New User - Some Questions

First, I hope that this is the correct place to post this. If not, please forgive.

My name is Mary, 54 years old, half DEAD from sleep deprivation for at least the last decade. FINALLY after being diagnosed with Graves disease and having undergone the radiation treatment (now on Synthroid, two years this November) and a year of STILL feeling exhausted, painful joints, falling asleep in the middle of conversations, etc., went and had a sleep study. Found a lot of apopneas/apneas, 19.something per hour, 8% REM, blood oxygen 83%, heart rate at 120 bpm while 'sleeping', etc. have been on a ResMed S9VPAP Auto machine since 8/27/13. I use the SleepWeaver soft cloth CPAP mask.

What a difference. It's a miracle. I am certainly not ready for the Olympics, but I no longer need to spend half my weekends "napping", no longer fall asleep the minute I try to read, or watch television at night, and no longer feel like I'm a reanimated corpse. I still am 'kinda' tired, but wouldn't trade ANY thing to go back to pre-machine. I don't have any trouble with the mask, the hose, the machine (thankfully, and thanks to having read this board EXTENSIVELY for the two weeks after diagnosis for all your wonderful hints, tips, tricks, and 'what to expect' posts). I did feel air blowing in my eyes from the mask, and was concerned that the leaks may be greater than whatever normal is. I went and got an 8 dollar sleep night time mask, large enough just to hold down the edges of the CPAP mask around the bridge of my nose, to make a better seal. Seems to be working. I still wake up sometimes around 3 am, but am usually able to go back to sleep. I have had 4 days out of my vast 12 day history (LOL) where I've woken a couple times during the night, but the improvement is amazing compared to pre-machine.

While I've tried to read and research as much as possible, found the info on the sleepyhead software and installed it, and peruse my data every morning, there ARE still a few questions I have if someone could shed some clarification, please.

My "most recent" details on the software:

AHI 1.79 (which I think is really good, right?)
Hours per night: 6.42 (great as well I'm thinking, compared to my waking up daily at 3 am with no rested feeling at ALL)
Min EPAP 5
95% EPAP 8.98
Max IPAP 15.58
95% IPAP 13.98
Average leaks: 1.02 (good, yes?)
95% leaks: 6.0

The only significant (I don't really know if it's significant, that's why I'm posting it) differences with the above DAILY reading from last night and the 'average' from the total days used, is that the 95% leaks is averaged at 9.6. The average leaks has been 2.4 (so I do think the nighttime eye mask is helping).

Does that all seem okay/on the right track to you folks?

Also, silly but I can't find or don't understand the definitions for these terms:

EPAP
IPAP
Tidal Volume

Oh, and I *think* these are the settings of the machine:

Mode: Bi-level
Easy Breathe x1
EPAP: 4.0
IPAP: 10.00
PS: 6.00


The sleep tech from the "DME" told me to keep the little humidity level set to 3 if possible. I do, I'm as compliant as a wet noodle, feeling that I'll do anything to feel better but I have noticed a little nasal congestion and dryness (went out and bought the AYR stuff you all suggested somewhere two nights ago).

So, in summation, I guess I just wanted to find out if all this seems to be going as good as I think it is, and to find out if someone can shed light on the above "foggy" areas.

I am very glad to have found this board so quickly, and for all the wonderful information and help. The person who CREATED the Sleepyhead software -- THANK YOU! And thanks to the rest as well. I'll follow this thread to see if further answers, suggestions, comments and clarifications can be had.

Thanks in advance.

Mary

Hi - Sounds like you've really well starting out! All your numbers are great. The only thing I'd comment on is that your well meaning (I'm sure) doctor telling you to keep humidity at 3 (or anything else) makes me wonder. Humidity is a comfort thing, to facilitate therapy, and everyone's very different in how much they need and when, depending on where they live and many other physical factors. Some of us never use it at all because we don't feel the need of it and/or because it can cause congestion (as you've discovered). Others use it only at the lowest level for their machines and some need it set very high, but I would adjust it to suit you, not as per your MD, as it's not a scripted medication but made to help you be compliant with Cpap rather than struggle.

Julie wrote:Hi - Sounds like you've really well starting out! All your numbers are great. The only thing I'd comment on is that your well meaning (I'm sure) doctor telling you to keep humidity at 3 (or anything else) makes me wonder. Humidity is a comfort thing, to facilitate therapy, and everyone's very different in how much they need and when, depending on where they live and many other physical factors. Some of us never use it at all because we don't feel the need of it and/or because it can cause congestion (as you've discovered). Others use it only at the lowest level for their machines and some need it set very high, but I would adjust it to suit you, not as per your MD, as it's not a scripted medication but made to help you be compliant with Cpap rather than struggle.

Thanks Julie! So, it's not going to blow up the machine, eh? If I adjust the humidity setting? The sleep tech said the 'higher' it's set in humidity, the more chance for bacteria there is. So, is it that higher humidity CAUSES nasal congestion -- or is this one of those "adjust it and figure out" kinda' things??

Thanks in advance again,

Mary

Welcome to the forum.

3AM-Mary wrote:AHI 1.79 (which I think is really good, right?)

Yes, very good. The goal is less than 5.0 and obviously you have that well covered.

3AM-Mary wrote:Average leaks: 1.02 (good, yes?)
95% leaks: 6.0

Again very good. Large leak territory for the S9 machine is 24 L/min...so obviously as far below that as possible. Again, you have that well covered.

3AM-Mary wrote:Also, silly but I can't find or don't understand the definitions for these terms:

EPAP
IPAP
Tidal Volume

Check this glossary for definitions
http://sourceforge.net/apps/mediawiki/s ... r_Glossary

For additional help in understanding your data..take a look at the little tutorial I did.
viewtopic/t88983/Pugsys-PointersSleepyH ... nding.html

3AM-Mary wrote:The sleep tech from the "DME" told me to keep the little humidity level set to 3 if possible. I do, I'm as compliant as a wet noodle, feeling that I'll do anything to feel better but I have noticed a little nasal congestion and dryness (went out and bought the AYR stuff you all suggested somewhere two nights ago).

Sounds like you have the non heated hose for your machine. A setting of 3 is sort of in the middle in terms of humidity.
If your nose is feeling a bit wet then you may have a bit of condensation in the mask...maybe even the hose. Depends on how much condensation if it is a problem. We call it rain out.
There is a heated hose available for the S9 machine. It's called the ClimateLine and when you use it you have heated air available in the hose that lessens that moisture you get in the mask.
I highly recommend it...especially for this winter. Condensation occurs because the bedroom air cools down the warm humidified air in the hose or mask. Likely to be even more pronounced this winter when bedroom temps are typically even cooler.
It will help keep a more consistent humidity delivery and helps keep the air in the hose and mask a little warmer so that there is less chance for the air to cool and release the moisture.
Call up your DME and ask them to provide the Climateline heated hose....you won't be sorry...it's covered by most insurance.

Humidity needs are a personal preference...if your nose is feeling dry and congested you may need a little more humidity and that just increases the chance for more rain out.
Some people get congested with too much humidity...some need a lot more..and there is no right or wrong...there's just what works for the individual. Since you say you are feeling "dry" I am thinking your nose probably wants a little more added moisture.
That setting of 3 isn't very high in terms of settings. It's right in the middle...I think your machine goes up to 6 when not using a heated hose.

Here's some information on the ClimateLine hose.
https://www.cpap.com/productpage/resmed ... ntrol.html

Do you have the provider/clinical manual for your machine..not the user manual...I can get you a copy of the provider manual but I need your private email address because I have to send it to you as an attachment and we can't do attachments with the forum email system. Just send me a private message with your private email and I will send it to you if you want it. It explains the features on your machine in greater detail than the user manual does.

[quote="Pugsy"]Welcome to the forum.

<snip>

Check this glossary for definitions
http://sourceforge.net/apps/mediawiki/s ... r_Glossary

</snip>

Thanks so much, Pugsy! In all my searching, I must've missed this one. Sent you PM with email...and I look so forward to learning as much as I can. I'm feeling better enough that I'm off to do YARD WORK! In Dallas, at about 100 degrees later! I think "Wow, I may even feel TERRIFIC when I know something more about all this!!!"

So last question, is the "higher the better" then, true for Tidal volume? Or is there a number I could shoot for??

I hope everyone has a good day, and thanks again for all the support/help.

3AM-Mary wrote:So last question, is the "higher the better" then, true for Tidal volume? Or is there a number I could shoot for??

Not really...the tidal volume will spike for unknown reasons and that's normal but you wouldn't want high spikes all the time.
To be honest I don't bother worrying about the tidal volume graphs. There is such a wide range of normal and unless a person has some serious lung issues all a person sees is normal fluctuations and if a person had serious lung issues they would already know about it.
http://en.wikipedia.org/wiki/Tidal_volume

3AM-Mary wrote:Oh, and I *think* these are the settings of the machine:
Mode: Bi-level
Easy Breathe x1
EPAP: 4.0
IPAP: 10.00
PS: 6.00

Mary, this may or may not be super important since you're doing so well, but just an FYI: It looks like SleepyHead is not showing your pressure settings (EPAP=4, IPAP=10) correctly. Several of us who have S9 VPAP Auto machines have this little bug in SleepyHead. The actual pressure details you report are normally correct in SleepyHead and you can see that your 95% and Max IPAP settings are higher than 10.

Min EPAP 5
95% EPAP 8.98
Max IPAP 15.58
95% IPAP 13.98

If you go into the clinical menu on the machine you'll be able to see the true pressure settings.

Thanks all!

I will check the true settings!

Also, I bumped up the humidity from 3 to 3.5 and that seems to have been the ticket! Slept seven hours, no waking up with dry nose!

Yay!

Hope you all have a wonderful day!

Mary