Is my CPAP treatment even working? (updated p2)

DeepFriedDuck wrote:

Jimmycrackhorn wrote:Durable Medical Equipment? Dubai Mercantile Exchange? Department of Medical Education?

Is my DME the provider of my mask and cpap equipment?

You have been here over a year, and you don't know what a DME is?

Bravo to the users asking for clarification to a term they didn't understand. That is what asking questions are for.

I have been on treatment over a year. I just woke up another day after what I consider to be a horrible night, tossing, turning, adjusting the mask, having leaks pop in my face, trying to go back to sleep, back and body stiff as hell, tossing, turning, moving about.

SLEEP, to me, is a CHORE and I HATE IT. I absolutely HATE sleep at this point because it is like a GIANT production every single night of my life and I have NO IDEA if I am going to wake up somewhat refreshed, like yesterday or feel like I didn't get enough sleep, like today.

I would say that my sleep has gotten WORSE since starting cpap treatment. I used to have maybe 3 or 4 days a week where I would wake up feeling ok. Maybe I would have to deal with the rest of the week being horrible but...

Now I have MAYBE if I'm lucky, 1 day a week I wake up feeling ok. I NEVER sleep all the way through the night. I wake up several times, I can't sleep in the positions I love because of these garbage masks....

And like I said, crappy sleep leads to other problems that make it harder to sleep - itches popping up at random, stiff body and aches in my back, having to meditate daily a LOT trying to catch up on sleep or just calm myself down enough to actually even want to be in bed. To be honest I'm so fed up I want to smash everything in my room - Thank God For meditation or I'd be a wreck.

I've tried 3 different types of Nasal Masks. Then the last 2 nights I tried a facemask. Well the first night with the facemask gave me hope, even having to keep adjusting the mask, having air shoot in my eyes, tightening, untightening, adjusting tweaking, and I still managed to get good enough sleep to feel refreshed yesterday.

But then night 2 on that mask was a HORROR show. I wrestled with that thing, and my body was stiff and uncomfortable, I couldn't get into a position I liked. I feel like IF these nasal masks work, which I'm not even sure they do, that IF I could learn to sleep on my back that would be the best bet as far as comfort and being able to fall and stay asleep. Ya, I guess the apneas happen more that way, but apparently the hospital sleep study accounted for that since they did make me stay on my back to sleep for part of the study to get the best readings. I fell asleep there on my back but my concern is, can I stay asleep a straight 8 on my back on not just 2 or 3 hours here and there after a LONG TIME of laying there....?

Speaking to that. Even if I sleep on my side it takes a LONG TIME for me to get back to sleep as well. I use body pillows, more pillows, I have 2 mattresses, 1 soft and one more firm I sleep on. When I'm already still from poor sleep it seems the stiff one is TOO stiff and the soft one is TOO soft. And if I REALLY want a hard mattress I can sleep on the old springboard mattress I have too which mill make my body feel like pure garbage.

All I want from my life is NORMAL Sleep. I don't want to wake up every day with my head feeling like mush and having to try and meditate all day or whatever to catch up on rest. I'm literally angry at life, angry at God, angry at the universe - you name it. And the thing is, when I am RESTED I am the NICEST, most FUN person to be around. People like me alot. But this is literally TORTURE. I feel like I am a prisoner of my own bed and sleep and life. I can't enjoy the things I love because I can never get any f---ing momentum going. 1 day here and there is No way to live my life. My business is suffering, I'm almost broke, I have no social life anymore, I can't even hang out with the friend and the women who WANT to hang out with me.

Last summer one of my favorite girls EVER came to visit me for a week from out of state and my sleep was a MESS the whole time so I couldn't even show her the awesome time she deserved to have.

When I met her, I wasn't even on this cpap trash and I was way better off, drinking loads of chamomile tea before bed, taking 5-htp and other suppliments and 4 aspirin to help me sleep through the night. Now I don't even know if I should pop 1 aspirin before bed because while the Western Doctor tells me I'm totally healthy the Chinese Medicine Doctor tells me my organs are essentially all messed up because of having sleep issues for so long.

15 years or MORE of my life and RIGHT NOW - WITH CPAP - IT IS AT IT'S WORST. And I'm TIRED OF IT.

I'm 41 and I want to LIVE AGAIN!

I don't know if I need a new mask, more tests, what tests, what masks work or dont work, how to get them to work. I know NOTHING other than I am SO FED UP with waking up like this and knowing - well there goes another day of my life slipping by.

I don't even know what day of the week it is half the time anymore. I just always seem to always find out it's the weekend already, and another week is GONE that was a complete WASTE that I will never get back, but that I spent in this f---ing torture chamber that is sleep issues.

I tried the full facemask, which I officially hate now, and post the sleepyhead data from the past 2 nights on here - I would be happy to read how to understand this data if my eyes didn't hurt and I could concentrate, and wasn't trying to deal with talking myself out of going to the emergency room - if anyone can tell me what all this means and if there are anything to indicate my treatment is flawed let me know.


All I want to know is how to get my sleep back to normal.

1. What mask to wear.
2. Are my settings and pressure correct?
3. Do I need an Oximeter to check my oxygen saturation.
4. Am I mouth leaking - I don't think I am and my mouth doesn't feel dry when I wake up.
5. Can I get the proper air through my nose? I broke my nose when younger and I don't think I get it fixed right. I may have a deviated septum.
6. How to overcome stiffness and soreness so I can EASE into bed.
7. How to STAY ASLEEP - I'm assuming this has something to do with improper treatment. I couldn't tell you what readings are from me lying awake with the mask on or being asleep.
8. Can I sleep on my back and should I just learn to be patient and do it if that is the best possible position IMO?
9. Since I probably know next to nothing about how to treat my sleep - what essential KEYS am I missing? What tests do I need to ask for to make this treatment complete and effective, and what steps can I take NOW - on my OWN to improve treatment?
10. Is my Circadian Rhythm Destroyed from always trying to catch up on sleep during the day, trying to nap, meditate myself to sleep etc? If so NOW WHAT?

Machine and Mask Info:

Res-med Pro C-Flex +
Heated Hose
Humidity 3
Pressure 10 (have tried 10.5 and 11 but no luck - both through nasal masks.)

Masks tried:

Mirage FX
F&P ESON
Comfort Gel Nasal
Phillips Comfort Gel Full (for the past 2 nights)

One point - I sleep with the AUTO OFF function so when I take the mask off the machines shuts off after a minute or so. I don't know if that effects the readings or not.








JUST so we can be clear on this stuff...

Here is the DATA from mu NASAL MASKS for 2 nights PREVIOUS as well... That way you can tell if they are working properly.

day1.1 nasal

day1.2 nasal

day1.3 nasal

day2.1 nasal

day2.2 nasal

day 2.3 nasal


Thank you. I hate being a whiny butt but this literally is the most horrible thing I think I've ever experienced and it is VERY HARD to try and see that sunlight breaking through the clouds. All I can ever say is, "Will this EVER STOP? Will it EVER END?"

I just want to get this handled or at least know I am on the RIGHT TRACK to recovery. If I can know that, it will make me feel a whole lot better...

I can relate to your struggles. For me, I subconsciously resisted therapy because of denial. It took me a very long time to come to terms with it. Reading posts on this forum really helped me get through it. As far as sleep positions, aches and pains, I left my bed because I couldn't find a way to get comfortable. I moved to a recliner which helped a great deal. I spent about 9 months in the recliner. For about the past year, I have been on the sofa. I use 3 different travel/neck pillows and 3 large pillows positioned just right to keep me comfortable. I finally decided that it doesn't matter how complicated or messy my sleep arrangements are. It works for me. I still only get about 1 1/2 to 2 hours of uninterrupted sleep, but I do feel rested in the morning. The business of sleeping is hard work!

If you are laying in bed for long periods unable to sleep, it may help to get up and do something (whatever works for you) that will make you feel sleepy, then go back to bed.

I hope you can find a way to be more comfortable when you sleep and start feeling lots better, and that you get lots of kind suggestions here.

The large leak spikes aren't prolonged enough to be impacting therapy all that much as in making the AHI inaccurate. Now they are probably indications of a major mask leak and refitting/resealing situation which of course means most likely a full arousal which of course is unwanted but the amount of time spent in large leak territory itself isn't all that prolonged so it won't make us question the validity of the data shown.
Time in large leak...around 1 % of the night which isn't enough to make us question the data shown.

was impressed with your AHI until I saw the large leaks, which are probably distorting the AHI numbers.

Pugsy wrote:The large leak spikes aren't prolonged enough to be impacting therapy all that much as in making the AHI inaccurate. Now they are probably indications of a major mask leak and refitting/resealing situation which of course means most likely a full arousal which of course is unwanted but the amount of time spent in large leak territory itself isn't all that prolonged so it won't make us question the validity of the data shown.
Time in large leak...around 1 % of the night which isn't enough to make us question the data shown.

was impressed with your AHI until I saw the large leaks, which are probably distorting the AHI numbers.

MarylandCPAPer wrote:People more knowledgeable than me should be along shortly, but one think I notice on your Sleepyhead graphs is that it appears there is a lot of large leaks. I don't use the types of masks you've tried, so I can't help with possible solutions to the leak problem, but I'm sure others here can. I have always used nasal pillows masks.

i was impressed with your AHI until I saw the large leaks, which are probably distorting the AHI numbers.

If you are laying in bed for long periods unable to sleep, it may help to get up and do something (whatever works for you) that will make you feel sleepy, then go back to bed.

I hope you can find a way to be more comfortable when you sleep and start feeling lots better, and that you get lots of kind suggestions here.

So are you folks saying "everything seems in order?" Because if I can convince my brain to STFU and that the therapy isn't to blame that might help a lot. I am taking some chinese medicine - she said (the Chinese Doc) that years of bad sleep causes lots of major organs to malfunction which causes more bad sleep - vicious cycle - so she is treating my inner stuff at the moment, so I got that covered - so if the therapy in in order perhaps it's time for me to Bust out the Sedona Method Health and Wellbeing sessions and spend about 4 hours clearing stress and garbage out of my head related to bad sleep, and then be patient while "Hopefully" the therapy does it's magic over time.

But that's why I want to know if the therapy is indeed working, because at LEAST I could tell myself I have something to look forward to...

Any words of wisdom on this?

Thanks again to you folks for being supportive. You guys (ALMOST all of you ) are pretty awesome.

On paper the reports look good.
AHI is nice and low and leaks are for the most part well managed...so I don't see a pressure adjustment working any miracles.

What I do see and hear is crappy sleep from mask issues and maybe general issues.
I see lots of probable wake ups and severely fragmented sleep will simple trash any hopes of feeling those good numbers.
Unfortunately fixing these problems isn't nearly as easy as making a nice neat little pressure adjustment.
If getting a nice low AHI was all that it took to feel good and sleep good then this cpap stuff would be a walk in the park.

Finding a mask that doesn't cause a gazillion wake ups from either leaks or needing to fiddle with it during the night can be a challenge.

Do you have a mask that at least lets you sleep more soundly during the night without causing all the leak spikes and awakenings?

The reason I pointed out the leak rate is that, looking at the first graph, a lot of time appears to be spent between 55 and 100 on the leak scale.

edited to add: I'm sorry I pointed out a possible issue re: the leak rate and defer to others wiser than me on this matter.

Pugsy wrote:On paper the reports look good.
AHI is nice and low and leaks are for the most part well managed...so I don't see a pressure adjustment working any miracles.

What I do see and hear is crappy sleep from mask issues and maybe general issues.
I see lots of probable wake ups and severely fragmented sleep will simple trash any hopes of feeling those good numbers.
Unfortunately fixing these problems isn't nearly as easy as making a nice neat little pressure adjustment.
If getting a nice low AHI was all that it took to feel good and sleep good then this cpap stuff would be a walk in the park.

Finding a mask that doesn't cause a gazillion wake ups from either leaks or needing to fiddle with it during the night can be a challenge.

Do you have a mask that at least lets you sleep more soundly during the night without causing all the leak spikes and awakenings?

I mean, I don't know... I try different masks. I still wake up repeatedly at least on average of 3 to 4 times a night. Sometimes I can just fall right back asleep rather quickly but other times, especially if I have to get up to take a bathroom break, and then have trouble getting comfortable again... Oh man. That's when the hell starts. It can be anywhere from 1 or 2 or even on the extremes 3 or 4 hours on occasion (rare but it happens) for me to fall back asleep.

Ok. So you don't think I need to get an oximeter test done to see how my levels are?

And you think that I'm getting decent treatment and it's just the wake-ups that are the issue for the most part? I kinda figured after a while on CPAP the wake-ups would naturally stop. They haven't....

Once in a blue moon I get this miracle of sleep where I'm out and maybe wake up once or not at all and it's morning. Oh man, if I could just have that even half of the nights I would be a happy man.

Again, I would like to try back sleeping but It takes SO LONG to fall asleep like that and already it takes me long enough to fall asleep. Hmmm. I wonder what the trade off would be?

Jimmycrackhorn wrote: I am taking some chinese medicine

WTF???

I don't see the need for a pulse oximeter based on the data on the reports.
Now that doesn't mean that you couldn't be having some oxygen issues but if you are I don't see them being related to the OSA itself.
If it would relieve your mind to have that additional data...then by all means consider it but you stand a good chance of ending up like I did....I used my pulse ox twice and it went in the drawer and that was it until I sent it to someone who would use it.
I wasn't surprised that my O2 levels were just fine and I also wasn't surprised that I had no desire to check them again and that's why I got the cheapest one. I pretty much knew it wouldn't be an ongoing thing for me to be doing. I am too lazy.

You know there's a saying...cpap can't fix bad sleep if the bad sleep isn't related to sleep apnea. No matter how much we want it to or expect it to. My sleep quality is crappy...but I have other issues that would give me problems even if I didn't have sleep apnea. I have "good" nights and "bad" nights and I get good days and bad days to go along with them but my sleep apnea isn't the problem and the machine isn't the problem and the mask isn't the problem.

Sleep maintenance insomnia...that's where you wake up and can't go right back to sleep is a problem for a lot of people ...those with sleep apnea and those without sleep apnea. There's a reason that millions of dollars are spent on insomnia remedies (both RX and OTC)...there's a ton of people who have that problem and it isn't and easy one to fix.

All I know to do is work with the known issues and try to improve/reduce/eliminate those issues as best we can. If mask discomfort or leaks are waking someone up then they need to be worked on some how.
Even if the leaks are massive or prolonged..they are disturbing sleep and anything that disturbs our sleep is unwanted.

If sleep position causes pain or problems...try to figure out what position has less problems or pain.
Pick and problem and trouble shoot it to see what you can do to make it less of a problem. It takes a lot of detective work sometimes. It took me 3 years to get my pain issues down to a dull roar so that I didn't wake up 50 times a night....it's still not perfect but it's a lot better than it was.
It took me over 3 years to work up to sleeping around 7 hours a night (with maybe a dozen wake ups and for me that's real good) and I need at least 7 hours to have any hope of feeling decent during the day.
Lots of trial and error in terms of bed comfort and even meds (with the doc helping sort things out). At least I now have more "good" nights.

Pugsy wrote:I don't see the need for a pulse oximeter based on the data on the reports.
Now that doesn't mean that you couldn't be having some oxygen issues but if you are I don't see them being related to the OSA itself.
If it would relieve your mind to have that additional data...then by all means consider it but you stand a good chance of ending up like I did....I used my pulse ox twice and it went in the drawer and that was it until I sent it to someone who would use it.
I wasn't surprised that my O2 levels were just fine and I also wasn't surprised that I had no desire to check them again and that's why I got the cheapest one. I pretty much knew it wouldn't be an ongoing thing for me to be doing. I am too lazy.

You know there's a saying...cpap can't fix bad sleep if the bad sleep isn't related to sleep apnea. No matter how much we want it to or expect it to. My sleep quality is crappy...but I have other issues that would give me problems even if I didn't have sleep apnea. I have "good" nights and "bad" nights and I get good days and bad days to go along with them but my sleep apnea isn't the problem and the machine isn't the problem and the mask isn't the problem.

Sleep maintenance insomnia...that's where you wake up and can't go right back to sleep is a problem for a lot of people ...those with sleep apnea and those without sleep apnea. There's a reason that millions of dollars are spent on insomnia remedies (both RX and OTC)...there's a ton of people who have that problem and it isn't and easy one to fix.

All I know to do is work with the known issues and try to improve/reduce/eliminate those issues as best we can. If mask discomfort or leaks are waking someone up then they need to be worked on some how.
Even if the leaks are massive or prolonged..they are disturbing sleep and anything that disturbs our sleep is unwanted.

If sleep position causes pain or problems...try to figure out what position has less problems or pain.
Pick and problem and trouble shoot it to see what you can do to make it less of a problem. It takes a lot of detective work sometimes. It took me 3 years to get my pain issues down to a dull roar so that I didn't wake up 50 times a night....it's still not perfect but it's a lot better than it was.
It took me over 3 years to work up to sleeping around 7 hours a night (with maybe a dozen wake ups and for me that's real good) and I need at least 7 hours to have any hope of feeling decent during the day.
Lots of trial and error in terms of bed comfort and even meds (with the doc helping sort things out). At least I now have more "good" nights.

Ok so you understand this but apparently were even worse off than I am. Hmm, I supposed I'm being a spoiled child...

So one last one for the ringer. My worry that not getting enough sleep is causing other problems like my brain malfunctioning, possible dementia down the road or even now, etc. How do I cope? I already went about 15 years without treatment so damage was likely done but now that my sleep seems to have gotten worse I feel like I'm going to end up like a zombie in some nursing home and it freaks me out. That probably doesn't do wonders for my sleep either.

MarylandCPAPer wrote:The reason I pointed out the leak rate is that, looking at the first graph, a lot of time appears to be spent between 55 and 100 on the leak scale.

Look more closely....the bulk of the top leak line is below 50 with only the big spikes up into large leak territory.
I just looked at 2 nights...the 95% leak was 44 L/min one night and 48 L/min another night.
The median was around 30 L/min. Remember the 95% number is at OR BELOW that number for 95% of the night.
These are the top line on the leak graph which is total leak and that includes the mask's expected vent rate.
It's not going to be nice and low like your leak line on your ResMed machine because your ResMed machine doesn't doesn't include the vent rate in its reported leak.
The PR S1 machine will flag a large leak and other than the big spikes which is the mask coming off...no real large leaks are seen or flagged.
Large leak territory is probably some where up between 80 and 90 L/min total leak depending on which mask he is using.

Now those spikes in leaks...that tells me that there are mask issues or sleep issues but they don't last long enough to seriously impact the therapy itself. These machines actually can probably do a real decent job of compensating for even some large leak up to around 100 L/min...above that and it starts getting iffy but he simply isn't having those really big leaks for prolonged periods of time.
So the mask issues or whatever is causing the sleep disruption is still a problem but it's not affecting the data from the machine. We can trust the data to be accurate except for the very short periods of time that the spikes happen and than doesn't add up to enough time overall to really hurt things...1 or 2 % out of 8 hours...is maybe 10 minutes. If he was sleeping solidly right through all that...I wouldn't be worrying about it at all.

Jimmycrackhorn wrote:How do I cope?

You do the best you can. It may not be ideal or perfect but you do the best you can.

If it were me...I would start with the obvious and work from there. Pick a mask that allows you less fiddling or comfort issues or leak issues...so as to at least reduce the mask itself making things worse.

Work on any pain issues you have that might be affecting sleep position or your sleep quality. Take a hard look at what's going on with your body and what you can do to maybe help reduce the problem.

Take a hard look at any meds you might take and any other health issues you might have.
Take a hard look at your sleep hygiene...do you do things that are known to make sleep quality less optimal....I know I do and sometimes I have to kick myself in the butt and force myself to quit doing something bad.

Make a list of things that need improvement...then make a list of potential things to try to maybe improve things.
Make a realistic list of what you really expect.
Get your doctor involved...if you haven't had a really good complete physical with labs (and not just the routine labs but hormones and vitamin levels) just to make sure there isn't some underlying health condition making things worse.

Bad sleep is rarely caused by one single thing...most of the time it's caused by a combination of things and figuring it out is hard work. Not an easy fix at all.

Those people who slap the mask on and from night one feel like a new human 30 years younger....I just want to go stick pins in their masks and mess with their sleep...they don't know how lucky they are.

Jimmycrackhorn wrote:

Pugsy wrote:The large leak spikes aren't prolonged enough to be impacting therapy all that much as in making the AHI inaccurate.

pugsy is correct, your leak control is excellent.