First Couple Nights and I Feel Worse

Tried searching the forums and mostly I only found messages from folks that say they don't feel any better the first few nights. I actually feel worse, exhausted and out of it the next day (some would say foggy?). I am renting a basic model CPAP (Mirage Swift and Fisher & Paykel CPAP) setup. I didn't sleep very much at my sleep study (some anxiety issues) so they kinda guessed my setting at 10. After trying this I found it much too difficult to breathe out once the ramp was done, so I had my dr. change it to 7 until I get used to it. Now I am able to sleep with it, but I still wake up feeling like crap. Very discouraging, so I try a night without the cpap and feel better again (not great mind you, still have issues with feeling tired, but not completely exhausted).

Any thoughts? Should I try CFlex or something like that? I'm quite discouraged.

Hmmm, there are probably several issues here, not the least of which is what is really your correct pressure setting? Since 10 seemed to high, your doctor lowered it to 7, but based on how you're feeling, I would say that 7 is too low.

The next area to be suspicious of is the interface as it very well may be leaking. Are you on a full face mask, nasal mask or nasal pillows? With the last two, keeping your mouth shut is absolutely necessary to assure the air isn't just blowing in your nose and out your mouth doing you no good whatsoever.

For some a chin strap works to keep the mouth shut. With others tape may be necessary.

As for the C-Flex, although wonderful for providing a natural feeling to your exhalations, I would investigate the first two options before thinking that C-Flex may solve your problem.

Good luck

itsme,
When I began using my machine back in October, it took me about three weeks before I began to think that life would get better. During those first few weeks life was more difficult, but because I had the machine and its support software I was able to work through the pressure setting and leak source issues on my own. In your case, you might need to take the machine's card to your sleep center or whoever is helping you dial in the machine, on a more frequent cycle so you can get more feedback about what is working and more importantly what isn't working, like leak rate.

If you can get yourself through the first few months and if the machine gets dialed in correctly, you should begin to notice the need for day-time naps goes down and you'll begin to wake with more energy.

Be very careful when driving the first few weeks of treatment as the increased feeling of being tired will mostly likely be refected on the road.

itsme wrote:Any thoughts?

Yep. You've come to the right place. First, you need to take personal control of your therapy. The flunk-out rate for CPAP is about 50%. Considering that group includes a lot of people who felt really awful prior to starting CPAP, and really wanted for CPAP to work, but just couldn't handle the therapy, it says a lot about how bad getting started on CPAP really can be and how little the sleep docs and DME's know about helping people adjust.

If you can take the time to read through some of the prior posts on this board you will find lots of useful suggestions to ease the adjustment. No two people seem to handle it the same and many adjustements are often required, not the least of which is demanding responsive service from both your sleep doc and your DME.

Some of us monitor our progress with software to help us learn what adjustments to make, and if the experiences on this board are any indication, the flunk-out rate when using the software approaches zero. I don't recall reading about anyone using software that quit CPAP.

Just judging from what you said so far, you can't depend upon your doc and DME to fix your therapy.

Now, as to your machine, what you've got is clearly not working for you. You know it and your sleep doc knows it. Get an APAP with software. Don't settle for anything less from your sleep doc and DME. If they balk, take your prescription and get your equipment on-line. Monitor your progress with software.

Hope this helps.

Regards,
Bill

Thanks everyone for the support. I'm glad to hear I'm not the only one who starts off having problems. Unfortunately my current machine has no memory card software feature. As a software developer, I'm very interested in seeing the data that would come out of a good machine (especially since my sleep study data was so inconclusive). As I mentioned before, I only rent my current machine, so changing shouldn't be too bad, BUT my current prescription is only for cpap, not apap or bipap.

I'd like to try the cflex machine, does anyone have advice on the way to go about getting my doc to write up a script that would get me the cflex one? My doc is pretty good, but my equipment supplier is pretty crappy.

Everyone talks about leaks and such, would I be able to notice leaks on my own? Because as of yet I haven't really noticed anything like that.

thanks

itsme wrote: . . . my current prescription is only for cpap, not apap or bipap.

That's all it takes to get an APAP! (Somewhere on CPAP.com they talk about that.)

OK, technically, maybe they have to set up the machine in CPAP mode per the prescription, but it's easy to readjust the machine once you get it home. From what you've said your doc is just guessing at what your titration should be anyway. After a week with an APAP, you'll know lots more than your doc does about what works for you.

Regards,
Bill

Just me above appearing as Guest above. (I hate that timed log-out function.)

Regards,
Bill

itsme,
Most of everything you'll need to know about your treatment can be pulled out of the machine if you can get a machine to record the data. My machine is a Respironics Auto w/CFLEX and I've capture all my sleep data since day-1.

Try to get your hands on a Respironics so you can use Dereck Rowell's "MyEncore" software. Dereck has taken the process of capturing the data that Respironics stores in a MSSQL Server DB and given us about 16-dialogs where data can be viewed. The information on Derek's graph screens will teach you a lot about how your treatment is working.

To get to the data in a Respironics machine you'll need their software and access to a smart card reader. You can find a smart card reader for less than Respironics sells them, but I didn't want to deal with the hassle that could surface so I just spent the money and went with the full software package. With that software you'll be able to take the data from the machine and get it into the MSSQL data base, where Derek's software can access it. Derek's software is free, but Respironics' software is about $200 w/reader.

To get the DOC to subscribe CFLEX, you'll have to think about whether you are having trouble exhaling. If you find it a little difficult let the Doc know you'll like to use CFLEX to make exhalations easier. My CFLEX is set to the highest level of 3 and I find that comfortable.

If you can't get an AUTO, you can still get to where you are going but it might slow you down just a little. Once you get your settings dialed in, you'll might not find any difference between a straight CPAP and an AUTO, but if you find your best setting is a small range, then an AUTO is the best solution. Wide ranges in an AUTO don't seem to be very useful because of how the software logic tries to optimize its pressure settings. However, a narrow range will work in some cases. I'm currently using a range of 12.5 cm to 14.0 cm, and would have locked it down at 14 if I could have found a good full-face mask that didn't leak so badly as mine does. Because I haven't found a good full-face mask, I've been using a nasal mask knowing my lips are now part of the leak process when the machine's logic pushes pressure to 14.0 cm. At some point I'll find a good local DME and get a better mask. In the mean time, well, life goes on.

Roger... wrote:To get the DOC to subscribe CFLEX, . . .

My recommendation is don't even worry about another prescription, just concentrate on the machine you want.

Since you're a software guy, setting it up will not be a problem. With the Respironics, for instance, you can access the entire setup menu by first unplugging power, then pressing the two middle buttons on the top of the machine while simultaneously plugging the AC power cord in. (pretty easy, huh?)

Regards,
Bill