Got my machine & the last 3 days! (looong post)

Monday I went to the hospital for a 2 day, 1 overnight stay for the nap study + titration + lung/heart function tests.

Monday during the day they had me take 5 naps (and they didn't wake me up when I fell asleep, just let me sleep all 30 minutes), so when it was time to go to sleep at night, I was, surprise surprise, not very tired.

For the titration, they hooked me up to an APAP ! I thought that was clever of them, rather than having to manually adjust a CPAP all night. I only slept about 4 hours though - and even though I was prepared, I had horrible claustrophobia, the room was too hot, too much light coming through the curtains, etc etc etc.. Basically I couldn't sleep cause I was in a hospital room and not in my own bed. I was SO paranoid about mask leakage that I fiddled around with it for hours before finally being able to sleep!

Then on tuesday I had a chest xray, lung function tests, arterial blood test (that was weird), and an EKG. In the afternoon, the sleep doctor had her little chat me with me:

She said she didn't know what pressure to give me ! She said that I appeared to have central apneas, and that I *might* have mixed apnea, but the central apneas only seemed to occur as I was falling asleep, but not later once I was fully asleep. So she didn't know whether to give me a high pressure or a low pressure, and she said "So I gave you something halfway in between" ha ha So much for this being a fixed science. My pressure is now 7.

It was so cool, though, she said "Use this pressure for a while, if you're not feeling better, call me in 2 weeks and I'll tell you how to adjust the pressure over the phone" I didn't tell her my friends on cpaptalk.com would be able to tell me as well

So the first night, Tuesday night, was OK but I woke up twice in the night gasping for air. I was probably mouth breathing, but my throat was completely blocked and dry - I normally have dry throat and mouth (even during the day when I nose breath) so I was pretty sure I needed a humidifier. But I was out of town so I couldn't pick it up til Thursday (I slept with it last night and it made a BIG difference).

According to the 420G I was "compliant" for a little over 7 hours on Tuesday night. Not bad! Also I slept better not being in a hospital bed!

My boyfriend, however, said he woke up to this horribly loud noise in the middle of the night, then was worried that I wasn't breathing, finally saw that I was breathing, and then couldn't go back to sleep cause it was so loud! I figure it was a mask leak.

This morning, I was startled awake, and I saw my boyfriend peering down at me while I was sleeping - I about had a heart attack! He said he was listening to the sound to see if it was the same as the other night. (He's been sleeping in the spare bedroom in order to get a full night's sleep!). Poor guy. He said he would help me figure it out on the weekend when he didn't have to work the next day!

The weird thing is that he said that the noise this morning was the same as the noise in the middle of the night. So maybe the machine is just loud, or mask is crap (I hate the vent on it).

Nurse also said that my face and nose were really small, and they gave me the smallest mask possible, but it still tends to leak really easily as I move around. So I'm thking of looking into a kids mask! Well I found the Cpaptalk.com sizing guide so i will look there first. OH yeah, tried the nasal pillows but they didn't work cause my nose is too small - they just kept popping out.

Wednesday night, the 2nd night, I didn't have the humidfier yet, and I woke up after about 1.5 - 2 hours again gasping for air. I took the mask off, drank some water, and then miraculously fell back asleep instantly. I woke up with the mask and hose in my lap

Last night I used it all night, but again took it off at 8 am (when my BF woke me up - I had a nose itch!), and intended to get up but fell back asleep for another 4 hours without it. Ho hum.

3 nights using the CPAP and my wish list is already 8 items long! I really intend to sleep with the mask the whole night soon!!!

I must say I think I feel better, but I can't say for sure, because I keep waking up in the middle of the night , plus my sleep debt for this week was already very high when I went to the sleep study. BUT I don't feel like a monster when I wake up, and I feel a lot calmer, and I'm getting sleepy at night and able to fall asleep within half an hour or so (after stopping playing with my mask )
(Of course it's all complicated by the fact that I also stopped smoking Tuesday - and a lot of the 'feeling good' probably comes from that as well.)

Thanks to you guys I went in prepared, and although it's not smooth sailing yet, the fact that you guys are here to help keeps my motivation up!

thnx!

When you can find the time during the day and early evening, don your mask, turn your CPAP on and wear them whilst you watch TV, read the newspaper or a book, do crosswords, knit, crochet, put a jigsaw puzzle together, just doing SOMETHING that occupies your mind as you get used to having that mask on and the CPAP pressure.

Hang in there - it took me a month before I got over the anxiety of my mask. But now it feels much more natural.

I placed my machine on a towel doubled over a few times on the floor under my bed. This really cut down on the noise level to where my wife could tolerate it.

Also, and I am no expert so maybe someone else can clarify, but maybe since they don't know what pressure to put you at, you may be a candidate for a variable machine. My machine has that functionality but I haven't used it yet. I think the machine adjusts the pressure in response to events as they occur.

Good luck,
Gerry

Thanks for the advice

The third night things got better, but as others have reported, the 5th night (last night) was really good, sort of like the break-through night.

The humidifer REALLY helped!!

I also started on headgear modifications already I attached clips between the mask and the headgear so that I can adjust the straps as necessary, and then I only need to unclip the clip to take it off, so I don't have to keep readjusting it every night (I pretty much have been fiddling with the headgear for like 30 minutes everynight - this morning I woke up with a sore nose bridge )

I also bought a plastic bin to keep the cpap in, so now i put it on the floor, in the bin (no lid - to keep the air circulation ok), and the noise is also OK. During the day I put the lid on to keep the dust out. The sound of the air now lulls to me sleep, as I've read it does for others

My doc said she doesn't "trust" the APAP because they don't interpret breathing events properly (example - during the titration with the APAP she said the pressure kept rising for no apparent reason). I'm ok with a normal CPAP, and she said she will show me how to change the pressure next week if it's not 100% - she seems to be a good doc so I think I'll be ok. I do notice that since I've gotten used to it, the pressure doesn't seem high enough (I'm at 7 right now, but she was worried about central apneas so she started me on a lower pressure). I do however want to get a machine with stats (I'm thinking of the GoodKnight 420S) to check on the stats, especially the leak rates.