Is this ever going to get easier?

jayvee · Post by **jayvee** » Thu Aug 11, 2005 5:42 pm

Hi Amy,

I unfortunately do not know much about the subject as I am a newbie, but one thing I do know is you have at least one greta thing going for you and that is this fantastic forum.

I have read some of the replies to your post and there is some great and learned advice there. Don't ever lose hope? Sure some days I feel worse than others but overall I feel like I'm moving forward all the time.
Recently I was feeling really bad and I got some great advice from some of the posters on this forum about Tweaking my autopap. When I told my doctor here what I was doing he nearly fell off his chair...I can't see him till next Monday and I was desperate to do something to make me feel better.
I was in the chat room yesterday and Rested Gal sent me some instructions for my Resmed. I raised my lower pressure from 6 - 9.6 and this morning my AHI was 10.1 compared to over 23 the previous days. This came about because of the wonderful advice from this forum.
So my message is DON,T GIVE UP.....concede that you will have good and bad days but believe in this treatment b/c IT DOES WORK. I get alot of inspiration reading the forum every day. i'M LOCATED IN mELBOURNE, aUSTRALIA AND WE DON'T HAVE ANYTHING LIKE THIS HERE. But the good news is we don't have to put up with those DME'S you have there. As the Aussies say "keep your head down and your bum up "and keep on working with this treatmet.

yawn · Post by **yawn** » Thu Aug 11, 2005 6:39 pm

Wow...Australia!!! Isn't the internet an incredible tool!!! You are so right about this forum. I truly don't know what I would do if I hadn't found this site. I never would have imagined so many people suffer from OSA and of course, all the other lovely problems that come along with it.

Sleepless...the problem is that I do sleep all night...I just don't feel rested and that frustrates me. I'm anxious to see this pulmonologist and see if he'll let me get an autopap. I don't see how one titration study can determine what we need for the rest of our lives. I personally think everybody should start with an auto-pap and then switch to cpap if they can narrow down their pressure needs. I also think our insurance companies should cover card readers and their software. It's ridiculous that we have to wait for days/weeks/months to get feedback from DMEs or whomever has the readers. My DME doesn't even know how to dump the data.

Lastly, I think everybody that's diagnosed with OSA should be made aware of this forum...it's the only place to get the "real" answers to our questions.

So, I'll come down off my pedastal now and humbly thank all of you for your support. I couldn't do this without you!!!!
Amy

Sleepless on LI · Post by **Sleepless on LI** » Thu Aug 11, 2005 7:16 pm

So, Dr. D., yes, I did turn off the Cflex. I had the best night of my therapy, but it didn't help the leaks. Same result from the night before where I started taping my mouth. Derek wrote back to a PM I sent him and said between 30-40 for my mask doesn't sound like a bad rate for leaks. Hey, as long as I feel well and my AHI is so low, why should I worry? I had only one episode last night of apnea that last 12 seconds, no hypops and zero snoring.

Now, Restedgal is wondering, now that I'm on CPAP, if maybe the machine may not pick up as much as the machine does in APAP mode. So tonight's experiment is to see what happens when I set the machine back to APAP, but keep my two numbers the same as my straight CPAP, 10/10. I have to try it for more than one night, though, as every night brings different readings. But I will leave the CFlex turned off, thank you very much, Dr. D., because I really think it may have had something to do with the 0.1 AHI this morning.

What are you on, auto or C, and do you leave your CFlex off, too, now? Did you ever try the experiment to see what happens with auto with two of the same numbers for high/low and compare it to CPAP? Should be interesting.

Thanks for your interest and the advice. Will I get your bill, doctor???

Barb (Seattle) · Post by **Barb (Seattle)** » Thu Aug 11, 2005 11:46 pm

What an awesome thread to read tonight!!!!!

It is just what I needed...THANK YOU!

My day was absolutely the same as yours Amy...I fell on some stairs. Anything I COULD have dropped...I did. I forgot stuff I was supposed to do...thank God this day is over. Had to rush home to take my son to the doctor after working very hard all day. Having a husband be mad because I didn't cook dinner...it just went on and on

Here's to a better day tomorrow! {{{hugs}}}}

Sleepless on LI · Post by **Sleepless on LI** » Fri Aug 12, 2005 5:32 am

Amy,
An auto is a great idea because you can then have software to see exactly what is happening during the night and you can make your own adjustments without having to go for another PSG (don't want them unnecessarily). Since I have been "playing" with my settings, the past two nights AHIs are 0.1 and 0.27. If I didn't have the software, I wouldn't have know if it was a 0.1 or a 10.0. You know we will help give you advice once you have those numbers as to what to do with your settings. Can you get another machine?

BTW, great that you sleep through the night. I still rarely do. I just don't complain about it because I am feeling so well. I think that is more important than straight sleep, if I'm feeling well and my numbers show the therapy is working.

Let us know how you're doing today, please ?

Barb,
Hang in there. Today is going to be a better day. And it's not, tomorrow will be then. Keep reading AND posting. Sometimes it just makes you feel so much better, as you said, to know you're not alone.

DSM, a/k/a Dr. D,
I did the auto test last night but unfortunately either made a mistake and put 10/11 or my machine won't allow the same numbers because I came up with data under 11, too, this morning. I got more or less the same results as straight CPAP the night before. Two nights ago on CPAP, my AHI was 0.1. This morning, it was 0.27. Not bad either way. Both nights, zero hypops and zero snoring index. The weird thing was, my apnea happened under the 11 cms. setting, nothing at 10. Figure that out...

yawn · Post by **yawn** » Fri Aug 12, 2005 5:36 am

Hey Lori!
Do APAPs come with software? Would I still need a card reader??
Thank..Amy

Sleepless on LI · Post by **Sleepless on LI** » Fri Aug 12, 2005 6:07 am

Amy,
Mine did and so does the PB 420e. I have the Remstar Auto with CFlex. There are some differences between the two. I know you have the option on mine to choose to have the CFlex on or not, and I don't even think the PB has CFlex. And mine also has the option of APAP or CPAP. Not sure about the other machine.
Let me check for this link from a previous thread I posted before I got my machine bought for me from insurance last month. RG, our resident patron saint, gave me great advice about the machines and their differences. Both of these have software. I think the PB 420e has a cable you download the info into your computer with and is supposed to be more easy to understand and geared toward a patient reading it as opposed to Remstar Auto, although you get used to that one pretty easily, too, once you start using it. If you do go with the Remstar, I will guide you as to how I got the card reader and software for $123 instead of $199 that this site offers the package for. The one advantage about my machine is that you can download Derek's software to work with the other software, which is great.
Going to go find the link and paste it.
Amy, I just spent 15 mins. searching for it and can't find it. Maybe RG can step in and explain the differences between the two. I could tell you about Remstar, but don't know much about PB 420e. She has the knowledge to explain them both and their pros and cons.
Hope today is going well for you. Sorry I couldn't find the link to the thread.

WAFlowers · Post by **WAFlowers** » Fri Aug 12, 2005 6:10 am

Amy, even with an APAP you have to additionally buy the software. With the REMstar you'd need a card reader also. With my 420E there is no card; instead I have to bring the machine and computer together (which means carrying that small 1.5lb brick to the computer room). It sounds worse than it is; the 420 series is so small and light and the connection to the humidifier is so simple it really isn't a problem.

(I guess I'm pretending to be Lori this morning. That's the 2nd time that I've had a sex change on this forum! )

Sleepless on LI · Post by **Sleepless on LI** » Fri Aug 12, 2005 6:11 am

WAFlowers writes:

(I guess I'm pretending to be Lori this morning. That's the 2nd time that I've had a sex change on this forum! )

Okay, Lucy, you've got some splaining to do...

WAFlowers · Post by **WAFlowers** » Fri Aug 12, 2005 7:14 am

I think it was RG who mistook me for a woman (though definitely not a lady!) back when I first started posting.

Sleepless on LI · Post by **Sleepless on LI** » Fri Aug 12, 2005 9:46 am

I meant, splain what you meant by pretending to me Lori this morning, you sill goose, you...

rested gal · Post by **rested gal** » Fri Aug 12, 2005 10:53 am

I'll pretend to be Lori, too, since Yawn's question was directed to ya, with a "Hey, Lori!" LOL!!

As the nice lady named Bill said, no machine comes "with" software ... if you want software that "works with" a machine, you have to buy the software separately, or buy a machine package deal that includes software.

Oops! Bill's nice, but he ain't no lady!!

PB 420E auto uses Silverlining software and a download cable. Carry machine to the computer (be sure to plug in the power cord when you get there with it) or carry computer to the machine. No "card" or "card reader" involved.

Respironics REMstar Auto uses Encore Pro software and a card reader to get data off the Smart Card. Carry Smart Card to the card reader attached to computer.

Derek's free "MyEncore" program can be used along with the regular Encore Pro software. You do have to have Encore Pro if you want to see data from the Smart Card, even if you add Derek's free program.

I wouldn't say data shown by the Silverlining software (used with 420E) is easier to understand, or that it's simpler to figure out how to understand the data. Actually, I'd say Encore Pro (used with the REMstar Auto) data presentation is much easier to read and figure out when getting accustomed to either software presentation.

What I personally like better about the Silverlining software is the extremely detailed "96 hour graph" in the "Detailed" section. Encore Pro is simpler, imho, but I much prefer Silverlining's very detailed graph as well as the many different ways Silverlining presents the data.

I don't have the supplemental "MyEncore" program Derek (what a genius!) created, but from what I read about it on the message board, that adds much more detail to what you normally get from the regular Encore Pro program.

Sleepless on LI · Post by **Sleepless on LI** » Fri Aug 12, 2005 1:22 pm

Rested gal writes:

As the nice lady named Bill said

I like that...made me laugh. Thanks, RG.

Do you know, just as an aside, I never knew your online name was two words? My apologies for always saying Restedgal, instead of Rested Gal. And in my profession, I should read better than that (50% of my job is proofreading my work...uh-oh).

In the meantime, I did find that fantastic thread, RG, that you wrote to me when I was buying a machine and sent the link to Amy. It should be made part of the encyclopedia of software-capable machine buying. You helped me incredibly with it when I was lost, as with many other things relating to CPAP, too. That's why I call you one of the patron saints of this web site, or one of the sages. Always great and correct advice and information.

Amy, let me know if you got the email. Hope it helped. RG basically just repeated everything I sent to you, but now you are doubly informed.

yawn · Post by **yawn** » Fri Aug 12, 2005 8:02 pm

Boy...I missed some great posts in the past 2 days. Bill...or should I say Barb??? What's with the sex change...what's going on here??
Lori...I got your e-mail tonight with the post ....thank you!!
I've had a really really long day so I'm just poking my head in here for a short while. I hope to catch up on all the great posts tomorrow.
Amy (starting to yawn alot right now )

WAFlowers · Post by **WAFlowers** » Fri Aug 12, 2005 8:26 pm

yawn wrote:Boy...I missed some great posts in the past 2 days. Bill...or should I say Barb??? What's with the sex change...what's going on here??

You should see me in a mini skirt, fishnet stockings, high heels, falsey and wig. I've got a picture around here somewhere. Pretty good looking legs; I look like some of my female cousins.

Or maybe it is better if I don't post that picture !