I used my dad's PR APAP for three days, wasn't able to pull the data because I didn't have an SD card reader (will be getting one soon), but what I was able to find from my own experience was mostly that full face masks are not for me, and a minimum pressure of 12.5 with FLEX setting 2 seemed to do the trick. (Not actually sure what the Flex setting does, but it seemed important.)

I thought you might be interested in this information about seasonal affective disorder (from a trusted web site):

https://www.mayoclinic.org/diseases-con ... c-20364651

My sister has SAD, I should've thought of that! I tried light therapy back when I thought what I had was primary depression (and not a sleep disorder), but it didn't do anything. When my older sister gets home I'll ask what she does during the winter.

[slowriter]

Do you have any data from a CPAP machine that you can post, to suggest starting settings for the VAuto?

I used my dad's PR APAP for three days, wasn't able to pull the data because I didn't have an SD card reader (will be getting one soon), but what I was able to find from my own experience was mostly that full face masks are not for me, and a minimum pressure of 12.5 with FLEX setting 2 seemed to do the trick. (Not actually sure what the Flex setting does, but it seemed important.)

In that case, while I'm thinking about, I'd maybe start with the following:

• don't touch the max IPAP; leave it at the standard 20 or 25
• set min EPAP at maybe 8?
• set PS at 4

The latter two settings are the two variables you'll be tweaking.

When you get the machine, maybe do a couple nights at those settings and post what you find, including the data.

BTW, you might read the post I added to my post above. Will give you some things to think about.

[zan]

I can finally use my machine for the first time tonight!! The machine arrived last Friday but it wasn't until today that I received the last part I needed (short hose for the N20 mask). I'm really excited, and right now I'm working on playing with the pressures and comfort settings / practicing with OSCAR. It's been a hard few months and I'm so hoping this can be what I need.

Big thanks to Pugsy for sending spare P10 cushions and filters!

I'll be spending most of this afternoon tuning my settings and acclimating with the mask.

EDIT: Right now I'm hovering around 25cm Max IPAP, 8-9 Min EPAP, PS 7

[slowriter]

I can finally use my machine for the first time tonight!! The machine arrived last Friday but it wasn't until today that I received the last part I needed (short hose for the N20 mask). I'm really excited, and right now I'm working on playing with the pressures and comfort settings / practicing with OSCAR. It's been a hard few months and I'm so hoping this can be what I need.

Big thanks to Pugsy for sending spare P10 cushions and filters!

I'll be spending most of this afternoon tuning my settings and acclimating with the mask.

EDIT: Right now I'm hovering around 25cm Max IPAP, 8-9 Min EPAP, PS 7

PS 7 is awfully high. You're likely to end up with a lot of central apneas if you start there.

[Pugsy]

I wouldn't be starting with PS of 7 either.
In fact I wouldn't start with more than PS of 5 until I got a handle on things.

[zan]

Will do; I like PS 7 right now since I'm sitting upright and awake but you're both probably right that it would work much differently when I'm asleep. I'll try 4-5 cm tonight.