Just got AHI (24), waiting on CPAP

Billymadison420 · Post by **Billymadison420** » Sun Jul 17, 2022 12:51 pm

zonker wrote: ↑
Sun Jul 17, 2022 11:14 am

Billymadison420 wrote: ↑
Sun Jul 17, 2022 10:34 am

ohhhhhh I know you are right. I just want to stop feeling this horrible so badly. I am a shell of the person I know I can be. I will get through today, again <3
you can do this. i have every confidence in you. you are asking questions, getting answers and then applying them. so many don't so it's encouraging to see you do it.

continued good luck!

I’m just worried that it’s not just apnea and it is indeed narcolepsy. But I have no way of knowing. Between the first and second doctor I am totally confused.

Pugsy · Post by **Pugsy** » Sun Jul 17, 2022 1:07 pm

Did you actually have a specific test for narcolepsy?
It cannot be diagnosed from a regular sleep study done during the night...it has to be a special and different sleep study usually done after the regular in lab sleep study is done during the night.
https://my.clevelandclinic.org/health/d ... narcolepsy

At any rate when the first sleep study done during the night doctors almost always will want to treat any OSA issues first and then decide if narcolepsy is maybe going on.
The reason being that the poor sleep from OSA itself and the apnea events causing poor sleep could cause someone to maybe have something that looks like a positive narcolepsy test simply because of the crappy sleep the night before.
OSA could potentially cause a false positive narcolepsy test result.

You treat the obvious first and then look at what might be left that might need to be dealt with.

zonker · Post by **zonker** » Sun Jul 17, 2022 1:23 pm

Billymadison420 wrote: ↑
Sun Jul 17, 2022 11:46 am

Thank you. That is very kind. I will keep at it. I will also keep working with my new Sleep (actual Sleep specialist and not just a pulmonologist) Doctor to try and figure this all out, as well.

Billymadison420 · Post by **Billymadison420** » Sun Jul 17, 2022 1:46 pm

Pugsy wrote: ↑
Sun Jul 17, 2022 1:07 pm
Did you actually have a specific test for narcolepsy?
It cannot be diagnosed from a regular sleep study done during the night...it has to be a special and different sleep study usually done after the regular in lab sleep study is done during the night.
https://my.clevelandclinic.org/health/d ... narcolepsy

At any rate when the first sleep study done during the night doctors almost always will want to treat any OSA issues first and then decide if narcolepsy is maybe going on.
The reason being that the poor sleep from OSA itself and the apnea events causing poor sleep could cause someone to maybe have something that looks like a positive narcolepsy test simply because of the crappy sleep the night before.
OSA could potentially cause a false positive narcolepsy test result.

You treat the obvious first and then look at what might be left that might need to be dealt with.

I did not have an MSLT which is needed to diagnose narcolepsy. But the pulmonologist. Told me I had it. He was pretty certain in the way he spoke. Of course the second doctor thought that was a crazy conclusion. I have lived the last year thinking I have narcolepsy. So it’s kind of hard to undo that thought I guess.

I am so tired today I can barely walk. Like, that’s not normal. It can’t just be sleep apnea right?

Pugsy · Post by **Pugsy** » Sun Jul 17, 2022 2:04 pm

Billymadison420 wrote: ↑
Sun Jul 17, 2022 1:46 pm
I am so tired today I can barely walk. Like, that’s not normal. It can’t just be sleep apnea right?

It's not just sleep apnea...it's totally crappy sleep quality in general as well.
Your flow rate was just chocked full of breathing where you weren't asleep.
You didn't get enough sleep and you for sure didn't get the cycles of sleep in the needed sleep stages for the restorative powers of sleep to work their magic.
You would feel like crap from such poor sleep even if you didn't have sleep apnea.

I have been there and done that and when I don't get enough sleep I have bone crushing fatigue. Sometimes so tired I can barely muster up enough energy to get up and go to the bathroom. I have been so tired that I go to sleep sitting totally upright and not even realize that I am sleepy.

Go get that bottle of nasty patience pills...and take 2 this time.

Everything you are going through you aren't alone in and many others have gone through the very same thing.
Let's worry about the known problem first and anything else gets put on the back burner for now.
Remember what I said....without sleep first....nothing else matters.

When first starting cpap therapy for your for sure known problem....sleep can be very elusive for any number of reasons.
Be it just the newness to this new way of adjusting to cpap mask and machine or just sleep problems in general or a dog with a tummy ache. It will pass....I promise...but it will take time and a bit of work on your part.
Nothing you are going through hasn't been gone through by many, many others in the past.

It will get better....I promise.
Will it always be perfect??? Hell no, nothing ever is. I have been on cpap for over 13 years and I still have bad nights but the bad nights aren't related to my OSA at all.
They are related to simply crappy sleep nights from other stuff messing with my sleep.

Billymadison420 · Post by **Billymadison420** » Sun Jul 17, 2022 2:20 pm

Pugsy wrote: ↑
Sun Jul 17, 2022 2:04 pm

Billymadison420 wrote: ↑
Sun Jul 17, 2022 1:46 pm
I am so tired today I can barely walk. Like, that’s not normal. It can’t just be sleep apnea right?
It's not just sleep apnea...it's totally crappy sleep quality in general as well.
Your flow rate was just chocked full of breathing where you weren't asleep.
You didn't get enough sleep and you for sure didn't get the cycles of sleep in the needed sleep stages for the restorative powers of sleep to work their magic.
You would feel like crap from such poor sleep even if you didn't have sleep apnea.

I have been there and done that and when I don't get enough sleep I have bone crushing fatigue. Sometimes so tired I can barely muster up enough energy to get up and go to the bathroom. I have been so tired that I go to sleep sitting totally upright and not even realize that I am sleepy.

Go get that bottle of nasty patience pills...and take 2 this time.

Everything you are going through you aren't alone in and many others have gone through the very same thing.
Let's worry about the known problem first and anything else gets put on the back burner for now.
Remember what I said....without sleep first....nothing else matters.

When first starting cpap therapy for your for sure known problem....sleep can be very elusive for any number of reasons.
Be it just the newness to this new way of adjusting to cpap mask and machine or just sleep problems in general or a dog with a tummy ache. It will pass....I promise...but it will take time and a bit of work on your part.
Nothing you are going through hasn't been gone through by many, many others in the past.

It will get better....I promise.
Will it always be perfect??? Hell no, nothing ever is. I have been on cpap for over 13 years and I still have bad nights but the bad nights aren't related to my OSA at all.
They are related to simply crappy sleep nights from other stuff messing with my sleep.

. Thank you. Buckling down and trying to be patient. You guys can probably already tell I’m a pistol

Pugsy · Post by **Pugsy** » Sun Jul 17, 2022 2:27 pm

I have lots of experience with "no patience" people.
My own husband's patience level is in the negative numbers.

This is a marathon....not a sprint.

zonker · Post by **zonker** » Sun Jul 17, 2022 2:34 pm

Billymadison420 wrote: ↑
Sun Jul 17, 2022 2:20 pm

. Thank you. Buckling down and trying to be patient. You guys can probably already tell I’m a pistol

let me underscore something pugsy mentioned. i've been on therapy for seven years now. and i'm just now coming to terms with good sleep/bad sleep. thursday night, i had one of the best sleeps i've ever had. (i wake up a LOT during the night.) that night, it was lights out at 11, woke at 6. then turned over and slept 7. then again until 8. HEAVEN! just what i want and so very rarely get.

last night, i had a HORRIBLE sleep. i ate way too much yesterday and the indigestion monster visited at 3 am and wiped out any chance of sleep. it was something i hope i never have happen again.

for you, just as it was for me at the beginning, you are noticing every little thing because you want so desperately to get that good sleep. and who can blame you? but as pugsy says, sometimes you have to shrug your shoulders and move on.

you can do this.

Billymadison420 · Post by **Billymadison420** » Sun Jul 17, 2022 3:06 pm

zonker wrote: ↑
Sun Jul 17, 2022 2:34 pm

Billymadison420 wrote: ↑
Sun Jul 17, 2022 2:20 pm

. Thank you. Buckling down and trying to be patient. You guys can probably already tell I’m a pistol
let me underscore something pugsy mentioned. i've been on therapy for seven years now. and i'm just now coming to terms with good sleep/bad sleep. thursday night, i had one of the best sleeps i've ever had. (i wake up a LOT during the night.) that night, it was lights out at 11, woke at 6. then turned over and slept 7. then again until 8. HEAVEN! just what i want and so very rarely get.

last night, i had a HORRIBLE sleep. i ate way too much yesterday and the indigestion monster visited at 3 am and wiped out any chance of sleep. it was something i hope i never have happen again.

for you, just as it was for me at the beginning, you are noticing every little thing because you want so desperately to get that good sleep. and who can blame you? but as pugsy says, sometimes you have to shrug your shoulders and move on.

you can do this.

Thank you!!! I’ll keep at it.

It’s possible that I have fall in love with a version of myself that maybe I will never get back. I was a morning person. I remember what it’s like to wake up at 7 AM after a completely dreamless sleep of nine hours and feel well rested and ready to go. But maybe that was when I was 15. And maybe I thought that was two years ago. Or maybe that’s when I was 24. Or maybe I imagined that too.

There are of course other factors like depression, my tinnitus, other things. So I need to be easy on myself. But I’m not very good at that. I just went out and bought myself some nice new shirts. That made me feel a little bit better for today

.

Question for you all. The respiratory therapist also said that I wouldn’t feel better right away because of sleep debt. Is that a real thing?

Pugsy · Post by **Pugsy** » Sun Jul 17, 2022 3:44 pm

Billymadison420 wrote: ↑
Sun Jul 17, 2022 3:06 pm
Question for you all. The respiratory therapist also said that I wouldn’t feel better right away because of sleep debt. Is that a real thing?

There is sleep debt but I have my doubts as to long it lasts and how much time it takes to "clear up the debt" because I am unsure just how long it really lasts ....and/or it could just be another one of those many things in life that comes with that YMMV sticker.

Short term....for sure there is sleep debt but I don't know that we can really "make up for years of prolonged sleep debt" as in it take a long, long time to pay it off.

A lot of times docs will blame sleep debt excuse just because they know people take a while to get used to cpap and start even remotely feeling the benefits. It's easier to blame the not so great feelings on sleep debt than it is to explain that it simply can take a bit of time to get used to all this and even remotely start feeling any good numbers we might see.

At any rate...you aren't even close to making up for any sleep debt you might have or had....you lost ground last night.

You can read up on "sleep debt" and form your own opinion and I am sure that others will chime in as to their opinions.
I do believe it is there short term but I don't know that I put much store in it for long term.
Just my own opinion though....and my own personal experience from when I still have short nights of sleep and do incur some short term sleep debt.

Dog Slobber · Post by **Dog Slobber** » Sun Jul 17, 2022 4:07 pm

Pugsy wrote: ↑
Sun Jul 17, 2022 3:44 pm

There is sleep debt but I have my doubts as to long it lasts and how much time it takes to "clear up the debt" because I am unsure just how long it really lasts ....and/or it could just be another one of those many things in life that comes with that YMMV sticker.

Sleep debt, cripes it took me forever to clear up my credit card, marital and gambling debt!

YMMV on those ones too.

zonker · Post by **zonker** » Sun Jul 17, 2022 4:56 pm

sleep debt, really don't know if it's a THING or not. some say yes, some saw no. it felt like sleep debt to me.

it is known that each of us start shedding off sleep apnea at our own pace. not sure how long it took me tbh. i'm just glad that i don't feel foggy/groggy/headachy in the morning.

however i have never been a morning person and i doubt i ever will be. i have to slide into the day nice and easy.

Billymadison420 · Post by **Billymadison420** » Sun Jul 17, 2022 5:01 pm

So even with good AHI #s it could take a few weeks? I guess what what I’m asking. Thank you!

Pugsy · Post by **Pugsy** » Sun Jul 17, 2022 5:37 pm

Billymadison420 wrote: ↑
Sun Jul 17, 2022 5:01 pm
So even with good AHI #s it could take a few weeks? I guess what what I’m asking. Thank you!

It takes as long as it takes and numbers don't mean squat if you don't sleep solidly and decently. AHI 0.0 doesn't mean anything and doesn't guarantee feeling like superman/woman if you don't get good sleep and good sleep means the number of hours you need AND minimal arousals. It's normal to have a few arousals like after REM cycle but if someone remembers a lot of tossing and turning and awakenings then you can pretty much bank on there being even more we don't remember.

Good numbers don't guarantee anything if you don't have good sleep to go with them.

And it can take weeks or months to feel the good numbers once we get them...numbers as in AHI numbers.
There's so much more to good sleep than just the AHI numbers. I wish it were that easy because getting nice low AHI numbers is the easy part. It's the feeling the low numbers that is the hard part.

Quit putting a time frame goal to things....take another patience pill.

Billymadison420 · Post by **Billymadison420** » Sun Jul 17, 2022 5:50 pm

Just took two, I will let you know if they prove effective

Just got AHI (24), waiting on CPAP

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