RE: Newly diagnosed and overwhelmed
(03-27-2014, 11:42 PM)Thefabulousmrsk Wrote: I'm lucky that I've taken to cpap well. Though tonight is one of those off nights where I'm struggling. Most nights I don't though. However I'm on a 3 day work week and feel just barely able to get through. Most work days I fall asleep by 7 pm. Mind you before cpap 3 days was too hard and I was looking at disability. I'm suffering from depression and no matter how hard I'd try I'd always crash. Medication helps with mood but of course not energy. My depression is so much better. I think that's the area that's improved the most so far. I am starting to feel like my old vibrant self again. Even if it's in short bursts.
This is all promising news. Hopefully you will continue to see real progress in terms of feeling like your old vibrant self.
Quote:I'm not doing any data monitoring yet. I'm going to wait till I have my own machine before I tackle that.
Regardless of when or whether you intend to do data monitoring for yourself, it's important to start thinking about how to avoid getting stuck with a machine that does NOT record efficacy data.
Make sure you understand your insurance and how it pays for equipment very clearly. Make sure you understand whether you have a choice of
durable medical equipment providers (or DMEs). Not all DMEs are created equal and some are prone to outright lying about efficacy data machines to new CPAP patients. Request that you have a physical copy of your prescription and do not just authorize the sleep doc/center to fax the script to a DME that you've never heard of.
Be keenly aware of the fact that the naming of the various models in a given CPAP/APAP line can be very, very confusing for a newcomer. Try to establish
before hand exactly what the make and model number of the machine the DME plans to sell you is. If they simply show up at your door with a brick that you don't want, refuse delivery. It's much harder to get a DME to switch out a brick for a full efficacy data machine after you've already taken delivery of the brick.
RE: Newly diagnosed and overwhelmed
I am new as well and I THANK GOODNESS all the time that this forum is here. The people here are full of knowledge and willing to share it. You won't go wrong, it has helped me so much. I wish you much success with your therapy, it is a good thing. Once you find your mask that works for you, you will know you are on your way. You have to be willing to try things, I found after a bunch of masks that the nasal pillows were the most comfortable for me, I am using a ResMed p10 and it's light and unobtrusive. My rates are good. Welcome to the forum.
RE: Newly diagnosed and overwhelmed
Well today I went for the second sleep study follow up. Apparently they could not find the right pressure for me. I'm being prescribed apap.
RE: Newly diagnosed and overwhelmed
(04-01-2014, 07:48 PM)Thefabulousmrsk Wrote: Well today I went for the second sleep study follow up. Apparently they could not find the right pressure for me. I'm being prescribed apap.
That's a good thing imho. I like my machine deciding what's best for me because when I'm asleep I really don't know. So mine perks along in between 12 and 15. The only thing I didn't like about the defaults was the starting pressure of 4. Talk about sitting on the edge of the bed hoping the stupid ramp thing would ramp before I lost consciousness. I start at 7 now, and probably will be moving that up in a week or so.
04-01-2014, 08:08 PM
(This post was last modified: 04-01-2014, 08:11 PM by c0reDump.)
RE: Newly diagnosed and overwhelmed
(04-01-2014, 07:48 PM)Thefabulousmrsk Wrote: Well today I went for the second sleep study follow up. Apparently they could not find the right pressure for me. I'm being prescribed apap.
That's not a bad thing
A lot of people on this board have to fight to get an APAP machine (your prescription guarantees it) -- you just need to settle on which machine you want, and ask for it by name.
Edit: retired_guy, I turned the ramp function off on my machine the second night. I prefer to have my machine go straight into therapy pressures so I can get the mask fitted right.
RE: Newly diagnosed and overwhelmed
(04-01-2014, 07:48 PM)Thefabulousmrsk Wrote: Well today I went for the second sleep study follow up. Apparently they could not find the right pressure for me. I'm being prescribed apap.
Hi Thefabulousmrsk,
That's great that you are going to be prescribed an APAP.
Best of luck to you with the new machine.
trish6hundred
RE: Newly diagnosed and overwhelmed
Don't be discouraged. I'm self-treating and had to start totally from
scratch. This forum got me up to speed pretty fast. The hardest thing
for me was getting the right mask. I spent almost as much trying
different masks as I did on my craigslist S9. Once I found a mask
it took some time to "learn" which sleep positions worked the best.
That was about the only thing that I had to tolerate. I still have that
restricted feeling as I only have 2 positions that work perfectly.
I went from 48AHI and many de-saturations to now most nights
are UNDER 1.0 last night I didn't feel I slept well but had a .3. I never
have a de-saturation any longer even on the rare occasion my AHI
exceeds 1.0. I had a 7AHI last month still no significant O2 problems,
low at 93. Stick with it. The pressurized air never bothered me even when I was at 14psi. Now at 12.5. Masks leaks were my big problem.
RE: Newly diagnosed and overwhelmed
(04-01-2014, 07:48 PM)Thefabulousmrsk Wrote: Well today I went for the second sleep study follow up. Apparently they could not find the right pressure for me. I'm being prescribed apap.
Just make sure the DME does NOT set you up with the Resmed S9 Auto ESCAPE, which does not record leak data and which does not distinguish between CAs and OAs.
Other thing to watch out for is a DME that decides to set you up with a PR Series 60 System One PRO set in 30-day Auto-Trial mode that will be a full APAP for the limited period of 30 days before the machine reverts back into a mode called "CPAP Check" mode which is essentially a straight CPAP mode with a very, very limited ability to adjust the pressure by 1cm up or down every 30 hours of run time.
You want to make sure the machine says: S9 AutoSET or System One Auto CPAP with A-Flex
RE: Newly diagnosed and overwhelmed
(04-02-2014, 08:10 AM)GreyParrot Wrote: The pressurized air never bothered me even when I was at 14psi. Now at 12.5. Masks leaks were my big problem.
Just wanted to correct this -- 14psi is enough to burst a basketball
CPAP pressures are measured in centimeters of water (cmH2O):
http://www.apneaboard.com/wiki/index.php?title=CmH2O
A maxed out CPAP machine would push roughly 0.25 psi (if one were to do the conversions).
RE: Newly diagnosed and overwhelmed
(04-01-2014, 08:08 PM)c0reDump Wrote: (04-01-2014, 07:48 PM)Thefabulousmrsk Wrote: Well today I went for the second sleep study follow up. Apparently they could not find the right pressure for me. I'm being prescribed apap.
That's not a bad thing A lot of people on this board have to fight to get an APAP machine (your prescription guarantees it) -- you just need to settle on which machine you want, and ask for it by name.
Edit: retired_guy, I turned the ramp function off on my machine the second night. I prefer to have my machine go straight into therapy pressures so I can get the mask fitted right.
I also turned off the ramp on my machine in the first few days. Reading on this forum gave me insight about the ramp feature and that I could turn it off. Looking through the settings I saw ramp was set to begin at 4. That low pressure of 4 didn't agree with me during polysomnogram either. I made a derogatory remark to the technician that I though CPAP was supposed to give me more air ... not smother me. She turned up the pressure to start me out at.
