Diary of a Newbie

[Rando]

Pretext: I tell my doctor I may have sleep apnea, because my wife has worn earplugs for years and I can regularly wake the dead with my snoring. I'm not tired during the day though, don't fall asleep at the wheel, and am mentally sharp. However, I've never been able to breathe through my nose regularly. Sometimes it's clear, sometimes not. My doctor sets up a test at a sleep lab. The actual appointment is two months later. They give me a gizmo that monitors my sleep and send me home. I take the gizmo back the next day. After waiting another month for results, they confirm I have "moderate" sleep apnea. I'm scheduled for a class to take place two weeks later.

Day One: I go to a class in a hospital and watch a cheesy movie about what sleep apnea is. (I'm thinking that if you've been diagnosed, are in the class and you don't know what sleep apnea is by this point, you should be in a different part of the hospital.) They get to the good stuff, which is the shoebox-sized CPAP machine in front of each of us, complete with tubing and a nasal mask. We're instructed on how to put on the mask, what the CPAP does, etc. and are told this is NOT our "permanent" machine, but rather, this one takes readings to enable the sleep technicians to better "tune" our permanent machines. We have to sleep every night with this thing for a week. Joy.

Night One: I have to rearrange everything on my nightstand (it's rather small). I psych myself up for the first night with the machine. I go to bed a bit earlier and wear the mask first by itself to get used to the feel. I make jokes to my wife about "Silence of the Lambs." She calls me "Fighter Pilot." I turn on my side, attach the tubing, and turn the machine on. "It's not too bad," I'm thinking. "I could get used to this." I drift off to sleep. Fifteen minutes later, I wake up and the inside of my nose is on fire. I keep closing my mouth, falling asleep, waking up with fire-nose, and repeat the cycle over and over. I get like two hours of sleep total. Yay.

Day Two: I wore the mask too tight the night before and have marks on my face, which thankfully go away in a couple of hours. I'm a zombie at work. I call the sleep center. The technician says "The machine is adjusting to your needs." Well, if my nose needs to be burnt to a crisp, it's doing a fine job. "You may need humidification, but try some saline spray." I call my regular doctor, tell him what's going on and that my nose is mysteriously clogging on one side (which it was and had been, even previous to my sleep center visit), and he prescribes a steroid nasal spray.

Night Two: I try for about 30 minutes. I give up and take the mask off and go to sleep because I'm afraid of not performing at work the next day.

Day Three: Repeat day two, except I call the sleep center again and the same technician repeats the same phrase from Day Two, except she wants the numbers off the LCD on the machine.

Night Three: Repeat Night Two.

Day Four: I call the sleep center and get a recording. Twice. No response. The steroid nasal spray is starting to work, and my nose is opening up. Finally.

Night Four: Repeat Night Two.

Day Five: I'm off work this day, running errands. I get a call on my cell. It's the sleep center, returning my call from Day Four. This is a different technician. A really good one. She listens to my firenose story and my frustrations. She said she'd get me a full face mask, but encourages me to keep trying so they can get enough data off my temp machine. I agree to give it the Old College Try.

Night Five: I discover this board. Something "clicked" in my head that night, and I was actually able to retrain 40 years of habit and sleep for 5 hours with my mouth closed. Firenose turned to smoldernose - not completely gone, but not as bad as before.

Day Six: I feel pretty good. Until around noon, when I figure out I'm catching a cold.

Night Six: I keep my mouth shut (insert joke here) and get 6 hours sleep, waking only once. Smoldernose is still there.

Day Seven: This is today. I pray there's enough data on the temp machine - and there is. They grab the data, decide to set my level to 6.0, and give me a RemStarPlus M-Series with C-Flex. And a full face-mask. The technician wants to try the full face mask first, then perhaps humidification at a later date. I can live with that. My cold is getting worse, my nose is now a faucet and I have a slight cough.

Night Seven: I've ordered extra "ultra-fine" filters for my new machine, as well as the swivel adapter. We'll see how it goes tonight. Every night is a little better. Just wish this cold would go away ...

[rested gal]

Well, if my nose needs to be burnt to a crisp, it's doing a fine job. "You may need humidification, but try some saline spray." I call my regular doctor, tell him what's going on and that my nose is mysteriously clogging on one side (which it was and had been, even previous to my sleep center visit), and he prescribes a steroid nasal spray.

"may need". Wow. They send people home with no humidifier, and worse...no healthcare professional gives you a humifidier at this point.

Day Five: I'm off work this day, running errands. I get a call on my cell. It's the sleep center, returning my call from Day Four. This is a different technician. A really good one. She listens to my firenose story and my frustrations. She said she'd get me a full face mask

She may have been a more sympathetic listener and perhaps better than the first one....but still no humidifier. So, not "really" good, imho.

The technician wants to try the full face mask first, then perhaps humidification at a later date.

Man, oh man, oh man...."perhaps humidification at a later date." (emphasis mine)

They're really making it hard on you, Rando, bless your heart. Not many new users would stick with it like you're doing.

Quite a few people prefer not to use humidification and do fine without it. But what you've described reporting to at least three different healthcare professionals...the firenose and smouldernose you were enduring... geeze, I think that should have caused any health care professional to get you a heated humidifier THAT DAY. Just my rant-ish two cents.

Good luck! Dig into this message board as if you were a med student studying for the exam of your life. 'Cause sounds like with the tender (?) care you're receiving, you're gonna have to find out how to deal with comfort issues on your own -- and probably treatment issues, too.

You won't really be on your own, though -- you'll get plenty of help here.

[nana]

Rando
Keep up the good efforts. I am new at this since January. I will tell you that everything RG has said it true. I would not have survived without my humidifier............unless I lived in the Rain Forrest. I have empathy with what you've said and the energy it sometimes requires to take care of ourselves, even in our temporary tiredness. This forum is a life saver. Keep calling the RT or doctor to get what you need.

[Rando]

So hey, I'm back from a very, very bad cold. This thing was the worst ... incredible nasal and chest congestion. I didn't use my machine the whole time because I couldn't breathe without it, let alone with it.

Now that I've been over it for a few days, I've been doing the CPAP every night for a week. And you know what? I've trained myself to sleep with my mouth closed. I usually only wake up once a night (maybe twice) if my mouth happens to open. My sleep technician sent me a F/F mask, a Respironics ComfortFull 2. I'll try it, but it looks rather big - and I may not need it.

I can tell a slight difference after using the machine for a week. I wake up much faster. My afternoon energy level is also a bit improved. And my wife is amazed because I don't snore!

[Wulfman]

Welcome back.

Glad to hear you're doing well with your therapy.

Hang in there.

Den

[Hurricane]

Keep up the perseverants a major approach to cpap treatment, no matter how much advice is given, it seems like everyone has a different need or style of equipment, example started out with straight cpap, went to apap' went from Profile Lite mask, to Swift pillows, then to Ultra Mirage, And now one of the lowest priced mask the Comfort Gel, I think I finally found the one I have been hoping for, moral of this, keep at it the solution will come.
Ed