Newbie needing advice tweaking stuff!

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
mrapnea
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Newbie needing advice tweaking stuff!

Post by mrapnea » Thu Jan 17, 2019 1:55 pm

Hey guys and gals! First of all, let me say, WOW!!! You guys really seem to know your stuff. After speaking hours on end with my Dr, and reading this forum, I can conclusively and scientifically say he doesn’t know sh$t!!!!

Long story short, I went to the sleep clinic because of excessive daytime sleepines, some very very very bad brain fog (to the point where it is putting my job at risk) and a general feeling that something was not ok...

He ordered the home apnea test with a Resmed thingy. I did that, came back with AHI 21 comprised of obstructive and hypopneas, no centrals. He said he wasn’t too sure about the test, so he ordered me to take it again. So I did. Same results (AHI 19.8).
Then came the in-lab PSG. I bearly slept anything, I think I slept 1:45hs or something like that. I didn’t get the results of that one. So he then ordered a CPAP titration study.

At this point I got pretty upset since each of these studies had a co-pay, which I paid obviously, plus my insurance was calling me and saying, basically, “cut this crap or we are not going to cover any more of these sleep studies”. Spoke to the Dr, and asked if it wouldn’t be smarter to give me an APAP, and titrate the pressures using the data from the machine (that way I could stop spending money on studies and force my insurance to cover the machine), he said NO.

So I spoke to my family GP and he gladly ordered the APAP, but he told me that he would give me the generic pressures and I would need to find a new sleep Dr to help me with the titration.

Here I am, asking for some help! I slept last night with the machine (Resmed Airsense 10 APAP) with the Philips Respironics Nasal Pillow mask.

I have to say I woke up wayyyyyyyyy more tired than any normal day, provided I had a moderately hard time sleeping with the machine, I was expecting to feel somewhat better (at least not crappier).

Downloaded the data to sleepyhead and found some clear airway events and some other stuff that I clearly fail to understand.

Could someone please help me in figuring this stuff out? Maybe I have to tweak the pressures? Disable or enable something? Any help will be greatly appreciated since I am completely on my own 😢

Thank you very much!!!!
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djams
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Re: Newbie needing advice tweaking stuff!

Post by djams » Thu Jan 17, 2019 3:25 pm

Welcome to the forum. You're in the right place, I can assure you of that. :)

I can tell you that you're going to get a WAY better titration by working over time with the experts here than you ever would from a single night in a lab, in a foreign environment, with a bazillion wires attached to your body - not to mention that thing on your face. I wish I'd gotten started the way that you are. It's going to be so much more effective - and you'll get there much more quickly. Really, if you think about the possibility of accurate titration in a lab - it's gotta be near zero.

Please read the newbies sticky: viewtopic/t172378/Sticky--Newbies-PLEAS ... STING.html, fill out your equipment profile and learn how to format your charts to get the most out of the screenshots you post.

An expert will be with you shortly.... :D

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palerider
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Re: Newbie needing advice tweaking stuff!

Post by palerider » Thu Jan 17, 2019 3:34 pm

djams wrote:
Thu Jan 17, 2019 3:25 pm
Welcome to the forum. You're in the right place, I can assure you of that. :)

I can tell you that you're going to get a WAY better titration
We better results, way better settings...

"Titration is the process of determining the medication dose that reduces your symptoms to the greatest possible degree while avoiding as many side effects as possible. When your doctor titrates a dose, he or she is making adjustments to how much medicine you're taking." so, technically, it's the usually ineffective night in the sleep lab where they're diddling with the pressures.

Not the end result, ie, it's a process, not a result.

Yeah, I know, nag nag nag. :) (I only do this because you're showing so much promise and ability. :))

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Re: Newbie needing advice tweaking stuff!

Post by palerider » Thu Jan 17, 2019 3:49 pm

mrapnea wrote:
Thu Jan 17, 2019 1:55 pm
since I am completely on my own 😢
WOAH! Let me stop you RIGHT THERE!
You are NOT completely on your own, you're in good company, Stick around, be part of the family, and we'll help you achieve good results.
mrapnea wrote:
Thu Jan 17, 2019 1:55 pm
Downloaded the data to sleepyhead and found some clear airway events and some other stuff that I clearly fail to understand.

Could someone please help me in figuring this stuff out? Maybe I have to tweak the pressures? Disable or enable something? Any help will be greatly appreciated
Auto machines are nice, they make the process of fine tuning your settings easier, because they give a lot more data about how your sleep is, and what pressures you need than a fixed pressure machine, but, the are not magic, no matter what a lot of doctors seem to think.

First, ignore the "clear alrway" apneas, (that's a term that Respironics made up, the rest of the world calls them what they are, "central apneas"). there aren't enough of them to be concerned about, whether they're real or an after effect of your waking up briefly.

You're having some breathing events that are causing the machine to raise pressure, if you preemptively raise the pressure, that may smooth out your breathing, resulting in better sleep.

I'd bump your minimum up to 8, and see how you do.

Also, please review this thread viewtopic/t158560/How-to-post-images-for-review.html with instructions on how to format your screenshots, the two pressure lines are redundant, we only need 'pressure', and seeing the flow limitations graph gives us useful info.

Stick with it, the cpap is working pretty well so far, you just need to get more used to it.

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mrapnea
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Re: Newbie needing advice tweaking stuff!

Post by mrapnea » Thu Jan 17, 2019 6:56 pm

palerider wrote:
Thu Jan 17, 2019 3:49 pm
WOAH! Let me stop you RIGHT THERE!
You are NOT completely on your own, you're in good company, Stick around, be part of the family, and we'll help you achieve good results.
Thank you very much for those kind words! This place looks like everything that is right, people helping one another, and the amount of knowledge is staggering!

My bad, I did fudge up the screenshot for failing to read the newbie instructions! That is a newbie move! I re-arrenged the screenshot and will attach it just in case.

I am beginning to understand that this may be a longer process than what Drs seem to make it out to be. Per my Dr "you will feel absolutely like a new person the morning after using the machine", I can tell now that that was either wishful thinking, or plain ignorance about the process.

I will take your advise and bump the pressure to 8 to prevent those few events. Hopefuly those central apneas won't present a problem... I was a little concerned since the sleep study showed none, and now, voila, they show up... WEIRD!
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palerider
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Re: Newbie needing advice tweaking stuff!

Post by palerider » Thu Jan 17, 2019 9:09 pm

mrapnea wrote:
Thu Jan 17, 2019 6:56 pm
palerider wrote:
Thu Jan 17, 2019 3:49 pm
WOAH! Let me stop you RIGHT THERE!
You are NOT completely on your own, you're in good company, Stick around, be part of the family, and we'll help you achieve good results.
Thank you very much for those kind words! This place looks like everything that is right, people helping one another, and the amount of knowledge is staggering!

My bad, I did fudge up the screenshot for failing to read the newbie instructions! That is a newbie move! I re-arrenged the screenshot and will attach it just in case.

I am beginning to understand that this may be a longer process than what Drs seem to make it out to be. Per my Dr "you will feel absolutely like a new person the morning after using the machine", I can tell now that that was either wishful thinking, or plain ignorance about the process.
Some doctors set really low expectations (over on reddit some goober is championing his doctor as being "one of the top three in the west (which means, what, he's #3?) as saying "MY Doctor said it could take up to a YEAR to feel better!") hogwash.

Others, such as yours, give false hope... it's usually not an overnight thing, but certainly far quicker than a year.
mrapnea wrote:
Thu Jan 17, 2019 6:56 pm
I will take your advise and bump the pressure to 8 to prevent those few events. Hopefuly those central apneas won't present a problem... I was a little concerned since the sleep study showed none, and now, voila, they show up... WEIRD!
Hold your breath for 10-15 seconds (at least 10) .... that's a central apnea... nothing at all, eh? really, the only time that centrals are something to worry about is if you have them so frequently that your oxygen levels start to drop. (I've held mine for close to a minute, watching my oximeter... very little change)

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djams
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Re: Newbie needing advice tweaking stuff!

Post by djams » Fri Jan 18, 2019 6:02 am

palerider wrote:
Thu Jan 17, 2019 3:34 pm

Not the end result, ie, it's a process, not a result.

Yeah, I know, nag nag nag. :) (I only do this because you're showing so much promise and ability. :))
Doesn't bother me. One of the reasons I venture to post is that I *know* you'll be by to correct if it's wrong.

Didn't think this was one of those times, but there you go. :)

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esel
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Re: Newbie needing advice tweaking stuff!

Post by esel » Fri Jan 18, 2019 6:41 am

well miracles can happen but they do not happen too often.

by the way you have two periods where you are sleeping ok. Between 2:25 to 2:45 and between 4:40 and 5:10 look at the flow rate graph. The pressure for these periods is around 7. I would, like PR said, set the min pressure between 7 and 8 and see what happens.
Post new graphs, ask questions and give your body some patience to adjust. hold on and good luck.

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foo
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Re: Newbie needing advice tweaking stuff!

Post by foo » Sat Jan 19, 2019 8:37 am

Ya, don't freak out in the beginning of this process because you are feeling worse than you'd imagine.
The extra awareness that you're giving it is intensifying it on it's own.
You gotta get used to this new treatment. It takes some people some time just getting used to the habits you need to learn and the dealing with the physical presence of the devices.
I had a rough first three weeks. A lot of it had to do with too high of a pressure and poor mask fit. I had to learn from forums and articles how to improve each aspect of the treatment.
It's 2 1/2 months later for me and I am feeling a whole lot better. I almost gave up twice, but a thread here and there gave me new insight into why I was struggling.
I can tell you now that I went from hating treatment/ordeal to being able to tolerate and accept it.
I feel so much better, and I believe I will keep improving. It takes time. Some, more than others.
The best advice I've seen is that you gotta figure out where the difficulties are and find a solution or way to remedy them.
You'll get better!

Good LUCK!

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djams
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Re: Newbie needing advice tweaking stuff!

Post by djams » Sat Jan 19, 2019 9:33 am

mrapnea wrote:
Thu Jan 17, 2019 1:55 pm
I slept last night with the machine (Resmed Airsense 10 APAP) with the Philips Respironics Nasal Pillow mask.
On the respironics pillow mask. I've currently got this mask in my stable. I want to let you know that the the mask frame is compatible with the nasal cushion, which for me is more comfortable, and leaks less. I got mine here for $12(no prescription requirement): https://smile.amazon.com/gp/product/B01 ... UTF8&psc=1

If you're happy and comfortable with the nasal pillows, by all means stick with it! You sure aren't having leak problems. I just wanted to make you aware that there is a low-cost alternative out there that will plug right in to the mask frame that you already have.

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mrapnea
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Re: Newbie needing advice tweaking stuff!

Post by mrapnea » Tue Jan 22, 2019 10:18 pm

djams wrote:
Sat Jan 19, 2019 9:33 am
[quote=mrapnea post_id=<a href="tel:1285092">1285092</a> time=<a href="tel:1547754919">1547754919</a> user_id=89737]
I slept last night with the machine (Resmed Airsense 10 APAP) with the Philips Respironics Nasal Pillow mask.
On the respironics pillow mask. I've currently got this mask in my stable. I want to let you know that the the mask frame is compatible with the nasal cushion, which for me is more comfortable, and leaks less. I got mine here for $12(no prescription requirement): https://smile.amazon.com/gp/product/B01 ... UTF8&psc=1

If you're happy and comfortable with the nasal pillows, by all means stick with it! You sure aren't having leak problems. I just wanted to make you aware that there is a low-cost alternative out there that will plug right in to the mask frame that you already have.
[/quote]

That is some good advice! I did look into that mask, since I was thinking if it could be more “comfortable” and less prone to leaks.

I have to say I’m pretty happy with the pillows, the only issue is that I’m a veryyyyyyy restless sleeper, and when I toss and turn, the pillows sometimes move a little and start leaking just a tiny bit, enough to wake me up, so I might need to try those cushions!

On the same note, I saw that the Dreamwear Full Face mask is very cool and fits in the same frame (just need the headgear) so I think that I could overtime get the cushions, the full face, and try during some time each one to see which one fits me best!

I want to be as comfortable as humanly possible, because man, this is some uncomfortable doody, whatever makes it less tedious, I’m in!!!!!

On a side note, do you need a prescription to get additional masks? Cuz I’ve been looking everywhere and can’t find a place to get them without a prescription (my Dr is a complete tool and won’t write one because he is mad I didn’t want to wear some full face BS astronaut looking crap he was trying to push)...

Thanks for the infoooo!

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Re: Newbie needing advice tweaking stuff!

Post by Okie bipap » Tue Jan 22, 2019 10:23 pm

You can often find enough parts to make up a mask on eBay. You can purchase a mask kit which includes everything except the head gear, then purchase the head gear. Items such as cushions do not require a prescription.

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Re: Newbie needing advice tweaking stuff!

Post by mrapnea » Tue Jan 22, 2019 11:13 pm

esel wrote:
Fri Jan 18, 2019 6:41 am
well miracles can happen but they do not happen too often.

by the way you have two periods where you are sleeping ok. Between 2:25 to 2:45 and between 4:40 and 5:10 look at the flow rate graph. The pressure for these periods is around 7. I would, like PR said, set the min pressure between 7 and 8 and see what happens.
Post new graphs, ask questions and give your body some patience to adjust. hold on and good luck.
This is exactly what I needed! To understand what to look at in order to achieve a better sleep, feel more rested, etc...

So by looking at the flow rate graph, you can tell I was resting without any issues during those times (is it because the graph looks less messy?)

For some particular reason, I can’t seem to get rid of the central apneas. It is driving me insane! Dont know if I should pay attention to it or not, but this piece of information (the looking at the flow rate chart) is perfect!!! Thank you!!!!!

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Re: Newbie needing advice tweaking stuff!

Post by Pugsy » Wed Jan 23, 2019 4:09 am

mrapnea wrote:
Tue Jan 22, 2019 11:13 pm
For some particular reason, I can’t seem to get rid of the central apneas. It is driving me insane! Dont know if I should pay attention to it or not,
You can't do anything about them with this machine...so quit trying.
Hold your breath for 10 seconds...that's a 10 second central apnea...a few of them...no big deal.

It's normal to have a few central apneas anyway...sleep onset centrals. They are considered normal and not usually a problem unless they keep bouncing you out of sleep or you have so many of them back to back that you get significant drops in oxygen levels.
Yours are no where near that numerous.

Some of your centrals might be SWJ flagged events.
Go here and watch the videos and learn how to look at the flow rate up close to see if they are real or not.
http://freecpapadvice.com/sleepyhead-free-software

Even if every single central you see is the real deal (which I doubt)...you aren't having enough of them for anyone to worry about them. Doctors won't get concerned until you are seeing 5 per hour...all night long..every night. Yours are a long way from that.

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Re: Newbie needing advice tweaking stuff!

Post by palerider » Wed Jan 23, 2019 2:16 pm

mrapnea wrote:
Tue Jan 22, 2019 11:13 pm

For some particular reason, I can’t seem to get rid of the central apneas. It is driving me insane!
If centrals are under 8 per hour, ignore them.

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Accounts to put on the foe list: dataq1, clownbell, gearchange, lynninnj, mper!?, DreamDiver, Geer1, almostadoctor, sleepgeek, ajack, stom, mogy, D.H., They often post misleading, timewasting stuff.