New User Introduction
New User Introduction
Hello, everyone, glad to be aboard. I have gathered lots of information from this site over the last few months, and look forward to even more.
A brief intro: I am a 51yr old male, Air Force Veteran. Probably about 40 pounds overweight. The nature of my job, both prior to and since my AF retirement has me working shift work, for the last 30 years. Unfortunately I change shifts on a day to day basis, not weekly or monthly. According to my wife, I have had Sleep Apnea for the last 15 or 20 years, which has worsened considerably the last few years as I put on more extra weight. During the times I lost weight, it appeared to reflect positively on my symptoms, as they lessened in severity.
I finally became concerned enough myself to have a sleep study done June 3rd. The experience was not a pleasant one, as many here have said, and although I apparently gave the techs enough info to work with, I experience no REM sleep and not much sleep at all. I received my machine and mask the beginning of July. Tricare paid up front, not rent-to-own, along with my co-pay. No need to report back with compliance, etc. More about the equipment later. It was fairly hard to chase down my report, and I finally got my hands on it last week. It was a shocker to say the least. Now if it could only shock me into successfully using it!!
Anyhow, here are some of the numbers:
Total Sleep TIme 143 minutes (Pre-mask N1 sleep 59.4% - N2 40.6% - N3 None - REM - None)
( Wearing Mask N1 36.9% - N2 46.3% - N3 16.9% - REM - None)
AHI was 123.4 (Most apneas were OSA, about 10% were CSA)
SpO2 Nadir was 79% with 10.1 minutes <85%
CPAP was titrated to 11cm with a Total AHI of 11.6. SpO2 stayed above 90% during mask wear.
ECG Arrythmias noted with/without mask, sustained tachyrcardia, isolated PVC's.
Interestingly, Restless leg movements increased during mask wear.
AHI scores slightly lower when I slept on my side, but not significantly.
Scary stuff!!! I have not seen too many AHI's on the forum higher than mine.
Regarding my equipment, (hopefully showing up under my info) I got the PR System 60 Plus "Brick" that only records usage and is not compatible with any other software. It did come with C-flex which I like, and the heated humidifier, also cool. They have it set to 11 with a 30-minute ramp from 4. I also like that feature so far. My mask is the PR ComfortFull2
FFM and I feel like I have been able to get a pretty good fit and seal on it. I bought a hose hanger thingie which allows me to turn around in bed without major mask leakage issues.
So.....I have had it a few weeks now, and have only used it 7 or 8 times. The most I have been able to wear it so far was 3 nights ago when I wore it for 45 minutes, and then, a few minutes later, for another hour. Why such a poor job?
Because I have not been able to sleep with it on yet. And (although I know this is WRONG thinking) being a shift worker, I feel that even a few hours of poor sleep is better than none. And regarding the poor sleep, it usually does not seem that bad to me. I only wake up 3-6 times per night, have dreams, and feel at least somewhat rested in the morning. My poor wife knows otherwise though as she is privy to the numerous SA events that are hurting my body even if I am "sleeping" through them. Yes, I am also claustrophobic, and that is an issue, although, gladly, the mask is becoming less "alien" to me, and most of the claustrophobia I feel is when the machine is running full blast. At that point it feels hard to regulate my breathing with the air pouring into my mask. I am a mouth breather, with a slightly deviated septum (surgery NOT recommended) who has always felt like I don't "move" enough air through my nose, and am more comfortable augmenting it with mouth breathing. I was very worried about having panic attacks, but got over that pretty quickly.
I DO NOT want to give up on this. (Having not really started!) Knowing my apnea is bad enough that I actually probably need an EVEN HIGHER setting scares me, but so far it is hard to tolerate the 11cm.
I just want to get some sleep with the mask on. And slowly get more.
In the meantime, I am going to ramp up my attempts at losing weight, something I have a little more control over.
Thanks for listening, and glad to be here!!
Dan
A brief intro: I am a 51yr old male, Air Force Veteran. Probably about 40 pounds overweight. The nature of my job, both prior to and since my AF retirement has me working shift work, for the last 30 years. Unfortunately I change shifts on a day to day basis, not weekly or monthly. According to my wife, I have had Sleep Apnea for the last 15 or 20 years, which has worsened considerably the last few years as I put on more extra weight. During the times I lost weight, it appeared to reflect positively on my symptoms, as they lessened in severity.
I finally became concerned enough myself to have a sleep study done June 3rd. The experience was not a pleasant one, as many here have said, and although I apparently gave the techs enough info to work with, I experience no REM sleep and not much sleep at all. I received my machine and mask the beginning of July. Tricare paid up front, not rent-to-own, along with my co-pay. No need to report back with compliance, etc. More about the equipment later. It was fairly hard to chase down my report, and I finally got my hands on it last week. It was a shocker to say the least. Now if it could only shock me into successfully using it!!
Anyhow, here are some of the numbers:
Total Sleep TIme 143 minutes (Pre-mask N1 sleep 59.4% - N2 40.6% - N3 None - REM - None)
( Wearing Mask N1 36.9% - N2 46.3% - N3 16.9% - REM - None)
AHI was 123.4 (Most apneas were OSA, about 10% were CSA)
SpO2 Nadir was 79% with 10.1 minutes <85%
CPAP was titrated to 11cm with a Total AHI of 11.6. SpO2 stayed above 90% during mask wear.
ECG Arrythmias noted with/without mask, sustained tachyrcardia, isolated PVC's.
Interestingly, Restless leg movements increased during mask wear.
AHI scores slightly lower when I slept on my side, but not significantly.
Scary stuff!!! I have not seen too many AHI's on the forum higher than mine.
Regarding my equipment, (hopefully showing up under my info) I got the PR System 60 Plus "Brick" that only records usage and is not compatible with any other software. It did come with C-flex which I like, and the heated humidifier, also cool. They have it set to 11 with a 30-minute ramp from 4. I also like that feature so far. My mask is the PR ComfortFull2
FFM and I feel like I have been able to get a pretty good fit and seal on it. I bought a hose hanger thingie which allows me to turn around in bed without major mask leakage issues.
So.....I have had it a few weeks now, and have only used it 7 or 8 times. The most I have been able to wear it so far was 3 nights ago when I wore it for 45 minutes, and then, a few minutes later, for another hour. Why such a poor job?
Because I have not been able to sleep with it on yet. And (although I know this is WRONG thinking) being a shift worker, I feel that even a few hours of poor sleep is better than none. And regarding the poor sleep, it usually does not seem that bad to me. I only wake up 3-6 times per night, have dreams, and feel at least somewhat rested in the morning. My poor wife knows otherwise though as she is privy to the numerous SA events that are hurting my body even if I am "sleeping" through them. Yes, I am also claustrophobic, and that is an issue, although, gladly, the mask is becoming less "alien" to me, and most of the claustrophobia I feel is when the machine is running full blast. At that point it feels hard to regulate my breathing with the air pouring into my mask. I am a mouth breather, with a slightly deviated septum (surgery NOT recommended) who has always felt like I don't "move" enough air through my nose, and am more comfortable augmenting it with mouth breathing. I was very worried about having panic attacks, but got over that pretty quickly.
I DO NOT want to give up on this. (Having not really started!) Knowing my apnea is bad enough that I actually probably need an EVEN HIGHER setting scares me, but so far it is hard to tolerate the 11cm.
I just want to get some sleep with the mask on. And slowly get more.
In the meantime, I am going to ramp up my attempts at losing weight, something I have a little more control over.
Thanks for listening, and glad to be here!!
Dan
Re: New User Introduction
I want to welcome you to the forum. I also want to thank you for your service to our country. You are among friends here that will give you good advise. I will let others address the specifics of your experience.
_________________
Mask: AirFit™ F10 Full Face Mask with Headgear |
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control |
Additional Comments: Machine: S9 VPAP Adapt (eASV) 36037 |
Mode: ASVAuto, Min EPAP: 4, Max EPAP: 15, Min PS: 3, Max PS: 15, Ramp: Off - Original Titration: 18
Re: New User Introduction
Welcome to the forum and thank you for your service.
Do I understand the situation correctly?
Ramp 30 minutes and the most you have kept the mask on is about 45 minutes with no ability to go to sleep during that time frame?
So you lay awake the 30 minutes till the machine gets up to 11 cm which you find is difficult to manage and you are still awake about for another 15 minutes and then you remove the mask and turn the machine off?
Have you had any time where you were able to sleep with the mask and machine on?
Do you go right to sleep when you remove the mask?
Do I understand the situation correctly?
Ramp 30 minutes and the most you have kept the mask on is about 45 minutes with no ability to go to sleep during that time frame?
So you lay awake the 30 minutes till the machine gets up to 11 cm which you find is difficult to manage and you are still awake about for another 15 minutes and then you remove the mask and turn the machine off?
Have you had any time where you were able to sleep with the mask and machine on?
Do you go right to sleep when you remove the mask?
_________________
Machine: AirCurve™ 10 VAuto BiLevel Machine with HumidAir™ Heated Humidifier |
Additional Comments: Mask Bleep Eclipse https://bleepsleep.com/the-eclipse/ |
I may have to RISE but I refuse to SHINE.
Re: New User Introduction
I may have caught about 5 minutes of sleep when I wore it for an hour, about 45 minutes in. But when I woke up, I was quickly wide awake, and after another 10-15 minutes or so I took off the mask. I was able to fall asleep quickly without it afterwards. But as my wife noted, even if I did not, it was a sleep punctuated by OSA episodes.
Re: New User Introduction
Well obviously it can't help if you can't sleep.
Any idea why you can't get to sleep with it? Since you can get right to sleep without using the mask and machine then the insomnia isn't generalized but specific to the mask and machine.
So what is it that sends the brain into overdrive and won't let you sleep?
Have you tried simply wearing the mask with the machine on while watching TV or reading a book so that the brain can get used to the alien being stuck on your face?
Have you tried just wearing the mask while watching TV...not hooked up to the machine or anything like that?
The idea behind the above is to get the body sort of desensitized to having the mask on the face.
Have you discussed all this with your doctor? Any thoughts on maybe taking something to help you get to sleep? OTC or RX?
Any idea why you can't get to sleep with it? Since you can get right to sleep without using the mask and machine then the insomnia isn't generalized but specific to the mask and machine.
So what is it that sends the brain into overdrive and won't let you sleep?
Have you tried simply wearing the mask with the machine on while watching TV or reading a book so that the brain can get used to the alien being stuck on your face?
Have you tried just wearing the mask while watching TV...not hooked up to the machine or anything like that?
The idea behind the above is to get the body sort of desensitized to having the mask on the face.
Have you discussed all this with your doctor? Any thoughts on maybe taking something to help you get to sleep? OTC or RX?
_________________
Machine: AirCurve™ 10 VAuto BiLevel Machine with HumidAir™ Heated Humidifier |
Additional Comments: Mask Bleep Eclipse https://bleepsleep.com/the-eclipse/ |
I may have to RISE but I refuse to SHINE.
Re: New User Introduction
Welcome to the forum. I am a newbie as well. I have been on my bipap for right at 2 months now. My AHI was 38.6 during my sleep study. I could not tolerate the straight clap so they gave me a bipap that allows the exhale to be lower. My pressure is 5 exhale and 11 inhale. I tried the ramp feature the first night and did not like it. Made me feel like I was smothering. So, no ramp for me. I am claustrophobic(not a good speller who this is right) so I selected a fisher plakno pilarno nasal pillow. I was a mouth breather also since I have really bad sinus issues. During my titration they wanted me to try the nasal pillow and I was able to use it. It does take getting use to keeping your tongue on the top of your mouth but for some reason with the pressure it just does it for me with out me thinking to much about it. I made a rule that if I am in the bed the mask is on. So far it is working for me. I my AHI is still varying from .5 to 2.5. mostly toward the lower end when I sleep. I have a bad back so I wake alot with that and you can definitely tell the difference if you are awake with the events. Thanks to Pugsy I learned to discount them because you breathe differently when you are awake. You need a machine that is fully data capable so that you can monitor your status and not depend on someone that does not care as much to tell you what to do.
Please keep trying and do not get discouraged . You will be so glad you did. There are so many people here on this forum with great knowledge that can help you. It has been a life saver for me.
Good Luck
Please keep trying and do not get discouraged . You will be so glad you did. There are so many people here on this forum with great knowledge that can help you. It has been a life saver for me.
Good Luck
Re: New User Introduction
I have worn the mask during the day in front of the TV, computer, reading, and it has helped. I think it is just the air coming into my mask, mouth (mouthbreather), etc, that keeps me focused on it instead of just letting my thoughts wander as I normally would pre-sleep. I find myself trying to get into a rhythym with my breathing that is comfortable and repeatable. The few times my thoughts drift off or I drift off, I breath differently (easy to do) or have an isolated OSA episode which brings me back to wakefullness, as breathing into a mask becomes more noticeable then. And I do check the clocks to have some sort of idea about how long I slept, but I am not a manic clock-watcher
I have not talked to my doctor about it yet. She wants me to do another sleep study which I am sure will raise the sure even higher, the way she interprets my report. I am not gung-ho on the idea, but am willing to, ONCE I am able to at least partially tolerate and sleep with what I have now. Otherwise it will be a failure waiting to happen.
I am not on any meds, and don't really want to go that route either, but its looking like it might be a good idea. I am concerned about becoming dependent on them. And I am also thinking that with meds I am not recieveing therapy as it was meant, I am just putting myself under.
Thanks for all your replies this evening!!
I have not talked to my doctor about it yet. She wants me to do another sleep study which I am sure will raise the sure even higher, the way she interprets my report. I am not gung-ho on the idea, but am willing to, ONCE I am able to at least partially tolerate and sleep with what I have now. Otherwise it will be a failure waiting to happen.
I am not on any meds, and don't really want to go that route either, but its looking like it might be a good idea. I am concerned about becoming dependent on them. And I am also thinking that with meds I am not recieveing therapy as it was meant, I am just putting myself under.
Thanks for all your replies this evening!!
Re: New User Introduction
Thanks, cpierc01! Best of luck to you also on this journey. The techs tried some kind of nose mask at my sleep study but it was a quick no go for me. I have tried the "tongue tip behind my front teeth" technique and had a bit of success. Using a chin strap sounds way too "trapped" for me - I pulled a new pullover shirt on, and could not pull it off as the neck was too tight...ended up freaking out and tearing it off my body. Not good.
Re: New User Introduction
Even RX sleeping pills don't "put you under" like you think but I understand your concerns...do talk to your doctor about them though. Sometimes short term aid is an option. Always best to be talked over with your doctor. There's a risk vs rewards with any medication.
There are some "natural" ways to help promote sleep onset...a lot of forum members have good luck with melatonin short term in small doses. You can google natural sleep aids and get lots of ideas.
Others take a little 25 mg diphenhydramine (benadryl) tablet without issue (in that dose it is available OTC) and is what is commonly found in the various sleep time meds with "PM" in them to help promote sleep.
There are some "natural" ways to help promote sleep onset...a lot of forum members have good luck with melatonin short term in small doses. You can google natural sleep aids and get lots of ideas.
Others take a little 25 mg diphenhydramine (benadryl) tablet without issue (in that dose it is available OTC) and is what is commonly found in the various sleep time meds with "PM" in them to help promote sleep.
_________________
Machine: AirCurve™ 10 VAuto BiLevel Machine with HumidAir™ Heated Humidifier |
Additional Comments: Mask Bleep Eclipse https://bleepsleep.com/the-eclipse/ |
I may have to RISE but I refuse to SHINE.
Re: New User Introduction
Hello and welcome. Even in the best of circumstances, getting used to all the new sensations can take some time and effort. Add claustrophobia and other issues to the mix and the challenges increase. Doesn't make it impossible, though, so keep pushing forward.
What exactly does your report say about limb movements? Your mention of them being more with CPAP makes me curious. How many were there not related respiratory efforts, how many caused arousals, and did the report assign them a diagnosis? Having nights plagued with limb movements not related to breathing efforts made adjusting to CPAP use more difficult for me. My legs would wake me but the machine and mask got the blame and the brunt of my frustration. My limb movement disorder kept me in a state of irritation and sometimes even agitation so when I'd wake I simply could not tolerate the mask touching my face, the straps touching my head and face, the feel of the air, etc. Nothing pleased me during those times. I'd like to suggest to you to that your OSA treatment just may not be the sole cause of you not being able to fall asleep and stay asleep. While it did not change what I was feeling, it did help my frustration with CPAP and better enable me to persevere in tolerating it once I was aware that it was not solely to blame for my bad times.
What exactly does your report say about limb movements? Your mention of them being more with CPAP makes me curious. How many were there not related respiratory efforts, how many caused arousals, and did the report assign them a diagnosis? Having nights plagued with limb movements not related to breathing efforts made adjusting to CPAP use more difficult for me. My legs would wake me but the machine and mask got the blame and the brunt of my frustration. My limb movement disorder kept me in a state of irritation and sometimes even agitation so when I'd wake I simply could not tolerate the mask touching my face, the straps touching my head and face, the feel of the air, etc. Nothing pleased me during those times. I'd like to suggest to you to that your OSA treatment just may not be the sole cause of you not being able to fall asleep and stay asleep. While it did not change what I was feeling, it did help my frustration with CPAP and better enable me to persevere in tolerating it once I was aware that it was not solely to blame for my bad times.
_________________
Mask: TAP PAP Nasal Pillow CPAP Mask with Improved Stability Mouthpiece |
Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control |
Additional Comments: Bleep/DreamPort for full nights, Tap Pap for shorter sessions |
My SleepDancing Video link https://www.youtube.com/watch?v=jE7WA_5c73c
Re: New User Introduction
Welcome to the forum artension.
And as the honorary president of the CPAP&Insomnia Club, I bid you a sad welcome to it as well. May your membership be short. You might want to check out some of the links under my signature. They may give you some useful ideas on how to tackle the seemingly insurmountable task of teaching yourself how to sleep with a six foot hose attached to your nose.
You write:
No wonder your O2 levels dropped the way they did.
And the heart data indicates there are some potentially serious problems there as well---if you don't have daytime heart disease now, it's probably only a matter of time if you don't learn how to use the mask.
But you already know that. And you want to be successful. But you write:
My guess is that sensory overload is part of the problem.
You admit that there's been some claustophobia, but that that is getting better because you are acclimating yourself to the machine during the daytime by watching tv, working on the computer, and reading with the mask on. That's a big plus. Give yourself a large pat on the back and some other reward for dealing with the claustrophobia. But the reward should NOT be "Let's sleep without the mask tonight."
You also write:
And focusing on the breathing while trying to get to sleep with a new alien on your face is not exactly relaxing. Ideally you should not feel as though you have to change your breathing style to accommodate the machine. If you are feeling like you need to adjust the rate you are breathing in and out, it could be that C-Flex is causing more problems rather than helps. The C-Flex algorithm increases the pressure back up to your 11cm setting during the second half of your exhale. While that doesn't bother many people, it can bother some people quite a lot. And the tell-tale symptom that C-Flex is causing problems? It's when a newbie says something along the lines of "it feels like the machine is forcing me to breath" or "I just can't seem to get (or stay) in rhythm with the machine" or "I have to focus on getting my breathing into a rhythm that's comfortable with the machine."
And when you are drifting off and start breathing differently? That's actually normal: Normal sleep breathing does not look like (or feel like) normal wake breathing. Sleep breathing is more regular and more shallow than wake breathing. And it could very well be that with your apnea-filled "maskless" sleep you never get to a point where you establish something that even vaguely resembles normal sleep breathing. (You do, after all have roughly two events every minute you are asleep without a CPAP remember.)
And so it could be that whenever you try to use the mask your brain is misinterpreting your body's normal shift in breathing from wake breathing to normal sleep breathing. All your semiconscious brain can make of this new phenomenon is that it doesn't feel like what it's used to dealing with: It's not like the OAs you are used to sleeping through---your unconscious mind has been dealing (or attempting) to deal with those for years and you are still alive. But this new breathing pattern not normal wake breathing either. And the total airflow has dropped. So best wake up FULLY and let the conscious mind figure out what the heck is "wrong".
So what to do to get over the hump of focusing so much on your own breathing when you're trying to get to sleep and after you wake right back up having briefly fallen asleep?
What helped me was three things.
1) I started using an iPod in an iHome to play quiet, soothing music all night long. My choice is Gregorian chants. I can't focus on the words and keep myself awake that way. They all kind of melt into each other, so I can't keep myself awake saying, "After the next two songs comes one of my favorites and I'd like to hear it." And yet, they're different enough from each other that I can focus on the music instead of my breathing.
2) Waiting to go to bed until I am basically falling asleep on my feet. Like you, pre-CPAP I had a long sleep latency and I'd lie in bed thinking and daydreaming and letting my mind wander here and there. Mostly the wanderings were pleasant and I never really worried about how long it took to fall asleep. But even now, after almost 3 years of PAPing, I just plain get uncomfortable if I'm lying in bed for more than 20 minutes with the mask on my nose. On the rare nights this happens, I tend to get out of bed once the machine is irritating me rather than continue to lie there and get more frustrated. I'll go back to bed once I think I'm sleepy enough and calm enough to mask up again. Frustrating? Yes. But it happens a lot less now than it used to.
3) A switch from CPAP/APAP to a BiPAP. Try as I might, I could never quite get the hang of sleeping with my original Resmed S9 APAP. Without EPR turned on, I felt like I could not exhale completely. With EPR turned on, I felt like the machine was rushing my inhales. (And to all those S9 users: Yes, I know EPR is supposed to feel like a BiPAP; but it doesn't to me.) The switch to BiPAP took the edge off the "machine is rushing me to inhale before I'm done exhaling" feeling, and that allowed me to work more diligently on items 1 and 2 for getting to sleep every night.
Having said all that, I also want to add a few other things:
First, it's a shame you've got a brick. And that Tri-care paid for it outright. I'm not sure how to go about investigating whether that brick can be traded in for a PR System One PRO with full data or not. But in the early, darkest days of my PAPing, being able to look at the data coming off the S9 provided me with major motivation to keep on trying to make PAPing work. I knew the machine was doing its job in the sense of preventing the vast majority of my apneas. So I knew that it was my job to figure out a way of making this crazy thing work for me. Mine was a long, hard path to becoming a contented PAPer and had I not had the data, I don't know that I would have made it.
Second, you write:
Next tell her you are frustrated over using a brick. Let her know that you think having some data might help with the motivation.
If she suggests sleeping pills, tell her your concerns. Ask if there's a nurse or a PA who could work with you on some cognitive behavior therapy for addressing your adjustment issues and current insomnia-when-using-the-machine issues rather than relying solely on pills.
If/when she says you need a sleep test, ask whether she'd be ok with setting up a two week loaner of an APAP set to run with min=8 and max=20 so that she can look at the data over a two week period of sleep in your own bed to help figure out what the correct pressure should be.
If she won't do an APAP trial, then I'd encourage you to do the second sleep test sooner rather than later. Here's why:
And as the honorary president of the CPAP&Insomnia Club, I bid you a sad welcome to it as well. May your membership be short. You might want to check out some of the links under my signature. They may give you some useful ideas on how to tackle the seemingly insurmountable task of teaching yourself how to sleep with a six foot hose attached to your nose.
You write:
Shocking to say the least. To put that AHI=123.4 into perspective: Each apnea or hypopnea lasts at least ten seconds and your AHI indicates that on average you have at least two events per minute of sleep In other words, for every 60 seconds you are asleep, you are NOT breathing (or not breathing well) for at least 20 seconds. In other words, without the mask, you are spending fully 1/3 of the time that you are asleep NOT breathing or not breathing well enough to keep your body happy.artension wrote:It was fairly hard to chase down my report, and I finally got my hands on it last week. It was a shocker to say the least. Now if it could only shock me into successfully using it!!
....
AHI was 123.4 (Most apneas were OSA, about 10% were CSA)
SpO2 Nadir was 79% with 10.1 minutes <85%
CPAP was titrated to 11cm with a Total AHI of 11.6. SpO2 stayed above 90% during mask wear.
ECG Arrythmias noted with/without mask, sustained tachyrcardia, isolated PVC's.
...
Scary stuff!!! I have not seen too many AHI's on the forum higher than mine.
No wonder your O2 levels dropped the way they did.
And the heart data indicates there are some potentially serious problems there as well---if you don't have daytime heart disease now, it's probably only a matter of time if you don't learn how to use the mask.
But you already know that. And you want to be successful. But you write:
Right now you're dealing with a host of adjustment issues and you feel as though you just cannot fall asleep with the mask on your nose. So most of the time you just make a conscious decision to not even bother trying to sleep with the machine ("have only used it 7 or 8 time" but you've "had it for a few weeks") or you find yourself lying in bed fighting the machine and fighting to get to sleep and sleeping at most just a few minutes or so.So.....I have had it a few weeks now, and have only used it 7 or 8 times. The most I have been able to wear it so far was 3 nights ago when I wore it for 45 minutes, and then, a few minutes later, for another hour. Why such a poor job?
Because I have not been able to sleep with it on yet.
My guess is that sensory overload is part of the problem.
You admit that there's been some claustophobia, but that that is getting better because you are acclimating yourself to the machine during the daytime by watching tv, working on the computer, and reading with the mask on. That's a big plus. Give yourself a large pat on the back and some other reward for dealing with the claustrophobia. But the reward should NOT be "Let's sleep without the mask tonight."
You also write:
Yes, the feeling of air being blown down your upper airway can be quite distracting when you are trying to get to sleep. This is something that just about literally drove me insane during my first three months of PAPing---and I was using the machine every night all night long. If I'd been skipping most nights I never would have managed to learn to ignore that sensation. (More on this in a bit.)I think it is just the air coming into my mask, mouth (mouthbreather), etc, that keeps me focused on it instead of just letting my thoughts wander as I normally would pre-sleep. I find myself trying to get into a rhythym with my breathing that is comfortable and repeatable. The few times my thoughts drift off or I drift off, I breath differently (easy to do) or have an isolated OSA episode which brings me back to wakefullness, as breathing into a mask becomes more noticeable then. And I do check the clocks to have some sort of idea about how long I slept, but I am not a manic clock-watcher
And focusing on the breathing while trying to get to sleep with a new alien on your face is not exactly relaxing. Ideally you should not feel as though you have to change your breathing style to accommodate the machine. If you are feeling like you need to adjust the rate you are breathing in and out, it could be that C-Flex is causing more problems rather than helps. The C-Flex algorithm increases the pressure back up to your 11cm setting during the second half of your exhale. While that doesn't bother many people, it can bother some people quite a lot. And the tell-tale symptom that C-Flex is causing problems? It's when a newbie says something along the lines of "it feels like the machine is forcing me to breath" or "I just can't seem to get (or stay) in rhythm with the machine" or "I have to focus on getting my breathing into a rhythm that's comfortable with the machine."
And when you are drifting off and start breathing differently? That's actually normal: Normal sleep breathing does not look like (or feel like) normal wake breathing. Sleep breathing is more regular and more shallow than wake breathing. And it could very well be that with your apnea-filled "maskless" sleep you never get to a point where you establish something that even vaguely resembles normal sleep breathing. (You do, after all have roughly two events every minute you are asleep without a CPAP remember.)
And so it could be that whenever you try to use the mask your brain is misinterpreting your body's normal shift in breathing from wake breathing to normal sleep breathing. All your semiconscious brain can make of this new phenomenon is that it doesn't feel like what it's used to dealing with: It's not like the OAs you are used to sleeping through---your unconscious mind has been dealing (or attempting) to deal with those for years and you are still alive. But this new breathing pattern not normal wake breathing either. And the total airflow has dropped. So best wake up FULLY and let the conscious mind figure out what the heck is "wrong".
So what to do to get over the hump of focusing so much on your own breathing when you're trying to get to sleep and after you wake right back up having briefly fallen asleep?
What helped me was three things.
1) I started using an iPod in an iHome to play quiet, soothing music all night long. My choice is Gregorian chants. I can't focus on the words and keep myself awake that way. They all kind of melt into each other, so I can't keep myself awake saying, "After the next two songs comes one of my favorites and I'd like to hear it." And yet, they're different enough from each other that I can focus on the music instead of my breathing.
2) Waiting to go to bed until I am basically falling asleep on my feet. Like you, pre-CPAP I had a long sleep latency and I'd lie in bed thinking and daydreaming and letting my mind wander here and there. Mostly the wanderings were pleasant and I never really worried about how long it took to fall asleep. But even now, after almost 3 years of PAPing, I just plain get uncomfortable if I'm lying in bed for more than 20 minutes with the mask on my nose. On the rare nights this happens, I tend to get out of bed once the machine is irritating me rather than continue to lie there and get more frustrated. I'll go back to bed once I think I'm sleepy enough and calm enough to mask up again. Frustrating? Yes. But it happens a lot less now than it used to.
3) A switch from CPAP/APAP to a BiPAP. Try as I might, I could never quite get the hang of sleeping with my original Resmed S9 APAP. Without EPR turned on, I felt like I could not exhale completely. With EPR turned on, I felt like the machine was rushing my inhales. (And to all those S9 users: Yes, I know EPR is supposed to feel like a BiPAP; but it doesn't to me.) The switch to BiPAP took the edge off the "machine is rushing me to inhale before I'm done exhaling" feeling, and that allowed me to work more diligently on items 1 and 2 for getting to sleep every night.
Having said all that, I also want to add a few other things:
First, it's a shame you've got a brick. And that Tri-care paid for it outright. I'm not sure how to go about investigating whether that brick can be traded in for a PR System One PRO with full data or not. But in the early, darkest days of my PAPing, being able to look at the data coming off the S9 provided me with major motivation to keep on trying to make PAPing work. I knew the machine was doing its job in the sense of preventing the vast majority of my apneas. So I knew that it was my job to figure out a way of making this crazy thing work for me. Mine was a long, hard path to becoming a contented PAPer and had I not had the data, I don't know that I would have made it.
Second, you write:
Talk to your doctor and tell her what's going on. Tell her you've only been able to even try to sleep with the mask a handful of times. Tell her you have worked on acclimating yourself to the mask in the daytime and that while you feel as though you are no longer claustrophobic, you still are having problems because (in your words): "most of the [problems] I feel is when the machine is running full blast. At that point it feels hard to regulate my breathing with the air pouring into my mask." Then tell her that on those rare occasions when you try to get to sleep with the mask on, you find that just as you're drifting off to sleep, something wakes you right back up and you then can't get back to sleep for what feels like an hour or more if you keep the mask on.I have not talked to my doctor about it yet. She wants me to do another sleep study which I am sure will raise the sure even higher, the way she interprets my report. I am not gung-ho on the idea, but am willing to, ONCE I am able to at least partially tolerate and sleep with what I have now. Otherwise it will be a failure waiting to happen.
Next tell her you are frustrated over using a brick. Let her know that you think having some data might help with the motivation.
If she suggests sleeping pills, tell her your concerns. Ask if there's a nurse or a PA who could work with you on some cognitive behavior therapy for addressing your adjustment issues and current insomnia-when-using-the-machine issues rather than relying solely on pills.
If/when she says you need a sleep test, ask whether she'd be ok with setting up a two week loaner of an APAP set to run with min=8 and max=20 so that she can look at the data over a two week period of sleep in your own bed to help figure out what the correct pressure should be.
If she won't do an APAP trial, then I'd encourage you to do the second sleep test sooner rather than later. Here's why:
- It appears you had a split night study and you never hit REM. So your current pressure is something of a guess. And you had roughly 10% CAs on your first sleep study. So there's a chance that you may develop complex sleep apnea if all they do is simply blindly increase the pressure on your brick. A full night of titration may very well give a better starting guess for your needed pressures.
- If the tech has to increase the pressure up to 15cm OR if you are clearly intolerant of the pressure needed to control your OAs, the tech may be able to switch you to a BiPAP titration. In a BiPAP titration there are two pressures, one for inhalation and one for exhalation. For some people, the average pressure needed to control the apnea is less while on a BiPAP than it is on straight CPAP.
- If you wake (or can't get to sleep) during the sleep test because of the pressure, you can complain to the tech. S/he can adjust the pressure back down (for a while) to see if that helps you tolerate the pressure and to see just how inadequate a lower pressure might be at controlling the apnea. The data may also indicate whether you are sensitive to pressure in the form of additional spontaneous arousals. All of which might allow for you to replace the brick with a better machine.
You have more control than you think you do when it comes to teaching yourself how to sleep with the mask. You have to make the decision (each and every night) to not go to bed without at least trying to get to sleep with the mask on your face. As long as you continue to only use the mask part time, the part of your unconscious mind that is refusing to go to sleep with the mask on your face will continue to win and you'll be treading water.In the meantime, I am going to ramp up my attempts at losing weight, something I have a little more control over.
_________________
Machine: DreamStation BiPAP® Auto Machine |
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear |
Additional Comments: PR System DreamStation and Humidifier. Max IPAP = 9, Min EPAP=4, Rise time setting = 3, minPS = 3, maxPS=5 |
Re: New User Introduction
Robysue,
Thanks for the detailed reply. Its great getting all this information from folks who have "been there" .
I hope that I did not mislead you in one area. Although I have worn the mask in the daytime, I have not worn it with the CPAP attached and on. The main reason is that I wonder if it will be very bothersome at 11cm due to the fact that I am awake and thus my airway is opening and closing without issue. I've always thought that might be really unpleasant and perhaps even be deconstructive to what I am trying to accomplish. Can't really find any posts on the forums about that, what has been your experience?
I wonder about the C-flex usefulness when actually approaching sleep also. I can't remember if it was on during my sleep study or not. I actually think not - that maybe the tech did a ramping up from her "console" but the air I got was a steady flow. I might have to bravely check it out soon without C-flex. I will also try it with a setting of 1 and 3 first to see what it feels like.
A Bi-pap may be in my future, but I think another sleep study is probably a must, as much as I dread it. Like you said, the one I had was not completely successful at reducing my events to the acceptable level. I called my DME and referring doctor today, and they said my only hope for upgrading to a RemStar Pro or any other data recording machine would be if I had another sleep study and the doctor, after viewing the results, deemed it necessary to have such a device. Or I can take his prescription at that time and pay for a better machine out of my own pocket.
In the meantime, I have not used the machine/mask for 4 days under the guise of giving it its first weekly cleaning. Which I have not managed to do yet.
I will get it done first thing in the morning and wear the mask with the machine on tomorrow night for as long as I can. Thanks again!
Dan
Thanks for the detailed reply. Its great getting all this information from folks who have "been there" .
I hope that I did not mislead you in one area. Although I have worn the mask in the daytime, I have not worn it with the CPAP attached and on. The main reason is that I wonder if it will be very bothersome at 11cm due to the fact that I am awake and thus my airway is opening and closing without issue. I've always thought that might be really unpleasant and perhaps even be deconstructive to what I am trying to accomplish. Can't really find any posts on the forums about that, what has been your experience?
I wonder about the C-flex usefulness when actually approaching sleep also. I can't remember if it was on during my sleep study or not. I actually think not - that maybe the tech did a ramping up from her "console" but the air I got was a steady flow. I might have to bravely check it out soon without C-flex. I will also try it with a setting of 1 and 3 first to see what it feels like.
A Bi-pap may be in my future, but I think another sleep study is probably a must, as much as I dread it. Like you said, the one I had was not completely successful at reducing my events to the acceptable level. I called my DME and referring doctor today, and they said my only hope for upgrading to a RemStar Pro or any other data recording machine would be if I had another sleep study and the doctor, after viewing the results, deemed it necessary to have such a device. Or I can take his prescription at that time and pay for a better machine out of my own pocket.
In the meantime, I have not used the machine/mask for 4 days under the guise of giving it its first weekly cleaning. Which I have not managed to do yet.
I will get it done first thing in the morning and wear the mask with the machine on tomorrow night for as long as I can. Thanks again!
Dan
Re: New User Introduction
Unpleasant? Probably.artension wrote:Robysue,
Thanks for the detailed reply. Its great getting all this information from folks who have "been there" .
I hope that I did not mislead you in one area. Although I have worn the mask in the daytime, I have not worn it with the CPAP attached and on. The main reason is that I wonder if it will be very bothersome at 11cm due to the fact that I am awake and thus my airway is opening and closing without issue. I've always thought that might be really unpleasant and perhaps even be deconstructive to what I am trying to accomplish. Can't really find any posts on the forums about that, what has been your experience?
Deconstructive? No. It won't hurt you to wear the mask with the blower unit going while awake. And even though it will be unpleasant at the start, getting use to the feeling of the air flow is part of the acclimation process. Besides, you may just find the mask less hot and less claustrophobic with some air blowing through it.
My own experience, however, is not really relevant in this particular situation. I had no claustrophobia problems. Right from the start I could keep the mask on all night, but I simply could not fall asleep with it blowing air down my gut for extremely long periods of time. And the discomfort of lying in bed while not being able to get to sleep lead to the bedtime dreads, which lead to the insomnia monster moving in. And so I resisted all the advice to practice with the machine in the daytime because I was worried that such practice would feed the growing insomnia monster. In pre-CPAP bouts with insomnia, reserving the bedroom for only SLEEP/SEX was the critical tool for taming the insomnia and since I could keep the mask on all night, I didn't think practicing in the bedroom would do any good and the idea of dragging the machine out to practice in the living room was intolerable to my poor stomach: The aerophagia would kick in withing 15 minutes of masking up if I was awake.
But in retrospect, a bit of daytime practice probably would have helped me. What would have helped me more, however, would have been more careful attention to keeping a standard wake up time regardless of how little sleep I'd gotten and putting off going to bed until I was falling asleep on my feet rather than simply trying to go to bed some of the time at my old bedtime and fighting the machine. Once the insomnia started I spent several months ineffectively fighting it while it was growing stronger and stronger. But I was also dealing with significant aerophagia issues and they were not fully resolved until the switch to BiPAP, which happened not quite three months after I started CPAP. Less than a week after starting BiPAP, however, I was willing to listen to the PA who'd been telling me I needed to do more to fight the insomnia. And jointly we came up with the CBT for Insomnia plan that finally reined my insomnia under a reasonable amount of control.
For that first titration, the pressure usually starts at 4cm and is left at 4cm until you fall asleep and start having events. And at 4cm of pressure, C-Flex doesn't do anything since the machine will never lower the pressure below 4cm. (That much pressure is needed to ensure that the mask will sufficiently vent the CO2 from your exhalations when the mask is attached to the machine.)I wonder about the C-flex usefulness when actually approaching sleep also. I can't remember if it was on during my sleep study or not. I actually think not - that maybe the tech did a ramping up from her "console" but the air I got was a steady flow. I might have to bravely check it out soon without C-flex.
And then once you are asleep, the tech uses a formal titration algorithm to determine when to increase the pressure and by how much. There's also a part of the algorithm that deals with when to potentially decrease the pressure. And one criteria for decreasing pressure is if the patient wakes up and complains of being uncomfortable. But once the patient is back asleep, if more events occur, the tech again starts to increase the pressure.
The whole idea of the ramp is to make you more comfortable so that you can get to sleep shortly before the ramp period ends. But if there's a huge difference between the starting ramp pressure and the final prescribed pressure setting, then it's possible for some folks to notice the steadily increasing pressure and that too can be a nuisance when you're trying desperately to get to sleep. The trick here is to increase the starting ramp up as high as you can comfortably tolerate so that the increase in pressure is more gradual and less noticeable. And that's another reason for practicing with the pressure on during the daytime. You may find that you can comfortably breath at 4, 5, 6, and 7 cm, but that once the pressure hits 8cm you start to feel uncomfortable. In that case, starting the ramp at 6 may make things easier because the pressure rise from 7 to 11 cm will be gentler than the pressure rise from 4 to 11cm is.
And how can you tell what pressure is blowing at you in the daytime when you are trying to determine when the pressure becomes intolerable? If you look at the LCD during the ramp period it will tell you what the current pressure is. So you can watch how fast it has to go up in order to increase the pressure from 4cm to 11cm.
Don't use "weekly cleaning" as an excuse to not use the mask. I used to dread all the cleaning, cleaning, cleaning. And would put it off until close to bedtime. And then the mere act of doing the cleaning would wake me up and make more difficult to get to sleep.In the meantime, I have not used the machine/mask for 4 days under the guise of giving it its first weekly cleaning. Which I have not managed to do yet.
I will get it done first thing in the morning and wear the mask with the machine on tomorrow night for as long as I can. Thanks again!
Dan
Cleaning in the morning is best. But I'm not a morning person. Never have been and I don't think I ever will be. And over the years I've learned that I worried too much about the cleaning in the beginning. If the hose isn't washed on time, it's not a big deal. If the humidifier tank goes a day or two longer, it's not a big deal. Even the mask seal doesn't have to be washed every single day; it's best if it is, but if the choice is between using the mask with a seal that didn't get cleaned that morning or no mask, 'tis better to use the dirty mask than to sleep without the machine.
I'll hold you to your promise: Come Tuesday's bedtime, I'll nag you to remember that promise you made.
_________________
Machine: DreamStation BiPAP® Auto Machine |
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear |
Additional Comments: PR System DreamStation and Humidifier. Max IPAP = 9, Min EPAP=4, Rise time setting = 3, minPS = 3, maxPS=5 |
Re: New User Introduction
Well here it is nearly 2 weeks later. What did I do in that time? Not a thing. Shelved the CPAP. Life was getting busier and more stressful, and I felt like I was sleeping better, even having dreams some times, without the CPAP. Seeing I was not sleeping at all, basically, with it. Now I am going to have to start all over again, with the claustrophobia, and all the rest.
I apologize to all of you who took time out to read my previous comments and assist me. I have re-read yours today and am going to use your advice....now.
I apologize to all of you who took time out to read my previous comments and assist me. I have re-read yours today and am going to use your advice....now.
Re: New User Introduction
Welcome back artension.
A point in your favor: You're starting over after only couple of weeks of shelving the CPAP and ignoring it. Lots of folks toss it in the closet and don't come back for months or years---often choosing to restart the process only after a significant health scare caused by something directly tied to the damage the untreated apnea has done to their body.
Best of luck as you restart your journey.
A point in your favor: You're starting over after only couple of weeks of shelving the CPAP and ignoring it. Lots of folks toss it in the closet and don't come back for months or years---often choosing to restart the process only after a significant health scare caused by something directly tied to the damage the untreated apnea has done to their body.
Best of luck as you restart your journey.
_________________
Machine: DreamStation BiPAP® Auto Machine |
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear |
Additional Comments: PR System DreamStation and Humidifier. Max IPAP = 9, Min EPAP=4, Rise time setting = 3, minPS = 3, maxPS=5 |