Hello all,
First, here are some details about my equipment and some stats:
Machine: ResMed AirSense 10
Mask: Nasal pillows
Pressure: 6 (I think)
Humidity: 7
Average events per hour: < 4 (usually around 2 or so)
Average time used each night: 4 hrs
Weight: 165lbs
Height: 5' 11"
Sleep apnea seems to be genetic (my father had it). I also suffer from depression at times which can make sleep difficult. It also creates this cycle of not sleeping well, feeling depressed, being unable to work out and on and on.
Apologies for the lengthy post.
I was prescribed CPAP 2 years ago. At the time I was starting a high pressure job at one of the best agencies in North America. I couldn't get used to the machine and I was way more tired with wearing it so I decided to stop. There was no way I could show up at that job feeling like I did and expect to perform at the level that was required. At that time the main issue was that I would open my mouth and air would escape through it and wake me up. I could not get a good seal on the mask.
Since then I left that job and took 6 months off to travel. I decided that I am tired of this foggy feeling and memory issues and a perceived decrease in cognitive ability and mostly I am tired of feeling tired. I feel like I always want to lay down. I don't drowse off and I never fall asleep at the wheel or anything like that, but I always seem to want to lay down. I never feel refreshed or well rested when I wake up.
I went back to the doctor and picked up another CPAP machine; this time around they gave me a chin strap to help keep my mouth closed while I sleep. I cannot do a full face mask because I have a beard and could never seem to get a good seal on it. I picked up the device on October 10 and I have used it every night but one since then.
When I first set out to go to sleep I feel fine, even kind of cosy with the mask and chin strap on. I tend to shift positions a lot before I finally fall asleep so that can be a bit awkward with the nasal pillows mask but I do fall asleep pretty quick (I have a white noise CD that I play that has 30 minutes of waves and 30 minutes of thunderstorms and I never hear the thunderstorms. I feel like I'm usually asleep in 5 - 10 mins).
However, I do not sleep a full night with it and I never feel refreshed when I wake up. If anything I am more tired most of the time. If you look at the data sometimes I go 3 hours, sometimes 5, sometimes even 7. I wake up from something (I think it's usually due to leakage) and then I can't seem to go back to sleep with the mask on so I remove it. My events per hour are usually quite low. Every mask I have tried hurts my nose.
When I talk to the people at the ENT clinic they of course say that everything looks great and to keep wearing it. Getting sleep with the device on and reducing the events is super important. So quantitatively everything is great, but qualitatively it is not. I get that I am reducing my chances of diabetes, hear disease and stroke; but what's the point if I am so tired that I can barely function most of the time? If I am doing 7 hours with the mask on (according to the stats) but it is broken sleep, in and out all night; how is that any different than not wearing the mask, and coming out of REM sleep because I have stopped breathing?
The main purpose for me getting this and wanting to try so hard with it is because I don't want to be tired anymore. I want to wake up refreshed at 7am, do a workout, eat a good breakfast and kill it at work. I'm starting a new job at another amazing agency in about 2 weeks and I want to try my best so that I can do just that.
Any tips? Could something be wrong with the machine? My settings?
I should note as well that every morning the stats on the machine have a smiley face where "Mask Seal" is concerned which makes no sense to me because I can hear leakage and even if I pull the mask off and the air streams out, you still get the smiley face.
The chin strap is also becoming quite uncomfortable now and hurts my jaw while I am sleeping (this goes away in the morning when I take it off luckily). Even with the chin strap, there is still leakage. Last night I felt like the pressure increased to some unwieldy amount and I could barely keep my mouth closed.
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Apologies again for the lengthy post, I just wanted to be as detailed as possible.
Best, Evan
Hi Evan--Thank you so much for writing this post. This is my life also--about 15 months into CPAP. I am tired all the time and just want to lay down. I started Nuvigil yesterday to try to help with wakefulness.
SleepTech--Can you please weigh in on this phenomenon where people are trying their best and getting time in on the machine but never feel refreshed--more than a year later? Thank you so much--
While I appreciate your confidence in my experience, I don't have nay magic solution for this problem, although it is very rare to be more tired with treatment than without over a year later. This could mean that OSA isn't the only thing making you tired. You could look at iron levels and thyroid function, both of which can be corrected without too much difficulty. We also have some patients who have narcolepsy and OSA, so you could check that out.You might notice that I don't bother talking much about idiopathic hypersomnolence because that is medical jargon for "you're sleepy and we don't know why" so it's not much of a diagnosis.
EB1979, while it's possible your setting are wrong, this is unlikely given your the AHI reported by your machine. I never use the smiley faces as a measure for leak, but go by the numbers (leak rate in L/min), however it is no surprise that you could pull your mask off and still get smiley face for leak, because I would assume this is based on the average leak level for the whole night which could still be fine, despite a minute or 2 of extreme leak. If your pressure is 6 that is very low and you really should not need to have your mask or chin strap tight enough to cause discomfort. If your nasal pillows are hurting your nose you could try a different mask. I assume you have the ResMed AirFit P10 (based on the fact that your other gear is ResMed) which is not adjustable. An adjustable mask like the Nuance may give you better results. The Brevida is a little chunkier but very gentle on the nostrils because is inflates itself to fit your nose rather than relying on pressure from the straps. Or, you could look at the DreaWear under nose mask which doesn't have the prongs to seal against your nostrils (Google a picture to see what I mean). Your Chin strap also shouldn't need to be super tight at such a low pressure. It will only stop your jaw sagging but it won't necessarily stop air puffing out between your lips. If there is a leak the machine will usually compensate by blowing more air, which can cause the phenomenon you describe of the pressure increasing to an unwieldy level. Or do you have an auto CPAP? In that case there could be something you could do with the settings to help.
Sorry I haven't been much use. It is often hard to nail the problem down without being hands on.
