Diagnosed in August....no improvement....really?

[SnoozyQ]

Ok, so I found a little trick and accessed the data on the machine--I can't get anything from the card, since I don't have the software.

Days used 45/45
Days>4 hrs 32/45
Average Usage 6.4 hrs
Leaks 1.2L/min
AHI 1
Total AI .7
Central AI 0


I don't see any major red flags to indicate a machine issue....??

@Tielman,
No issues with GERD, etc. I do take Celexa (depression), Ativan (for sleeping! and anxiety) and Provigil (for daytime sleepiness, so they say). All have a side effect of sleepiness, etc, but they serve their purposes....
We've been round and round the tree of sleep meds to help the insomnia--Ambien, and other 'heavy hitters'. Ativan lets me go to sleep without the hangover.



@allend,

Husband says I do not snore anymore. If I fall asleep without the mask accidentally, then I do. I had no idea I ever snored!

During titration, they tried the nasal mask first, and that was intolerable. Then the nasal pillows, which I apparently fell asleep with, but it damn sure wasn't due to comfort! When my RT came to my home, she told me to use the full face mask instead. And honestly it fits the best and I have less issue with it.

I sleep well...maybe too well, bc it's hard for me to wake up. It's as if I never get fully awake at any point of the day. I'm a side sleeper, right and left. I don't wake during the night like I used to--if I do, it's bc I've pushed the pillow into my mask, causing a leak or I'm turning over and the tube is in the way. The humidifier doesn't bother me, and I honestly rarely use it--I feel more suffocated with warm air than cool.


Thanks to all!

[robysue]

Ok, so I found a little trick and accessed the data on the machine--I can't get anything from the card, since I don't have the software.

Days used 45/45
Days>4 hrs 32/45
Average Usage 6.4 hrs
Leaks 1.2L/min
AHI 1
Total AI .7
Central AI 0


I don't see any major red flags to indicate a machine issue....??

Ok---You've stumbled on the S9's Detailed Sleep Quality menu, but for some reason it's currently set to show you summary data for the last three months(?).

The numbers you posted are the average numbers for the last 45 days, of which you used the S9 for more than 4 hours on 32 of those days. Yes, the summary data looks pretty good.

But, you may have something going on that might be a recent development and the summary data is not accurately reflecting what's going on at night NOW.

Since you don't yet have the software, I suggest that you at least get back into the Detailed Sleep Quality menu and change the Period from whatever it's currently set on back to 1 day. That way you can check the overnight data every morning when you get up. Maybe you can write it down in a notebook and start looking for trends that are different than those 45 average numbers.

If you don't remember how you stumbled on the detailed data that you posted, just let us know and someone will give you instructions on how to get back to that data.

Also, if you've got a computer to put it on, the ResScan software is worth downloading and learning how to use (it's not that hard). You can find links to the download and the clinician's manual under Uncle_Bob's signature in his posts.

[Muse-Inc]

Robysue, the Escape does not record useful overnight data...just compliance (hrs used) & a few averages. The Escape is the bottom of the barrel in cost to the DME so they lease/sell it to the unknowing: works great but useless if you want to know what is happening when you sleep, no way to watch for trends, or analyze detailed data to optimize therapy.

SnoozyQ, you need to swap that Escape for an Elite or an AutoSet, one is a single pressure machine and the other is an auto-titrating machine that changes its pressure based on your last 5 breaths (it's set to a range of pressures). Both of these 2 machines are full-data machines. With the overnight data, we might be able to make some suggestions or send ya back to your doc for a change to another type of machine.

[SnoozyQ]

Found Uncle_Bob and started download--thanks!!

Also, set the sleep quality back to 1 day.


Thanks--this makes me feel like I'm doing something productive with this issue!

[kteague]

While you're sorting thru things, what does your hubby say about how much you move around at night? Your titration study showed your limb movements and arousals increased from the diagnostic study to the titration study. Just wondering how those are doing now. If they are continuing to cause arousals that could cause daytime sleepiness.

[SnoozyQ]

He says he may notice me moving 3-4 times per night--and that's usually bc I wake him him with the vent on my mask blowing in his face.
So, that's just what he notices....who knows otherwise.
I do have restless leg syndrome that took a really long break, but resurfaced about 2 weeks ago...

[elena88]

snoozy q, it may take weeks or months of examining and experimenting with your machine data and pressure to figure this out..

BUT you can do this! you can figure it out, I seriously doubt anyone else will.

so get ready to put your sherlock holmes hat on, and get to it.. you cant go on like this, you just cant..

[SnoozyQ]

WOW--what do I do with all the info on the SD card? There's so much to process....

[elena88]

I would put up a thread, "s nine elite newbie needs buddy to show me the ropes!"


and then one question at a time, just like baby steps..


also the search field is your best friend, anything you cant find there, come back here and ask...

[robysue]

Robysue, the Escape does not record useful overnight data...just compliance (hrs used) & a few averages. The Escape is the bottom of the barrel in cost to the DME so they lease/sell it to the unknowing: works great but useless if you want to know what is happening when you sleep, no way to watch for trends, or analyze detailed data to optimize therapy.

SnoozyQ's signature says she's got the S9 Elite, not the Escape. Moreover, SnoozyQ clearly posted efficacy data that she said she got off the S9's LCD screen. Hence I'm pretty sure that her machine is indeed an Elite, not an Escape.

[robysue]

I would put up a thread, "s nine elite newbie needs buddy to show me the ropes!"


and then one question at a time, just like baby steps..


also the search field is your best friend, anything you cant find there, come back here and ask...

A sticky thread sounds like a good idea. I've written the same thing for several posters asking about how to interpret the numbers that their S9 shows them each morning. Sure would be nice if all the different important pieces of info could be put on a sticky thread with a title like elena88 proposes.

[Rebecca R]

My internal med. doc and I have wrangled with this problem for years, and the past 6-8 months have been the worst as far as fatigue goes. I miss 2 days of work per week, bc I just *have* to sleep 12-14 hours....but I don't feel rested.
Daytime is awful....I have to convince myself to NOT go sleep in the bathroom floor at work. I nearly rear-ended a dump truck last week, bc I was just so out of it on the 45 minute drive home.....
I'm on Provigil, which I find useless.

You have my empathy. Being that tired is terrible.
DON'T DRIVE UNTIL YOU FEEL IMPROVEMENT!!!! REALLY!!!! You could kill yourself and/or someone else. Tell the doctor just how dangerous your sleepiness is and that you need help ASAP. It isn't normal or acceptable to settle for having to talk yourself out of sleeping on restroom floors.

Your recent RLS return may also mean you're having an exacerbation of Periodic Leg Movements since your sleep study. That would certainly contribute to your lack of improvement, but not likely the entire problem.

There are a lot of people who can and will help you here, and you will get to the bottom of this. But meanwhile, please don't risk your life and the lives of others by driving when you are so sleepy. Really.

r