4 weeks in and starting to feel discouraged...

[hskriver]

Hi everyone,

I'm 4 weeks into my CPAP treatment and I'm starting to feel a bit discouraged. I welcomed the sleep apnea diagnosis because I had been so tired for so long. I was so relieved to finally have a reason and a pretty clear path to better sleep. At first, I noticed a small, but very clear improvement in how I felt on CPAP. I even had one glorious day after my 6th night where I felt amazing and had tons of energy for most of the day. I crashed at about 3:30 pm and felt more "normal" for me the rest of the day, but was so happy to have had almost a full work day feeling energetic and focused. I thought that I would continue to make small improvements and eventually have more of those days. However, the past few weeks I've been regressing and feeling closer to how I felt before CPAP. I recognize that treatment takes some time and there will be good and bad days. I just feel like there have been way more bad than good days the last few weeks and I'm starting to lose the hope I initially felt. Is this something other people have experienced?

I think a change is needed, but there aren't any obvious problems to me in terms of mask fit, comfort, leaks, etc. I've been able to sleep with the machine easily and get 8+ hours of sleep each night, though I do still wake up 1-3 times in the night. I have a Philips DreamStation, which doesn't appear to be supported by SleepyHead yet, so I can't look at my detailed data. I am able to see my total AHI for each night using Philips DreamMapper app. I do notice I feel better on days my AHI is below 2. For the first week, my AHI was pretty consistently below 2, but has been in the 2-3 range since then. I did switch masks one week in. I started with the Opus 360 nasal pillows, but realized that I mouth breathe and a chin strap didn't seem to be helping that much. So I switched to the Amara View face mask. I like that mask much, much better. A lot more comfortable and easier to set up and side sleep in. Last night, I decided to try out the Opus and chin strap again since I did get a lower AHI with it. That only reinforced that I really don't like that mask. The chin strap also is not effective in preventing mouth breathing (I think this is because I have a lot of trouble getting it in the correct position on my head and tight enough once I have the headgear on). I also have rainout problems with the Opus that I don't have with the Amara View. I switched back to the Amara View late in the night since the Opus was bugging me so much. My AHI was 4.1 last night and I feel pretty terrible today. I have more hypopneas than apneas it seems if that matters. Does anyone notice a difference in the mask they use and their AHI?

Another important detail, I was initially set to auto CPAP with a range of 4-15. My insurance won't cover a titration study, so this was what was being used to determine my official pressure settings. On Monday, my DME changed the setting to a straight 7 pressure. I know it is pretty much impossible for anyone to help me figure out if this is correct since I can't use SleepyHead. I will say that I started checking my pressure before I would turn the machine off before going to the bathroom in the middle of the night and I did notice that it was usually between 4.5 to 8.5 when I saw it, though I did see it get up to 15 once. I'm wondering if 7 is too low.

I called my DME today and left a voicemail to discuss my problems and am waiting to hear back. I know a lot of people have bad experiences with their DME/doctor, so I'm a little worried she won't be able to help. My initial impressions have been positive, but haven't interacted with her enough to really know how helpful she will be.

I'm trying really hard to stay positive and remind myself that this is a long-term process, but it's been really hard this week with how much regression I've seen.

[Wulfman...]

You need to take charge of your own therapy. Get Sleepyhead software and learn how to change your own settings to tweak them for optimum results.


Den

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[BlackSpinner]

Take total control. Get a copy of the clinician manual and set it to 7-15.

A lot of subtle changes take place the first month or three. Sometimes it takes up to a year to repair the damage done to the organs.

The bathroom trips are a good example - stress hormones causes it and it creates a lot of stress on the kidneys.

[chunkyfrog]

The clinician manual will also tell you how to get into additional screens where many of our
"secret numbers" are each morning. This might help until Sleepyhead catches up.

[robysue]

I have a Philips DreamStation, which doesn't appear to be supported by SleepyHead yet, so I can't look at my detailed data.

You may want to use Encore to look at your detailed data until JediMark is comfortable enough with the SH 1.0-beta version to release it as a stable program. You can get specific instructions on how to get the most recent version of EncorePro that works with your machine if you wander over to
apneaboard.com. You will need to register as a user over there. Then look through the Private Files and Links material that is only available to registered uses who are logged in. There's a specific thread with instructions on what you need to do to get a download link for Encore.

For what it's worth, I think it would be worth while for you to get Encore since looking at the detailed data may help figure out what's going on at night. Even though Encore Pro won't show you the flow rate data, it will show you everything else.

I am able to see my total AHI for each night using Philips DreamMapper app. I do notice I feel better on days my AHI is below 2.

Do you look at the AHI first thing in the morning? And if so, what's your first reaction if the AHI is above 2.0? It's important to not let the data tell you how you should feel. (That was a lesson I had to learn the hard way.)

For the first week, my AHI was pretty consistently below 2, but has been in the 2-3 range since then. I did switch masks one week in. I started with the Opus 360 nasal pillows, but realized that I mouth breathe and a chin strap didn't seem to be helping that much. So I switched to the Amara View face mask. I like that mask much, much better. A lot more comfortable and easier to set up and side sleep in. Last night, I decided to try out the Opus and chin strap again since I did get a lower AHI with it. That only reinforced that I really don't like that mask.

There's a lot more to getting a really good night sleep than a really low AHI. In your case mask comfort is an important issue. If you are really uncomfortable when trying to sleep with a particular mask, that can make it more difficult to get into deep sleep or REM---i.e. you can get "stuck" in more light stage 2 sleep when you're not comfortable. If your OSA is sleep-stage dependent, that can mean the less comfortable mask gives you lower AHI's because you're just not sleeping as deeply as you should be.

Last night, I decided to try out the Opus and chin strap again since I did get a lower AHI with it.
...
I switched back to the Amara View late in the night since the Opus was bugging me so much. My AHI was 4.1 last night and I feel pretty terrible today.

DreamMapper can't answer this question, but it could be answered by looking at the data in Encore: Was the AHI substantially different between the two parts of the night? Or was this just a bad night for your OSA all around?

On Monday, my DME changed the setting to a straight 7 pressure. I know it is pretty much impossible for anyone to help me figure out if this is correct since I can't use SleepyHead.

Looking at the data in Encore would be just as useful/helpful.

I'm trying really hard to stay positive and remind myself that this is a long-term process, but it's been really hard this week with how much regression I've seen.

It's easy to see why you're getting discouraged. No-one likes going backwards after a bit of progress has been made.

I strongly suggest that you get EncorePro and post some screen shots of the detailed data from the Encore reports. It's true that EncorePro is a real pain in the neck to deal with, but it's better than nothing while you're waiting for the SH 1.0-beta to be released.

[Mudrock63]

Sorry to hear you are having troubles. After much tweaking of my settings, I am now reliably below 2.0 AHI. And I still have days where I feel better than others. Have been at this since October. I have gone two nights without treatment, and that was enough to make me realize how much better off overall I am with the treatment. I agree that it would be worth you while to wrestle with the Encore software so that hopefully the folks here can help you. Good luck and God bless!