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FRUSTRATED: Still tired after 131 days of CPAP
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me50 Offline

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Post: #31
RE: FRUSTRATED: Still tired after 131 days of CPAP
(10-21-2013 12:02 PM)djjwilly Wrote:  A Miracle! This post really proves the good work this forum is doing. I tried to download Sleepyhead once before, but got overwhelmed and deleted it. I just downloaded it again. I managed to find a video on youtube that explained how to insert the SD card in my computer. Yay! I actually got the info imported to Sleepyhead and I'm so proud of myself. I wouldn't have done it without your help. I don't understand alot of it but here's what I've found so far:

Night of Oct. 20:
AHI 22.22
hours 5:45
pressure 7
average leak .04
95% leaks .00
clear airway apneas 2 .35
hypopnea 14 events 2.43
obstructive apneas 112 events 19.4
apnea 0

I'm thinking this is not good. I still can't understand how this all works, and I consider myself intelligent. I'm so fried today I could barely get out of bed and was grateful my husband wasn't home. I crawled out at 10 am, terrible for me. I just couldn't handle even living this a.m. Someone please enlighten me. Is my sleep apnea out of control? I think this is a peak night. I think it has peaks and valleys from what I can figure. My daily numbers aren't this bad overall, I don't think. Many thanks to anyone who can help me understand. Love, DJ

your AHI should be 5 or less see if you can post what you see in sleepy head I would be all over my doctor with a printed report showing what you said today I would print them out individually and then do it by week or a 30 day. If this is not due to leak then your pressure is most likely to low. If you need help with posting the details let us know.
(This post was last modified: 10-21-2013 01:22 PM by me50.)
10-21-2013 12:42 PM
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Peter_C Offline

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Machine: System One DS960HS
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Other Comments: Severe obstructive sleep apnea 1999/Just got an ASV machine

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Post: #32
RE: FRUSTRATED: Still tired after 131 days of CPAP
The biggest issue, is a sleep study is *one* night, and then you're not at home, in your bed, with your pillow, etc...

This is why the companies started making data-capable machines, so that someone can see the data from real use, and make adjustments from there. If possible, make an appt with your sleep doc, and bring in some data (multiple days worth), so they can see that you both trying to be compliant, and that it's not doing the job as set up.

Yes, you *could* slowly start playing with your settings yourself, but if you can use the sleep doc, I would go that way first.

*I* am not a DOCTOR or any type of Health Care Professional. My thoughts/suggestions/ideas are strictly only my opinions.

"Only two defining forces have ever offered to die for you. Jesus Christ and the American Soldier. One died for your Soul, the other for your Freedom."
10-21-2013 01:01 PM
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djjwilly Offline

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Post: #33
RE: FRUSTRATED: Still tired after 131 days of CPAP
I wish I had been much more distrustful from the beginning of this whole mess. Whenever I have my SD card read they had me a report at the DME would says I'm doing great. I'm going to print up a couple of weeks worth from Sleepyhead and bring it to the doctor next week. Let's see what she says when my info is way different from the DME. I don't want to get anyone in trouble, but I'm suffering needlessly here. I think most Medicare patients are treated like this. I'm on Medicare, yes, but I'm a college grad and not your average run of the mill old lady in a nursing home. Maybe I can speak up for alot who have no voice. I'm going off to print some stuff right now. I see the doc next week. Thank you so much for helping me. Love, DJ
10-21-2013 01:16 PM
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me50 Offline

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Posts: 2,559
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Machine: resmed S9 VPAP Auto
Mask Type: Nasal mask
Mask Make & Model: Wisp and Silicone Head gear
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CPAP Pressure: 18/8
CPAP Software: SleepyHead

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Post: #34
RE: FRUSTRATED: Still tired after 131 days of CPAP
(10-21-2013 01:16 PM)djjwilly Wrote:  I wish I had been much more distrustful from the beginning of this whole mess. Whenever I have my SD card read they had me a report at the DME would says I'm doing great. I'm going to print up a couple of weeks worth from Sleepyhead and bring it to the doctor next week. Let's see what she says when my info is way different from the DME. I don't want to get anyone in trouble, but I'm suffering needlessly here. I think most Medicare patients are treated like this. I'm on Medicare, yes, but I'm a college grad and not your average run of the mill old lady in a nursing home. Maybe I can speak up for alot who have no voice. I'm going off to print some stuff right now. I see the doc next week. Thank you so much for helping me. Love, DJ

The good thing is that you aren't stuck with the Escape or some other machine that isn't data capable!! Good for you for being your best advocate.

I, too, am on a medicare advantage plan and also a college grad and have a little bit of horse sense! I don't know who your DME is, but, I have issues with my DME, and, of course, we are limited to who we can use so changing to another DME isn't always an option.
10-21-2013 01:30 PM
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terp1984 Offline

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Post: #35
RE: FRUSTRATED: Still tired after 131 days of CPAP
I have the same problem. I wake up multiple times for no apparent reason. Sometimes when this happens, I take a sleeping pill (such as Ambien), but due to the side effects, I can do that for no more than two nights in a row. However, for whatever it may be worth, waking up and being unable to go back to sleep is a lot worse than waking up multiple times and returning to sleep each time. I used to have the former problem.
10-21-2013 04:49 PM
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me50 Offline

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Post: #36
RE: FRUSTRATED: Still tired after 131 days of CPAP
(10-21-2013 04:49 PM)terp1984 Wrote:  I have the same problem. I wake up multiple times for no apparent reason. Sometimes when this happens, I take a sleeping pill (such as Ambien), but due to the side effects, I can do that for no more than two nights in a row. However, for whatever it may be worth, waking up and being unable to go back to sleep is a lot worse than waking up multiple times and returning to sleep each time. I used to have the former problem.

somnapure is supposed to work really well and is as natural as one can get and I have heard works well. Glad you got it worked out that you don't wake up and can't go back to sleep.
10-21-2013 05:28 PM
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Realtor 1 Offline

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Post: #37
RE: FRUSTRATED: Still tired after 131 days of CPAP
(10-21-2013 04:49 PM)terp1984 Wrote:  I have the same problem. I wake up multiple times for no apparent reason. Sometimes when this happens, I take a sleeping pill (such as Ambien), but due to the side effects, I can do that for no more than two nights in a row. However, for whatever it may be worth, waking up and being unable to go back to sleep is a lot worse than waking up multiple times and returning to sleep each time. I used to have the former problem.
You are absolutely correct here. Although that I am on Sleep Medication for over 4.5 months but I was waking up a lot but luckily going back to sleep but last few days I am waking up & then just cannot go back to sleep & it is terrible. I am seriously contemplating in taking a break from my CPAP for 1 night just to see If I feel better or worse.
10-21-2013 05:33 PM
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Peter_C Offline

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Machine: System One DS960HS
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Mask Make & Model: Mirage Quattro "MED"
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Other Comments: Severe obstructive sleep apnea 1999/Just got an ASV machine

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Post: #38
RE: FRUSTRATED: Still tired after 131 days of CPAP
Yup, pain wakes me at odd times, and even though I am tired, if I lie down the pain ramps up making me have to get up - some nights I end up just giving up and don't sleep at all.

*I* am not a DOCTOR or any type of Health Care Professional. My thoughts/suggestions/ideas are strictly only my opinions.

"Only two defining forces have ever offered to die for you. Jesus Christ and the American Soldier. One died for your Soul, the other for your Freedom."
10-21-2013 07:49 PM
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me50 Offline

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Machine: resmed S9 VPAP Auto
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CPAP Pressure: 18/8
CPAP Software: SleepyHead

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Post: #39
RE: FRUSTRATED: Still tired after 131 days of CPAP
(10-21-2013 07:49 PM)Peter_C Wrote:  Yup, pain wakes me at odd times, and even though I am tired, if I lie down the pain ramps up making me have to get up - some nights I end up just giving up and don't sleep at all.

pain from your surgeries? that is sad that you have pain to keep you from sleeping.
10-21-2013 07:59 PM
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Peter_C Offline

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Machine: System One DS960HS
Mask Type: Full face mask
Mask Make & Model: Mirage Quattro "MED"
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CPAP Pressure: Auto mode-script is:15/3/3
CPAP Software: EncoreBasic Other Software

Other Comments: Severe obstructive sleep apnea 1999/Just got an ASV machine

Sex: Male
Location: Akron, Ohio USA

Post: #40
RE: FRUSTRATED: Still tired after 131 days of CPAP
No actually. Not my nose or throat surgery. I've had one knee, and one hip replaced, and one shoulder rebuilt (so far). My other knee and hip need to be replaced. I have severe OA in most of my joints. I drop forks and pens, and my hands don't always work. Good days and bad days - my OSA is only one of many issues I have.

At age 49 my blood suddenly decides to start creating clots, so after multiple PEs multiple times, I am now also on blood thinners for life. And on, and on...

*I* am not a DOCTOR or any type of Health Care Professional. My thoughts/suggestions/ideas are strictly only my opinions.

"Only two defining forces have ever offered to die for you. Jesus Christ and the American Soldier. One died for your Soul, the other for your Freedom."
10-21-2013 08:04 PM
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