Screwed-Up Circadian Rhythm & CPAP

[farrellts]

I've been diagnosed with sleep apnea for over 20 years but have a huge problem with making sure I have my mask on while sleeping, because my circadian rhythm is not normal. I need to know what others may have done to address this -- and believe me, I've tried so many things!

I have not been diagnosed with narcolepsy and attempts to normalize my circadian rhythm have not been successful. I also have fibromyalgia and constant migraines, am used to feeling tired all the time, and so, while I am no longer working, when I need to be someplace at a given time, I manage, though it isn't fun. Anyhow, over the years, I have kind of accepted that my day is not 24 hours like most people, and the hours when I go to sleep and wake up each day vary by the day. Because of this, I've migrated over the years into not using a bed. In fact, I use my bedroom for purposes other than sleep now. I just sleep on the sofa
-- which is good to keep off my back in case I falls asleep without CPAP mask! Yes, I know this is "poor sleep hygiene" and I wish I could fix it. I wish that strategies such as involving melatonin or only sleeping in bed or staying up later each day till my sleep/wake hours are normalized had worked. Avoiding blue light, reading instead of watching TV to get sleeping, temazepam, ambien, lunesta, ghb, tons of other drugs, et cetera. They didn't. I can relate very much to those "non-24" TV commericals where the blind people's circadian rhythm is screwed up because they don't respond to light cues. I would welcome other suggestions, of course, as to now to normalize my circadian rhythm because I know this is not healthy and will shorten my life. I'm sure it worsens my migraines and chronic pain/fatigue as well.

Meanwhile, I am just trying to be more faithful using CPAP. Because I've put on a lot of weight, am older, and my doctor tells me that if I don't use my CPAP machine it will take 10 years off my life. I know all that hypoxea from sleep apnea is not helping my fibromyalgia symptoms or migraines either -- though I've been using CPAP machines for two decades, I never felt a definite difference, upon awakening, after sleeping with or without CPAP, until just this year. So I am trying very hard at this. I even bought a new CPAP machine with APAP features. Problem is making sure I have the mask on when I am asleep....

I try to monitor when I am feeling sleepy. But it seems as soon as I put the mask on, the discomfort wakes em up. (I use an Adams Circuit with nasal pillows and discomfort is minimal, but I have fact and head pain, so CPAP has never been a great thing for me.) I've tried to get used to just wearing the damned mask whenever I lie down, whether watching TV or not -- but this seldom works. It seems I have to catch myself just before dropping off or I never succeed in using my CPAP machinei at all. But half the time this strategy ends up with my never using the CPAP that night. I've tried setting an alarm to go off every half hour, so as to catch myself should I drop off -- but this seems to either just wake me up too thoroughly or else I sleep through the alarm. It's very upsetting to say the least!

To make this even worse -- it seems that, when I actually DO succeed in falling asleep wearing the CPAP mask, I can't get a full eight hours sleep that way -- usually I wake up at some point without the mask and realize that a bathroom break or other interruption is at fault. At least half the time, I wake up in a seated position -- often sleep that way most of the night (yes, without CPAP). I think, often, when I wake, I don't feel sleepy and sit there but am sleepier than I thought or something. I am even thinking of making an all-night video just to see what is going wrong there.

I wonder if other folks have experienced this and how you may have resolved it? What medications, strategies, therapies, et cetera? Yes, I know that poor sleep hygiene is at the core of this and sleeping on my sofa isn't helping -- but there is a reason it ended up this way -- which was because I wasn't sleeping in bed and my failed in all my attempts at using all the strategies my sleep specialist provided for correcting poor "sleep hygiene."

I will say also that, when one cannot sleep all night and is exhausted on top of that, it is really difficult to do anything but just lie there and watch TV or listen to music. Whether I did this in bed or on my sofa, the result ended up the same ... well, with the difference being that falling asleep in bed without a CPAP mask on resulted a much more apnea events because I'd end up on my back.

Honestly, only thing I can think to do is go on a mega-diet so as to drastically reduce my sleep apnea issue -- but I know it will still exist regardless. (Good idea to lose the weight anyhow.)

Obviously, I'm at my wit's end. You won't upset me if you suggest something it turns out I've already tried. I will listen to anybody and try anything!

Thanks very much!

[49er]

You might find this organization helpful.

http://www.circadiansleepdisorders.org/

They have a list of sleep doctors who members have found to be helpful regarding their CR issues. They also have an email list you might look into joining.

[Julie]

I really wonder about other issues (besides circadian). When's the last time you had a full work-up, with labs, thyroid check beyond standard TSH, glucose, etc?

And what machine are you using - which model, not just brand plse. What are your pressure setting(s)?

Have you ever used software to see what's going on when you sleep? It can often clear up issues you didn't realize occurred and can (with help from here) let you tweak pressures which may not (now) be adequate, or appropriate.

[Julie]

Go away xxyz! You are giving bad advice to newbies who are here looking for help with medical issues and you're off base all the time. Find another kind of forum to haunt!

[QueSera]

My problem is not so much my circadian rhythm, I just have a lot of trouble falling and staying asleep. I average close to 5 hours a night, and yes, I'm tired all the time. The good news is that when I am asleep, my CPAP works great.

It took me a very long time to find the right mask setup, which is currently Dreamwear with nasal pillows, and a chin strap. This works for me because it's light and not pressing on my face, but it's a lot of straps, so not that easy to pull off in my sleep. If I get up during the night, I try to disconnect the hose but leave the whole setup on my head. I would wrap a scarf around it all and tie it in place if I needed another layer to make it harder to get off.

Also, sleeping on the couch can be bad for your back, give you headaches, etc. I know because I did it for years. Then I got a recliner, and I am much more comfortable, not just for my back but for the CPAP, GERD, and a variety of issues. It's also nicer to be in when I am still waiting to fall asleep at 2 a.m.; even if I'm not sleeping, I know my body is resting.

Keep looking for the right mask. Good luck.

[Okie bipap]

Also, sleeping on the couch can be bad for your back, give you headaches, etc. I know because I did it for years. Then I got a recliner, and I am much more comfortable, not just for my back but for the CPAP, GERD, and a variety of issues. It's also nicer to be in when I am still waiting to fall asleep at 2 a.m.; even if I'm not sleeping, I know my body is resting.

Have you ever considered an adjustable bed? My wife and I have used one for for over ten years. I spent over two weeks in the bed when I had foot surgery a few years ago and it was a lot more comfortable than a recliner.

[kteague]

Some of your descriptions of your sleep habits remind me of my own. My sleep was complicated by limb movements, so any similarities may not be relevant to your situation. When it comes to wearing the mask, if you are convinced it is in your best interest, you have to do whatever is necessary to avoid "mishaps". When I used to wake up after hours sleeping sitting up on the side of my bed, I realized I could not even sit down without the mask on. Consistent use of your CPAP is key to breaking through and out of these patterns that are not working for you. Until then you are habitually taking backward steps and cannot reasonably expect to see much improvement. Until I had a degree of recovery, I allowed myself to get sleep whenever I could. My sleep doc told me that since napping seemed unavoidable, to plan it into my day to include using the machine. I am not one who has been diligent about sleeping at "normal" times, though I have done so for periods of time. And I must admit I've felt better and had much more alert time when I was on a decent schedule. I remember reading about using eating habits to help reset circadian rhythms - if you decide to make a concerted effort you might want to read up on that. When I was making those efforts, trying to go to bed a bit earlier each night did not work for me. The only thing that worked was deciding my desired wakeup time and sticking with it no matter how little sleep I got and not taking a nap. By night three I was waiting on it to be late enough to go to bed. The more I talk, the more I'm convicted I need to get back in line. My doctor's reason for it is that our sleep is better able to do what it is supposed to do when we are working with the ebbs and flows of hormones instead of against them. Thanks for the reminder.

[ajack]

there are also some antidepressants that can help reset your clock and are used in sleep medicine. Valdoxan