Doing horribly.

[John from Brookston]

I'm not doing very well with this. Just looked at the clock and it's midnight, and I'm thinking "Oh no, I gotta put that mask on and try to go to sleep."
Or
"I gotta get to sleep but if I don't mask up I'll have a stroke or a heart attack..."
And either way, I'm not going to be worth doo-doo at work tomorrow.

Yeah, they put the fear of the Flying Spaghetti Monster in me alright. If I DO get to sleep with the mask, it's after 3AM, which isn't too bad on Friday or Saturday, but the rest of the week the alarm goes off at 6:30, my befuddled brain finally flashes on the fact that it's beeping (you ought to see my graphs while this is going on) usually after 7, and I gotta be out the door by 8, which usually doesn't happen.

The first month went so well. After a few days of getting used to it and getting a script from the doc for the claustrophobia, I was knocking off 6-7 hours a night, dropping right to sleep, AHI running around 1, 2, staying awake at work. Then the pills ran out, I went through a rough week of withdrawal and return of the claustrophobia and now, even though I'm back on the Klonopin, I've lost everything. Bedtime fills me with dread, I usually have an apnea or three just as I'm drifting off which jerks me wide awake, the chart says I snore like I wasn't on PAP and my AHI is 6 plus.

I realize the learning curve can be rather long and steep, but WTF?

[kaiasgram]

Hey John, I'm sorry about what you're going through and you are most definitely not alone. I understand the dread and avoidance of bedtime very well. Just wanted to offer some support tonight.

[ems]

I sure wish I had a magic suggestion for those of us who struggle with this therapy. The title of your thread got to me... I really am sorry.

[John from Brookston]

Thanks, guys, That's why I like this group.
Well, 10 till 2... Going to have a snack (sugar's not waiting till 4:30 to crash tonight), wait for the drug to kick in and take a whirl at it. Wish me luck!

[kaiasgram]

Thanks, guys, That's why I like this group.
Well, 10 till 2... Going to have a snack (sugar's not waiting till 4:30 to crash tonight), wait for the drug to kick in and take a whirl at it. Wish me luck!

You got it -- good luck. Breathe. Just do your best. Check in tomorrow and let us know how you're doing.

[49er]

John,

I am so sorry you are struggling.

A possible reason is the sudden med changes (cold turkey withdrawal and then back on the med) have disrupted your sleep. Hopefully, this will pass quickly and you'll be back to having the same success you initially had.

49er

I'm not doing very well with this. Just looked at the clock and it's midnight, and I'm thinking "Oh no, I gotta put that mask on and try to go to sleep."
Or
"I gotta get to sleep but if I don't mask up I'll have a stroke or a heart attack..."
And either way, I'm not going to be worth doo-doo at work tomorrow.

Yeah, they put the fear of the Flying Spaghetti Monster in me alright. If I DO get to sleep with the mask, it's after 3AM, which isn't too bad on Friday or Saturday, but the rest of the week the alarm goes off at 6:30, my befuddled brain finally flashes on the fact that it's beeping (you ought to see my graphs while this is going on) usually after 7, and I gotta be out the door by 8, which usually doesn't happen.

The first month went so well. After a few days of getting used to it and getting a script from the doc for the claustrophobia, I was knocking off 6-7 hours a night, dropping right to sleep, AHI running around 1, 2, staying awake at work. Then the pills ran out, I went through a rough week of withdrawal and return of the claustrophobia and now, even though I'm back on the Klonopin, I've lost everything. Bedtime fills me with dread, I usually have an apnea or three just as I'm drifting off which jerks me wide awake, the chart says I snore like I wasn't on PAP and my AHI is 6 plus.

I realize the learning curve can be rather long and steep, but WTF?

[danmc]

You'll get there mate. It takes a while. Mostly it gets better but sometimes it goes backwards a bit for most of us. But, even with a bad night on cpap you are improving your general health, avoiding other problems and adapting to the mask. So just do your best.

I can tell you that I was exactly the same when I started and then after a while, I honestly could not tell if I had the mask on once I fell asleep. If I woke up I had to feel for the air flow to be able to tell if it was still on. Sounds weird but you will adjust. Every night you persist is a step in the right direction.

Maybe concentrate on the other aspects of a good nights sleep and take the focus off cpap a bit - exercise, eat right, sleep habits. I find just having a 20 minute walk makes a massive difference for me. Itake an mp3 player or a radio and headphones and its great.

I also used to read with the mask on. In fact, I just wore it to hell with a kind of bloody minded determination that no matter what, I would get used to it. Now I cant even imagine sleeping without it. I still get odd problems, dry mouth when I forget to replace my chinstrap and it gets all saggy etc. But at least Im in control now - before cpap I thought I had good sleep but I was just unconcious when the problems happened.

It will all come good.

[RandyJ]

Have you tried other masks or mask types? If you are not primarily a mouth breather, you might be able to use a nasal mask or nasal pillows, the latter of which is just 2 small prongs that go into your nostrils, unlikely to provoke feelings of claustrophobia.

If a full face mask is your only option and you are claustrophobic, I can understand why that might be difficult, especially if you are using a low pressure like 8 or less.

[John from Brookston]

Since I wasn't going to bed anyway, I put my Engineering education to use and ran models of my first 2 months on PAP, looking for variables that might explain why one month was duck soup and the next was the Nights from Hell.
I identified two things that were different recently, and I need more data, but I removed the variables last night and once I did get to bed after 3AM, I had a very uneventful night. Did not wake up feeling like I owned the world, but hey, only 3 hours, get real...

One variable was the addition about 4 weeks ago of a common "natural sleep aid". This coincides with the onset of my problems, which I attributed at the time to the inadvertent Klonopin withdrawal. Like I said, I need more data. Also changed over to summer bedding (put the flannel sheets and down duvet away).
The other variable was that I had a head cold last month and changed from the "True Blue" nasal mask to a Mirage Quattro. Went back on the Blue last night, and while I think the cushion's shot (had dry eyes this AM) there was a marked reduction in events. Went from an AHI of 6.8 to .6 in one night, with a very marked reduction in snoring. Leakage was up, but never in Large Leak territory.

kind of early to draw conclusions, but I think i'm onto something and heading in the right direction here.
Thanks for the kind words and support, it means alot to me since I live alone and don't have much of a "support team".

[imfletch]

John--
Wow!
If you dropped AHIs from 6.x to 0.6, you're there!
I, too, dreaded the machine for a while, but I now LOVE my machine and, quite frankly, look forward to bed time. It has become such a restful, peaceful time.
You say the charts are showing you snoring. That just shouldn't be happening. Do you suppose, the Quatro was leaking like crazy? Leaking so much that you were not getting effectual treatment? That can be almost like no treatment at all. That would explain all the snoring AND you waking feeling like crap.
I'm not sure of your background and need for the pills, but I can say if you hang in there, things will get better.

[John from Brookston]

John--
Wow!
If you dropped AHIs from 6.x to 0.6, you're there!
I, too, dreaded the machine for a while, but I now LOVE my machine and, quite frankly, look forward to bed time. It has become such a restful, peaceful time.
You say the charts are showing you snoring. That just shouldn't be happening. Do you suppose, the Quatro was leaking like crazy? Leaking so much that you were not getting effectual treatment? That can be almost like no treatment at all. That would explain all the snoring AND you waking feeling like crap.
I'm not sure of your background and need for the pills, but I can say if you hang in there, things will get better.

My experience is that the nasal mask gives me an AHI of less than 2 most nights while the Mirage never goes under 3.
I don't think the Quattro is leaking. the leak line is fairly flat and averages 42 for a mask that flows 52 L/M at my pressure. I finally tamed that beast and it doesn't pooft, squeek, or fart anymore. yet the snore index was 141.1 at 19 cm/H2O. I used the True Blue last night and while leakage was up and down, it stayed out of the large zone and averaged 56.0 (all these measurements are with Encore Basic) for a mask with a 37 L/M flow rate. The snore index was 1.2
I'm surprised that I can snore under forced draft, too. I thought PAP fixed that problem. I need to research just exactly how a System One detects snoring. In the lab, they strapped a microphone to my throat. Maybe it's "false snoring"?

That first month, after the first 4 days, I was eager to go to bed, and I'd wake up in a kind of rather pleasant gauzy warmth unaware of the mask or the pressure. I'm trying to work my way back to that point.

[kaiasgram]

That first month, after the first 4 days, I was eager to go to bed, and I'd wake up in a kind of rather pleasant gauzy warmth unaware of the mask or the pressure. I'm trying to work my way back to that point.

I have no doubt you'll get back there John. I can't believe you were able to do that middle-of-the-night analysis of your data to date and identify some specific variables. Nope, no doubt you'll get back to the pleasant gauzy warmth!