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Pugsy
Unread post  Post subject: Re: Lost my sleep doctor, trying to figure out next steps  |  Posted: Sat Sep 18, 2021 11:43 am
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You know there is some thought that thyroid issues can impact sleep apnea...both hyper and hypo throid.
I am wondering how much (if any) that may have been a factor in 2019 when you went back and got that sleep study with a bunch of centrals might have been compounded the problem from an erratic thyroid.

I do know the PS of 10 most assuredly compounded the central apnea situation.

Just thinking out loud.

As you use the 6 cm for the next few days try to keep a log/record as to how you slept and how you feel in general.

If you happen to wake up during the night for any reason try to reach over and turn the machine off and then right back on again. This will give us a little break in therapy where we know for sure you were awake and any flagged events around that break can most likely be ignored.

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ExhaustedMuggleMom
Unread post  Post subject: Re: Lost my sleep doctor, trying to figure out next steps  |  Posted: Sat Sep 18, 2021 12:16 pm

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oh good idea! I roll over from side to side at least twice every night. I have issues (whether carpal tunnel or arthritis I don't know) in both of my wrists and elbows from typing at a desk for 8 hours per day since 1998, and after about an hour with any pressure on either side of my body, I the aches wake me up and I wave to switch sides. I will definitely turn the machine off and back on when I do that for a while.

FWIW I have no thyroid anymore. They took it all out with the tumor in 2009 and it wasn't until about 2015 that I got my levels right They have been pretty consistent since. My first doctor here in Albuquerque when I got Medicaid in 2018 thought I needed the sleep study since my TSH and Free T3 and T4 were OK but I still felt like a damn zombie all day every day.


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ExhaustedMuggleMom
Unread post  Post subject: Re: Lost my sleep doctor, trying to figure out next steps  |  Posted: Sat Sep 18, 2021 12:20 pm

Joined: Tue Sep 14, 2021 7:46 pm
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PAP Mask: Phillips Respironics DreamWear Gel Pillow Cushion
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And you were right, Pugsy, about the healthcare situation here in the US. I am still making payments on my hospital stay when I had my thyroidectomy back in 2009.

It's been nice having the Medicaid, but I lose a doctor about once every 6 months in the system (Even though it's a BCBS managed plan) and have to start all over again with each new doctor. I have to admit though that New Mexico is far better with finding caring doctors for its poor than Texas was.


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Pugsy
Unread post  Post subject: Re: Lost my sleep doctor, trying to figure out next steps  |  Posted: Sat Sep 18, 2021 1:00 pm
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Medicaid reimbursement rates just plain suck .
I am in Missouri and it's the pits and no wonder doctors won't accept Medicaid patients.
Back in 1990 when I worked with an orthopedic surgeon Medicaid reimbursed 150 bucks for a surgery that even Medicare allowed 1700.
Lets see...do 4 surgeries for Medicare a day or 4 for Medicaid...can't say as I really blame them when they opt for higher reimbursement.

I see signs all the time..."sorry not accepting new medicaid patients".

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ExhaustedMuggleMom
Unread post  Post subject: Re: Lost my sleep doctor, trying to figure out next steps  |  Posted: Sun Sep 19, 2021 10:55 am

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Location: New Mexico
PAP Mask: Phillips Respironics DreamWear Gel Pillow Cushion
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I never realized the rates were THAT different. sheesh


OK. another great night of sleep thanks to you wonderful people. I am still in total shock.

Last night I turned my machine on at the stroke of midnight and was already laying down. I know I was asleep for a few minutes at least but probably not very long.

I do remember waking up feeling like I was drowning at 2:30 and had to really work at clearing my throat but was able to keep my mask on and my mouth taped up. That doesn't happen very often, but sometimes when I am sleeping flat while camping or something - without my machine - I will wake up with drainage in the back of my throat.

So . . . in looking at my chart from last night - when I zoom in at around 2:30 - I find two episodes marked OAs and one H. Is the H a Hypopnea? And what is a Hypopnea?? ( i tried reading up on them but am still not quite sure what they mean by shallow breathing. I know - sometimes I can be very dense, but I just don't get it)


Attachments:
OSCAR - drowning feeling in back of throat at 2 thirty am.png
OSCAR - drowning feeling in back of throat at 2 thirty am.png [ 81.69 KiB | Viewed 621 times ]


Last edited by ExhaustedMuggleMom on Sun Sep 19, 2021 10:59 am, edited 1 time in total.
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ExhaustedMuggleMom
Unread post  Post subject: Re: Lost my sleep doctor, trying to figure out next steps  |  Posted: Sun Sep 19, 2021 10:57 am

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PAP Mask: Phillips Respironics DreamWear Gel Pillow Cushion
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My numbers from last night - 3rd night on the CPAP only mode - 2nd night with pressure at 6cm:
-Clear Airway: 4 events
-Hypopnea: 1 event
-Obstructive Apnea: 2 events
-AHI of 1.00

Amazing!


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Oscar 3rd night on CPAP only - 6cm.png
Oscar 3rd night on CPAP only - 6cm.png [ 89.88 KiB | Viewed 621 times ]
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Pugsy
Unread post  Post subject: Re: Lost my sleep doctor, trying to figure out next steps  |  Posted: Sun Sep 19, 2021 12:34 pm
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Here are the official definition/criteria for the flagged events you see.

CA/Central apnea...a reduction in air flow that lasts at least 10 seconds but the airway is open. The lack of air flow is because there is no effort to breathe. Hold your breath for 10 seconds. That is essentially a 10 second central apnea. A few random centrals are normal and not a big deal.
Centrals only become a big deal when we see a lot of them back to back or they disturb sleep or cause desats.

Obstructive Apnea....again10 second minimum duration..air flow reduction of 80 to 100% because the soft tissues in the airway have collapsed at are blocking the air flow when we are making an effort to breathe.

Hyponea...same criteria as OA except the reduction in air flow is 40 to 79%. More than 79% and it earns the OA label.
I sort of think of them as baby OAs that haven't quite grown up yet.

A few random events seen is actually normal and no big deal. To expect total zero flagged events is an unrealistic expectation partly because sometimes we can't totally prevent them all and partly because with awakenings we run the chance of having false positive awake/arousal events flagged. If we aren't asleep they simply don't count.

Excellent report BTW. I do think we are on the right path here.
I can't quite see enough of the flow rate to comment for sure on those flagged events but to be honest...so random and so short lived it doesn't really matter.

Much better outcome than I anticipated. Hopefully after a couple of weeks you will really feel these good numbers.
Why do we sometimes see cpap be tried even for central apnea...because sometimes it works. Admittedly not often but sometimes it does work and it is so nice when it does. We got lucky.

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ExhaustedMuggleMom
Unread post  Post subject: Re: Lost my sleep doctor, trying to figure out next steps  |  Posted: Sun Sep 19, 2021 12:47 pm

Joined: Tue Sep 14, 2021 7:46 pm
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Location: New Mexico
PAP Mask: Phillips Respironics DreamWear Gel Pillow Cushion
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Thank you so much for the definitions! the "baby OAs that haven't grown up yet was a good addition - that helped me picture it better in my mind.

Pugsy wrote:

I can't quite see enough of the flow rate to comment for sure on those flagged events but to be honest...so random and so short lived it doesn't really matter.


gotcha. And so cool!!




OK then. I'm throwing salt over my shoulder before I say this: things are looking brighter! I shall continue onward. FWIW - I didn't take a nap yesterday or even feel that I needed one and that is BEYOND AMAZING! It's only 2 here now today, and work has been super busy, and so far I don't crave a nap so we shall see. I didn't think I would see the day I didn't HAVE to HAVE a nap to make it through. I am tired these last 2 days still a bit but not SLEEPY. If that makes sense. That struggle to even keep your eyes awake and focus on anything is horrible and I don't miss it one bit.


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Pugsy
Unread post  Post subject: Re: Lost my sleep doctor, trying to figure out next steps  |  Posted: Sun Sep 19, 2021 3:08 pm
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Read up on the side effects for the meds you take. They might be playing a part in some of your unwanted daytime symptoms.
I know you can't just up and not take them but sometimes it helps to know that they can be partly to blame.
Makes us a bit less frustrated when we see nice low AHI numbers but still don't quite feel as good as we hoped.

I also take a BP med....side effect....fatigue and a bit of messing with my sleep. :lol: :lol:

Lots of meds can mess with sleep quality which in turn messes with how we feel no matter how good our cpap therapy might be.
Damned if we do and damned if we don't kind of thing.

By messing with sleep quality I mean they can cause a bit of sleep maintenance insomnia which is when we wake up a bit too often or easily during the night.
https://www.goodrx.com/blog/could-your- ... -insomnia/

There's a lot more to getting good restorative sleep than just AHI numbers. Getting good numbers is the easy part...feeling them isn't so easy. We do the best we can though.

Given what had been going on with your sleep before the changes....I am thinking a couple of weeks and you will feel much better overall. Might not still be perfect because of meds or whatever but still a great improvement.

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Respirator99
Unread post  Post subject: Re: Lost my sleep doctor, trying to figure out next steps  |  Posted: Mon Sep 20, 2021 3:41 am
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Good thought about the meds. Amlodipne and Citalopram can both cause drowsiness and/or excessive tiredness. They should be taken at night before bed.

Quote:
Much better outcome than I anticipated. Hopefully after a couple of weeks you will really feel these good numbers.
Why do we sometimes see cpap be tried even for central apnea...because sometimes it works. Admittedly not often but sometimes it does work and it is so nice when it does. We got lucky.

Not lucky - just call me the Miracle Worker. :)

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ExhaustedMuggleMom
Unread post  Post subject: Re: Lost my sleep doctor, trying to figure out next steps  |  Posted: Tue Sep 21, 2021 6:18 pm

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PAP Mask: Phillips Respironics DreamWear Gel Pillow Cushion
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Hello Miracle Worker - nice to meet you! (seriously thought - sooooo nice to meet you!)

I take the Amlodipine at night and always have. I didn't think to check on the Citalopram - might start taking that at night too - thanks!

I was off work yesterday and determined NOT to turn the computer on even for a second.

So here at the last TWO night worth of results. I am BEYOND happy still.


Sunday Night


Attachments:
Oscar cpap ONLY settings Sun Sept 19.png
Oscar cpap ONLY settings Sun Sept 19.png [ 90.46 KiB | Viewed 536 times ]
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ExhaustedMuggleMom
Unread post  Post subject: Re: Lost my sleep doctor, trying to figure out next steps  |  Posted: Tue Sep 21, 2021 6:19 pm

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PAP Mask: Phillips Respironics DreamWear Gel Pillow Cushion
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...and last night


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Oscar cpap ONLY Monday Sep 20.png
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ExhaustedMuggleMom
Unread post  Post subject: Re: Lost my sleep doctor, trying to figure out next steps  |  Posted: Wed Sep 22, 2021 3:41 pm

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PAP Mask: Phillips Respironics DreamWear Gel Pillow Cushion
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another great night - this makes 6 nights of sleep with really GREAT numbers. It will be very interesting to see how I feel if this keeps up for a month!


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Oscar cpap ONLY Tuesday  Sept 21.png
Oscar cpap ONLY Tuesday Sept 21.png [ 88.13 KiB | Viewed 520 times ]
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Pugsy
Unread post  Post subject: Re: Lost my sleep doctor, trying to figure out next steps  |  Posted: Thu Sep 23, 2021 5:57 am
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Soooooo.....how are you feeling and sleeping?

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ExhaustedMuggleMom
Unread post  Post subject: Re: Lost my sleep doctor, trying to figure out next steps  |  Posted: Thu Sep 23, 2021 10:47 am

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Pugsy wrote:
Soooooo.....how are you feeling and sleeping?




I think I can accurately say that I am starting to feel better. I have definitely noticed a difference in my mental clarity, which is much needed. AND, I still have yet to need a nap in the afternoon since switching to CPAP and having such few CAs. My average CA number from the week before I switched was 179 - this past week it was 8. !!!!!!!! I have "slept" through the night just fine since getting use to the machine. But I didn't FEEL like I got any restorative SLEEP. This past week I still sleep just fine (after that first night of "this is too strange") AND I FEEL like I am getting real rest. Real rejuvenation.


Chart from last night


Attachments:
Oscar cpap ONLY Wednesday Sept 22.png
Oscar cpap ONLY Wednesday Sept 22.png [ 88.39 KiB | Viewed 495 times ]
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ExhaustedMuggleMom
Unread post  Post subject: Re: Lost my sleep doctor, trying to figure out next steps  |  Posted: Thu Sep 23, 2021 10:50 am

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FWIW (mostly note to myself - it's as good as place as any right now to keep it all in one place):

I was able to speak to my PCP yesterday and she ordered a full workout of blood tests for this week. I'm supposed to then review all the results with my Endocrinologist. It will be nice to have a "baseline" or even "checkup" - the last time I had bloodwork done was in May of 2019 right before I started sleep therapy with my ResMed V-Auto. This set of tests will give me a snapshot of my health when first starting sleep therapy with CPAP mode. Hopefully this will be the start of a better life all around.


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ExhaustedMuggleMom
Unread post  Post subject: Re: Lost my sleep doctor, trying to figure out next steps  |  Posted: Thu Sep 23, 2021 10:51 am

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What is the best amount of sleep to shoot for at night? 6 hours? 7 hours? I will go do research on the boards here to see if it's been answered before, and I know it will be different for each person probably.


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Pugsy
Unread post  Post subject: Re: Lost my sleep doctor, trying to figure out next steps  |  Posted: Thu Sep 23, 2021 11:09 am
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hours of sleep needed is highly individual.

Let your body tell you.

While some people can get by with maybe 6 hours.....the majority of people will need between 7 and 8 PLUS those hours must be good quality hours. 8 or 9 hours of crappy sleep with lots of awakenings (whatever reason) is going to leave a person feeling a lot more crappy than 7 hours of good solid sleep with minimal awakenings.

Sleep quality itself is hugely important no matter the AHI or number of hours of sleep.

Lots of factors all intertwined here. All are important.

Listen to your body....it won't steer you wrong.

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ExhaustedMuggleMom
Unread post  Post subject: Re: Lost my sleep doctor, trying to figure out next steps  |  Posted: Thu Sep 23, 2021 1:03 pm

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Pugsy wrote:
Listen to your body....it won't steer you wrong.


Thanks


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ExhaustedMuggleMom
Unread post  Post subject: Re: Lost my sleep doctor, trying to figure out next steps  |  Posted: Sun Sep 26, 2021 2:18 pm

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Still doing great.

Thursday night


Attachments:
OSCAR cpap ONLY Thursday Sept 23.png
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