Newbie Looking For Info, and Motivation

[sleepygary314]

Hi guys -

I'm new, but have been reading threads from this forum for a while. I have my sleep study tomorrow, which I'm almost sure will confirm sleep apnea. Not sure if it is obstructive, central, or both yet, but usually my nights go like this: (let me know if this sounds like any of you)

I start to drift to sleep, and right as I do, my body wakes me up, it's like an internal alert system forces me out of my sleep. On occasion, I can feel a heart flutter and may catch myself having to take a breath. Daytime symtpoms are brain fog, sleepiness, depression/anxiety symptoms. If I do get to sleep, Im usually waking up multiple times per night (which I remember doing before the "alarm system" feeling). My doctor examined my throat and within one quick look said I have a narrow throat, which is likely relaxing to the point of cutting off my airflow. He ordered the sleep study, but confirmed (more or less) that I will need CPAP. Kind of a bummer since Im only 26, but so is not sleeping, so Im not gonna whine too much about that part.

However, I would like to get some early tips on using CPAP so that I can be as prepared as possible for the first night. Are there any questions I should ask about CPAP at the study? Are there any things you discussed or wished you discussed with your doctor regarding CPAP that I may want to bring up? Anything I can do to make this a smooth transition is gonna be useful for me, since I havent had restful sleep in about a month.

Lastly, if anyone is willing, share some success stories with me! I know I cant necessarily expect the exact same experience as anyone else, but reading some success stories with this would really help get/keep me motivated.

Thanks for reading!

[carbonman]

Zen of the Mask
Recovery/Rebirth
Postby carbonman on Sun Jul 19, 2009 3:51 pm

Zen-direct experiential realizations toward obtaining an awakening.
The practice to discover, through daily, or in this case, nightly,
experiences that will lead one to ultimate enlightment.

All things are brought to each of us, for a reason.
Why OSA???

In OSA therapy, the mask, is everything.

recovery
a regaining of something lost or stolen

rebirth
regeneration of something destroyed: the regeneration of something that has died or has been destroyed

Hard exercise does not build strength and endurance.
Hard exercise tears the muscle down.
Proper nutrition and rest build strength and endurance.

Silently, alone in the dark of the night, from deep in the abyss of my brain,it seeps out.
Quietly it flows throughout my body and I am recovered and
reborn.
HGH-human growth hormone. Secreted from the pituitary gland during REM sleep.

From the 5th morning, after 5 of the most horrific nights of my life,
I felt the first stirrings of the recovery/rebirth. I had just lived through the first
5 nights of cpap therapy.....and survived.
It wasn't much. Just a slight easing of the pain in my legs as I walked up the stairs at my work.
It was enough to convince me to keep trying.

8 days ago, ~2 miles from the summit of Vail pass, my rebirth was complete.
My mind, firmly in control. My body, begging to stop this madness.
Mind dictating to body, you're fine.
Today is our day.
Today we are reborn.
Today, through cpap, we are recovered.
In retrospect, the strongest ride of my life.

So, 1yr after starting cpap,
at the tender age of 58,
I am reborn.
What was stolen from me for years, has been found.
What was dying, has been rebuilt.

With every night of cpap, the horizon continues to stretch farther away,
the boundaries of my limits continue to expand.

Yin/Yang of life-
MY choice to embrace or reject, the mask, and in so doing,
chose quality of life.

I have chosen quality of life.

[Soothest Sleep]

Hi, Gary,

I can't help with info on the sleep lab study, as mine was a home study, but others will come along who have had the lab experience.

I can point you to a thread with success stories,though. On the Board Index page, look in the section at the top ("Announcements"); I think it's the last thread in the box.

Don't expect instant change with your treatment (although it's been known to happen, I hear); it's a process, as you learn about your equipment, comfort needs, new sensations, and your reactions to all of that. Take it one day at a time, one issue at a time; and come to the forum with specific questions so advice and comments can be directed to your need.

When you know what your equipment is, you can update your User Profile (click on User Control Panel, top left of the forum pages; then, Profile; then, Edit Equipment) to display that information automatically with your posts. The experts around here need to know. . .

Welcome to the forum,
Jean

[Pugsy]

Lots of success stories.
In the Announcement section of the main page is this thread filled with them.
42 pages over many years
viewtopic/t14494/Newbie-would-like-to-h ... lease.html

During your actual sleep study I don't know if the sleep tech will be much help in a discussion about cpap. It may depend on if your doctor ordered a split night study where if you meet criteria for sleep apnea diagnosis within a certain time frame they may stop the study and put a mask on you and attempt to find a suitable pressure. Not everyone will meet criteria though or end up with enough time (if they finally do meet criteria) to do the titration with the cpap and mask. If a split study is ordered the tech will likely try to fit you initially before you ever start with a mask...just in case.
I didn't meet criteria soon enough to have enough time to do the titration so I had to come back for the titration study and my OSA is classified as severe.

By law the sleep tech isn't allowed to actually discuss your results but sometimes they sneak a few hints in.
In my case the tech just said..."you didn't meet criteria soon enough but don't be surprised if you get to come back" and winked at me.

How to make cpap a success???? Keep and open mind and don't let a few bumps in the road deter you should you end up needing the mask and machine.
We all have a few bumps in the road...even now I will have some occasionally and it's been over 8 years. Not nearly as many as I had in the beginning though and there isn't a problem that you can have that hasn't already been had by someone somewhere and there's a fix available.

[sleepygary314]

Zen of the Mask
Recovery/Rebirth
Postby carbonman on Sun Jul 19, 2009 3:51 pm

Zen-direct experiential realizations toward obtaining an awakening.
The practice to discover, through daily, or in this case, nightly,
experiences that will lead one to ultimate enlightment.

All things are brought to each of us, for a reason.
Why OSA???

In OSA therapy, the mask, is everything.

recovery
a regaining of something lost or stolen

rebirth
regeneration of something destroyed: the regeneration of something that has died or has been destroyed

Hard exercise does not build strength and endurance.
Hard exercise tears the muscle down.
Proper nutrition and rest build strength and endurance.

Silently, alone in the dark of the night, from deep in the abyss of my brain,it seeps out.
Quietly it flows throughout my body and I am recovered and
reborn.
HGH-human growth hormone. Secreted from the pituitary gland during REM sleep.

From the 5th morning, after 5 of the most horrific nights of my life,
I felt the first stirrings of the recovery/rebirth. I had just lived through the first
5 nights of cpap therapy.....and survived.
It wasn't much. Just a slight easing of the pain in my legs as I walked up the stairs at my work.
It was enough to convince me to keep trying.

8 days ago, ~2 miles from the summit of Vail pass, my rebirth was complete.
My mind, firmly in control. My body, begging to stop this madness.
Mind dictating to body, you're fine.
Today is our day.
Today we are reborn.
Today, through cpap, we are recovered.
In retrospect, the strongest ride of my life.

So, 1yr after starting cpap,
at the tender age of 58,
I am reborn.
What was stolen from me for years, has been found.
What was dying, has been rebuilt.

With every night of cpap, the horizon continues to stretch farther away,
the boundaries of my limits continue to expand.

Yin/Yang of life-
MY choice to embrace or reject, the mask, and in so doing,
chose quality of life.

I have chosen quality of life.

took me a while to get this (I didnt sleep much last night so Im tired. go figure.) but I see what you're saying. Im actually kinda looking forward to cpap.

[sleepygary314]

Hi, Gary,

I can't help with info on the sleep lab study, as mine was a home study, but others will come along who have had the lab experience.

I can point you to a thread with success stories,though. On the Board Index page, look in the section at the top ("Announcements"); I think it's the last thread in the box.

Don't expect instant change with your treatment (although it's been known to happen, I hear); it's a process, as you learn about your equipment, comfort needs, new sensations, and your reactions to all of that. Take it one day at a time, one issue at a time; and come to the forum with specific questions so advice and comments can be directed to your need.

When you know what your equipment is, you can update your User Profile (click on User Control Panel, top left of the forum pages; then, Profile; then, Edit Equipment) to display that information automatically with your posts. The experts around here need to know. . .

Welcome to the forum,
Jean

Thanks for the welcome! Yeah, from what I've seen here, uploading your machine/mask models and specs seems pretty important.That'll be the first thing I do.

[sleepygary314]

Lots of success stories.
In the Announcement section of the main page is this thread filled with them.
42 pages over many years
viewtopic/t14494/Newbie-would-like-to-h ... lease.html

During your actual sleep study I don't know if the sleep tech will be much help in a discussion about cpap. It may depend on if your doctor ordered a split night study where if you meet criteria for sleep apnea diagnosis within a certain time frame they may stop the study and put a mask on you and attempt to find a suitable pressure. Not everyone will meet criteria though or end up with enough time (if they finally do meet criteria) to do the titration with the cpap and mask. If a split study is ordered the tech will likely try to fit you initially before you ever start with a mask...just in case.
I didn't meet criteria soon enough to have enough time to do the titration so I had to come back for the titration study and my OSA is classified as severe.

By law the sleep tech isn't allowed to actually discuss your results but sometimes they sneak a few hints in.
In my case the tech just said..."you didn't meet criteria soon enough but don't be surprised if you get to come back" and winked at me.

How to make cpap a success???? Keep and open mind and don't let a few bumps in the road deter you should you end up needing the mask and machine.
We all have a few bumps in the road...even now I will have some occasionally and it's been over 8 years. Not nearly as many as I had in the beginning though and there isn't a problem that you can have that hasn't already been had by someone somewhere and there's a fix available.

Hi Pugsy

I spoke with the receptionist at the sleep lab and have indeed confirmed that I'll be doing the split-night study. They're trying to get me to REM 2 to monitor me, and said they'd wake me and have me use the mask most likely. So hopefully, I'll be able to do a bit of test driving that night with pressure and equipment. I also found out that my sleep study date is the 10th, which means another week of bad sleep, if any. Before you guys got your CPAP, did you find anything useful to help you sleep? I currently lay on my side with my head elevated and that kinda helps, but the more tips, the better.

[Pugsy]

Sleeping elevated and/or on you side is pretty much all you can do right now. Lessens the effect of gravity trying to make things sag worse.
I suppose you could also try a soft cervical collar but I don't know how much it might help and it can be super annoying for some people. They are relatively cheap at the local pharmacy or WalMart even. I personally don't like them but a lot of people do well with them.
The cervical collar helps hold the neck (and thus the airway) in a more "open" position so that you can't scrunch it down so much. Think how they tell us to position the head/neck when doing cpr to open the airway as much as possible.

REM is where OSA tends to be worse in a lot of people (myself included) along with sleeping on one's back. The reason I didn't meet criteria initially was because I didn't get enough REM to start with and when I finally did there wasn't enough time to do the titration. Every time I would slip into REM the apnea events would come fast and furious and I would bounce right back out of REM and not have enough during the short period in REM to meet criteria (different labs can have slightly different criteria).

The waiting is frustrating but it's something we deal with. Don't have much choice.

[Bertha deBlues]

Hi Gary. You have the right attitude, and that counts for a lot. I've been on PAP therapy for 1.5 years, and can only share my experiences. The first few weeks were not easy. I had to get used to the feel of the mask, to the (quiet, but still noticeable) sound of the machine, to my new reality, but I was determined to make it work. Having found this forum, you're way ahead of where I was at the start. I was several months into therapy before it occurred to me that maybe help could be found out there on the web.

The feeling of waking up feeling like you actually got a good night's sleep is a huge motivator. The more "normal" mornings you have, the more you want. My machine (Dreamstation Auto) and mask (Nuance nasal pillows) have become like old friends. I no longer dread masking up at night because I know it will be worth it.

Best of luck to you with your sleep test and your therapy.

[Bertha deBlues]

I forgot to add that it has eased my husband's mind. He's the reason I got tested and started therapy, because it scared him to hear me struggling to breathe, then stopping altogether, then gasping for air. It's a win-win at our house.

[dbreweur]

I'm 26 too (will be 27 in just 15 days) so I get that it's not ideal to be saddled with a CPAP for (potentially) the rest of your life - but the long term complications of not treating sleep apnea are way worse.

However, I would like to get some early tips on using CPAP so that I can be as prepared as possible for the first night. Are there any questions I should ask about CPAP at the study? Are there any things you discussed or wished you discussed with your doctor regarding CPAP that I may want to bring up? Anything I can do to make this a smooth transition is gonna be useful for me, since I havent had restful sleep in about a month.

Before you go, I'd ask about bringing your own pillows or blanket. I didn't do this the first time, as I was assured the provided bedding and pillows - but they ended up only giving me one pillow and the blanket was super scratchy; I didn't make that same mistake the second time.

Since you're having the split night study, I'd ask the sleep lab tech if they can fit you for a mask before you fall asleep; It makes it a lot easier when they wake you up halfway through the night if the thing is already fitted properly for your head. (Mine gave me a choice between nasal cushion or a nasal mask that covered my nose with a headband thing to keep my mouth closed as I am a mouth breather. Your lab might even have full face masks available, if needed)

Once you get a machine, it's good to get into a routine of emptying out the humidifier 'tank' in the morning, rinsing the mask cushion off (or cleaning it, if it's due for that) and then filling the humidifier tank before you get into bed for the night (again, that's IF you use a humidifier; Some people don't, it's really a matter of preference, I think)

[RicaLynn]

Hi Gary, and welcome!
I'm a firm believer that knowledge is power, so you're in the right place for that. Some very knowledgeable folks here will be able to help you along your way as they did me three years ago (but beware a couple notable crackpots).

Like you, I went into my sleep study assured that it would only confirm what I already knew -- I had been informed of my disordered breathing by friends, family, lovers, and both my parents had sleep apnea. My father's was incredibly severe and he benefited greatly from CPAP treatment, so I looked forward to similar results once I was diagnosed and received my equipment.

In the interim I began educating myself on the ins and outs of PAP treatment, and researching machines and masks, tips and tricks. I was fortunate to be sent to a DME and deal with a tech who was also a PAPer, so he was wonderful at answering my questions and setting my mind at ease.

Truthfully, my greatest difficulty wasn't adjusting to the airflow, but instead conditioning my skin to deal with the mask. It required a bit of tlc and some adjustments over the first couple weeks, but the good folks here talked me through it and by day 14 I was set and I have been happily using my machine almost nightly for three years this month. My ten year old will definitely let me know if I forget -- my snoring wakes her in the next room!

Welcome again, and good luck on your study!

[carbonman]

but I see what you're saying. Im actually kinda looking forward to cpap.

It's my life.
It's your life.

I'll see you on the road.

[kteague]

Yeah, from what I've seen here, uploading your machine/mask models and specs seems pretty important.That'll be the first thing I do.

Yeah, having that info in your profile, preferably in the text option, saves those you are asking for help from trying to figure out with every post how to give you specific info you can use. As time passes and multiple threads/topics unfold, even if you've said it before, it might not be in a current thread. Having equipment posted respects the time of those trying to be helpful, and keeps us from annoying you with asking you the same question over and over. Good luck with everything going forward.

[sleepygary314]

Hey guys! Thanks for all the welcomes and advice. Sadly, my study isnt until the 10th. Sleeping on my sides and propped up has helped some, but I still am not gettimg quality sleep, still lagging in the mornings, etc. The wakes feel like they are coming from my brain, which scares me that maybe I have central apnea, which is usually accompanied by some neurological problem. I really hope its just OSA, but man, that rush my brain gets to wake me up. Any OSA or CSA peiole experienxe that