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Tired even with CPAP? Please read....
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rwin Offline

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Posts: 9
Joined: Sep 2013

Machine: Philips Respironics REMstar Auto A-Flex
Mask Type: Full face mask
Mask Make & Model: ResMed Mirage Liberty
Humidifier: Philips Respironics System One Heated Humidifier
CPAP Pressure: 12-15.5
CPAP Software: SleepyHead

Other Comments:

Sex: Male
Location: Memphis, TN

Post: #1
Tired even with CPAP? Please read....
After 8 months of being dx with OSA and using CPAP with 100% compliance and experiencing no apparent impact on fatigue or health symptoms despite several arguments with sleep specialist I found a new sleep doctor (neurologist) who miraculously discovered I also had idiopathic hypersomnia as well as OSA.

I was informed many sleep clinics often do the basic and never go beyond the sleep apneas. I was also informed that someone with a sleep disorder often has more than one sleep disorder. If you are having ZERO results with CPAP despite 100% compliance and low AHI's then seek another doctor who will administer a nap study (mslt) and figure out why you are still tired. Hope this helps.....
02-08-2014 02:19 PM
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trish6hundred Offline

Advisory Members

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: #2
RE: Tired even with CPAP? Please read....
Hi rwin,
Hopefully, now that you have found out that you have another problem that interferes with sleep, you can now get better, more restful sleep.
Best of luck.

trish6hundred
02-08-2014 02:44 PM
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Gabby Offline

Preferred Members-2

Posts: 664
Joined: Dec 2013

Machine: ResMed AirSense 10 AutoSet For Her
Mask Type: Nasal pillows
Mask Make & Model: Philips Nuance Nasal Mask
Humidifier: ResMed AirSense 10 For Her
CPAP Pressure: 8-14
CPAP Software: SleepyHead

Other Comments:

Sex: Female
Location: Sunshine Coast, Qld., Australia.

Post: #3
RE: Tired even with CPAP? Please read....
Thanks rwin, I start treatment this week and I am starting to get paranoid that it won't work.
Reading this has given me something to bookmark and keep, just in case I have no success. Not that I am going in to this with a negative attitude but, you never know.

Sleep Tight...
Gabby
02-09-2014 05:26 AM
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robysue Online
Wiki Editor
Advisory Members

Posts: 1,220
Joined: Oct 2013

Machine: PR Dreamstation BiPAP Auto
Mask Type: Nasal pillows
Mask Make & Model: Swift FX
Humidifier: PR Dreamstation humidfier
CPAP Pressure: min EPAP = 4; max IPAP = 9;
CPAP Software: SleepyHead EncoreBasic EncorePro

Other Comments: Papping since September 2010

Sex: Female
Location: Buffalo, NY

Post: #4
RE: Tired even with CPAP? Please read....
(02-08-2014 02:19 PM)rwin Wrote:  After 8 months of being dx with OSA and using CPAP with 100% compliance and experiencing no apparent impact on fatigue or health symptoms despite several arguments with sleep specialist I found a new sleep doctor (neurologist) who miraculously discovered I also had idiopathic hypersomnia as well as OSA.
And does the new doc have a strategy for treating your idiopathic hypersomnia?

And note: The doc's diagnosis of Idiopathic hypersomnia simply means the doc has diagnosed you with excessive (daytime) sleepiness and/or sleeping too much, but there is no obvious cause for the excessive sleepiness. Hence any prescribed treatment will be targeted at relieving symptoms rather than fixing the underlying, but unknown cause of the hypersomnia.
02-09-2014 02:27 PM
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robysue Online
Wiki Editor
Advisory Members

Posts: 1,220
Joined: Oct 2013

Machine: PR Dreamstation BiPAP Auto
Mask Type: Nasal pillows
Mask Make & Model: Swift FX
Humidifier: PR Dreamstation humidfier
CPAP Pressure: min EPAP = 4; max IPAP = 9;
CPAP Software: SleepyHead EncoreBasic EncorePro

Other Comments: Papping since September 2010

Sex: Female
Location: Buffalo, NY

Post: #5
RE: Tired even with CPAP? Please read....
(02-09-2014 05:26 AM)Gabby Wrote:  Thanks rwin, I start treatment this week and I am starting to get paranoid that it won't work.
Reading this has given me something to bookmark and keep, just in case I have no success. Not that I am going in to this with a negative attitude but, you never know.
Gabby,

First of all good luck with the beginning of your therapy. Please try to keep an open mind about starting PAP---negative expectations can become self-fulling prophesies if you're not careful.

That said, it's also important to have reasonable expectations---another source of frustration for newbies is that they will miraculously feel 100 times better within two or three days of starting therapy.

Adjusting to CPAP is a process. Sleeping with a six foot hose attached to your nose is not exactly natural and for many people there's a real learning curve when it comes to training the body and mind how to get to sleep and stay asleep with a CPAP mask on. And for some people that learning curve is steeper than for other people.

I've been participating in a variety of CPAP forums ever since I was diagnosed back in August 2010. Judging from the posters on both this and the other forums, it's reasonable to say that most new CPAPers start to notice some kind of improvement in terms of OSA symptom relief within a month or two of starting therapy.

A few lucky newbies notice real and significant relief within a week or so, but they are the exceptions. A few unlucky newbies have significantly longer than average adjustment periods. (I speak from experience: My first three months of PAPing felt like hell and the next three were more like purgatory. But after about 9 months of therapy, I actually was starting to feel better than I had felt pre-CPAP) And a few very unlucky people never see much improvement in spite of continuing to use PAP for a year or more with good efficacy numbers (AHI < 5.0 every night AND leaks well under control).

Some studies show that as many as 10% of PAPers continue to have problems with daytime fatigue and sleepiness in spite of 100% compliance with therapy and good efficacy numbers. In some cases, it may simply be that the damage the untreated OSA has done to the body is simply too extensive to fully heal once the person is getting high quality sleep with the aid of their PAP. In other cases, it may be that person's sleep remains highly fragmented for reasons other than untreated OSA.

It's also important to realize that the first signs of improvement after starting CPAP may be very subtle and the improvement may be so gradual that you don't really notice it---particularly if you've allowed yourself to believe that there will be a magic "Ah Ha" morning where you suddenly wake up feeling on top of the world. In my case, the first signs that PAP was doing something positive for me was when the phrase, "Woke up this morning with no hand or foot pain" began appearing 2-3 times a week in the sleep log I was keeping as part of my CBT for Insomnia therapy. This started happening about 4-5 months after I started PAPing, and had I not been keeping the sleep log, I don't think I would have noticed it.

Finally, it is well worth reading up on CPAP machines and figuring out which machines are acceptable to you and which are not. In particular, for many newbies, the data provided by a machine that records full efficacy data can provide significant motivation to keep on using the machine if/when the going gets tough in the adjustment period. But most durable medical equipment providers (DMEs) will provide a new CPAPer with a machine that only records usage data instead of full efficacy data. It's critically important that you do NOT get stuck with a machine that records nothing but usage data. And to do that, you need to have done your homework and you need to be willing to shop around at more than one DME.

You may want to visit my blog entry Advice for those newly diagnosed with OSA before you meet with your DME to pick up your equipment.
02-09-2014 02:53 PM
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Gabby Offline

Preferred Members-2

Posts: 664
Joined: Dec 2013

Machine: ResMed AirSense 10 AutoSet For Her
Mask Type: Nasal pillows
Mask Make & Model: Philips Nuance Nasal Mask
Humidifier: ResMed AirSense 10 For Her
CPAP Pressure: 8-14
CPAP Software: SleepyHead

Other Comments:

Sex: Female
Location: Sunshine Coast, Qld., Australia.

Post: #6
RE: Tired even with CPAP? Please read....
Thank you robysuefor taking the time and writing this for me. I have been waiting so long to obtain this machine and I think my confidence is starting to dwindle.
I must admit I have been excited by all the stories from newcomers that say they have felt great after being connected after a few days, so thank you for putting me straight and telling me that may not be the case.
In Australia we do not have a DME. I am getting a ResMed S9 Elite machine so I hope it does what you said I need it to do.
All I want is for my daytime tiredness to be taken away, or at least eased. If my headaches are helped great, but it's mainly the tiredness that is upsetting me the most, I'm almost crying with tiredness. So you can see why I want this cpap to be my answer.
I am prepared to be patient, after all I have waited this long.
PS. I shall check out you blog, thank you.

Sleep Tight...
Gabby
(This post was last modified: 02-09-2014 06:15 PM by Gabby.)
02-09-2014 06:14 PM
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Lukie Offline

Preferred Members-2

Posts: 352
Joined: Nov 2013

Machine: Resmed S9 Auto
Mask Type: Full face mask
Mask Make & Model: Airfit F 10
Humidifier: H I heated tubing resmed
CPAP Pressure: 6-16
CPAP Software: ResScan SleepyHead

Other Comments: Masks: Simplus, Air, Quattro fx, Nano, Eson, Swift fx and Activ

Sex: Female
Location: Vermont

Post: #7
RE: Tired even with CPAP? Please read....
I have been on CPAP for three months and have 100% compliance and an average AHI of 0.6 down from 7. I have been exhausted for years and have terrible sleep patterns. Let me tell you my observations.
1. I am still tired but not as sleepy.
2. My heart rate is a bit slower and I am less obsessed about a fast rate.
3. My blood pressure is normal.
4. I still have some issues with waking up and not going back to sleep easily.
5. This is the biggest plus: I no longer wake up terrified that I'm going to die with a racing heart and gasping for air.

CPAP will not cure an underlying insomnia. It manages sleep disordered breathing. I am tired still but I do have thyroid issues and
obesity. I wasn't expecting miracles in the tiredness department.

I am quite happy with the results and have no problem continuing with treatment.
02-09-2014 07:13 PM
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SnuffySleeper Offline

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Posts: 187
Joined: Jan 2014

Machine: s9 elite
Mask Type: Nasal pillows
Mask Make & Model: Swift FX
Humidifier: H5i
CPAP Pressure: 9
CPAP Software: ResScan SleepyHead

Other Comments:

Sex: Male
Location: Ontario

Post: #8
RE: Tired even with CPAP? Please read....
I think rwin is right. I think my osa is an effect of a bigger problem. The old adage of why your tired, you go to a psychiatrist he'll tell you it's your mind, go to chiropractor he'll tell you it's your back, go to a bed store they'll tell you it's your mattress. Go to a sleep doctor they'll tell you it's OSA Smile

Anyways, no doubt I have sleep apnea and it's serious, but I think there is something going on like polyps and my sleep doctor just did wants constant sleep studies and dosen't want to MRI or X-ray my sinuses or throat. I am thinking of doing the same and switching doctors.
02-09-2014 08:08 PM
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Gabby Offline

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Posts: 664
Joined: Dec 2013

Machine: ResMed AirSense 10 AutoSet For Her
Mask Type: Nasal pillows
Mask Make & Model: Philips Nuance Nasal Mask
Humidifier: ResMed AirSense 10 For Her
CPAP Pressure: 8-14
CPAP Software: SleepyHead

Other Comments:

Sex: Female
Location: Sunshine Coast, Qld., Australia.

Post: #9
RE: Tired even with CPAP? Please read....
(02-09-2014 07:13 PM)Lukie Wrote:  I have been on CPAP for three months and have 100% compliance and an average AHI of 0.6 down from 7. I have been exhausted for years and have terrible sleep patterns. Let me tell you my observations.
1. I am still tired but not as sleepy.
2. My heart rate is a bit slower and I am less obsessed about a fast rate.
3. My blood pressure is normal.
4. I still have some issues with waking up and not going back to sleep easily.
5. This is the biggest plus: I no longer wake up terrified that I'm going to die with a racing heart and gasping for air.

CPAP will not cure an underlying insomnia. It manages sleep disordered breathing. I am tired still but I do have thyroid issues and
obesity. I wasn't expecting miracles in the tiredness department.

I am quite happy with the results and have no problem continuing with treatment.

Thanks Lukie for taking the time to write to me and being honest about your story.
Your positives outweigh the negatives I am pleased to hear, and believe me I am not expecting 100% slate wiped clean, as long as I am able to see some changes I will be more than happy with that.
I noticed you have the Nano mask, that is the one I trialled and have bought. Hopefully long term it will do just fine. I really liked the feel of it on my trial and had no leaks.
I just want to get started in a few days and I will take it one day at a time, after all I have all the time in the world, I'm not going anywhere.

Sleep Tight...
Gabby
02-09-2014 10:11 PM
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retired_guy Offline

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Posts: 2,744
Joined: Jan 2014

Machine: ResMed S9 Autoset
Mask Type: Nasal pillows
Mask Make & Model: Resmed Airfit P10
Humidifier: ResMed
CPAP Pressure: 10.6/14, EPR 3
CPAP Software: ResScan SleepyHead

Other Comments: Is it bedtime yet?

Sex: Male
Location: Beautiful, albeit very wet Oregon Coast

Post: #10
RE: Tired even with CPAP? Please read....
(02-09-2014 02:53 PM)robysue Wrote:  
(02-09-2014 05:26 AM)Gabby Wrote:  Thanks rwin, I start treatment this week and I am starting to get paranoid that it won't work.
Reading this has given me something to bookmark and keep, just in case I have no success. Not that I am going in to this with a negative attitude but, you never know.
Gabby,

First of all good luck with the beginning of your therapy. Please try to keep an open mind about starting PAP---negative expectations can become self-fulling prophesies if you're not careful.

That said, it's also important to have reasonable expectations---another source of frustration for newbies is that they will miraculously feel 100 times better within two or three days of starting therapy.

Adjusting to CPAP is a process. Sleeping with a six foot hose attached to your nose is not exactly natural and for many people there's a real learning curve when it comes to training the body and mind how to get to sleep and stay asleep with a CPAP mask on. And for some people that learning curve is steeper than for other people.

I've been participating in a variety of CPAP forums ever since I was diagnosed back in August 2010. Judging from the posters on both this and the other forums, it's reasonable to say that most new CPAPers start to notice some kind of improvement in terms of OSA symptom relief within a month or two of starting therapy.

A few lucky newbies notice real and significant relief within a week or so, but they are the exceptions. A few unlucky newbies have significantly longer than average adjustment periods. (I speak from experience: My first three months of PAPing felt like hell and the next three were more like purgatory. But after about 9 months of therapy, I actually was starting to feel better than I had felt pre-CPAP) And a few very unlucky people never see much improvement in spite of continuing to use PAP for a year or more with good efficacy numbers (AHI < 5.0 every night AND leaks well under control).

Some studies show that as many as 10% of PAPers continue to have problems with daytime fatigue and sleepiness in spite of 100% compliance with therapy and good efficacy numbers. In some cases, it may simply be that the damage the untreated OSA has done to the body is simply too extensive to fully heal once the person is getting high quality sleep with the aid of their PAP. In other cases, it may be that person's sleep remains highly fragmented for reasons other than untreated OSA.

It's also important to realize that the first signs of improvement after starting CPAP may be very subtle and the improvement may be so gradual that you don't really notice it---particularly if you've allowed yourself to believe that there will be a magic "Ah Ha" morning where you suddenly wake up feeling on top of the world. In my case, the first signs that PAP was doing something positive for me was when the phrase, "Woke up this morning with no hand or foot pain" began appearing 2-3 times a week in the sleep log I was keeping as part of my CBT for Insomnia therapy. This started happening about 4-5 months after I started PAPing, and had I not been keeping the sleep log, I don't think I would have noticed it.

Finally, it is well worth reading up on CPAP machines and figuring out which machines are acceptable to you and which are not. In particular, for many newbies, the data provided by a machine that records full efficacy data can provide significant motivation to keep on using the machine if/when the going gets tough in the adjustment period. But most durable medical equipment providers (DMEs) will provide a new CPAPer with a machine that only records usage data instead of full efficacy data. It's critically important that you do NOT get stuck with a machine that records nothing but usage data. And to do that, you need to have done your homework and you need to be willing to shop around at more than one DME.

You may want to visit my blog entry Advice for those newly diagnosed with OSA before you meet with your DME to pick up your equipment.

There's a bunch of good advice and information in Robysue's post, so I just had to quote it so we could all read it again.

I'm still quite new to this whole thing, but I'm really pleased so far. Sure, I imagine lots of us have other things going on that contributed to the sleep apnea thing. With me it's the result of smoking for a number of years too many and the emphysema I now get to put up with. But I'm doing what I can for the emphysema, and now I'm doing what I can for the sleep thing.

At this point in my journey, I spend a lot of time during the day yawning. But no time during the day falling asleep behind the wheel of the car, or while I'm eating my soup, or whatever. That's a way good improvement. One can learn to love a good yawn.

I still wrestle with my mask at times, but at other times the mask and I are one. I'll go to sleep around 11:00 (it used to be I slept in front of the tv for an hour or so before that) and I'll usually wake up at 3:00 or 4:00. Roll around, stretch, and go back to sleep. Oh, and futz with the mask a bit until it understands what it is we are now doing.

I would imagine the dropout rate for cpap users is quite high. That's really unfortunate. But then, the dropout rate for those needing brain transplant is probably quite high too. I can't wait until I have been doing this for a few years so I can write in and say "I have been doing this for years..." But for now just know that I am dedicated to my cute little machine and suction cup. The mask and I are one...........

So everyone stay with the program and leave the silly mask on your face when you are in bed. I won't do any good on the floor next to your socks.
02-09-2014 10:18 PM
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