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Ups and downs. My experiences and Suggestions invited.
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RimBlock Offline

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Posts: 5
Joined: Nov 2012

Machine: Philips Respironics REMstar Auto
Mask Type: Nasal mask
Mask Make & Model: Philips Profile Lite
Humidifier: Philips Respironics
CPAP Pressure: Unsure
CPAP Software: Not using software

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Sex: Male
Location:

Post: #1
Ups and downs. My experiences and Suggestions invited.
This is likely to be a long post so brace yourselves Smile.

I had been told by a number of partners I snore but felt there is not so much I could do about it. Around 6 years ago I moved from the UK to Singapore after marrying my wife. Unfortunately, I then proceeded to put on a bit of weight mainly due to the terrible diet. Whilst she and the children easily burn it off, I am at the point where it goes on and sticks. Around 5 years ago I stopped smoking. I found I was getting quite severe headaches behind my left eye now and then though, especially in the mornings if I slept in late or after a series of late nights. Around 4 years ago I saw the photos from a trip back to see the family and went all out to do something about it....

Over around 2 years I managed to get to the gym and loose around 10kg (a few ups and downs along the way). I went from 105kg to 95kg and also bulked up a little. I had always been very slim with a 34" waist but hit 42" at 105kg (I am around 6ft). The headaches were also pretty rare and I put it down to a reaction with something in the fast food I was no longer eating. Back in 2011 with the arrival of our third boy I found that I had no time for the gym and the weight started to pile on again. The diet went out the door and the old ways returned.

I also lost interest in the work I was doing, my memory seemed to be very poor, concentration suffered and I was much more challenging. The headaches were back worse than ever and would occur usually with a warning around 9am and go full blown at 11am not going away until 8pm. Nothing I found worked on the headaches including sleeping. After a number of visits to the doctor I was referred to a sleep specialist and they took a peak flow test which was reasonable (around 95% of expected) and blood pressure which was borderline high. The cost for the consultation was pretty high and not covered by the medical insurance and due to the strain on the budget, I did not return. I also started my own internet based company as well as my regular work and this swallowed up even more time.

It got to the point where I was just no good to anyone and just could not stand it. Strangely I did have one day of bliss. I have no idea why but on one day I was bouncing all over the office. I had so much energy and ideas were just popping in to my head from all over the place just like they used to. Unfortunately it was just a one of and the next day I was back to the same old same old.....

I ended up visiting my family back in the UK with the kids and we managed to arrange a sleep study. It confirmed that I had moderate sleep apnea (occurring around every 15 minutes). My time in the UK was very limited and I arranged a CPAP machine and both a nose and full face mask. The technician went over the machine and masks and even showed me how to get in to the setup menu to adjust pressure. Unfortunately as I was returning to Singapore a day or so later there was not time to check progress, mask fitting or therapy effectiveness but I was happy to see the machine records data on a SD card.

I returned to Singapore and used the machine every night. I found the full face mask would leak quite badly, usually straight in to my eye. The nose mask seemed to be much better and as far as I was aware I slept with my mouth closed (apart from the first time where I woke up dribbling quite impressively :grinSmile.

Since using the nose mask, it has taken things from 'going insane' tired to ‘can function but still no concentration / short term memory' tired. I am finding I tend to suffer headaches once a week, usually on Saturday. Sunday seems to reset and the fatigue builds up over the working week until it snaps with a headache the following Saturday. The headache is pretty much disabling. Any thought or concentration and it intensifies and it is strongly affected by stress (pressure at work, screaming kids etc).

I have now got a new referral to the same respiratory specialist but on calling they seemed confused about the Philips CPAP machines and if they can read the data. This I am taking as a bad sign, especially as I have had headaches 3 days running (not quite as severe as usual) and am on a pretty bad low.

I am glad I managed to find this site as I found the official Philips software is not readily available and so had no way of viewing the data the machine has been capturing. Now, hopefully Sleepyhead will enable me to at least partially manage the therapy and make adjustments. Now my youngest is 1 1/2 I can also try to find some more time to get to the gym which has just opened a branch just across the road from me. On the down side, they seem to have forgotten my 6 months free I was given when signing up so I will have to argue a bit in order to use it but I do have the signed contract.

Right, there we go, thanks for reading and maybe some others will recognise the syntoms I had and go get checked out.

My hope is to get the therapy working well and get a boost, use that to get down the guy which will give even more of a boost and use that to improve my weight and day to day life to the point where the excess weight is gone and I may not have to use the CPAP machine anymore.

Oh and on a plus side, my wife says I don't snore when using the CPAP machine Dancing.

RB
11-27-2012 04:41 AM
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RimBlock Offline

Members

Posts: 5
Joined: Nov 2012

Machine: Philips Respironics REMstar Auto
Mask Type: Nasal mask
Mask Make & Model: Philips Profile Lite
Humidifier: Philips Respironics
CPAP Pressure: Unsure
CPAP Software: Not using software

Other Comments:

Sex: Male
Location:

Post: #2
RE: Ups and downs. My experiences and Suggestions invited.
Oh, one question I do have is that both the masks, when in use, have a stream of air coming out from above where the air hose is connected (the section just above the section you connect the tube to which then goes in to the main part of the mask).

I am assuming this is normal as it is on both the nasal and full face mask but it would be nice to get confirmation.

Thanks
RB
11-27-2012 04:58 AM
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archangle Online
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Advisory Members

Posts: 3,159
Joined: Feb 2012

Machine: ResMed S9 AutoSet
Mask Type: Nasal pillows
Mask Make & Model: ResMed Swift FX
Humidifier: ResMed S9 H5i
CPAP Pressure: 16-20
CPAP Software: ResScan SleepyHead EncoreBasic

Other Comments: Happy PAPper

Sex: Undisclosed
Location: USA

Post: #3
RE: Ups and downs. My experiences and Suggestions invited.
(11-27-2012 04:58 AM)RimBlock Wrote:  Oh, one question I do have is that both the masks, when in use, have a stream of air coming out from above where the air hose is connected (the section just above the section you connect the tube to which then goes in to the main part of the mask).

Yes, that's referred to as the exhaust vent. Without that, you'd keep rebreathing in your own exhaled air and you'd suffocate.

Your PRS1 Auto machine is a good CPAP. Learn how to use the software, especially the free SleepyHead program and you can track your progress and see how well the machine is working.

Get the free SleepyHead software here.
Useful links.
Click here for information on the main alternative to CPAP.
If it's midnight and a DME tells you it's dark outside, go and check it yourself.
11-27-2012 06:24 AM
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trish6hundred Offline

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Posts: 6,452
Joined: May 2012

Machine: Resmed S9 AutoSet for Her
Mask Type: Full face mask
Mask Make & Model: Fisher & Paykel Simplus
Humidifier: H5i Heated Humidifier
CPAP Pressure: 10 - 7-20 Cm H2O
CPAP Software: Not using software

Other Comments: I started CPAP in 2008. Totally blind since birth.

Sex: Female
Location: Missouri, USA

Post: #4
RE: Ups and downs. My experiences and Suggestions invited.
Hi RimBlock and WELCOME! to the forum.!
Hang in there for more answers to your questions and best of luck to you with your CPAP therapy and don't give up, it can take lots of patience.

trish6hundred
11-27-2012 04:59 PM
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JudgeMental Offline

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Posts: 324
Joined: Feb 2012

Machine: Respironics DreamStation Auto-CPAP
Mask Type: Full face mask
Mask Make & Model: Respironics Amara View
Humidifier: Respironics
CPAP Pressure: 11-14
CPAP Software: SleepyHead

Other Comments:

Sex: Male
Location: Florida USA

Post: #5
RE: Ups and downs. My experiences and Suggestions invited.
You do have an awesome CPAP machine. It will serve you well and improve your health immensely if used properly. Continue to visit and read here and ask questions. You will learn tons.

Frankly, in my opinion, you are walking a tight rope toward stroke or heart attack. Your auto-bio says it all. Overworked, over-weight, poor diet, out of shape, sleep apnea, lack of quality sleep, and over stressed just to name a few.

Get a handle on the mask that leaks the least and wear it anytime you anticapate sleep. Use the available free software or make yourself a CPAP diary and get your AHI below 5 AHI.

As "archangle" replied, each nasal, full face, or pillows style will have an exhaust vent. Do not block it off. It is intended to assist with dispersing the CO2 as you breath out.

Sorry to have come across as being blunt, but your post suggested to me that you know what you need to do but just need a firm budge. All of the resources that you need to assist and improve your sleep health can be found right here on the site.

Yesterday is history; Tomorrow is a mystery; Today is a gift; Thats why its called "The Present".
(This post was last modified: 11-27-2012 06:32 PM by JudgeMental.)
11-27-2012 06:29 PM
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zonk Offline

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Posts: 7,908
Joined: Feb 2012

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: #6
RE: Ups and downs. My experiences and Suggestions invited.
welcome to the forum. your assumption is correct .. the vents holes designed to flush exhaled air as you breathe the incoming fresh air
this is called intentional leak ... good leak.
mask/mouth leak called unintentional leak ... some is acceptable but too much is not ... bad leak

i know about ups and down, been nearly two years and still do get some bad nights
overall i,m 100% compliant and would not sleep without the machine

it can be frustrating at first, like anything else over time it become a routine
and would not notice anything different, it become the normal thing to sleep with

mask is the key ... keep trying different masks
also be aware when to replace the cushion and washing every day to remove facial oil helps with seal
11-27-2012 06:34 PM
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Dawei Offline

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Posts: 342
Joined: Feb 2012

Machine: ResMed S9 AutoSet
Mask Type: Other
Mask Make & Model: Respironics "FitLife"
Humidifier: H5i
CPAP Pressure: 10-20
CPAP Software: ResScan SleepyHead

Other Comments: Began CPAP in 2006; spent the first 6 years with a "brick"

Sex: Male
Location: Western North Carolina

Post: #7
RE: Ups and downs. My experiences and Suggestions invited.
RB--welcome to the board. Judgemental may have been quite blunt, as he admitted, but I cannot disagree with what he wrote. As you become familiar with SleepyHead software, make particular note of both your mask leakage, which needs to be kept to a minimum, as well as your AHI numbers over time. When mask leakage is high, it compromises the machine's ability to report correct AHI numbers. As judgemental mentioned, the goal for AHI is below 5 for proper therapy (along with low mask leaks).
Unfortunately, I have not read any reports that indicate weight loss leads to eliminating the need for CPAP. Apnea is effectively treated with xPAP, but I've read that when the machine is no longer used, the apnea remains whether or not there's a change in weight. There are folks who do not have a weight problem but who nonetheless have apnea.
As others have said, you're on the right track with CPAP, diet and exercise. Oh, there's one more ingredient: patience. Best of luck!
11-27-2012 06:47 PM
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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: #8
RE: Ups and downs. My experiences and Suggestions invited.
(11-27-2012 04:41 AM)RimBlock Wrote:  I ended up visiting my family back in the UK with the kids and we managed to arrange a sleep study. It confirmed that I had moderate sleep apnea (occurring around every 15 minutes).

Was it 15 events per hour? That would be borderline moderate. One event every 15 minutes would be only 4 events per hour. That would be just below the cut-off for mild apnea.

SleepyHead is much better than the Respironics software, so it's good that you've got it. You need to see how many events you're having per hour. You also need to monitor your leak rate. Too many leaks and the machine can't keep your airway open.

You are the first person I've met with headache symptoms like mine. They started becoming unbearable about 25 years ago. In the last year CPAP therapy has helped tremendously and I'm now convinced that sleep apnea was and is the underlying cause. The fatigue and difficulty concentrating causes muscle tension. Getting the sleep I need helps me learn to relax and avoid, for the most part, those tension headaches.

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.
(This post was last modified: 11-27-2012 09:25 PM by Sleepster.)
11-27-2012 09:24 PM
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RimBlock Offline

Members

Posts: 5
Joined: Nov 2012

Machine: Philips Respironics REMstar Auto
Mask Type: Nasal mask
Mask Make & Model: Philips Profile Lite
Humidifier: Philips Respironics
CPAP Pressure: Unsure
CPAP Software: Not using software

Other Comments:

Sex: Male
Location:

Post: #9
RE: Ups and downs. My experiences and Suggestions invited.
Thanks for all the replies.

I think some peoples readings on my original post is correct in that I have a fair idea on the direction to go. I am an IT analyst by trade and pretty analytical by nature. Confirmation I think is more what I was looking for rather than a push but Thanks anyway.

After using the SleepyHead software (great program, kudos to the developer), I am now quite disappointed.... but not for the reasons you may expect.

I have data from the 22nd of June up until now and have been using the mask constantly just about every night. I find the nasal mask quite comfortable although the pipe can be a bit clumbersome. The air coming out of the vent tends to blow cold on my hand (I sleep on my side generally) which is a bit distracting but with the tube above my head, that is not so much of a problem.

Starting (June 22nd) Apnea readings were;
AHI: 11.3
Pressure: med(8), 95% (11)
Leaks: Med (13), 95% (31), max (44)
Peak AHI: AHI/hr Max (30), AHI/hr avr (9.32)

Any other sections worth reporting ?.

Last nights Apnea readings were;
AHI: 0.88
Pressure: med(6.1), 95% (8)
Leaks: Med (4), 95% (14), max (22.52)
Peak AHI: AHI/hr Max (3), AHI/hr avr (0.7)

Now these figures would seem to be pretty good and are fairly consistent over the last month (highest AHI was 2.2) with between 5.5 & 8 hours sleep a night. So why, you may ask, am I so disappointed.....

It is because I am still dead on my feet all day, no concentration, no short term memory, my typing is terrible (even more than usual Bigwink ). At least if something showed up on the machines data I would have something to work on.

I don't know what all the data means so a link to a primer would be much appreciated.

The doctor mentioned restless leg syndrome but my wife assures me that is not the case.

The only other thing I know is that around 2 years ago, at a guess, I started getting throat infections behind my nose (front wall above where the tonsils hang from). I used to be prone to throat infections but they normally occurred at the back of my throat. I have noticed that the area now feels like it is sagging although I have been told there is no visible sagging. I also know that if I lay on my back and relax, I can feel that area vibrating and blocking my breathing behind my nose when exhaling (part of the reason I do not sleep on my back). The blocking has been going on for years one way of another as I remember feeling it when I was smoking and before moving here so over 6 years ago but I never felt any form of sagging until after these nasal / throat infections. I do not know if this has any connection but would be interested to see if anyone else knows anything.

Oh and for anyone looking to copy an image of their graphs in Windows then they can select the Sleepyhead window, hold [ALT] and press [prt sc] (usually to the right of the [F12] key), then open MS Paint ([Start] - [Programs] -> [Accessories] -> [Paint]) and then hold [ALT] + [v] (paste). Should work, with a little tweeking, for most Windows versions.

An application called SnagIt (sorry but apparently I cannot post a link to it but Google will find it for you) is also very good but it is not free. They do have a free 30 day trial though.

RB
11-28-2012 10:43 AM
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PaulaO2 Offline
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Posts: 8,068
Joined: Feb 2012

Machine: S9 Autoset
Mask Type: Full face mask
Mask Make & Model: F&P Simplus
Humidifier: H5i
CPAP Pressure: 14-20
CPAP Software: SleepyHead

Other Comments: Ehlers-Danlos Syndrome, Hypermobility Type; chronic sarcasm

Sex: Undisclosed
Location: western NC, USA

Post: #10
RE: Ups and downs. My experiences and Suggestions invited.
How long have you been using the machine? I forgot.

It is common for new users to feel worse for the first month or so. Your body and brain are still adjusting. Google "Sleep Debt".

Your AHI is good (anything below 5 is good). Your leaks are good as long as that is total leak, not the unintentional leak.

As for the print screen, you don't have to use the ALT key. At least I never do. I use Irfanview to view images. Also free.

PaulaO2
Apnea Board Moderator
www.ApneaBoard.com


Breathe deeply and count to zen.

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.
11-28-2012 12:09 PM
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