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Do I really need this?
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jdireton Offline

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Posts: 149
Joined: Feb 2012

Machine: Resmed S9 Elite
Mask Type: Nasal mask
Mask Make & Model: Resmed Mirage FX
Humidifier: Resmed H5i
CPAP Pressure: 12
CPAP Software: ResScan

Other Comments: ClimateLine Hose

Sex: Male
Location: Florida

Post: #11
RE: Do I really need this?
Paula,

One of the best posts I've ever seen on this board!

You should copy it, word for word, into the Wiki.

Judee, what Paula says. I hope we've been able to help.
08-31-2012 11:14 AM
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trish6hundred Offline

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Posts: 6,430
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: #12
RE: Do I really need this?
Hi allwaysjudee, First of all, WELCOME! to the forum. I'm sorry you are having such a rough time but I would agree with what others have said, first, look for a new mask and also read and re-read what Paula and mj said further up in this post, they are right on. I would also say to you don't give up on CPAP therapy. Best of luck.

trish6hundred
08-31-2012 11:45 AM
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allwaysjudee Offline

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Posts: 6
Joined: Jul 2012

Machine: ResMed S9
Mask Type: Full face mask
Mask Make & Model:
Humidifier: H5i
CPAP Pressure: unsure
CPAP Software: Not using software

Other Comments:

Sex: Female
Location:

Post: #13
RE: Do I really need this?
Wow.

Thank you each and every one of you for your thoughtful responses. I wasn't expecting so much, and appreciate each of you coming to my aid. You've given me so much to think about.

Moriarty, thank you for your bluntness, and you are partially right, I did come in her hoping someone would tell me it's okay to stop - but I hadn't really made up my mind. It's just that for the last month I've been sleeping without the CPAP, blissfully falling into sleep on my stomach which is my most comfortable position. I've resisted going back on the CPAP, telling myself it was because of the heat, but now it's not hot anymore.

BTW I live in Switzerland, and no air conditioning, but we only have about 2 - 3 weeks of really hot weather.

As for taking the test on my back - they didn't give me any other options and I had a head full of electrodes plus others on my cheeks to test for jaw movement, etc. I couldn't really sleep on my side without risk of them coming off, or so I felt.

BabyDoc, thank you for the info on oxymeters, that's interesting. I've tested mine with other members of the family and theirs are always higher, between 97 and 99. So I figured mine was calibrated okay.

As many of you have suggested, I do need to talk with my doctor about this, especially about the lower oxygen during the day. I do breathe very shallowly, but that is partially because the muscles in my ribcage have been affected from radiation, so I tend to breathe with stomach movement, and very little rib movement. It is possible there is some lung damage also, so the suggestion to see a pneumonologist is a good one, and I will discuss that with my doctor. I will be seeing him (my GP) this week.

mjbearit, I have learned through the years to be proactive about my health, and normally would not have accepted the dismissal of my discussion that the sleepDoc presented, but I was not at my best at the time of the appointment. Brainfog, yes I know what that is. Wink

PaulaO2, thank you for being so clear. I think I needed to hear that. My concern was about the oxygen levels, but the oxymeter also shows pulse rate incidents, and I have those too during the night. I was just hoping that maybe it was a positional thing and that would solve the problem.

I may ask to have a re-test with a different sleeping position and see if that factors in. Meanwhile I will be talking to my doctor and will give the CPAP another try.

I do have the ResMed S9 and it's a great machine, but I don't have access to the parameters, the sleepDoc did that. So any adjustments require that I see him. Since I was waking up every time it went past 11 or 12, he put the maximum at 11, but I haven't tried it since then as that was mid summer.

I tried a nasal mask and it kept waking me by pushing air out of my mouth instead of into my throat. So I now have a really nice mask just over the mouth and nose, but without a bridge thing at the forehead (caused headaches) but if I try to sleep on my side, it pushes the mask out of kilter.

Anyway, again, thank you all for the support and encouragement. While I was hoping to get some kind of affirmation that maybe I didn't need the CPAP, I think deep down what I was looking for was encouragement to continue with it.

Sometimes I just need a gentle shove in the right direction. And I do plan on having a long discussion with my GP about the oxygen levels.

Sleep-well

Judee
09-01-2012 03:58 AM
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PaulaO2 Offline
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Posts: 8,062
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: #14
RE: Do I really need this?
Quote:I do have the ResMed S9 and it's a great machine, but I don't have access to the parameters, the sleepDoc did that. So any adjustments require that I see him. Since I was waking up every time it went past 11 or 12, he put the maximum at 11, but I haven't tried it since then as that was mid summer.

Which S9 do you have? Look at the case around the on/off button. It should say Elite, Autoset, Escape, or Escape Auto.

Yes, you can change the settings but I don't think you should do that just yet. What you need is the clinician manual. Click the "CPAP Setup Manuals" link at the top of the page.

Quote:I tried a nasal mask and it kept waking me by pushing air out of my mouth instead of into my throat. So I now have a really nice mask just over the mouth and nose, but without a bridge thing at the forehead (caused headaches) but if I try to sleep on my side, it pushes the mask out of kilter.

Another option is to use a nasal mask or nasal pillows and a chin strap. The chin strap holds you mouth closed. You can still open you mouth so you're not like locked into that position, but the pressure of the strap gives resistance during your sleep and you are less likely to be mouth breathing.

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.
09-01-2012 08:19 AM
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allwaysjudee Offline

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Posts: 6
Joined: Jul 2012

Machine: ResMed S9
Mask Type: Full face mask
Mask Make & Model:
Humidifier: H5i
CPAP Pressure: unsure
CPAP Software: Not using software

Other Comments:

Sex: Female
Location:

Post: #15
RE: Do I really need this?
Paula, it says Autoset on it - and there are some letters, EPN, I think, though I'd have to go check again.

I'm wondering if I have a more general problem, though. I decided to test my oxygen levels during the day and put on the wrist strap for 5 hours. Most of the time I was just watching tv, though it was obvious the few times I got up to go to the bathroom or other active moments, because of increase in pulse rate.

The oxymeter is the CM505FW Wrist monitor with bluetooth, though for this exercise I had it on recording not direct. I didn't note every little thing I was doing but for the first couple of hours I was sitting watching tv, then there are a couple of times when I went downstairs or upstairs to answer the door or go to the bathroom - these show the increased pulse rate. But most of the time I was sitting quietly watching tv, aside from an hour when I was talking with a visitor.

In those 5 hours, I had 102 SpO2 "events" where oxygen dropped by at least 4% during a minimum of 10 seconds. That's 20 per hour. On the analysis chart it also said that the average event duration in seconds was 51 seconds. Most of the events (77) were in the between 90 and 95% but 24 events (again, during 5 hours) were between 85-90% The lowest was at 84%.

Overall, 52% of the time my oxygen level was below 95%, and 5% of the time it was below 90%.

The pulse rate was also all over the place. It shows events where pulse rate changes by 6 beats per minute for at least 8 seconds. Of those, I had 171 "events" over the 5 hours. An average of 35 per hour. I know at least 3 or 4 of those were when I took the stairs, but again, most of the time I was sedentary.

I think this is why I was wondering if I need the CPAP - I'm not saying I don't, but I didn't want to just use it and consider the problem taken care of if there it a different underlying problem that needs resolving. I was genuinely surprised at these results, I was sure it would be similar to the night time or even better, but not worse!

I do plan to take this information to my doctor (GP) on Thursday, and see what he thinks might be going on.

Paula, thank you for the help. I will check out that link up above - it would be nice if I could set up the machine, but only once I understand it better, and understand what I need. Some doctors just don't like to share, lol. But they can learn.
(This post was last modified: 09-02-2012 01:16 AM by allwaysjudee.)
09-02-2012 01:14 AM
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Sleepster Offline
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Posts: 4,988
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: #16
RE: Do I really need this?
(08-31-2012 02:41 AM)allwaysjudee Wrote:  I was told after the test that I had an APNEA of 30 incidents per hour, most of which were hypopnea in nature, but my oxygen was lowering during these events. The lowest oxygen was 87, during one event, but mostly it lowered to around 90.

You had 30 events per hour, that's one every two minutes! That slight drop in oxygen level may not concern you as much as a larger drop. All it means, though, is that your body wakes itself up before it'll let the oxygen level drop any further.

These repeated arousals prevent you from getting into the deeper restorative levels of sleep necessary for you to live a full life. You are leading a sleep-deprived life. That leads to anxiety, depression, sexual dysfunction, and an overall lower quality of life.

Without CPAP therapy you will lead a miserable sleep-deprived life and die early of a heart attack or stroke. I watched my father live that way. I'm thankful that I don't have to do it.

Quote:I discovered that while sleeping on my back I averaged about 5 events per hour where oxygen dropped - the measure being a drop in 4% for over 10 seconds.

That just means that your body woke itself up before the oxygen level could drop any lower for those 5 events. What about the other 25 events? Your body woke itself before the oxygen level could drop enough to register on your oximeter.

If you want to get more meaningful data look at what your S9 is recording, assuming you have the Elite or Autoset and not the Escape. It'll tell you how many events you're experiencing while sleeping.

Unless you videotape yourself, there's no way you can be sure whether you're sleeping on your side or your back. I can't fall asleep on my back, either, but I sometimes wake up lying on my back. There's no way to tell without a camera how long I was sleeping on my back before I awoke.

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: 09-02-2012 12:24 PM by Sleepster.)
09-02-2012 12:22 PM
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PaulaO2 Offline
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Posts: 8,062
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: #17
RE: Do I really need this?
(09-02-2012 01:14 AM)allwaysjudee Wrote:  Paula, it says Autoset on it - and there are some letters, EPN, I think, though I'd have to go check again.

Cool. The Autoset is a good machine. The EPR is the 'exhale pressure relief', the tradename Resmed uses for their, well, exhale pressure relief.


Quote:I'm wondering if I have a more general problem, though. I decided to test my oxygen levels during the day and put on the wrist strap for 5 hours.

(...)

I think this is why I was wondering if I need the CPAP - I'm not saying I don't, but I didn't want to just use it and consider the problem taken care of if there it a different underlying problem that needs resolving. I was genuinely surprised at these results, I was sure it would be similar to the night time or even better, but not worse!

The results you got were not terribly unusual. But you are confusing yourself.

Sleep apnea is a sleep disorder. That means you stop breathing in your sleep. Low oxygen during the night is but one symptom of it. A CPAP won't necessarily raise an already low oxygen level. What it will do is keep your airway open so that you breathe. That alone raises your blood oxygen level.

Low oxygen levels during the day have nothing to do with your sleep apnea. It could be a condition all on its own. It won't make your sleep apnea worse but it won't make it better, either. If anything, it is the opposite. Your sleep apnea is dropping your oxygen levels lower than they already are.

An oximeter is a dumb machine. Meaning it knows nothing but what it is reading. It takes nothing else into consideration. It doesn't know if it is on your finger correctly or not. It doesn't notice that you are sitting vs walking. So you CANNOT go by the O2 meter's level as any kind of a diagnostic tool other than to read your pulse rate and blood O2 as it is at that moment. However, a CPAP machine, and especially your Autoset, is not a dumb machine. It uses all sorts of variables in determining what pressure to use, how long your event is lasting, what pressure it took to stop it, etc.

There are other conditions that can cause a drop in blood O2. And one of those conditions is sleep apnea. When you stop breathing, your blood O2 drops. And since yours appears to already be low to begin with, that makes it even worse. This is why using your CPAP is important.

Using supplemental oxygen during the day is not going to cure your sleep apnea.

A heart surgery or anything else may assist with your blood oxygen levels but it's not going to help with your sleep apnea.

Your blood oxygen levels during the day has nothing to do with you stopping breathing in your sleep. Nothing. Yes, it factors into the drop of blood oxygen during an event but it has nothing to do with you stopping breathing in the first place.

It sounds as if you really really really don't want to use your CPAP. And that is your decision. We can't make you. Your doctor can't make you. Only you can. To be completely harsh and blunt, you are looking for anything, even another even worse disease or condition, to get out of using your CPAP. You aren't going to find it. What you will find is that if you actually do have something else going on, your use of your CPAP machine is going to help, not hinder, not make worse, not whatever. But actually help.

But again, we can't make you. Only you can. And it is your choice. Go back and read this. Hopefully it will help you with your choice. If not, well, we tried.

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.
09-02-2012 02:05 PM
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allwaysjudee Offline

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Posts: 6
Joined: Jul 2012

Machine: ResMed S9
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CPAP Software: Not using software

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Post: #18
RE: Do I really need this?
Paula and Sleepster, thank you again.

I'm not really really really trying to get out of using the CPAP. Unsure I know it may sound like that, but it's not the case. I just didn't want to ignore other possible problems that could be going on. In my mind, the overall lower oxygen is something that needs investigating. I didn't want to ignore that just because I use the CPAP at night.

And if I do have an underlying problem causing the lower oxygen levels during the day, that doesn't mean I don't need the CPAP at night to help prevent the stops in breathing. I really wasn't trying to say I didn't need the CPAP, I just want to make sure all bases are covered.

Your explanation did help me distinguish the two. If there is an underlying problem with daytime oxygen, then it can only be worse if I'm not breathing properly at night. I do intent to stay with the CPAP and check what is going on.

Unfortunately, the doctor removed all files from the memory card - saved it on his machine. So any information I glean will have to be from this point on. I downloaded the software for ResMed, (ResScan 4.1) though haven't installed it yet, as I don't have any info to read.

Speaking of which, I'm not sure how to read it. The doctor had some kind of mini card reader that he attached to his computer via USB cable. My desktop PC has some built in card readers for SD discs, etc, will that work? I don't like the idea of the doctor not sharing this information, but I think I can get him to understand that I will not be kept out of the loop.

Meanwhile I do intend to take a few more daytime readings and talk to my doctor about the lower oxygen levels. But I also intend to give the CPAP another go, starting tonight. I would have started this weekend, but I didn't have any distilled water. Bigwink

I do appreciate your bluntness and your efforts.

Sleepster, I'm sorry for what you had to experience with your dad.

Paula, thanks again for clarifying the day/night O2.

Don't give up on me, I haven't.
Dreaming Judee
09-03-2012 01:44 AM
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PaulaO2 Offline
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Posts: 8,062
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: #19
RE: Do I really need this?
The data is still on the machine. Removing it from the card meant it was just put back on when he put the card back in. The data on the screen resets at noon each day (or when the machine thinks it is noon based on its clock) but it is still on the card.

The S9 uses ye olde standard SD cards which any SD card reader can read. Your doc must have to use an external card reader.

When you look at the data, the main thing to watch is the AHI and the leak rate. The AHI needs to be less than 5. The leak rate seems to vary depending on the mask. What it does it says a mask "leaks" air out the exhaust port x amount so it compensates for the leak by increasing the pressure slightly. Too large of a leak and the data is skewed.

Kinda like a bucket that holds 5 gallons. You are using 2 of those gallons and another gallon is leaking out a hole. The water source must then supply 3 gallons an hour to keep up with your use and maintain the 5 gallons. If it can't keep up, is it you that is using more water or has the hole gotten bigger? So it increases the water amount, trying to keep up the 5 gallons. Your usage data then is wrong.

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.
09-03-2012 05:29 AM
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Sleepster Offline
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Moderators

Posts: 4,988
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: #20
RE: Do I really need this?
You can ask your doctor for a report, which is a detailed summary of the data on your card.

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.
09-03-2012 10:29 AM
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