Still Feel like crap!!!

I don't guess it will do any good to still complain that I feel like crap after almost 8 weeks on CPAP. I have tried using a nasal and FF mask and still wake up feeling drained. I've tried lowering and raising my humidifier levels and worn the mask all night and also taken it off during the night. I JUST cannot seem to see any improvement. I have an appt. with the sleep doc PA in early Jan. but I am at the point now where I think I'll try sleeping without the darn CPAP for a few days to see if I feel any better. I DON'T want to feel so horrible at Christmas!! WHAT GIVES?????? I am using the RESMED machine with the Elite humidifier and have tried the Resmed Quattro, Liberty and the FlexiFit 406 nasal mask and taping my mouth shut which gave me a bit of a paniky feeling. My machine ramps from 6 to 12 in 45 min. and after my first month my DME downloaded my info. from the machine and I am still having apneas (I believe she said 13.7 per hr.) or something to that effect. What machine should I ask for that will give me my overnight results daily that I can download myself and keep up with what is happening. I am SOOO discouraged and tired of living this way. I have this feeling that my pressure is not high enough since I sleep on my back primarily and am still having a large number of events. I cannot sleep on my side all night due to bursitis so when my doc told me she wanted me to sleep on my side I don't think she understood me when I tried to explain that I couldn't do it all night long. Why would she not raise my pressure a little? By the way please explain to this newbie what AHI and all those other "intials" jargon means. I often cannot follow what you guys are referring to in your posts. What should my next steps be in the whole process? In my upcoming appt. what kind of things should I ask my doc. besides the obvious-I'm STILL feeling like crap!! My body feels like I am just dragging it around all day. Any suggestions would be greatly appreciated. THANKS

grumpygirl, it looks like you are already doing a lot, and have a good attitude about seeking success, even though you don't yet feel results. I expect you will get good, specific information in reply to your post, such as which machines have software.

For starters, for basic information and abbreviations, click on the light bulb/our collective wisdom and start reading. cpaptalk-articles.php?articlegroup=ALL

You might be heartened by the section on Help for New and Struggling Users.

The article on machines has links to cpap.com where you can see machine comparisons and which machines have software.

Awww grumpygirl, I'm sorry to hear you still feel so bad.

By the way please explain to this newbie what AHI and all those other "intials" jargon means.

If you look at your own post, you'll see many of the terms and acronyms in blue on the bottom of the post. Click on the blue term, and you'll be linked to a definition.

The AHI is the averange no. of significant breathing disturbance per hour - as recorded by your machine. At 13 + your AHI is much too high - now wonder you're not feeling well. The aim is to get the AHI lower than 5 - it's one of the cutting points for starting cpap therapy. Your therapy, at this point, is certainly not effective enough.

Do you need the ramp? Could it be that your machine is too slow to get to therapeutic therapy level? Kteague recentl described how using the ramp reptedly kept her at suboptimal pressure for extended periods.

Of course it does good to complain - it let us know you need information, and support. Hang in there GG. When the machine, mask and treatment will be right, you'll feel much better.

O.

Grumpygirl,

So sorry to hear you're having such a hard time. If I'm understanding your post correctly, you already have a data capable machine or else at your one month appointment they couldn't have told you how many events you were still having. You should be able to every morning (before noon) look at the screen on your computer and see how many apneas and hypopneas per hour.

It sounds like you have an auto adjusting machine but have it set to function as a cpap at a fixed pressure. If that's correct, you can change the settings to auto mode and use a range of pressures so it can find the pressure you really need. At that point you could continue to use the suto mode or set it back to cpap at the newly found pressure.

On your sleep study, did you have (m)any central apneas or did your doc give you any reasons you should not use a higher pressure?

I'm writing this in a rush, but maybe someone will have time to find the instructions for you to change your settings or even see your numbers in the mornings. I'll check back in later.

Kathy

Okay folks- I have a ResMEd S8 Elite System. Can I set that as an autopap and find out what pressure I should truly be using?? That would possibly solve some of my problems. I do think my pressure is not correct. HOW, HOW, HOW do I accomplish this? It would be so beneficial to actually see my daily data and/or have the machine to adjust the pressure and find what really works. THANKS

I think that the RESMED S8 Auto Advantage is the one that can be set to APAP. I have a call into my DME to find out the difference and how to get one, I think this may help me greatly and eventually get down to the meat of the problem. If she cannot provide me with this machine, what other APAP would you guys think would be the best???

GG, the Elite is suppose to show you your data on the LCD - look for posts by slinky containing the words Elite and pencil.

You don't need an apap to raise your pressure - you can self titrate on the Elite as well.

O.

Please tell me how to self titrate on the Resmed Elite machine. I don't know how to do anything with this machine for fear of messing up my settings completely!! Thanks for all the help.

Grumpygirl: This link helped me change my settings, so hopefully this will help: http://www.apneaboard.com/CPAP%20Adjustment.htm

Push and hold the left and right button for a few seconds and it will show your "Efficiancy Resuts" which includes your Pressure, AHI, AI, HI and Leak rate. Push and hold the Right and Down buttons to get into the clinician Menu to change your settings. You should write down your settings first before changing them, so if you don't improve or get worse you can change back.

You could be mouth braething, or leaking out your mask, both of which would reduce or eliminate the effectiveness of your therapy. these menus wil help you track leaks, and you could try taping your mouth shut to see if that is a problem for you, as many here have reported. Good luck and keep us posted on how you do!