Newbie in up to his neck, throw me a line (of advice)

[Pugsy]

I don't really like having to use it either but I have done it for over 9 years.

I like it better than the alternative.

Yep, much better than the alternative.
Let's see the "mild alternatives"
Killer morning headaches from low oxygen.
Getting up to pee every hour on the hour with a painfully full bladder.
Tons of wake ups.
No deep sleep because of the wake ups and screwed up sleep cycles.
Horrible fatigue from lack of sleep.

The "serious" alternatives.
Stroke or heart attack and comes up short and leaves me a vegetable. I fear that worse than I fear death.

It's a good thing I like lemonade.

But it won't ever stop me from trying to make the lemonade taste better.

[palerider]

But it won't ever stop me from trying to make the lemonade taste better.

That's a fine goal, if I do say so myself

[DreamDiver]

I don't really like having to use it either but I have done it for over 9 years.

I like it better than the alternative.

[OfftoNeverNeverland]

Dear Pugsy/Palerider/Dreamdiver/Julie (The Mt Rushmore's of this Blog (sorry for any unintended omissions)):

I had an unexpected but most welcome outcome last evening as I did not have any OAs or CA's just something like a RERA (0.0 AHI). I am not certain how I hit upon this result but the sleep itself was solid. FWIW; I have been consuming powdered beet water (juice) at dinner (something like Super Beets) as it is supposed to help with oxygenation and relaxing sympathetic musculature (lower BP etc.). I am not certain if there is any relation but it will be interesting to see if positive results (below 1.0 AHI) can continue. I have had several nights below AHI 1.0 since raising my EPAP to 7.0 cm/H2O so I know it is possible. Perhaps someone else can try the powdered beet juice as well and see if it helps them (far too early for me to say there is any significance). As a glimpse into the mindset of this whole CPAP medical tragi-comedy, I had to reschedule my first "compliance" meeting with my RT due to the need to meet with a separate medical surgical provider on an unrelated serious issue (hard to schedule). The sleep office wanted to know why I was rescheduling my compliance meeting (weeks away) as though I was hiding something. I was tempted to say that "I need to get around to start using my CPAP since I first received it back in December 2018 but I think I misplaced it in the garage or somewhere and I want to try to cram in as much compliance the last few days before our rescheduled first meeting." I think they (sleep medical providers, DME, Sleep Coach, Insurance) are horked because I had removed my cellular modem from the device weeks ago and changed a number of therapy setting to help myself lower my AHI's, as my prescription settings (4cm/H2O EPAP) had me at 12-13 AHI's. Anyway, with the confidence that this blog has given me, I am not afraid to adjust my pressure settings despite dire warnings that no one is allowed to change their prescribed settings ever (cue mental image of the Wizard of Oz behind the screen barking out to Dorothy and crew that "Nooo one is allowed to see the great Wizard!!"). I do feel much better since starting this therapy (100% compliant (>4hrs per night) each and every night since Day 1 for 45 straight days now. I urge those who are really struggling to follow the sagely advice of those addressees above (and any others who I may have omitted) as they really know their stuff and it is clear they do care about helping people (years of advice by them on this Blog). I also love the renegade attitude of those on this Blog who advocate changing prescribed settings if they are not working (and such attitude convinced me to chuck the secret CPAP cellular modem spy device into the closet as the monitoring by an assigned (but unwanted) sleep coach by Philips was really bothering me and I likely would have stopped therapy totally if I could not curtail the surveillance.

Best,
OTNNL

[Midwest_non_sleeper]

Wooo!

Congrats on that first big fat ZERO across the board. Nicely done.

[palerider]

First, paragraphs, they're a thing now!

I think they (sleep medical providers, DME, Sleep Coach, Insurance) are horked because I had removed my cellular modem from the device weeks ago and changed a number of therapy setting to help myself lower my AHI's, as my prescription settings (4cm/H2O EPAP) had me at 12-13 AHI's.

Anyway, with the confidence that this blog has given me, I am not afraid to adjust my pressure settings despite dire warnings that no one is allowed to change their prescribed settings ever (cue mental image of the Wizard of Oz behind the screen barking out to Dorothy and crew that "Nooo one is allowed to see the great Wizard!!").

TECHNICALLY, THEY aren't allowed to change your settings without a doctors orders... they frequently forget about the fact that that restriction doesn't apply to the patients themselves.

I do feel much better since starting this therapy (100% compliant (>4hrs per night) each and every night since Day 1 for 45 straight days now.

Hopefully you're 'just using the machine all night, every night', and not worrying about the stupid "compliance" amounts... (4 hours isn't enough time to do anything but satisfy the insurance company)... but I think you know that.

I also love the renegade attitude of those on this Blog who advocate changing prescribed settings if they are not working (and such attitude convinced me to chuck the secret CPAP cellular modem spy device into the closet as the monitoring by an assigned (but unwanted) sleep coach by Philips was really bothering me and I likely would have stopped therapy totally if I could not curtail the surveillance.

Success stories like this are what makes the time and effort I spend answering questions here worthwhile.

Thanks for checking in.

[marceltcm]

I don't really like having to use it either but I have done it for over 9 years.

I like it better than the alternative.

Yep, much better than the alternative.
Let's see the "mild alternatives"
Killer morning headaches from low oxygen.
Getting up to pee every hour on the hour with a painfully full bladder.
Tons of wake ups.
No deep sleep because of the wake ups and screwed up sleep cycles.
Horrible fatigue from lack of sleep.

The "serious" alternatives.
Stroke or heart attack and comes up short and leaves me a vegetable. I fear that worse than I fear death.

It's a good thing I like lemonade.

But it won't ever stop me from trying to make the lemonade taste better.

Those serious things are really about to happen?
I am 30 and was diagnosed with severe apnea in one exam and by having no apnea on other, so I don't know what to do right now.
I'm really bad, when I visit the forum I think that there is too much information to handle.
Also, it's possible to buy a CPAP machine and adjust it on my own? I saw you guys talking about compliances and prohibitions to adjuste the parameters and I think why in the hell that should be prohibited?
It's easy to set the parameters myself, to find the right pressure and so the other things? For that I should use an Autoset machine, right?
Sorry by all that, I'm really lost

[palerider]

The "serious" alternatives.
Stroke or heart attack and comes up short and leaves me a vegetable. I fear that worse than I fear death.

Those serious things are really about to happen?

Yes.

Also, it's possible to buy a CPAP machine and adjust it on my own?

I did.

[DavidY]

I don't really like having to use it either but I have done it for over 9 years.

I like it better than the alternative.

Yep, much better than the alternative.
Let's see the "mild alternatives"
Killer morning headaches from low oxygen.
Getting up to pee every hour on the hour with a painfully full bladder.
Tons of wake ups.
No deep sleep because of the wake ups and screwed up sleep cycles.
Horrible fatigue from lack of sleep.

The "serious" alternatives.
Stroke or heart attack and comes up short and leaves me a vegetable. I fear that worse than I fear death.

It's a good thing I like lemonade.

But it won't ever stop me from trying to make the lemonade taste better.

Those serious things are really about to happen?
I am 30 and was diagnosed with severe apnea in one exam and by having no apnea on other, so I don't know what to do right now.
I'm really bad, when I visit the forum I think that there is too much information to handle.
Also, it's possible to buy a CPAP machine and adjust it on my own? I saw you guys talking about compliances and prohibitions to adjuste the parameters and I think why in the hell that should be prohibited?
It's easy to set the parameters myself, to find the right pressure and so the other things? For that I should use an Autoset machine, right?
Sorry by all that, I'm really lost

It is much better that you got diagnosed for sleep apnea early.

I didn't get diagnosed until about a year ago...snored in my teens...OSA not diagnosed for probably as much as 35-40 years. I remember my dad snored and stopped breathing when he slept...but he wasn't diagnosed either.

Started my CPAP in Feb 2018. Bought my backup unit in May 2018. Didn't start my CPAP treatment early enough I guess....got a myocardial infarction in July 2018.

Dave