Either Or

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
Noctuary
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Either Or

Post by Noctuary » Mon Dec 08, 2014 8:22 pm

Day in, day out. I either feel refreshed and fatigued, or not fatigued and unrefreshed. I would rather feel refreshed and fatigued to tell the truth.

God, I hate living like this.

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Midnight Strangler
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Re: Either Or

Post by Midnight Strangler » Mon Dec 08, 2014 8:37 pm

Noctuary wrote:I either feel refreshed and fatigued, or not fatigued and unrefreshed
I am trying to understand this. How can one feel refreshed and fatigued at the same time? Maybe you are tired but took a dip in a cold stream?

But seriously, I don't understand.

In any case, you don't feel good. What is your AHI with the machine?

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grayghost4
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Re: Either Or

Post by grayghost4 » Mon Dec 08, 2014 8:39 pm

I see you have a S9 Escape .... that is unfortunate, it will not record any data to help you with your tharapy. If you just recently got it ... go back and get one that will record data. Tell us more about your sutuation and people here will try to help you, if you want help .... if you just want to vent ... that is OK .
If you're not part of the solution you're just scumming up the bottom of the beaker!

Get the Clinicians manual here : http://apneaboard.com/adjust-cpap-press ... tup-manual

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Wulfman...
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Re: Either Or

Post by Wulfman... » Mon Dec 08, 2014 9:43 pm

Noctuary wrote:Day in, day out. I either feel refreshed and fatigued, or not fatigued and unrefreshed. I would rather feel refreshed and fatigued to tell the truth.

God, I hate living like this.
I'm really having trouble feeling sorry for you. I suggested switching to straight pressure some time ago and apparently you haven't. They say doing the same thing over and over and expecting different results is the definition of "insanity".

Another problem with having a data-less machine is that you don't know if you're losing your therapy air out your mouth while you sleep.

My machine: ResMed S9 Escape Auto/H5i humidifier; in APAP mode- pressure range 7-20

Mask: Flexifit 407


Den

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Noctuary
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Re: Either Or

Post by Noctuary » Mon Dec 08, 2014 10:39 pm

I'm really having trouble feeling sorry for you. I suggested switching to straight pressure some time ago and apparently you haven't. They say doing the same thing over and over and expecting different results is the definition of "insanity".
Actually, I did, and it made me feel worse. As did narrowing my pressure range.

As for a different machine, I can't afford another machine.

And with that I bid you goodbye.

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Noctuary
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Re: Either Or

Post by Noctuary » Mon Dec 08, 2014 10:41 pm

Midnight Strangler wrote:
Noctuary wrote:I either feel refreshed and fatigued, or not fatigued and unrefreshed
I am trying to understand this. How can one feel refreshed and fatigued at the same time? Maybe you are tired but took a dip in a cold stream?

But seriously, I don't understand.

In any case, you don't feel good. What is your AHI with the machine?
What I mean one day I feel like I really slept all night, but my body feels tired. The next day I won't feel that body fatigue, but I will feel like I haven't slept at all. The latter is how I feel now.

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Noctuary
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Re: Either Or

Post by Noctuary » Mon Dec 08, 2014 10:44 pm

grayghost4 wrote:I see you have a S9 Escape .... that is unfortunate, it will not record any data to help you with your tharapy. If you just recently got it ... go back and get one that will record data. Tell us more about your sutuation and people here will try to help you, if you want help .... if you just want to vent ... that is OK .
I can't afford another machine. I bought a laptop so I could use sleepyhead, but the sleepyhead just crashes, so that was more money down the drain.

I just don't understand how people can go for years feeling like this.

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Pugsy
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Re: Either Or

Post by Pugsy » Mon Dec 08, 2014 10:55 pm

You are going to need to use ResScan to get the data that the S9 Escape Auto will gather..which is mainly the AHI and pressure.
I don't know if you can get the AHI on the machine's LCD screen or not. If you can then you don't really need the software.

This link will explain how to get ResScan
http://www.apneaboard.com/forums/Thread ... -available

Without any data of any kind it is impossible for anyone to hazard a guess as to what the problem might be.
Heck for all we know your mask may be leaking something awful.

Perhaps a return visit to the doctor is in order.

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Re: Either Or

Post by Guest1 » Mon Dec 08, 2014 11:02 pm

I will hazard a guess:
1) On the days you feel refreshed and fatigued, this is what is happening:
a) you are sleeping well, your AHI and RERAs are minimal. As a result:
b) You don't move much at all. As a result you are waking up with aches and pains in weird places and feeling fatigued all over.

2) On the days, you feel not refreshed but not fatigued:
Vice Versa.

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Wulfman...
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Re: Either Or

Post by Wulfman... » Mon Dec 08, 2014 11:25 pm

Noctuary wrote:
I'm really having trouble feeling sorry for you. I suggested switching to straight pressure some time ago and apparently you haven't. They say doing the same thing over and over and expecting different results is the definition of "insanity".
Actually, I did, and it made me feel worse. As did narrowing my pressure range.

As for a different machine, I can't afford another machine.

And with that I bid you goodbye.
How long? What setting(s)?

I have a hard time believing you'd feel "worse".


Den

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(5) REMstar Autos w/C-Flex & (6) REMstar Pro 2 CPAPs w/C-Flex - Pressure Setting = 14 cm.
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TyroneShoes
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Re: Either Or

Post by TyroneShoes » Mon Dec 08, 2014 11:58 pm

If we step back and take a helicopter view, it is possible that SA has nothing at all, whatsoever, to do with how you feel. It can, but it is not a metric to be depended on.

As an example, I have had severe SA for decades and just started therapy 3 months ago, out of the same continuing ignorance that plagues another 10 million untreated sufferers. But I don't really "feel" better, other than daytime sleepiness is gone and I feel more connected to life. But physically, I never felt bad in the first place, for those same decades, so I would not expect to feel "better", just because I am now treating my SA. The fact that I never felt bad likely contributed to my ignorance regarding my SA, as well as my inertia towards abhorring the therapy. But I am a a lot smarter about that now that I understand that something as simple as wearing a mask during sleep has the real potential to make the difference between making it to 70, or making it to 90. That is a strong motivator, and had I not been ignorant of that, I would have been in therapy much earlier.

As another example, last night I had an AHI over twice what it has been at its max for close to 5 weeks. Did I feel any worse? Not in the least. Slept like a baby, awoke refreshed. I just don't see any reliable connection between therapy efficacy and how I feel.

The benefits of therapy are enormous, and numerous, but may have nothing at all to do with the way you feel on or off therapy. This implies that there may be something else going on, completely separate from any sleep disturbance issues. If therapy is supposed to make you feel better, then if it isn't, maybe it is not therapy that is needed or effective for you in relationship to fixing whatever is making you feel this bad. But again, the therapy is not designed to make you feel better, it is designed to make you healthier and as a prophylaxis against things that can seriously deteriorate your health.

Those who report feeling better, more power to them, but that is nothing other than a happy accident, or serendipity, and not a metric telling them how effective the therapy is. It's great, and lucky, just not universal. And as far as how effective the therapy might be, it really isn't an indicator at all, and only means one thing, which is that they feel better, which can be completely unrelated to how effective the therapy is, which is why that is not a reliable metric.

So "how you feel" is not a reliable metric of therapy efficacy, but hard numbers that comprise your AHI are indeed a reliable metric, because they tell us exactly how many and what kind of sleep disturbance events you are experiencing. And as that number goes lower, the efficacy increases in direct relationship. IOW, we can measure that directly, and can be assured that those numbers relate directly to efficacy.

It is possible that because you are on SA therapy, you have been deluded into thinking that this is therapy targeted to making you feel better, and the plain truth is that it is not, and that delusion may be distracting you from getting whatever non-SA therapy it is that you might need. Definitely food for thought.

So, were it me, I would make it my number one task to find out how effective the therapy is by getting the hard numbers that comprise that reliable metric of AHI. And if those numbers are good and I still did not feel good, I would then begin to look elsewhere for the cause of what by then must certainly be regarded as a separate, different issue. After all, sleep disturbance issues can't possibly make you feel bad if you have therapy that is effective enough to eliminate them; if you have minimal sleep disturbances due to effective XPAP therapy, then something else is at the root of what is making you feel bad. That is a complete and total no-brainer.

You sound like someone who has simply given up and is about to check out. If so, that is indeed tragic.

Don't do that, Noc. Fight to figure this out. Fight to understand. Fight to get the proper fix. Taking action by itself will make you feel better. We will try to help. We are here, and we are on your side.

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Last edited by TyroneShoes on Tue Dec 09, 2014 12:29 am, edited 1 time in total.

Noctuary
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Re: Either Or

Post by Noctuary » Tue Dec 09, 2014 12:17 am

Pugsy wrote:You are going to need to use ResScan to get the data that the S9 Escape Auto will gather..which is mainly the AHI and pressure.
I don't know if you can get the AHI on the machine's LCD screen or not. If you can then you don't really need the software.

This link will explain how to get ResScan
http://www.apneaboard.com/forums/Thread ... -available

Without any data of any kind it is impossible for anyone to hazard a guess as to what the problem might be.
Heck for all we know your mask may be leaking something awful.

Perhaps a return visit to the doctor is in order.
Yes, my nightly AHI is on screen; its always under 4. The machine is on APAP, pressure between 7-20. I've tried narrowing the pressure by raising the minimum to 8 or 9, but that didn't help.

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Noctuary
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Re: Either Or

Post by Noctuary » Tue Dec 09, 2014 12:26 am

As an example, I have had severe SA for decades and just started therapy 3 months ago, out of the same continuing ignorance that plagues another 10 million untreated sufferers. But I don't really "feel" better, other than daytime sleepiness is gone and I feel more connected to life. But physically, I never felt bad in the first place, for those same decades, so I would not expect to feel "better", just because I am now treating my SA. The fact that I never felt bad likely contributed to my ignorance regarding my SA, as well as my inertia towards abhorring the therapy. But I am a a lot smarter about that now that I understand that something as simple as wearing a mask during sleep has the real potential to make the difference between making it to 70, or making it to 90. That is a strong motivator, and had I not been ignorant of that, I would have been in therapy much earlier.
Damn, I'm the opposite. The thought of living past 50 fills me with horror.

I wish I could trade places with you; I would rather face this harsh world with more energy and a refreshed feeling. I can't imagine going on for another decade feeling like crap. But having said that, let me say that the machine has made a difference; I was ready to eat a bullet (so to speak) before. Now the house is clean (er) and my bills are paid on time. I spent several months this year where that was not so.
So, were it me, I would make it my number one task to find out how effective the therapy is by getting the hard numbers that comprise that reliable metric of AHI. And if those numbers are good and I still did not feel good, I would then begin to look elsewhere for the cause of what by then must certainly be regarded as a separate, different issue. That is a complete and total no-brainer.
According to the readings on-screen, I am below 5 every night, usually between 2-3.8; sometimes at 1.

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TyroneShoes
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Re: Either Or

Post by TyroneShoes » Tue Dec 09, 2014 12:36 am

And there is your answer.

Those numbers indicate virtually full and 100% effective treatment.

So when on XPAP, you no longer have SA. It's gone.

So then the question becomes "what else is there that could be making you feel bad?", because you no longer have SA. SA pleads "not guilty", and has an iron-clad alibi.

That is a very positive step in the right direction. Congrats.

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Hawthorne
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Re: Either Or

Post by Hawthorne » Tue Dec 09, 2014 7:13 am

I hear your problem and I can really relate! I have been on cpap for just over 12 years (severe). I know that my sleep apnea is under excellent control because I use Sleepyhead and see the results every morning and I know I am sleeping well. AHI is almost always below 1. I have very few events. Any centrals I have are usually when I am just settling to sleep and I never have many,

BUT - I have Rheumatoid Arthritis (have had it for 23 years). One of the symptoms of RA and the meds I need to take to manage it cause a lot of fatigue. I deal with fatigue every day even though I sleep well with my mask and cpap.

I am not suggesting you have RA (you may have though) BUT you may well have some other condition that is causing the feeling you have. Get yourself checked out ASAP! Sleep Apnea does not cure everything and sleep apnea cannot be blamed for everything. Cpap can help prevent strokes and heart attacks or heart problems caused by the stress on your body when you stop breathing during your sleep but it cannot cure many things.

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