Length of time using mask at night

[John from Brookston]

Thenks everybody. My pressure is at 17 and I try to think I'm on an ocean cruise (not the Carnival) with the sea breeze coming in but it ends up feeling like a dog with his head out a car window. The ramp time is 45 minutes so hopefully I can fall asleep in that time.

Actually, you want the pressure to ramp up before you fall asleep. If it doesn't, then when you first fall asleep, you won't have effective therapy. And if you go straight to REM, as some sleep-deprived people will do, you'll either have clusters of events or you'll wake up because you can't breathe. Ultimately, you're probably better off without the ramp, but if the pressure is too intimidating at first, you can use the ramp to keep from freaking out while you get relaxed. Try shortening it, though. Eventually, you'll probably want to turn it off completely. Believe it or not, you will get used to this.

Took me about 3 weeks, but I've been off the ramp since Wednesday. I actually feel like I'm not getting enough air (ramp starts at 13, my full pressure is 19/13 BiPAP.) I have been getting about 6 hours of sleep every night, all with the mask on.

[Otter]

Otter I wasn't attacking you.
I was only pointing out that there perhaps your statement

But don't most people get used to their therapeutic pressure eventually, even if it's high?

wasn't/isn't something that happens all the time.

I never said it was. Most is not all. But most is reason for hope.

We were having two completely different conversations here.

Eventually, you'll probably want to turn it off completely. Believe it or not, you will get used to this.

That is not, "Get used to it, Buttercup!" Because I didn't know them, I was not considering all the details of her setup. "This" is CPAP in general. I meant that she would get used to sleeping blown, not that she was a wimp if she couldn't adapt to the first blower she was given. From my perspective, I said,

Mamie, you'll get used to CPAP and survive. It's going to be okay.

But you heard,

Suck it up, Buttercup!

Then you said,

At a 17 cm starting pressure...that's going to take a lot of getting used to. Those of you who think all you have to do is set your mind to it and "get used to it"... crank your machine up to 17 and see what it feels like. It isn't easy at all.

Meaning,

Give her a break, this isn't easy.

But I heard,

With that high pressure, her odds aren't so good. She might be one of the ones who can't manage CPAP. She may die a miserable death before her time.

I know now that's not what you meant, but given that you were refuting my statement above, this didn't seem like a positive comment. It did seem very unlike you, but not knowing what you thought I had said (and being seriously underslept), I had no idea what you actually meant. I was at a loss for words, but it seemed necessary to say something.

How could I respond to that level of gloom in a newbie's thread? From where I was standing, you might as well have said, "Grim Reaper's gonna GET you, girl!" Eventually, hoping to give you space to clarify, I came up with,

But don't most people get used to their therapeutic pressure eventually, even if it's high?

But don't most people here survive?

I have no statistics, but I believe that for people on this forum, the odds are well over 50%. Here we have support that people working only with their doctors and DMEs usually don't get.
You heard something like,

If you can't do it, you're not trying. Only wimps fail at this.

I probably should have been more explicit about which people I meant, but at this point, I'm not sure it would have made any difference to our misunderstanding. We were not even in the same library, much less on the same page.

The rest of my statement was general information so that everyone could maybe understand that "most" people is not necessarily the best adjective and I went on to share some personal experience why sometimes "most" people can't manage what "most" of us take for granted.

If you feel I was personally attacking you...no..that was not my intent and if I have that impression then I apologize.

It seemed you were attacking what you thought I said. That was no where near where I'm actually coming from, and as it's not me, I'm not not taking it personally. But this sort of thing is a big part of why I haven't been around as much. Get a few hundred sleep-deprived people on a message board, and misunderstandings are bound to happen. Perhaps that's unavoidable, but I really don't have the energy for it.

I just get so tired of the "suck it up buttercup" and "if you try harder you can make it work" and "most people manage....." when someone is having a problem that sometimes I can't stay off the soap box.

I never said anything remotely like that. You obviously took my words that way, though, and sought to "correct" me. I believe your intent was pure. I'd have deserved that if I'd told Mamie, "Suck it up, buttercup." And she would obviously deserve to have someone come to her defense. But in fact, I was pointing out a potential pitfall to avoid and offering encouragement.

In an ideal world yeah...they get used to it but it is far from an ideal world.
In reality no, people don't always get used to high pressures.

This is the part I wished to address to you....the rest of it was to the whole world in general.

No, I think you were venting your frustration at me for things that other people have said and done. Most if not all of both posts was clearly directed to me, or the person you thought I was.

That you would think I would tell Mamie to "suck it up" does sting a bit. I thought we knew each other better than that, but maybe not, and I haven't been around very much lately.

I'm concerned that we're jacking Mamie's thread. Let's take this to PM if there is much more, or perhaps start a new thread if you think it would be of concern to anyone but us. Please don't be offended if it takes me a long time to respond, though. I am very, very tired.

[Otter]

Took me about 3 weeks, but I've been off the ramp since Wednesday. I actually feel like I'm not getting enough air (ramp starts at 13, my full pressure is 19/13 BiPAP.) I have been getting about 6 hours of sleep every night, all with the mask on.

Wonderful! Did you change the ramp setting gradually or just do away with it altogether once you got used to your machine?

[Pugsy]

I'm concerned that we're jacking Mamie's thread. Let's take this to PM if there is much more, or perhaps start a new thread if you think it would be of concern to anyone but us. Please don't be offended if it takes me a long time to respond, though. I am very, very tired.

How about we just drop it?

I have edited my prior comments....nothing at all directed to you....my comments are for anyone in general. If the shoe fits wear it.
This is the only post I want you to think is directed to you ....okay? This one right here where I quoted you.

I know you mean well...and you know I mean well...I was NOT attacking you....I was just venting frustrations in general and you heard a lot of stuff as being directed to you that was NOT directed to you.
It is extremely hard to convey all our feelings and thoughts and inferences in a few words.
So now I feel that you have attacked me....Picked apart every little thing I said as if I had said "Otter said" this and Otter said that...when I didn't

Let's just drop it.
I just had one of those days where pent up frustrations spilled over...it wasn't at you. Yes one comment you made did trigger it but the whole tirade., the soap box rant wasn't at you but at the whole world in general...
Though now I do feel like you did attack me and you made specific quotes......and inferred that I was inferring stuff that I wasn't.
I don't want to talk to you privately...maybe later but right now I am too angry.

[ughwhatname]

Don't know if this is helpful to either of you, but as a third party observer, I read each of the original posts as I believe they were intended. I didn't see an attack by Pugsy, but saw her responding to a comment made and then elaborating on it for the benefit of other readers.

Dropping it is probably the best course of action.



Mamie, I hope you can use some of this advice to go back to your sleep doctor and get some additional help. "That's better than nothing" while not discouraging, certainly isn't encouraging or helpful. My pressure tops out at 14, so I can't even imagine what 19 feels like.

[chunkyfrog]

As you can see, Mamie, you are not alone.
Some of us get in the groove with patience and a fairly short time.
For some the struggle continues; but it is still worth it.
We know that what we do has an effect on our health and our loved ones.
Sorry we got off on a little tangent here. It shows how much we care.