Getting Frustrated

[WendiP]

I'm getting so frustrated with my numbers and I am not sure if I am obsessing too much over them, or if this is normal. I have received so much help reading these boards before I thought I would put this out there and see if ya'll could help. I have been using CPAP since December 13.

First of all, I recently switched from an HMO to a PPO and was being seen by my PCP and not a sleep specialist. My supplies were coming from a medical supply business who had a RT on staff and would see me.

The current mask I am using is the Amara. It leaks terribly, mostly into my eyes, despite me trying two different sizes. I also bought the pad-a-cheek, which I LOVED but it seemed to make the leaks worse, not better, so I have removed it the last two nights.

I am a mouth breather, so I have to use a FFM. I have tried the Mirage Hybrid, but I hated the way it made my nostrils sore from the constant air blowing (I am on CPAP with a 4.5 min and ramps up to 11 after 30 minutes). I am currently waiting for the medical supply to get my new Quattro Air in. I am very frustrated with them as well because I've been waiting for over a week now.

The thing that frustrates me the most are my numbers. I have never felt that miracle moment like many others have, but I have noticed positive changes. For instance, my morning headaches are gone, I don't feel as much fatigue during the day, and my mood has improved dramatically, albeit gradually and not overnight. So I don't want to abandon using the CPAP. However, I still have so many events. Lately, they have all been Hypos, and not OSA. But then last night I had 31 OSAs. I also have a lot of Unknowns, and RERAs. When I have a lot of events, I don't feel as good during the day. It was also noted in both my sleep study and the titration study that I spend most of my sleep cycles in phase 1 and don't reach REM till 4-5 hours. I have been trying to research this and can't find anything about that. I know from research that I am spending too much time in phase 1.

My question is, what is normal and are my numbers normal? It seems from a novice that my numbers are not consistent and are fluctuating too much and I am feeling it the next day. Any ideas? Suggestions? Advice? My charts are below.

Thanks to everybody, W

[jwerley]

Hi Wendi

I am not a wiz at deciphering charts, but from what I see, you need to get your leaks under control before anyone can see for sure how you are doing otherwise. I personally hate full face masks for the very reason you are having problems....they are just too hard to control the leaking. Have you ever tried a nasal mask? I have a big problem with mouth breathing as well as my jaw dropping.

Here is what I do: I wear a nasal mask the "Wisp". I first use "Chinups" to tape up my mouth/jaw, (the boomerang fig.1) then I put my chin strap on, then my mask (not too tight) This works very, very well for me. My leak rate has been at zero!



You could give this a try or some variation of this and then see how your numbers look.

Hope this helps!

Janice

[WendiP]

I wish there was a place where I could take the mask on a "test-run" before I committed. I have tried three different masks and it takes so long for the supply co to get me a new one. I would love to try the nasal mask and even the cloth mask to see if it would be better. I have a sensitivity to adhesives (the tape during the sleep study left red marks for days on my skin), so I'm not sure I could use the chinups. At this point though, I am open to everything. I tried using a gecko pad and the pad-a-cheek already.

[sleepinow]

Why not get the masks that are rated the best so that way the chance of those masks to work on you are much better. Hybrid masks are not even rated too good so many people tend to dislike it. Go on cpap.com and look at the ratings and read them and choose the type of mask that will best suit you

And last night I saw on cpap.com a promotion that lets users use and return their mask if it does not satisfy them. I did not read the terms and conitions but it is worth a shot

[jwerley]

Wendi....My skin is also super sensitive...You can put your moisterizer on before the tape and it still holds very well. Chinups also has some protective skin barrier wipes that they send you with a trial pack. I think the trial pack is either free or very little cost. They include the 3 different styles of tapes, adhesive wipes and the barrier. This tape is amazingly easy on your skin. The people that own this company are really nice....I think they run it out of their home and are very helpful! I was desperate and willing to try anything and so glad I did. I was taping over my mouth before and that was painful and not being able to take a drink of water if needed was not good. With the chinups you can cough, drink, and even talk a bit.
FYI: I have tried many nasal pillow and nasal masks, including the Aloha (made my nares sore), also the Sleepweaver nasal mask (Had problems controling leaks) and of course the Swift FX (again sore Nares). But.......Masks preferences are very individual and personal because everyone is so different. The above suggestion is a good one!

Good Luck!

Janice