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extremely tired all the time. need advice.
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kwhenrykerr Offline
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Joined: May 2016

Machine: DreamStation Auto, AirSense 10 Auto
Mask Type: Full face mask
Mask Make & Model: Amara View
Humidifier: Philips, AirSense 10
CPAP Pressure: 12-20
CPAP Software: SleepyHead

Other Comments: 2L added oxygen with CMS50F to check usage

Sex: Male
Location: Florida

Post: #41
RE: extremely tired all the time. need advice.
More Red Blood cells to carry more Oxygen, like

Just my personal opinion. My posts are not medical advice or a statement of fact. Please consult a qualified physician or other qualified medical personnel. Please comply with all applicable laws, codes, regulations, and protocols.
08-16-2016 06:10 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: #42
RE: extremely tired all the time. need advice.
(08-15-2016 10:32 PM)mikeindc Wrote:  I did a sleep study and was found to have major issues, but it was probably the worst nights sleep I have had ever so I don't think it was a good representation of my normal sleep.

Mine was like that, too. See more on this below.

Quote:For the first month I used the mask every night for about 5 hours, but would take it off early morning when it would start leaking and generally waking me up.

Like so many things in life that seem complicated and frustrating, often the solution is in the basics. I don't know if that's the case here for you, but it might be.

My theory, for those of us who don't sleep well to begin with, feel fatigued but not sleepy when we don't get enough sleep (which is all the time if we have untreated sleep apnea) is we have to re-train our brains to sleep with a CPAP mask on. We have to commit to wearing the mask every time we sleep, all the time we're sleeping. If we allow ourselves to sleep without the mask we undo all the brain-training. We take one step forward, followed by one step back, and so we never get anywhere.

Like you, I struggled with the stupid thing. It took more than a month before I could honestly say I was sleeping as good with it as I had been without it. Which wasn't very good at all. But as the months went by I gradually improved and now I would never want to go back to where I was.

For people who are good sleepers, they strap the mask on for the first time ever, wake up 8 hours later, and feel wonderful. It took me months to get there.

So, if you want to follow my advice, it's simple. But it's not easy. If the mask noise wakes you up and you just can't stand it anymore, get out of bed and don't get back in until you're ready to strap the mask back on again.

You simply can't afford to sleep without the mask. Not only will you lead a miserable sleep-deprived life, you'll die early of a heart attack or stroke.

Sleepster
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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.
08-16-2016 07:12 PM
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mikeindc Offline

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Posts: 8
Joined: Aug 2016

Machine: ResMed Airsense 10
Mask Type: Nasal mask
Mask Make & Model: airsense
Humidifier: Resmed Mirage
CPAP Pressure: 8-12
CPAP Software: SleepyHead

Other Comments:

Sex: Male
Location: DC

Post: #43
RE: extremely tired all the time. need advice.
Thanks for the support.

Because of the potential for heart issues from medications I'm taking (doing chemotherapy off and on for the last 8 years), I get basic heart checkup monthly and extensive checks on annual basis and so far no heart issues or heart enlargement have been noted.

I've had my testosterone levels, and B and D vitamin levels checked about every three years and they are normal. Thyroid levels are low due to chemo, but taking drugs to keep them in the normal range. Obviously with the chemo, I get an extensive blood workup on a monthly basis.
08-16-2016 08:46 PM
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green wings Offline

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Posts: 547
Joined: Feb 2016

Machine: Respironics System One RemStar Pro (460)
Mask Type: Nasal pillows
Mask Make & Model: AirFit P10
Humidifier: integrated humidifier
CPAP Pressure: 13.0 cm
CPAP Software: SleepyHead

Other Comments: using CPAP since Jan. 2016

Sex: Undisclosed
Location: US

Post: #44
RE: extremely tired all the time. need advice.
Hi, Mike. It sounds like you have lots of mask leaks going on. If you want to create a thread especially to talk about that, I think you'll get some good tips. I'm assuming that you are using a full-face mask because you open your mouth while sleeping. If you don't, then another type of mask like a nasal pillows design is a low-leak type of mask.

What you said about getting your best sleep when you sleep without the CPAP mask and machine was me, exactly, about two months into CPAP therapy. The machine sounded really loud to me, plus every time I'd turn to my side, I'd get a mask leak at the bridge of my nose.

A CPAP pillow that has notches cut out of the sides to give your mask room can be helpful. Some people just use pillows that are made of something deformable like down or shredded foam or buckwheat hulls.

The noise and the air blowing from the CPAP machine will eventually come to seem like white noise. I think it varies from person to person as to how long it takes for that to happen.

The person who mentioned that you can turn your machine off then back on if you wake up with mask leaks meant (I think) that your pressure is very likely to be near 12 if you wake up with a mask leak. If you turn the machine off then back on, it will start back at 8 or even lower if you have the Ramp function enabled.

Oh, but the getting better rest without CPAP. About two months into using CPAP, I was typically using the machine for 5 days then taking 2 days off. My goal was to make it to 100% use or very near that by six months of use. I had my first 30 consecutive days of use after about four months of use.

I didn't go for the 100% use goal immediately because I have a lot of other chronic health problems and another sleep disorder besides sleep apnea, and I just felt like I could only take so much of the CPAP at a time at the beginning.

I think the SleepyHead software helped me to boost my CPAP use. It gives you stats and a lot of information to look at. The graphs are pretty interesting. If you use it, you'll be able to see if your leaks correspond with pressure increases among other things.

Welcome
08-16-2016 09:59 PM
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kwhenrykerr Offline
Wiki Editor
Advisory Members

Posts: 242
Joined: May 2016

Machine: DreamStation Auto, AirSense 10 Auto
Mask Type: Full face mask
Mask Make & Model: Amara View
Humidifier: Philips, AirSense 10
CPAP Pressure: 12-20
CPAP Software: SleepyHead

Other Comments: 2L added oxygen with CMS50F to check usage

Sex: Male
Location: Florida

Post: #45
RE: extremely tired all the time. need advice.
green wings said:
I think the SleepyHead software helped me to boost my CPAP use. It gives you stats and a lot of information to look at. The graphs are pretty interesting. If you use it, you'll be able to see if your leaks correspond with pressure increases among other things.

That is good advice Mike, I found the SleepyHead Information helped me to challenge myself to improve. I have mask leak issues but have worked to reduce them. I started without full face mask and it helped. I found out I was allowing the air to escape by my mouth. I started with a Full face mask and saw much improvement.

I keep looking for the perfect set-up. I am very happy with the progress. I do not plan on going without a full face mask. Yes I want to rip it off but I just have to keep that under control. I would like to be a teenager over, going back to dippers is in the future. I may get lucky and avoid that so CPAP it to prolong and improve the remainder of my time. Not allowing frustration to run my life has been one of the biggest helps.

As the saying goes If you got Lemons make some Lemon Aid, now wher is the sugar...

Keep trying and do not allow things that you can not control keep you from enjoying life. Okay

Just my personal opinion. My posts are not medical advice or a statement of fact. Please consult a qualified physician or other qualified medical personnel. Please comply with all applicable laws, codes, regulations, and protocols.
08-17-2016 06:13 AM
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mikeindc Offline

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Posts: 8
Joined: Aug 2016

Machine: ResMed Airsense 10
Mask Type: Nasal mask
Mask Make & Model: airsense
Humidifier: Resmed Mirage
CPAP Pressure: 8-12
CPAP Software: SleepyHead

Other Comments:

Sex: Male
Location: DC

Post: #46
RE: extremely tired all the time. need advice.
Green wings and kwhenrykerr

Thanks, I do use a full face mask and use two very soft pillows that allows me to bunch them up to give the mask room. I have the ResMed Airsense 10 and its very quiet, I don't hear it at all.

According to the device and the SleepyHead software, I don't have major air leaks, but the problem is that when they do happen they are either right into my eye or put out a very loud whistle that actually wakes my partner. I will look at them more closely to see if the leaks that do happen, correspond with increases in pressure.

For the first month, I used Ambien almost every night and was usually getting about 5-6 hours of sleep a night. Ambien puts me out and I hardly move. I REALLY don't want to have to use Ambien (before the CPAP I used it maybe once every two weeks) Now without Ambien, I know that I toss and turn (thought not a lot) by the twisted and moved sheets, which makes keep the mask secure a challenge. On the nights with the mask I get maybe 4 hours of sleep (and sometimes fall back asleep for an hour) and without the mask get 6-7 solid hours.

I meant to try turning the machine off and back on when I started having leaks at 3 am last night, but wasn't thinking clearly and futzed with the mask for 30 minutes trying to get it restated while I not fully awake. By that point I was wide awake and knew there was no way I going to be able to fall back asleep for another hour or two.

The discouraging thing is that after more than 6 months I am not doing any better with keeping the mask in place than I was on day 1 nor feeling any better.
08-17-2016 08:24 AM
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GrammaBear Offline

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Posts: 381
Joined: May 2012

Machine: ResMed S9 AutoSet
Mask Type: Nasal pillows
Mask Make & Model: Air Fit P10
Humidifier: ResMed H5i heated humidifier
CPAP Pressure: 12.2 - 16.2
CPAP Software: SleepyHead

Other Comments: Type 1 diabetes - using Tandem T-slim insulin pump, Dexcom G4 CGM

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Location: northern Illinois

Post: #47
RE: extremely tired all the time. need advice.
Could you ask your doctor about trying melatonin before you go to bed to help you relax enough to fall asleep more naturally? I use it with doctor's advice and most nights it works ok for me.
08-17-2016 09:13 AM
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icyura10 Offline

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Machine: RESMED AirCurve 10 VAUTO
Mask Type: Nasal pillows
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CPAP Pressure: IPAP (20); EPAP (12); PS (8)
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Other Comments: I just dropped in to see what condition my condition was in!

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Post: #48
RE: extremely tired all the time. need advice.
I asked my Dr. for a sleep aid.

He wrote me an Rx for a woman..

The best I could find was a blow up doll, but I couldn't get it to inflate! Dielaughing How to deflate a guy's ego in nothing flat!

Oh... don't throw rocks..(and darts might put extra holes in the doll) I just couldn't help it.. it was just to good an opportunity to have a chuckle!

Warning: Eating chocolate may cause your clothes to shrink!
[Image: ry6XtE9.gif] <---- That's ME!
(This post was last modified: 08-17-2016 09:25 AM by icyura10.)
08-17-2016 09:21 AM
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green wings Offline

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Posts: 547
Joined: Feb 2016

Machine: Respironics System One RemStar Pro (460)
Mask Type: Nasal pillows
Mask Make & Model: AirFit P10
Humidifier: integrated humidifier
CPAP Pressure: 13.0 cm
CPAP Software: SleepyHead

Other Comments: using CPAP since Jan. 2016

Sex: Undisclosed
Location: US

Post: #49
RE: extremely tired all the time. need advice.
Hi, mikeindc. I hear you about that type of air leaks. I started off CPAP therapy using a nasal mask, and for a while, every time I turned onto my side, I would get an air leak at the bridge of my nose. I seemed to eventually learn to reseat the mask cushion in my sleep. Full-face masks seem to be trickier to stop the leaks on, though, based on what I've read here on this forum.

I would encourage you to look at your SleepyHead data to see if the leaks happen when your pressure increases. That will presume that you can remember about what time of night they happened. Or another trick that some people use while they are trying to conquer leaks is to turn the CPAP machine off then back on when a leak happens. That marks the time of the incident so that you can see it in SleepyHead.

It sounds like using the Ambien in your case is just postponing dealing with fixing the leaks. If the Ambien is helping you to avoid leaks by making you sleep so soundly that you don't move much, then whenever you don't use it, there is the leak problem again.

Some people say that their full face masks start to leak later in the night because they wash their face before bedtime so it will be all clean to make a good mask seal, then as the hours go by, the face keeps producing oils and eventually the mask doesn't seal so well. If you think that's going on with you, you can try mask liners. Washing the mask and your face in the middle of the night can work, too, but that potentially can wake you up so thoroughly that you may not fall back asleep for hours.

I wasn't clear from your reply about whether you need a full face mask because you will let air escape from your mouth if you use a mask that doesn't cover your mouth. You mentioned that you tried several different types of masks. Were some of those nasal pillows or nasal cushion masks?

If you want to get some tips about adjusting your particular model of full face mask, I'd encourage you to start a new thread with the name of your mask model and something about "leak problems" in the title. Or you can do a forum search and probably find past discussions that might be helpful. It really does sound like you've made it past most of the adjustment issues and just have mask problems to deal with right now.

I hear that CPAP masks are lots better now than they were years ago, but I know after around 6 weeks with the nasal pillows on the mask I use, the plastic gets too soft, leaks start, and I go from Dreaming to Perturbed practically overnight.

(08-17-2016 08:24 AM)mikeindc Wrote:  Green wings and kwhenrykerr

Thanks, I do use a full face mask and use two very soft pillows that allows me to bunch them up to give the mask room. I have the ResMed Airsense 10 and its very quiet, I don't hear it at all.

According to the device and the SleepyHead software, I don't have major air leaks, but the problem is that when they do happen they are either right into my eye or put out a very loud whistle that actually wakes my partner. I will look at them more closely to see if the leaks that do happen, correspond with increases in pressure.

For the first month, I used Ambien almost every night and was usually getting about 5-6 hours of sleep a night. Ambien puts me out and I hardly move. I REALLY don't want to have to use Ambien (before the CPAP I used it maybe once every two weeks) Now without Ambien, I know that I toss and turn (thought not a lot) by the twisted and moved sheets, which makes keep the mask secure a challenge. On the nights with the mask I get maybe 4 hours of sleep (and sometimes fall back asleep for an hour) and without the mask get 6-7 solid hours.

I meant to try turning the machine off and back on when I started having leaks at 3 am last night, but wasn't thinking clearly and futzed with the mask for 30 minutes trying to get it restated while I not fully awake. By that point I was wide awake and knew there was no way I going to be able to fall back asleep for another hour or two.

The discouraging thing is that after more than 6 months I am not doing any better with keeping the mask in place than I was on day 1 nor feeling any better.
08-17-2016 09:39 AM
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green wings Offline

Advisory Members

Posts: 547
Joined: Feb 2016

Machine: Respironics System One RemStar Pro (460)
Mask Type: Nasal pillows
Mask Make & Model: AirFit P10
Humidifier: integrated humidifier
CPAP Pressure: 13.0 cm
CPAP Software: SleepyHead

Other Comments: using CPAP since Jan. 2016

Sex: Undisclosed
Location: US

Post: #50
RE: extremely tired all the time. need advice.
Oh-jeez
(This post was last modified: 08-17-2016 10:27 AM by green wings.)
08-17-2016 09:51 AM
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