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Do I really need this?
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allwaysjudee Offline

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Joined: Jul 2012

Machine: ResMed S9
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Post: #1
Do I really need this?
I'm struggling with whether to continue with the CPAP treatment. Here is my history.

I'd been waking with some numbness around the mouth, which could be related to other things, but wanted to check out the sleep patterns so had the overnight test.

The test was uncomfortable, as I'm not used to sleeping on my back, and the be was very hard (I have a waterbed at home). 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.

I've struggled getting the CPAP correct. Mostly it was waking me from too much pressure, but that got changed and I did finally get used to it. But I wanted to see how I was breathing during the day, so I bought an oxymeter and tested my oxygen levels during the day off and on.

I discovered that most of the time my oxygen level was around 92-93. I'm not a very active person, due to other physical problems - muscular damage from old radiation treatments. Since most of my events during the test were related to shallow breathing, I wanted to ask my sleep specialist about that.

When I talked to him, he shrugged off the daytime values, told me it was normal to have lower oxygen levels when at rest, and not to worry about it, then gave me another pep talk about the CPAP and how I needed it.

Okay, so, then we came into a hot spell. I couldn't stand the mask, and decided to take a break from it. I also exchanged my oxymeter for a wrist model for overnight checking.

I checked my oxygen rates for low oxygen events. I realize this is not the same as apnea events, but it was what I was concerned about. 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. Also, the average time of an event was over a minute of low oxygen before recuperating. There were 13 events during the whole period that dropped below 90.

Sleeping on my stomach or side, my preferred position, resulted in an average of 2 events per hour - again, close to a minute in duration, but significantly fewer than when sleeping on my back. The ovenight average of incidents where oxygen dropped below 90 was around 3 per night.

I know this board is full of people who see the value of the CPAP, and I agree it can be necessary for many people. I plan to do some controls of oxygen levels during CPAP, but until today I really haven't had the courage to try it again. I sleep better on my stomach, and the mask won't work that way. But I do want to see how much difference it makes in the oxygen levels.

The thing is, if it's perfectly normal for oxygen levels to be as low as 92 during inactive periods in daytime, then why is it so important that I use a mask when my oxygen only falls below 90 2 or 3 times during the night?

As long as I continue to sleep on my stomach, it should be fine, right? My insurance is paying for this, so money is not the issue, but why use this if I don't really need it?
08-31-2012 02:41 AM
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Moriarty Offline

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Posts: 270
Joined: Jul 2012

Machine: Respironics REMStar 50 Series Auto
Mask Type: Nasal pillows
Mask Make & Model: Fisher & Pakel Pilairo Q
Humidifier: Respironics System One
CPAP Pressure: 8.5-20 (average 9.4)
CPAP Software: SleepyHead

Other Comments: Image above is my CPAP machine...

Sex: Male
Location: Toowoomba - Qld - Australia

Post: #2
RE: Do I really need this?
Hi and welcome...

I'm not sure what you are looking for in your post.

I might be wrong of course but it seems to me like you are pretty well decided on what you want but you want some one to tell you its OK.

We cannot know your full history and details of your diagnosis without those a casual responder could give quite the wrong advice.

I would not try to persuade you to keep on the CPAP or not to keep on with it... but I would encourage you to talk about the positional aspects of your Apnea/Hypopnea with your physician. You didn't mention if you have to be 'compliant' for any particular reason (like a Driver's Licence) but you may get agreement that you are under control if you use an appliance to ensure you sleep on your side.

Good luck with it.

Cheers

David
(This post was last modified: 08-31-2012 06:44 AM by Moriarty.)
08-31-2012 06:38 AM
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EyesWideOpen Offline

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Posts: 87
Joined: Feb 2012

Machine: ResMed S9 Autoset
Mask Type: Nasal pillows
Mask Make & Model: ResMed Swift FX
Humidifier: ResMed H5i
CPAP Pressure: 6 - 14
CPAP Software: ResScan

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Sex: Male
Location: Ontario, Canada

Post: #3
RE: Do I really need this?
I would suggest that you look for another mask rather than giving up on CPAP. 30 incidents per hour is considered severe sleep apnea, and you are at risk of further health complications by not treating this.

With CPAP treatment I went from 86 Apneas per hour to .1 using the new ResMed S9 Autoset. You have a similar machine, and with a more comfortable mask that fits properly, you should be able to attain the same kind of results. The oxygen levels will look after themselves after that. The worst that you will get is what you get during the day as far as oxygen levels are concerned.

Don't give up.
08-31-2012 06:42 AM
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jdireton Offline

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Machine: Resmed S9 Elite
Mask Type: Nasal mask
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CPAP Pressure: 12
CPAP Software: ResScan

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Sex: Male
Location: Florida

Post: #4
RE: Do I really need this?
Judee,

As already stated, you should work with your doctor. We're not doctors and we don't know your whole health status. If you don't like what your doctor is telling you, I'd say get a new one.

30 events per hour is the cut off for "severe" level sleep apnea. While blood oxygen desaturation is a primary physiological effect of apneas, there are also physiological impacts on your sleep efficiency. If you don't get the right rhythm of sleep, stage 1, stage 2, stage, 3, REM, etc. studies show it can cause cognitive impairment, memory loss, and higher risk for heart attack, stroke, diabetes, and other generally bad things. Not to mention that others on this forum and myself understand the term "brain fog" all too well.

This forum has a core value of empowering the patient. Only you can decide what is best for you. Blood oxygen levels are a great way of screening the efficacy of xPAP treatment, but they are only one aspect. I think it would be safer to say that, if your blood oxygen is dropping to <90% repeatedly during the night you might have an issue. The inverse, blood oxygen >90% most of the time, is not as solid a conclusion.
08-31-2012 08:00 AM
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BabyDoc Offline

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Posts: 184
Joined: May 2012

Machine: ResMed S9 Autoset
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Humidifier: ResMed H5i with Climateline Tubing
CPAP Pressure: 6.0 -16.0 CM
CPAP Software: ResScan SleepyHead

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Sex: Male
Location: Beachwood, OHIO

Post: #5
RE: Do I really need this?
I am a physician. Normal O2 saturations at rest vary with age. They are slightly lower in people in their 60's and above. While most people have pulse 02 sats of 95 percent or more, many healthy people have 02 sats between 92 and 94 percent. I do. Try hyperventillating and I'll bet you will see within about 30 seconds that your 02 sat goes up above 95 percent.

Another thing to consider is that many pulse oximeters are made with algorhythms that purposefully give a slightly lower reading that what you would get if you actually measured a blood gas oxygen saturation at the same time. The reason for this lower reading is that a pulse oximeter is only accurate to = +- 2 percent, no matter how expensive the device is. The algorhythm reports a lower reading to protect against the device giving a falsely high reading where you might suffer from doing nothing about it. In other words, while it is just as likely for a pulse ox reading to be 2 percent lower or higher than the actual reading, the device purposefully reports all readings slightly lower to avoid your missing a hypoxic event, which it would do if it reported too high.
(This post was last modified: 08-31-2012 11:57 AM by BabyDoc.)
08-31-2012 08:24 AM
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cbramsey Offline

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Posts: 900
Joined: Mar 2012

Machine: ResMed S9 Autoset
Mask Type: Nasal mask
Mask Make & Model: ResMed Mirage FX
Humidifier: ResMed H5i with ClimateLine
CPAP Pressure: 6 - 12
CPAP Software: ResScan

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Sex: Male
Location: NC, USA

Post: #6
RE: Do I really need this?
First of all, welcome to the forum!!!! We are glad you joined us!!! Welcome

In my opinion, you should do this to your sleep specialist. [Image: face-slap.gif]

Your sleep specialist should have access to the data from your CPAP and should be able to see from the data the issues you are describing. You might want to get with the DME and see if there is another mask that might work better for you.

Best of luck to you. Sleep-well

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.
08-31-2012 08:48 AM
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lonnieb Offline

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Machine: ResMed S9
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Mask Make & Model: Phillips ComfortGel Blue
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Other Comments: I intend to live forever. So far, so good:Steven Wright

Sex: Male
Location: Tennessee

Post: #7
RE: Do I really need this?
allwaysjudee wrote:
I'm struggling with whether to continue with the CPAP treatment. Here is my history.

I've struggled getting the CPAP correct. Mostly it was waking me from too much pressure, but that got changed and I did finally get used to it.


We all or most of us struggle with some form of the CPAP treatment some more than others but it can be a life saver ,I will not try to talk you into anything but with 30 incidents per hour
I believe I would not only give my best shot , I would master the things that I was struggling with and maybe extend my life. I can tell you from a little of experience that it has do wonders for me.
Sleep-well


Difficulties mastered are opportunities won.
Winston Churchill
(This post was last modified: 08-31-2012 08:59 AM by lonnieb.)
08-31-2012 08:56 AM
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PaulaO2 Offline
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Posts: 8,065
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: #8
RE: Do I really need this?
I'll echo what others have said. Try another mask. Some of us went through a LOT before we found one that worked. Some folks never find one that matches all their needs and they switch between one or two depending on mood or need.

Why did they make you sleep on your back during the study? That position generates the most obstructive events so maybe they wanted to see the worst case scenario but didn't they have you lay on your side during the test? If I remember correctly, in my two studies, I was allowed to sleep on my side although the test results say I did roll onto my back several times.

I am 47, obese, and quite stationary in terms of walking around. My O2 levels while sitting here never go below 97%. I suggest you speak to your GP about the lower O2. There are lung function tests that can be done to determine if it is your normal or if there is an issue. Most GPs have this cardboard tube that you blow into as hard as you can and they measure how far the tube moved (not across the room, but within itself).

I also agree with the 'sit down with your sleep doc and tell him/her everything'. Do not accept a shrug as an answer.

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.
08-31-2012 10:28 AM
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PaulaO2 Offline
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Moderators

Posts: 8,065
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: #9
RE: Do I really need this?
And to answer the question in your subject line:

The muscles in our throats are considered voluntary muscles meaning we control them. We probably don't know we are doing it (swallowing, speaking, yawning, etc) because it is so automatic a thing for us just like we don't think of which muscles need to move to raise our arm, extend a finger, and scratch our nose. We just do it. So when we sleep, like our arm, our throat muscles relax. Obstructive apnea is when those throat muscles relax to the point they collapse and shut. It's not as gentle a process like returning our arm back to our sides. Snoring is those muscles literally flapping in the breeze. The flapping gets worse until they slam shut. That's an obstructive apnea event. A hypopnea event is where it doesn't slam completely shut but allows less and less air through until our breathing is shallow. This means that we are getting, at least, 30% less of the air our lungs should be taking in.

If your AHI was 30, that means that for each hour you slept during the test, you stopped breathing 30 times for at least 10 seconds each. That means that every other minute of that hour, YOU STOPPED BREATHING or was getting 30% LESS air. Let me repeat that.

Every other minute of each hour, you stopped breathing or was getting 30% LESS air.

To clarify, 'stopped breathing' not only means you didn't take in a breath. It means you also struggled in your sleep as your body went into panic mode, trying to wake you up enough so that you opened your throat. Your body twitched and jerked until you finally came out of your sleep enough that you opened your throat and you were able to breathe again. The same goes for a hypopnea event

All was fine until, sixty or so seconds later, YOU DID IT AGAIN.

Blood oxygen levels mean that your blood is carrying X% of oxygen to the cells in your body. So at 87% satO2, each and every cell in your body was receiving only 87% of the oxygen it needed. Each and every cell.

Every other minute, each and every cell was oxygen deprived.

Cells rely on oxygen to do their jobs. Eventually, this continual oxygen starvation begins to cause problems. Heart issues, brain issues, organ issue. Then there's the not sleeping well. Driving while drowsy is as dangerous as driving drunk. Everything from job performance to daily life skills are affected.

It's not just your sleep that is being disrupted. It is your entire day, the rest of your life.

So do you need this? No one can live your life but you. Which is a good thing because if you don't use your CPAP, you won't have a life to live either because you will either die or slowly die from more and more conditions directly or indirectly caused by your sleep apnea.

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.
08-31-2012 10:53 AM
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mjbearit Offline

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Posts: 605
Joined: May 2012

Machine: REMstar Auto AFlex DS550
Mask Type: Nasal pillows
Mask Make & Model: RESMed Swift FX
Humidifier: Heated humidifier - 2
CPAP Pressure: 12.5-20
CPAP Software: SleepyHead EncoreBasic

Other Comments:

Sex: Male
Location: So Cal

Post: #10
RE: Do I really need this?
Personally I feel that you need to be discussing this with your doctor. If you feel your current doctor is not listening to you or taking your concerns seriously, get another doctor. I had a chat with my ortho doc the other day. I have had my HMO for many years. She was looking at my chart and said "You have had some really good doctors!". I responded to her like this "I am in charge of my health care. I do not blindly do whatever anyone tells me to do. I hire doctors to provide their expert opinions and skills. However, the final decision on anything concerning my health is mine. If a doctor does not want to work with me, he is fired. I have burned through a lot of doctors to get the doctors I have had. Should this doctor I have now leave the HMO, I will probably burn through several more." Boottom line is that you have to take control. You listened to the doc regarding the CPAP. If he is not listening to you about the same thing, time to find one you can communicate with better. That does not mean you change doctors until you find one that agrees with you, it means you find one that you can have a conversation with. Good luck with your treatment!

As always, YMMV! You do not have to agree or disagree, I am not a professional so my mental meanderings are simply recollections of things from my own life.

PRS1 - Auto - A-Flex x2 - 12.50 - 20 - Humid x2 - Swift FX
08-31-2012 11:03 AM
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