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Venting
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ISnoreBadly Offline

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Joined: Jul 2015

Machine: PR System One REMStar Pro 560
Mask Type: Nasal pillows
Mask Make & Model: PR DreamWear Nasal Mask
Humidifier: PR System One
CPAP Pressure: 12
CPAP Software: SleepyHead

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Sex: Male
Location: Lawn Guyland, Noo Yawk

Post: #1
Gross Venting
I've been a hosehead for a little more than 3 months now. After the first week I felt better but since then I've been sliding down hill, these days I feel much worse than I did before I started therapy. Around 2 PM every day I hit a wall, my eyes get heavy and my brain fogs up. From that point on I'm pretty much useless. I can't stand the taste of coffee and don't drink anything with caffeine (except for an iced tea now and then) so downing a few cups of Joe isn't an option.

At night I feel that I'm not sleeping nearly as deep as I did before I started therapy. I wake up often during the night, sometimes because my mask has come off and my wife nudges me to put it back on, other times just because. No matter what time I go to bed I can't seem to sleep past 6 AM, even on the weekends when nobody else is up I find my eyes open and feel like there's no way I can get back to sleep. Dont-know

My AHI is decent - the average for the last 94 days is 2.46 - and my doctor tells me I'm doing "great". But I don't feel like I'm doing great at all. Some nights when I'm laying in bed trying to get comfortable with this plastic thing stuck up my nose and the straps sliding around on my head I think about just chucking the whole thing and going back to snoring and gasping. But I know that's not a good idea, it's better to be uncomfortable than dead. Oh-jeez

I don't really have a question I guess I'm just venting. I truly hope I start to feel better one day because dragging my ass all day long is getting old. And before anybody says something no, I'm not depressed or suicidal. Just aggravated.
10-06-2015 03:14 PM
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justMongo Offline

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Machine: ResMed VPAP Auto (S9)
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Post: #2
RE: Venting
Perhaps other causes should be looked at.
Say, perhaps: Weight, medications, diabetes, certain viruses, et cetera.

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10-06-2015 04:42 PM
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zonk Offline

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Machine: A10 AutoSet
Mask Type: Nasal mask
Mask Make & Model: Activa LT
Humidifier: Integrated /ClimateLineAir
CPAP Pressure: 9/13
CPAP Software: ResScan

Other Comments: CPAP since Nov 2010

Sex: Male
Location: Australia

Post: #3
RE: Venting
Something has changed and for whatever reason, you don't feel the therapy working as before
CPAP machine can only fix problems related to sleep apnea, not other unrelated problems
Medication or OTC, depression, stress at work or home, fatigue, etc ...

AHI 2.4 might be good enough but really like to see it much lower and doesn't tell the full story
You'll need check sleepyhead if the events are grouped together in clusters, type of apnea (obstructive or clear airways), large leak and whether pressure is maxing out for a good chunk of the night

Last but not least, comfort play an important part, mask feel uncomfortable or wrong size, air feel too warm or too cold, mattress, pillows, etc

We can only try figuring out, might get lucky in the process ...
(This post was last modified: 10-06-2015 04:45 PM by zonk.)
10-06-2015 04:44 PM
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ISnoreBadly Offline

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Posts: 117
Joined: Jul 2015

Machine: PR System One REMStar Pro 560
Mask Type: Nasal pillows
Mask Make & Model: PR DreamWear Nasal Mask
Humidifier: PR System One
CPAP Pressure: 12
CPAP Software: SleepyHead

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Sex: Male
Location: Lawn Guyland, Noo Yawk

Post: #4
RE: Venting
justMongo Wrote:Perhaps other causes should be looked at.
Say, perhaps: Weight, medications, diabetes, certain viruses, et cetera.

My weight and medications (blood pressure, cholesterol) are the same as they were when I started. I'm not diabetic, in fact I had blood work done 2 weeks ago and the only issue is my HDL is a little low.

zonk Wrote:AHI 2.4 might be good enough but really like to see it much lower and doesn't tell the full story

2.4 is the average over 90 days, I've had nights where its 0.5 and others where its 6+. The last week average was 1.67, the last 30 days is 2.12.

zonk Wrote:You'll need check sleepyhead if the events are grouped together in clusters, type of apnea (obstructive or clear airways), large leak and whether pressure is maxing out for a good chunk of the night

I have a mixture of clear airway and obstructive apneas but the obstructive have always been more frequent. I was having issues with large leaks being recorded but I've fixed that by enabling the auto-off function on the machine so it's not recording leaks when the mask is off and by keeping the mask on for longer at night.

The pressure is not maxing out for most of the night. I have it set from 10.5 - 16, over the last week or so the majority of the time its been in the 10 - 11 range.

There are a bunch of clustered events in the SleepyHead data. I can post some graphs if necessary...
10-06-2015 06:07 PM
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surferdude2 Online

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Machine: ResMed S9 AutoSet
Mask Type: Full face mask
Mask Make & Model: Mirage Quattro & Optilife
Humidifier: ResMed H5i @ #3 if nose breathing & #5 if mouth breathing
CPAP Pressure: 12 ~ 20 & 11 ~12 if nasal mask
CPAP Software: ResScan SleepyHead

Other Comments: Late stage 2 emphysema

Sex: Male
Location: Mousetown, Southern Illinois

Post: #5
RE: Venting
It may take longer than you have given it for the therapy to pay full dividends. I found when first starting CPAP therapy that I had the same experience that you describe. I surmised that there is just so much sleep that you can get with the new discomfort of the mask and pressure. That sleep is deeper than without therapy but is shorter in duration. That leads to afternoon sagging syndrome. It took over a year for that to go away and enable me to get more than 5 hrs. sleep nightly. I eventually have been able to get 6 1/2 hours nightly, which is my lifelong standard so it was just a matter of becoming as one with the mask and pressure.

The simple explanation is, you have to be really sleepy to be able to get to sleep with this stuff on your face and blowing air against you. It'll get better but it takes some longer than others. If you can get to the point where you don't notice it on your face when you wake up, you've arrived!

Dude
10-06-2015 06:28 PM
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ISnoreBadly Offline

Advisory Members

Posts: 117
Joined: Jul 2015

Machine: PR System One REMStar Pro 560
Mask Type: Nasal pillows
Mask Make & Model: PR DreamWear Nasal Mask
Humidifier: PR System One
CPAP Pressure: 12
CPAP Software: SleepyHead

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Sex: Male
Location: Lawn Guyland, Noo Yawk

Post: #6
RE: Venting
(10-06-2015 06:28 PM)surferdude2 Wrote:  The simple explanation is, you have to be really sleepy to be able to get to sleep with this stuff on your face and blowing air against you. It'll get better but it takes some longer than others. If you can get to the point where you don't notice it on your face when you wake up, you've arrived!

I don't really have a problem falling asleep, since when I get into bed I'm usually exhausted. But I really don't think I'm getting to that deep rejuvenating sleep. Once or twice over the last few months I had taken the mask off shortly after falling asleep and slept the whole night without it and felt rested in the morning - even though I was snoring like a freight train all night long. I can't remember waking up after a night of CPAP and saying "Man, I slept great last night!".

I've seen people saying it can take months or years even to start to feel better I was hoping that I'd get to that point faster than that. Unsure
10-06-2015 06:36 PM
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surferdude2 Online

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Machine: ResMed S9 AutoSet
Mask Type: Full face mask
Mask Make & Model: Mirage Quattro & Optilife
Humidifier: ResMed H5i @ #3 if nose breathing & #5 if mouth breathing
CPAP Pressure: 12 ~ 20 & 11 ~12 if nasal mask
CPAP Software: ResScan SleepyHead

Other Comments: Late stage 2 emphysema

Sex: Male
Location: Mousetown, Southern Illinois

Post: #7
RE: Venting
A test of sleep quality for some people is whether they dream or not. It's not important to remember exactly what you dream about but just that you do dream. That certainly works for me.

btw, If you haven't already tried it, try sleeping on your side exclusively. It can make for less pressure required for therapy.

Also consider setting for CPAP on a fixed pressure barely above your 95% result. Some people find that APAP is not as tolerable as CPAP. Pressure increases that APAP cause can be disturbing and the wider the range of increases, the more the disturbance.

Dude
10-06-2015 07:28 PM
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AlanE Offline

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Machine: ResMed AirSense 10 Autoset
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Post: #8
RE: Venting
Don't give up. I am the same way. When I lay down in bed I am sleeping within minutes. I was doing good then went downhill and had to rebound. After making changes to my machine, I feel like I'm on the right track. It's been more than 6 months for me on cpap and I know I'll "get there". Wherever "there" is... I am also realizing that CPAP alone will not bring me all the way.



Using FlashAir W-03 SD card in machine. Access through wifi with FlashPAP or Sleep Master utilities.

I wanted to learn Binary so I enrolled in Binary 101. I seemed to have missed the first four courses. Big Grinnie
10-06-2015 07:41 PM
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ISnoreBadly Offline

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Posts: 117
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Machine: PR System One REMStar Pro 560
Mask Type: Nasal pillows
Mask Make & Model: PR DreamWear Nasal Mask
Humidifier: PR System One
CPAP Pressure: 12
CPAP Software: SleepyHead

Other Comments:

Sex: Male
Location: Lawn Guyland, Noo Yawk

Post: #9
RE: Venting
(10-06-2015 07:28 PM)surferdude2 Wrote:  A test of sleep quality for some people is whether they dream or not. It's not important to remember exactly what you dream about but just that you do dream. That certainly works for me.

I'll work on that. I can't recall any dreams that I've had lately but I don't often remember dreams. I'll see if I can remember right when I wake up.

Quote:btw, If you haven't already tried it, try sleeping on your side exclusively. It can make for less pressure required for therapy.

I try to sleep on my left side as that seems to be the most comfortable for me but many times I wake up without the mask on, on my right side. When I do that my wife gets mad at me since that's facing her... and I'm usually snoring when that happens.

Quote:Also consider setting for CPAP on a fixed pressure barely above your 95% result. Some people find that APAP is not as tolerable as CPAP. Pressure increases that APAP cause can be disturbing and the wider the range of increases, the more the disturbance.

I started out with CPAP at 12 but after playing around with it I thought that I was sleeping better with APAP. Maybe I'll try going back to the fixed pressure and see if it makes a difference. It can't hurt at this point I guess.
10-06-2015 07:58 PM
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PoolQ Offline

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Location: Sillicon Valley

Post: #10
RE: Venting
Join the club. My working theory is that MOST people on CPAP are basic OA types and the farther away we get from that the more work it is to get it right.
Right now my Doctor is telling me to ignore my centrals and won't even talk about my periodic breathing that on some nights is 80+% of the time. He gave me a list of things to try to help me tolerate CPAP. He likes to just look at AHI and with that I am doing okay.

I wake up every hour +/- 15 minutes, I walk around for 10 minutes and go right back to sleep. I do this until 4-5 in the morning and then I sleep for 2-4 hours.

I tried all of his suggestions and have an appointment next week.

It's not all in my head, it's not something I just need to get used to. When I run out of options then and ONLY then will I try and just get used to it.

I get so frustrated when anyone tells me to just get used to it, give it time. Just exactly what am I supposed to get used to? Have they seen my plots? Do they have any idea what percent of the night I spend periodic breathing? What kind of periodic breathings do I do?

The first answer you get is APAP. Then BiLevel because you are "sensitive". Then you get hit with the give it time.

Do you have periodic breathing? What is your flex set at?

Twice now instead of getting up and walking around I stayed in bed and what a surprise each and every time I get 4 groups of 3 centrals in 20 minutes, so yes my numbers are low BECAUSE I get up instead of pushing through 12 centrals an hour. I hate being awake during centrals, not fun at all.

I find that I can tolerate the system I have with the settings the best I can make them, only so long and then I need a break.

When I first started I would wake up and rip the mask off, sometimes taking hours before I could face putting it back on.
With setting adjustment I got so I would "just" remove the mask for a while.
Now with BiLevel I still need breaks, but no panic and in 5-20 minutes I can return to sleep and fall asleep quickly. I just need to get up every hour, that is currently my limit of what I can tolerate after 3 months.

Next plan is to try and get my centrals and periodic breathing under control and then MAYBE I will start sleeping through the night.

I currently spend 10-11 hours a day sleeping mixed in-between breaks so it ends up that for over half the day I am out of commission, I am concerned that soon my job will not support this.
10-06-2015 10:44 PM
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