First Dr. appt after study and titration tomorrow

FINALLY! any questions i should ask?
I'm still craving a really good nights sleep! haven't been able to accomplish it yet even after a month of therapy. I think overall i'm doing better and seem to have alittle more energy and am able to accomplish a little more, however not to the point i think I should be. I tried an experiment the last couple of days of tweaking my pressure up to see what would happen--only to 9.6 (I'm titrated and rxed at 9) so not very much. I did notice an increase of pressure but had more leaks to contend with at 9.6. Tonight i'm going to try 8.8 to see what happens. I still think 9 is probably my best. Since I don't have an oxygen monitor (and right now cant' afford it) I don't have any idea what my sats are doing.
I'm formulating a lot of questions --should be interesting to see what he has to say.

Hi,

Without having some data to measure the results of adjusting pressure, you are really just taking a total shot in the dark. Might was well put the powerball lotto number into your machine as your pressure. Are you able to get anything from your display, such as your nightly AHI? Do you have the software to download your data? Without that, you don't know if you are having leaks, having events, or if you are changing your pressure enough to make any kind of difference.

CPAP pressure is an on/off type of thing, it does not work on a sliding scale. For example, if 8.8 is good, 9.6 is not 10% better. Rather, 1 cm of pressure could mean the difference between no treatment and complete treatment. Finding that magic number is the goal, but without being able to measure the results, you might never find it.

-john-

I can get data every morning off my machine. I am really doing good at leaks as every morning i'm getting 0. I catch alot of them at night. As far as numbers are concerned--i've been averaging anywhere from about AHi of 5 to 7 sometimes. Last week I was even up in the low teens, however most of the problems seemed to center on HI's not the AI's --the AI averages around .3. I was also basing the tweeking on how i was feeling just to see if it would make any difference. I noticed when I tweeked it up though that the numbers also went up so I'm back down to the original 9 and that's where it will stay unless the dr. wants to make any changes. I was just curious to see if it would make a difference in how I felt or how I slept--it didn't so I switched it back where it will stay. I do appreciate your comments and support from all here. I am going to try eventually to get an oximeter --or borrow one to see how my night 02 levels are doing. I've also heard that you really can't do anything about the HI's or hypopneas so i guess I won't worry about those. Those numbers are actually the highest. I'm not even sure what the actual AI score on my study was because most of those scores were based on the high hypopnea index. It will be interesting to see what the dr. says about all of this-- I will be seeing the dr. this morning and see what he has to say. I'm thinking that maybe an AUto might work as well--that's what my husband has--they didn't do a titration with him--just put him on auto. I almost wish they'd done that with me because our insurance doesn't want to pay for the titration study. (that's another story i won't get into) however i'm kind of glad they did the titration study because I have a set pressure to work with.

UPdate! Saw the dr. this morning and he was very pleased at my progress. i've gone from a sleepiness scale of 15 down to 9!
He gave me an rx for some tagaderm pads to put on my nose (where the sore is) to see if it would help keep the skin from pulling off every morning. Also he wants me to see if i can get a hybrid or Liberty type mask to take the pressure off my nose and forehead. I'm not due for another mask for a couple of months yet so i'm either going to have to wait or buy online. infact the dr. told me outright if i had to buy it myself to go online and do it. (he didn't mention any particular site) He also wants me to start taking some melatonin to see if it will help me sleep better. I'm very impressed with him so far. I'm not sure what to do about the new mask because if i get it now, i'll have to buy it outright and i'm not even sure it's going to work for me. My DME didn't have any demo ones to try and refused to let me try it unless i was going to purchase it from them. I do have one hope and that is the Mask specialist at the sleep lab. I'm going to call him tomorrow and see if he has time to meet with me so I can try this out. It was interesting because when I tried the mask fit guide on cpap.com, when the results came thru it said that the hybrid masks wouldn't even be a good fit for me--so i'm not even sure whether to try it or not. I'm actually happy with the mirage I have but the dr. wants me to have this other to rotate out to see if we can get these pressure sores to stop and heal.

karessamom wrote:....if i get it now, i'll have to buy it outright and i'm not even sure it's going to work for me....

RespCare Hybrid mask insurance SO YOU CAN RETURN IT IF IT DOESN'T WORK OUT is $34 from our host https://www.cpap.com

karessamom wrote:....hybrid masks wouldn't even be a good fit for me...

The RespCare Hybrid comes with 3 sizes of oral cushions, 3 sizes of pillows that are adjustable to 2 heights so getting the right fit is pretty easy (comes with a fitting CD or watch online at http://www.mergenetsolutions.com/hybrid/video_index.htm ).

The Liberty from ResMed has more parts making daily cleaning take longer. Plus, it only comes in 2 sizes (instead of 3), each comes with 3 sizes of non-adjustable pillows. The strap clips looks pretty fragile to me. I have one but the double-walled pillows look like they'd be a nightmare for me (lots of nasal discharge) to keep clean...so I haven't worn it yet.

Fortunately, after calling insurance company, i found out that they would indeed cover it. I didn't have a mask limit just a total yearly limit so i'm good and was able to pick one up from my dme today. I'm not sure i'm going to like it --felt really strange when they fit it but it didn't leak and i think i can get used to the air blowing up my nose. we'll see. at least it will give me some relief and let the sores heal up. then i think i can start using the other mask again.

I may have missed it but I thought you've been doing well with the UMFF. Is the sore nose a recent thing? I'm sure you know about not making the top straps too tight and maybe bringing the forehead adjustment down to full upright position to take the pressure off the nose. Has any of that worked for you? Sounds like you've got a pretty good Dr. Keep us posted. Dori

DoriC wrote:I may have missed it but I thought you've been doing well with the UMFF. Is the sore nose a recent thing? I'm sure you know about not making the top straps too tight and maybe bringing the forehead adjustment down to full upright position to take the pressure off the nose. Has any of that worked for you? Sounds like you've got a pretty good Dr. Keep us posted. Dori

Dori I am doing really well with the UMFF! It's just that the dr. wanted me to try a hybrid for a while because i can't get rid of the pressure sore on my nose and i'm getting one on forehead. I really do like the UM, however I just tried the liberty too and It's a really cool mask. at first I wasn't so sure but i think the RT that was fitting me this morning at the DME was doing it wrong. I refitted with smaller cushions than he was using and it seems to be working really good. I've heard alot of folks from this forum say they can't use the hybrid when their nose is stuffed up --so now i'll have 2 different masks to use. I still think my preferance would be the UMFF!
BTW--i really think the pressure sore was mostly caused by the first mask i was using, however the other one probably is just irritating it enough that it won't heal. --and yes about the dr. I met him for the first time yesterday and he seems right on top of everything! I think he's going to work out really good for me.