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+--- Thread: Newbie Nullus seeking advice (/Thread-Newbie-Nullus-seeking-advice)
RE: Newbie Nullus seeking advice - Nullus - 11-25-2021
Good Morning and Happy Thanksgiving
well i reset my settings back to default last night before i went to sleep and i woke up feeling amazing today, unfortunately my Sp02 ring died before the end of the night, thought i had enough to make it the whole night.
what's interesting to me is the fact that i had zero dips below 90% for 4 hours of sleep.
all the Clear airways went away, way less actual events, flow limitations appear to be gone, and most importantly the idiopathic CAs
is this a one night thing? or will it prevail. i guess time will tell. at this point if it keeps up being like this im going to ask my doctor for a sp02 do over and hopefully avoid the supplemental oxygen all together.
RE: Newbie Nullus seeking advice - SarcasticDave94 - 11-25-2021
I'm a firm believer in getting my own copy of the test results. Do not rely entirely on what they tell you about them. You need these copies for yourself in case you need them in the future to possibly avoid more testing for the same things. And putting the results here can help tell us what you're dealing with. You need your sleep study, Titration, and oxygen tests at hand.
If the doc says you need oxygen, accept adding it in to your therapy requirements. There's no shame in having health needs, it is shameful to ignore or refuse the therapy that's necessary. For some reason, your levels are concerning the doc. Your home results are not as accurate for some reason.
Default settings? You mean 4-20? This would be an extreme, non individual setup, and likely just an avoidance method. I think you're doing yourself a bit of a disservices by starting over based on that single very bad night. However it's your choice.
Note that starting at min 4 negates EPR 3. And if you had lots of CA to concerned with, EPR isn't friendly to CA in most cases.
And yes this another one night trend, it means little by itself. This is the one night good, with one night bad before it.
RE: Newbie Nullus seeking advice - Nullus - 11-25-2021
(11-25-2021, 01:47 PM)SarcasticDave94 Wrote: I'm a firm believer in getting my own copy of the test results. Do not rely entirely on what they tell you about them. You need these copies for yourself in case you need them in the future to possibly avoid more testing for the same things. And putting the results here can help tell us what you're dealing with. You need your sleep study, Titration, and oxygen tests at hand.
If the doc says you need oxygen, accept adding it in to your therapy requirements. There's no shame in having health needs, it is shameful to ignore or refuse the therapy that's necessary. For some reason, your levels are concerning the doc. Your home results are not as accurate for some reason.
Default settings? You mean 4-20? This would be an extreme, non individual setup, and likely just an avoidance method. I think you're doing yourself a bit of a disservices by starting over, despite seemingly good results of no CA. However it's your choice.
Note that starting at min 4 negates EPR 3. And if you had lots of CA to concerned with, EPR isn't friendly to CA in most cases.
And yes this another one night trend, it means little by itself.
Correct I went all the way back to default which I had coming out the doctors.
So I personally feel like everyone’s body and how it adapts is different. Whether it’s mental or my lungs not being used to it, I feel like the higher setting was me sticking my head outside of a moving cars window on the freeway. That feeling you get when the wind pressure is high and it locks you up like you can’t breathe. That’s how I was waking up feeling with it being set to 8, with no ramp. Because as I had mentioned before when I would take a breath in, it felt like the machine was sucking the air back from me before my breath completed. Which had me in this weird open window on the highway at 75mph with my head hanging out, these events happened to me while I was still awake also - it wasn’t just when I was sleeping. So maybe I just need to time adjusting to everything both mentally and physically, if the results stay great after a couple months I’ll work my way up to 5 then 6 then 7 but right now I’m just not used to it. I slept so good last night and besides the leaks from laying on my pillow I didn’t even know the machine was on.
When it comes to oxygen therapy I want to make sure I need it, before I take it. I know the test said that I did, but I also went back and looked at my graphs from when I made the changes and for whatever reason, more and more events started happening with the increase in those values. So, what if I’m doing fine on therapy like last night and don’t actually need to be prescribed supplemental oxygen? If I do I do that’s great I’ll get used to it. But what if the results are that of these changes I’ve made? And with the auto cpap doing it’s job of auto adjusting for me when events happens is solving the low sp02 levels as well? Time will definitely tell.
I’ve been a lot of reading on this and titration is or was good for machines that don’t have auto features. Where a set value needs to be set. But as we’ve seen our reports aren’t always the same every night, there’s fluctuations some good, some bad so why sleep on the bad setting all the time if the good setting works too?
My concern has to do with the last week of results. As I’ve noticed that the machine is showing more and more “idiopathic CA” events, as Gideon noted above. Looking back on my charts those events didn’t start happening until I went higher in pressure, and the other settings after bumping from 7 to 8.
I spoke with the respiratory therapist and in my report no central events happened. She assured me that if I had that type of apnea the machine would have caught that. And not diagnosed me with severe apnea. She told me I would have needed another machine and that asked me why I changed my settings when my treatment was doing so well before that? She’s been in the field for 18 years and told me that if you aren’t used to the high pressure it can sometimes pause your breathing.
So, I’m just a simple dude in the middle of this trying to live longer and figure this out. I’ll try the lower settings for the next couple days or week. With a fully charge sp02 ring and see how the results are. I’m not sure what else to do, because I feel like the high settings are helping me feel rested. And it may have to do with me just getting used to therapy all together. I could be wrong. I’m extremely green to all this and I definitely don’t want to disservice myself in therapy but I don’t know what else to do.
RE: Newbie Nullus seeking advice - Dormeo - 11-25-2021
The reply to your RT's question is that you weren't feeling rested, and being at higher pressures helped. At least, that's what I'm inferring from your posts.
That said, of course it's important to keep your O2 sats up. One nice thing about your machine is that you can increase a pressure setting by increments as small as .2. I'd say stick with what you have now, see how it goes -- including how rested you feel. If, after a couple of weeks, you are doing well on the O2 front but don't feel rested, you could try increasing your minimum by .2, stick with that that for a few days, going up by .2 if all is well, etc.
RE: Newbie Nullus seeking advice - Sleeprider - 11-25-2021
Based on what I'm seeing in your charts, a minimum pressure of 6.0 is going to stabilize pressures and won't increase CA events. You seem do do fine without EPR, but your pressure ranges are bouncing around which can be disruptive. Overall, the simpler settings look good at this moment.
RE: Newbie Nullus seeking advice - Nullus - 11-26-2021
(11-25-2021, 02:29 PM)Dormeo Wrote: The reply to your RT's question is that you weren't feeling rested, and being at higher pressures helped. At least, that's what I'm inferring from your posts.
That said, of course it's important to keep your O2 sats up. One nice thing about your machine is that you can increase a pressure setting by increments as small as .2. I'd say stick with what you have now, see how it goes -- including how rested you feel. If, after a couple of weeks, you are doing well on the O2 front but don't feel rested, you could try increasing your minimum by .2, stick with that that for a few days, going up by .2 if all is well, etc.
that is correct, initially i was but i think the changes to EPR and or ramp made that turn around.
i like that idea of the .2 and i didnt know that was a feature of my machine. thank you for the suggestion.
RE: Newbie Nullus seeking advice - Nullus - 11-26-2021
(11-25-2021, 03:33 PM)Sleeprider Wrote: Based on what I'm seeing in your charts, a minimum pressure of 6.0 is going to stabilize pressures and won't increase CA events. You seem do do fine without EPR, but your pressure ranges are bouncing around which can be disruptive. Overall, the simpler settings look good at this moment.
ill write this value down and continue with my testing. thank you for the suggestion and thought into this for me.
RE: Newbie Nullus seeking advice - Nullus - 11-26-2021
Good morning!
i did a few things last night to monitor how ive been sleeping with therapy.
- Wore 02 ring when i put on my mask
- kept hose warm with a blanket, and my finger with 02 as ive read and seen this happen when the finger is cold it impacts 02 readings
- setup a camera to record myself while i was sleeping
And here is why i think putting in the effort to look deeeeeeeeeeeeeeper is helpful in any form of diagnosis. especially where at home tests are being performed, as noted my sleep results have been worse since adjusting my settings and that may be a blanket term as im sure some of these are helpful but others have not been helpful in preventing events.
First thing, it appears im having time sync issues with either my cpap, OSCAR or my 02 ring. my ring has a feature that allows me to sync it to my PC clock which is correct, and the ring itself shows the correct time when i tap it to show its screen (just verified again) so i guess its either OSCAR or the CPAP as i was asleep with my mask on per video footage of me when OSCAR is showing the gap. And when my mask was off there’s no gap on the data. I was also out of bed but the recording data shows I still had my mask on after 6am, and i was awake at 545 never went back to sleep. but the data on OSCAR still shows my mask on when i had it off at 2:38am. any suggestions on how to address this?
- as you can see in my 02 readings i did well through the night until this one area here that appears start a little after 2:38am so i went and reviewed my camera and guess what.. i take my mask off at 2:38am roll over on to my back with the mask off and then sleep on my back until 2:53am where i roll over on my left side and sleep again until i get up at 3:12am to use the restroom and get a drink of water.
- i come back to bed at 3:15am - put my mask on fall back asleep until 5:45am until i wake up give the dog her meds and start my day.
im happy with my numbers and im happy to start seeing some positive results and explanations to the things happening while i sleep.
RE: Newbie Nullus seeking advice - SarcasticDave94 - 11-26-2021
It's well known doctors get things wrong regarding sleep Apnea, PAP machine settings, but I'd not say that about supplemental oxygen. 97-98% SpO2 readings will not be over saturated.
You're certainly free to use your own methods for the self Titration of settings and what you think of supplemental oxygen, but there should be a bit more reason than madness. You should realize your therapy just doesn't get better by itself, that's the reasoning behind adjusting settings.
I will strongly suggest if you're going to ask us what needs done to make the therapy better you would respect our suggestion and try them.
RE: Newbie Nullus seeking advice - Nullus - 11-26-2021
(11-26-2021, 12:32 PM)SarcasticDave94 Wrote: It's well known doctors get things wrong regarding sleep Apnea, PAP machine settings, but I'd not say that about supplemental oxygen. 97-98% SpO2 readings will not be over saturated.
You're certainly free to use your own methods for the self Titration of settings and what you think of supplemental oxygen, but there should be a bit more reason than madness. You should realize your therapy just doesn't get better by itself, that's the reasoning behind adjusting settings.
I will strongly suggest if you're going to ask us what needs done to make the therapy better you would respect our suggestion and try them.
I’m not exactly sure where we’ve gotten of on the wrong foot but it’s really starting to feel that way when I question results of things I’ve changed I thought that was point in this, to find out what works.
As for therapy suggestions, I’ve absolutely tried them and as you can see if you go back and look at the charts I’ve posted the settings have in fact increased my AHI and have caused more events. Sure maybe it’s all consequential and suddenly after a month of low AHI and finding you guys because of a question on 02 from Reddit that I ended up going up in events and how I felt. Which started off good but started to not end well as the charts show.
I posted some pretty good data this morning asking for advice.
In line 02 numbers two nights so far since changing settings.
A dip in 02 values with evidence as to why and a correction of those numbers when the mask was put on.
If you don’t like my thought process on therapy and trying to figure out what works best for me and my situation. Then I’m sorry that I’ve some how offended you, but your responses towards my curiosity as to why this is happening, what I can do personally to address them, and if don’t follow what is said to a T and agree with you on how I’m supposed to feel and be doing then I’m not sure what else to say to you.
I’ve explained many times in my posts that I don’t know what I’m doing. So when I get a list of events from someone who looked at my charts and I look into what those events mean obviously I’d rather not try and sleep like that again when the pattern is proving it’s self as increasingly problematic.
I have no problems with trying settings, you can see this clearly in my progression here. Others seem to think this isn’t a bad idea to at least try, but I feel like you’ve displayed nothing but disapproval towards me since I had that really bad night after a couple nights of increasing numbers.
Tough love is one thing, but now it feels like you’re coming at me with ultimatums of my future on this board if I don’t stick out the bad streaks. What’s wrong with going back to what was working and adjusting slowly from there? Does it mean the information I’ve been given is wrong? No. It means that maybe it’s to much for me to get used right off the bat. Going from basic to advanced with a bunch of different things enabled all at once makes it hard to pin down what’s going on.
At the end of the day I respect the opinions and advice of everyone here that’s helped me. But I have to sleep with this and my body has to respond to this in a way that works for me. If my questions and self exploration of why these events are happening are coming off as being arrogant and not thankful (which is easy to misread text in general anyway) then my apologies.
As a side note I wasn’t trying to imply that I would be over saturated but more of a question of if I could be. Was diagnosed early October tripped fell ended up here with a bunch of information all at once so it’s going to take some time to get through the weeds.
- best