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4 years, still feel like garbage
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Route67 Offline

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Posts: 68
Joined: Aug 2012

Machine: S9 AutoSet
Mask Type: Nasal mask
Mask Make & Model: Resmed
Humidifier: Resmed
CPAP Pressure: Auto
CPAP Software: SleepyHead Other Software

Other Comments: On CPAP for 2 years, still can't sleep. Edit; make that 4 years now, still can't sleep.

Sex: Male
Location: New Hampshire, USA

Post: #1
4 years, still feel like garbage
Got my Resmed 9 four years ago and have been using it faithfully ever since. 2 different doctors at the sleep clinic and at least 12 appointments later and they tell me everything is fine; no leakage, no problems, ramp adjustment and pressure are fine and everything looks great every time they read my card, including just 3 days ago. She even adjusted the bottom pressure number downward to 10 minimum because she felt like 12 was too much. 16 is the max.

So why do I still feel like garbage every day? Why, including last night, can I never sleep more than 5 hours, 5.5 at the very most, and wake up with blockhead like right now, which as we all know messes up your whole day and makes you feel like complete crap until you climb into bed again in the evening? Jeeesh, what a way to go through life, tired and with a massive headache all the freaking time. Even using CPAP nightly.

Just lost 130 pounds from April 2015 to May 2016 following gastric bypass surgery, yaaaay! 70% of patients who go through the program get to lose their CPAP machines and see their apnea issues go away, but not me! That would be way too easy. Sometimes losing 40% of your body weight helps to shrink the Uvula and clear more space in your air passageway for the air to get through, but my sleep Doc had a look and says my mouth area is still way too crowded.

Here's a checklist of things I am NOT doing wrong;

- Darkened room for sleep; check, I even have cardboard on the windows, it's like a cave in there.
-Cpap adjusted properly? Yup, the Docs always tell me all the settings are perfect and they adjust it themselves.
-Alcohol or cigarettes? Nope, never smoked and don't like alcohol.
-Tired from the day's activities? Check, I work out daily now and usually do 3-4 miles either on the treadmill as well as walking and hiking and weight training.
-TV or computer usage late at night?Nope, I prefer reading.
-Food before bed? Not anymore. And I never, ever take in caffeine at night and rarely in the daytime.
- Coffee? Never drank it even once in my life. Don't like the taste.

The ONLY advantage I am getting from wearing the mask faithfully every night for 4 years is that I don't have Nocturia any longer, thank God. Getting up to pee every 2 hours before using it was a giant pain; but now I can get a full 5 [5!!!] hours without peeing. Awesome.

Hey, it's all good, who needs 6 or 7 or even [oh my god, what a dream -literally - this would be] 8 hours of sleep when you can get 5? 5 is awesome! Blockhead feels fantastic too. Have a great Saturday one and all, I will be feeling like crap all day. Again.
(This post was last modified: 05-21-2016 07:23 AM by Route67.)
05-21-2016 07:12 AM
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OpalRose Offline

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Posts: 3,181
Joined: Nov 2014

Machine: PR System One REMstar Auto 560 with A Flex
Mask Type: Nasal pillows
Mask Make & Model: AirFit P10 For Her
Humidifier: REMStar heated humidifier with heated hose
CPAP Pressure: Auto Cpap 10-13 AFLEX 1
CPAP Software: SleepyHead EncoreBasic

Other Comments: Started CPAP Therapy October 23, 2014

Sex: Female
Location: Northeast Ohio, USA

Post: #2
RE: 4 years, still feel like garbage
(05-21-2016 07:12 AM)Route67 Wrote:  Here's a checklist of things I am NOT doing wrong;

-Cpap adjusted properly? Yup, the Docs always tell me all the settings are perfect and they adjust it themselves.


Hi Route67,
Sorry you have had so much difficulty with your therapy.

I agree with your check list of things you are doing correctly except the one above.

How do you know that your settings are adjusted correctly? Are you looking at SleepyHead reports to see what your AHI is and the breakdown of your apnea events? Do you experience a lot of Clear Airway events?

It may be easier to depend on doctors to tell you all is well, but is it?

Most of us here on Apnea Board have found out the hard way that our docs don't or can't help too much with Cpap settings.

Use the Sleepyhead software and download your data, and post us a screenshot.
Someone here can take a look and be able to make suggestions.

We are not doctors, but yours hasn't done much for you in 4 years and 12 appointments!

It may be time to take charge of your Cpap therapy.

OpalRose
(This post was last modified: 05-21-2016 07:50 AM by OpalRose.)
05-21-2016 07:50 AM
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Route67 Offline

Preferred Members

Posts: 68
Joined: Aug 2012

Machine: S9 AutoSet
Mask Type: Nasal mask
Mask Make & Model: Resmed
Humidifier: Resmed
CPAP Pressure: Auto
CPAP Software: SleepyHead Other Software

Other Comments: On CPAP for 2 years, still can't sleep. Edit; make that 4 years now, still can't sleep.

Sex: Male
Location: New Hampshire, USA

Post: #3
RE: 4 years, still feel like garbage
I will try that, but I think I tried it a couple times based on suggestions here and it didn't help. I have the sleepyhead software saved somewhere in my PC so I will dig it out right now.

By the way, one thing I forgot to mention is that I never have trouble FALLING asleep, in fact I bet I am doing that in less than 5 minutes every night, I am generally tired from the day's activities.

It's staying asleep - and the lack of vivid dreaming and any sort of deep sleep - which is bothering me.
(This post was last modified: 05-21-2016 08:00 AM by Route67.)
05-21-2016 07:59 AM
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Route67 Offline

Preferred Members

Posts: 68
Joined: Aug 2012

Machine: S9 AutoSet
Mask Type: Nasal mask
Mask Make & Model: Resmed
Humidifier: Resmed
CPAP Pressure: Auto
CPAP Software: SleepyHead Other Software

Other Comments: On CPAP for 2 years, still can't sleep. Edit; make that 4 years now, still can't sleep.

Sex: Male
Location: New Hampshire, USA

Post: #4
RE: 4 years, still feel like garbage
Can someone please send up the proper link to download and run the sleepyhead software? I just found a link but it was a malicious attack program which tried to harm my computer [Norton stopped the attack].

I'd be happy to use it and send up the results here but I need a correct link, thanks everyone.
05-21-2016 08:06 AM
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DeepBreathing Offline
Wiki Editor
Moderators

Posts: 2,296
Joined: Sep 2013

Machine: Resmed S9 VPAP Adapt
Mask Type: Full face mask
Mask Make & Model: F&P Simplus
Humidifier: Resmed H5i
CPAP Pressure: EPAP: 9 - 15 PS: 3 - 10
CPAP Software: ResScan SleepyHead

Other Comments:

Sex: Male
Location: Perth, Western Australia

Post: #5
RE: 4 years, still feel like garbage
Hi Route67, the link to the SleepyHead software can be found at the top of each page on this forum. Download is clean but Kaperski and Norton are both reporting a false positive Trojan. I can confirm I have it running on my own computer with no problems, as have other members here.

DeepBreathing
Apnea Board Moderator
www.ApneaBoard.com


Bed

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
05-21-2016 08:19 AM
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green wings Online

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Posts: 553
Joined: Feb 2016

Machine: Respironics System One RemStar Pro (460)
Mask Type: Nasal pillows
Mask Make & Model: AirFit P10
Humidifier: integrated humidifier
CPAP Pressure: 13.0 cm
CPAP Software: SleepyHead

Other Comments: using CPAP since Jan. 2016

Sex: Undisclosed
Location: US

Post: #6
RE: 4 years, still feel like garbage
There's a link at the top of this page - it has a sheep icon. I have seen a couple of people posting recently saying that their computer's virus protection program is flagging SleepyHead as a Trojan or some other sort of malware. It's not, but you might want to wait for some of the message board operators to weigh in on that.

If you type "SleepyHead virus malware" into a search engine, it will show you some posts from this board where people are discussing this.
05-21-2016 08:20 AM
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justMongo Offline

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Posts: 3,855
Joined: Sep 2013

Machine: ResMed VPAP Auto (S9)
Mask Type: Full face mask
Mask Make & Model: ResMed Mirage Quattro
Humidifier: ResMed H5i
CPAP Pressure: 18 IPAPmax - 11 EPAPmin, PS=5
CPAP Software: Other Software

Other Comments: μολὼν λαβέ

Sex: Male
Location: Калифорния

Post: #7
RE: 4 years, still feel like garbage
(05-21-2016 08:06 AM)Route67 Wrote:  Can someone please send up the proper link to download and run the sleepyhead software? I just found a link but it was a malicious attack program which tried to harm my computer [Norton stopped the attack].

current build is:
http://sleepyhead.jedimark.net

Member Jedimark codes sleepyhead; and says some AV programs are giving false positives to the installer code.

See this thread: http://www.apneaboard.com/forums/Thread-...-as-Trojan

If you're still unsure, you could use a previous build.
http://www.apneaboard.com/SH-old

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
(This post was last modified: 05-21-2016 08:27 AM by justMongo.)
05-21-2016 08:25 AM
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Phill Offline

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Posts: 90
Joined: Nov 2015

Machine: ResMed S9 Auto Set
Mask Type: Full face mask
Mask Make & Model: ResMed AirFit F10
Humidifier: ResMed H5i, with heated hose
CPAP Pressure: unsure
CPAP Software: ResScan SleepyHead

Other Comments:

Sex: Male
Location: UK, sunny south coast.

Post: #8
RE: 4 years, still feel like garbage
Well Route67, should you find the answer to only getting 5-5.5 hours sleep please pass the information on, I usually only get 4-4.5 hours.
The best the MM (moron medic) could come up with was to go to bed later.

Strangely I do not feel like garbage, but then again I had no complaints before starting treatment.
(This post was last modified: 05-21-2016 09:38 AM by Phill.)
05-21-2016 08:26 AM
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Route67 Offline

Preferred Members

Posts: 68
Joined: Aug 2012

Machine: S9 AutoSet
Mask Type: Nasal mask
Mask Make & Model: Resmed
Humidifier: Resmed
CPAP Pressure: Auto
CPAP Software: SleepyHead Other Software

Other Comments: On CPAP for 2 years, still can't sleep. Edit; make that 4 years now, still can't sleep.

Sex: Male
Location: New Hampshire, USA

Post: #9
RE: 4 years, still feel like garbage
4 or 5 hours of sleep is not only bad for you, it's dangerous too; that's all Trump/John Miller gets and look how weird he is.

OK, so as others have mentioned the Norton not only blocks the Sleepyhead download but it then removes the program so there is no way to download it or even override it. I tried disabling the firewall for my Norton but that didn't work either.

So I went with the old version and got this. Perfect.

3 reinstalls get me the same error every time. Will keep trying.


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(This post was last modified: 05-21-2016 09:40 AM by Route67.)
05-21-2016 09:40 AM
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Sleepster Offline
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Posts: 4,995
Joined: Feb 2012

Machine: ResMed AirCurve10 VAuto
Mask Type: Full face mask
Mask Make & Model: F&P Simplus
Humidifier: HumidAir and SlimLine Hose
CPAP Pressure: MaxI 13.6 | MinE 5.2 | PS 4.4
CPAP Software: ResScan SleepyHead

Other Comments: Diagnosed Nov 2011. Conquered aerophagia.

Sex: Male
Location: Houston, Texas

Post: #10
RE: 4 years, still feel like garbage
(05-21-2016 07:12 AM)Route67 Wrote:  She even adjusted the bottom pressure number downward to 10 minimum because she felt like 12 was too much. 16 is the max.

I would think that having lost that much weight you'd need to lower the max pressure, but fortunately we can use SleepyHead (SH) to help us make those decisions. Most doctors will not be looking at the detailed data because they don't have SH. Yes, they can use ResScan, but they would need to examine the data on their computer. What they do instead is have their assistants print a summary report. And things can look good on a summary report, even when an examination of the details shows that they're not.

For example, you could be mouth-leaking: The summary data showing that the amount of time spent in large leak is acceptable, but examination of the leak graph showing that those short amounts of time spent in large leak are interfering with the effectiveness of your therapy and causing you to awaken in the middle of the night. The remedy would be a chin strap or a full face mask.

I suggest you find another doctor who is willing to treat your insomnia. Someone who specializes in CPAP therapy.

Sleepster
Apnea Board Moderator
www.ApneaBoard.com


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
05-21-2016 09:41 AM
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