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I never forgot my first time...
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mxw51 Offline

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Location: USA

Post: #1
I never forgot my first time...
I recently celebrated my first anniversary with my CPAP . Over the last year, none had the results of my first night at the 'CPAP titration.' Despite being hooked up to all of those wires and the technician telling me that I woke up three hours only, I felt great. Think Leonardo DiCaprio on the bow of the Titanic. That day was the most productive, energetic day in years.

In the month and a half I waited for my DME to deliver my device, I was giddy, anticipating more days like that. However, my first night was horrible as I started getting used to the mask. In fact, I joined Apena Board to figure out why it 'wasn't working.' Thanks to you, I learned patience and how to get my ffm to fit without leaking (many thanks).

I know the CPAP is helping me sleep better. I just can't seem to get that first time feeling back. I spoke with my doctor about it and he shrugged it off and suggested I consider 'alertness medications.'

Has anyone had the same experience? Any ideas on ways to take it to the next level?

Thanks to everyone who participates (and administers) this board.
07-27-2014 08:24 AM
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retired_guy Offline

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Post: #2
RE: I never forgot my first time...
What's your "stats" these days? You know, ahi, leak numbers, avg pressure, blah blah blah... That sort of stuff.

One of the things we've been focusing on a bit lately is "flow limit." Seems everything else can appear nice, but if we're still having flow limit that's a quart (think liter here) too high, then we might not be as rested as possible.
07-27-2014 12:00 PM
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NickDanger Offline

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Post: #3
RE: I never forgot my first time...
Way to stick with it, MX!
07-27-2014 05:26 PM
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Stargazer Offline

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Post: #4
RE: I never forgot my first time...
(07-27-2014 12:00 PM)retired_guy Wrote:  One of the things we've been focusing on a bit lately is "flow limit." Seems everything else can appear nice, but if we're still having flow limit that's a quart (think liter here) too high, then we might not be as rested as possible.

Would love to read more info on "flow limitation." Any links that you know of to further explain the implications? Very interested in this topic!

A good laugh and a long sleep are the best cures....
07-28-2014 06:51 PM
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zonk Offline

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Post: #5
RE: I never forgot my first time...
(07-28-2014 06:51 PM)Stargazer Wrote:  Would love to read more info on "flow limitation." Any links that you know of to further explain the implications? Very interested in this topic!
Sleep disordered breathing (SDB)
http://www.apneaboard.com/wiki/index.php..._%28SDB%29

What is flow limitation?
http://www.resmed.com/au/clinicians/comp...clinicians
07-28-2014 10:29 PM
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Doc J Offline

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Post: #6
RE: I never forgot my first time...
Like a junkie chasing the feeling of the first time. Sorry you can't find that feeling again. I don't know if it is a mental thing of expectation or what. You should be able to get some good sleep, keep working on it. Not sure about that great feeling though. I would skip the alertness drugs also or you will never get to sleep. This is the place to find help you are right there.

Good Luck!

Doc J (despite my nickname I am not a doctor)

Remember to donate to the board if you can, it has helped a lot of people including myself.
07-28-2014 11:07 PM
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Terry Offline

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Post: #7
RE: I never forgot my first time...
(07-27-2014 08:24 AM)mxw51 Wrote:  I recently celebrated my first anniversary with my CPAP . Over the last year, none had the results of my first night at the 'CPAP titration.' Despite being hooked up to all of those wires and the technician telling me that I woke up three hours only, I felt great. Think Leonardo DiCaprio on the bow of the Titanic. That day was the most productive, energetic day in years.

Congrats! It will come back, but only if you make it come back. I'm guessing it was because you had a sleep tech watching you all night, making sure nothing bad happened. If you don't change anything, nothing will change.

(07-27-2014 08:24 AM)mxw51 Wrote:  In the month and a half I waited for my DME to deliver my device, I was giddy, anticipating more days like that. However, my first night was horrible as I started getting used to the mask. In fact, I joined Apena Board to figure out why it 'wasn't working.' Thanks to you, I learned patience and how to get my ffm to fit without leaking (many thanks).

I know the CPAP is helping me sleep better. I just can't seem to get that first time feeling back. I spoke with my doctor about it and he shrugged it off and suggested I consider 'alertness medications.'

Once your condition has been named and the doc has been paid for the diagnosis and the DME sold some equipment, they lose interest pretty quickly.

The good part is that you found this board, which has been a huge help to me. Nobody is more interested in you feeling great, than you.

(07-27-2014 08:24 AM)mxw51 Wrote:  Has anyone had the same experience? Any ideas on ways to take it to the next level?

Pretty much everybody.

I stumbled on to a really nice doc, but almost everybody I know on CPAP has about the same story that you do.

Getting everything tuned and working and getting you feeling good and keeping it that way is very important, but apparently not very profitable.

Stick around, you'll get everything working right!

Terry
(This post was last modified: 07-29-2014 09:22 AM by Terry.)
07-29-2014 09:13 AM
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PsychoMike Offline

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Post: #8
RE: I never forgot my first time...
I find getting back to the first "wow" feeling takes a bit. Once your body gets used to feeling better with treatment, it's harder to get back there. It may take a bit of trial and error, different masks, settings, pillows, sleep hygiene etc, but you can get back or close to it.

If you want it, you need to be proactive in your treatment...keep tabs on what makes you feel better in the morning and what doesn't, watch your data and so on.

Personally, I know I am doing better 18 months in, but I know I'm not hanging out at "wow" right now...but I know I can be close (once my new mask is here...even my wife commented during my demo).
07-29-2014 04:34 PM
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bwexler Offline

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Post: #9
RE: I never forgot my first time...
I think psycho Mike may have hit on it.
We go along feeling almost dead. Then we do the titration and feel not so bad. That is so much better than almost dead, we say WOW!
Then we wait and go back to almost dead. We get our equipment and fight leaks, masks that don't fit, settings that don't work, no tech watching us all night making all the right adjustments.
Then slowly we dial in the therapy with lots of help from everyone here. We start to feel a little better each day. The improvement is gradual over time. We don't notice we are now felling even better than that first night. There us now WOW! This just becomes the new normal. Even if we are now jumping tall buildings in a single bound, we don't realize it is better than almost dead.
We can't go from bad to great in one night again, and that is the illusive feeling we are looking for.
07-29-2014 08:21 PM
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PaytonA Offline
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Post: #10
RE: I never forgot my first time...
mxw51,

I so not know what the facility was like where you had your sleep test done. The facility where mine was done was in a small office building that looked more like a residence. The sleeping rooms were decorated to look like a bedroom. I believe that the air was very closely controlled. It was an extremely comfortable atmosphere. I was not cold in the room with my pajamas on and even though I slept with covers on I never felt too hot or raised a sweat.

What I am trying to get at is that my bedroom is not nearly as comfortably controlled as the facility where my sleep study was done. This may affect the results that you feel.

Best Regards,

PaytonA
07-29-2014 08:54 PM
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