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Struggling
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dancutmore Offline

Members

Posts: 7
Joined: Jun 2015

Machine: F&P +Premo
Mask Type: Nasal mask
Mask Make & Model: Philips Wisp
Humidifier: Built in to machine
CPAP Pressure: 9
CPAP Software: SleepyHead

Other Comments:

Sex: Male
Location:

Post: #1
Struggling
Hi guys,
I have been on CPAP now for 5 months and I am weighing up whether it is worth continuing as I am just not seeing enough improvement for the inconvenience it causes. I was diagnosed as severe and thus bought myself a cpap and nasal pillow mask. Immediately, my AHI went down to under 5, I didn't feel any better buuut after research, I found that it may take a while to feel results. The nasal pillow mask was horrible and irritated my nose, I persevered for a month or so, but felt it was hindering my sleep so I changed to a nasal mask (Resmed I think) This mask felt much better on my face and didn't bother me as much to begin with as it was just faaaar more comfortable. After a while though, I realised it was leaking quite a bit whenever I moved, which was causing me to stir and most nights I would find that I had taken the mask off or it had fallen off (the straps aren't exactly secure on these guys) I eventually decided to go to the Philips wisp mask, which is good and comfortable with a much more secure strap that seems to keep the mask on my head. I still feel pretty crappy most days with the only benefit I am feeling is not falling asleep so easily during movies and shows. I don't know where to turn, I want to feel good, I want to feel rested and I have spent all of this money and I am just not getting results. My AHI's are consistently around the 1 mark, which from what I understand is fantastic, so what is going on? Leakage is around 30 most nights. I don't know if that is good or bad. I have gone and messed with settings in the past only to wind up back to pretty much the original settings as they seem to get the best AHI results for me. Obviously, I am not snoring any more, so the wife is happy, but I thought I would feel much better by now. Any help or advice would be greatly appreciated. If you need me to provide more info, I should be able to provide more when I get home and plug into SleepyHead.
Cheers
Still foggy Dan
06-18-2015 10:15 PM
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trailrider Offline

Preferred Members-2

Posts: 304
Joined: Feb 2015

Machine: A10 Autoset for Her
Mask Type: Nasal mask
Mask Make & Model: Eson or P10
Humidifier: autoset
CPAP Pressure: 6-12 DME, 7-13 me
CPAP Software: SleepyHead

Other Comments: engineer. EPR at 3, unheated hose, humidity at 2. Routine hose entanglement.

Sex: Female
Location: Ontario

Post: #2
RE: Struggling
You may need to try more mask styles. The whole process of getting used to it all is annoying and frustrating. You know you feel a bit better with therapy. The lack of daytime fatigue is a great sign! Your body needs the O2 and your brain needs the undisturbed rest. Simple as that. And xPAP is the simplest way to achieve this.

Try for at least 4 hours of therapy a night. If the mask falls off towards morning, skip it and get your rest. I read elsewhere that tightening the strap OPPOSITE the leak helps more.

Feeling better can take months. And we don't always recognize tiny increments.
06-18-2015 10:28 PM
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dancutmore Offline

Members

Posts: 7
Joined: Jun 2015

Machine: F&P +Premo
Mask Type: Nasal mask
Mask Make & Model: Philips Wisp
Humidifier: Built in to machine
CPAP Pressure: 9
CPAP Software: SleepyHead

Other Comments:

Sex: Male
Location:

Post: #3
RE: Struggling
Thanks for the response and advice. I just can't afford to keep buying masks at $200 a pop. I feel like this mask is comfortable enough and I am getting used to it. I am definitely getting 4 hours, most of the time 6 hours at least. I didn't know about the tightening opposite the leak thing, so I will give that a go. The problem I have though is that when I go to sleep I don't have any leaks and yet every night there appears to be leaks.
Thanks again for you response, much appreciated.
06-18-2015 10:40 PM
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quiescence at last Offline

Advisory Members

Posts: 753
Joined: Nov 2014

Machine: REMstar System One with Autoflex
Mask Type: Full face mask
Mask Make & Model: Quattro AirFit F10
Humidifier: yes typical setting = 4
CPAP Pressure: 5-13 Autotritrating CPAP
CPAP Software: SleepyHead EncoreBasic

Other Comments: CMS-50F Plus oximeter /w SPO2 Assistant software. Avowed mouth-breather switching to nose-breathing

Sex: Male
Location: US

Post: #4
RE: Struggling
hi, I usually request the following info from people that have AHI in the 0-2 range and still feel foggy. do you remember having dreams (not necessarily remembering the contents) but that you were dreaming?

is your foggy a sleepiness, a distractedness, a fatigue, confusion, tiredness and soreness, or just a calm not wanting to move-ish-ness?

one great result for me also was the not snoring, at least at the 90 decibel level. now I have whisper snores at most. no more (waking, shaking) the household.

maybe we can get you to post some images of a few nights (after you are around the forum for a while). posting images and links are something you will be able to do once you have posted several more times.

welcome dancutmore, and good luck!

QAL

Dedicated to QALity sleep.
You'll note I am listed as an Advisory Member. I am honored to be listed as such. See the fine print - Advisory Members as a group provide advice and suggestions to Apnea Board administrators and staff concerning Apnea Board operation and administrative policies. Membership in the Advisory Member group should not be understood as in any way implying medical expertise or qualification for advising Sleep Apnea patients concerning their treatment.
06-18-2015 11:29 PM
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dancutmore Offline

Members

Posts: 7
Joined: Jun 2015

Machine: F&P +Premo
Mask Type: Nasal mask
Mask Make & Model: Philips Wisp
Humidifier: Built in to machine
CPAP Pressure: 9
CPAP Software: SleepyHead

Other Comments:

Sex: Male
Location:

Post: #5
RE: Struggling
That is actually something I have noticed. I don't seem to be dreaming as often. Every now and then I have a dream that I remember but for the most part, I have no idea what happens for that 7 hours or so I am in bed. What I do know, is that sometimes I wake up with the hose wrapped around my neck which I assume is me tossing and turning and not the wife trying to choke me lol. I would describe my fogginess as just lazy not wanting to move, sometimes sleepy/tired/yawning, staring off into the distance. I assume you mean images of my results from SleepyHead? I would be happy to do that, is there any other way I can do that?
06-18-2015 11:40 PM
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me50 Offline

Advisory Members

Posts: 2,559
Joined: Aug 2013

Machine: resmed S9 VPAP Auto
Mask Type: Nasal mask
Mask Make & Model: Wisp and Silicone Head gear
Humidifier: resmed H5i
CPAP Pressure: 18/8
CPAP Software: SleepyHead

Other Comments:

Sex: Undisclosed
Location: USA

Post: #6
RE: Struggling
(06-18-2015 10:40 PM)dancutmore Wrote:  Thanks for the response and advice. I just can't afford to keep buying masks at $200 a pop. I feel like this mask is comfortable enough and I am getting used to it. I am definitely getting 4 hours, most of the time 6 hours at least. I didn't know about the tightening opposite the leak thing, so I will give that a go. The problem I have though is that when I go to sleep I don't have any leaks and yet every night there appears to be leaks.
Thanks again for you response, much appreciated.

Since you had trouble with 2 other masks it would be hard to really count that as cpap therapy because either you took the mask off or there were leaks or whatever that caused you not to get good therapy. Now that you have a mask you think is working, give it time so you can catch up on the years of sleep depravation and repairing your body. It is worth the effort and a whole lot better than waking up dead and leaving your wife and family without you.
06-19-2015 02:00 AM
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GWild Offline

Preferred Members

Posts: 88
Joined: May 2014

Machine: RemStar Sys1 560P
Mask Type: Nasal mask
Mask Make & Model: Ultra Mirage
Humidifier: Sys1
CPAP Pressure: 8 - 20 auto / 8.9 avg
CPAP Software: SleepyHead EncoreBasic

Other Comments:

Sex: Undisclosed
Location:

Post: #7
RE: Struggling
I'll add to the 'hang in there' sentimentality. It took me three or four masks to find one that I can actually use. Ultra-Mirage II. Large, bulky, but the large straps - when newer - work amazingly well for a bearded guy. Face-planting into a pillow isn't good, but most other positions work well - with leaks - but those are mostly beard related and go away when I shave (or wake and tweak the mask position).

The fact you aren't falling asleep during the day is an indicator the therapy is working; so consider how long you suffered poor sleep and how your body has acclimated to that old state. It will take a while to start moving again, but it can happen if you let it.

To me, an AHI of 5 is marginal - you really want it lower, under 2 is my goal, even with a leaky beard. I averaged 2.3 this past year, and down to 2.0 the past month --- and I hit a low of 0.93 a few weeks back (woot). I read of folk here who average under 1... pretty amazing. You can do better than 5.

And remember that AHI number means that you're probably waking up from sleep that many times per hour... and that may be why you are also tossing and turning -- a defense against running out of air even 5 times an hour.

There are places out there that don't charge arms and legs for masks ... ask around here for ideas that might work better for you, then diligently shop the web for them. I think I paid under $75 for my mask the last time I replaced it --- new parts are a lot less --- gasket, strap, hose. So once you find a good fit, keeping it working like new is pretty inexpensive.
06-19-2015 02:36 AM
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quiescence at last Offline

Advisory Members

Posts: 753
Joined: Nov 2014

Machine: REMstar System One with Autoflex
Mask Type: Full face mask
Mask Make & Model: Quattro AirFit F10
Humidifier: yes typical setting = 4
CPAP Pressure: 5-13 Autotritrating CPAP
CPAP Software: SleepyHead EncoreBasic

Other Comments: CMS-50F Plus oximeter /w SPO2 Assistant software. Avowed mouth-breather switching to nose-breathing

Sex: Male
Location: US

Post: #8
RE: Struggling
A previous post on the subject of how you can post links from imgur.com is:
http://www.apneaboard.com/forums/Thread-...#pid110420

and a further refinement is discussed in:
http://www.apneaboard.com/forums/Thread-...1#pid64061

what attributes to post, usually for a first look-see we like as described and shown in:
http://www.apneaboard.com/forums/Thread-...#pid102541

when I try to solve some puzzles I like more things, like shown in a past post:
http://www.apneaboard.com/forums/Thread-...#pid102209

I like resp rate, insp time, exp time, and TV added.

ps. I changed the y-axis settings on most of my waveforms since it helps compress the data to a single screenshot and shows at a standard scale for night-to-night comparisons.

only try what you are comfortable with.

if you do have a sleepyhead image on the web but can't post it --
you can also strip off the http:// from the beginning and put ! in its place, and address information will appear as text (example below)

QAL

!www.apneaboard.com/forums/newreply.php?tid=9957&processed=1

Dedicated to QALity sleep.
You'll note I am listed as an Advisory Member. I am honored to be listed as such. See the fine print - Advisory Members as a group provide advice and suggestions to Apnea Board administrators and staff concerning Apnea Board operation and administrative policies. Membership in the Advisory Member group should not be understood as in any way implying medical expertise or qualification for advising Sleep Apnea patients concerning their treatment.
06-19-2015 06:00 AM
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Mark Douglas Offline

Advisory Members

Posts: 513
Joined: Apr 2015

Machine: Sys 1 (60) RemStar BiPAP Auto with Bi-Flex 760P Auto Bi-Level (Variabl
Mask Type: Nasal mask
Mask Make & Model: PR Wisp
Humidifier: PR Sys One heated
CPAP Pressure: RiseTime 3 Fxd E-9.0 / I-11.5
CPAP Software: SleepyHead EncoreBasic

Other Comments: Hashimoto's thyroiditis.

Sex: Male
Location: SW Ohio

Post: #9
RE: Struggling
I use the wisp. Very comfortable and adjusted properly doesn't leak much at all. Have to wash it frequently and face every night as facial oil can increase leakage. I suspect you have same problem I have. Once you get into deep sleep you relax and then get leaks internally and out your mouth. This arouses you just enough to ruin your sleep but maybe not enough to completely wake you. Once aroused you reseat your tongue and go back to sleep......all....night....long.... I have tried three FFMs so far and as a self pay I feel for your pain$. I am using the chin part of a chin strap and stick it to the wisp head gear and is better but not complete solution. (thanks to who ever first suggested the partial chin strap idea!)

I use my PAP machine nightly and I feel great!
Updated: Philips Respironics System One (60 Series)
RemStar BiPAP Auto with Bi-FlexModel 760P -
Rise Time x3 Fixed Bi-Level EPAP 9.0 IPAP 11.5 (cmH2O)
06-19-2015 06:53 AM
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MobileBasset Offline

Advisory Members

Posts: 198
Joined: May 2015

Machine: ResMed AIRCURVE 10 V Auto
Mask Type: Nasal mask
Mask Make & Model: Fisher Paykel Zest
Humidifier: Integrated
CPAP Pressure: 10 (minE 6,maxI 12, PS 3)
CPAP Software: ResScan SleepyHead Other Software

Other Comments:

Sex: Female
Location: Florida

Post: #10
RE: Struggling
(06-19-2015 06:53 AM)Mark Douglas Wrote:  .....Once you get into deep sleep you relax and then get leaks internally and out your mouth. This arouses you just enough to ruin your sleep but maybe not enough to completely wake you. Once aroused you reseat your tongue and go back to sleep......all....night....long....

I agree with this. The mouth leaks were arousing me all during the night and I discovered them on the ResScan data when I got my new data capable device. I tried a serious chin strap to correct the problem and felt the difference right away. Once I corrected the problem I have experimented with just how much chin strap is necessary to control it.

if you can't decide then you don't have enough data.
06-19-2015 07:28 AM
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