Ever take a night off?

College girl,
I appreciate the passion and intention behind your message. You are right that we need to take control away from this disease and view CPAP as our friend.

I have been through two years of trying to make this therapy work. I have finally found a mask and method of suiting up that eliminates most of my issues (see my signature for details). However, now, I can't sleep, me with hypersolmnolence, can't sleep. I practice excellent sleep hygiene, but have only fallen asleep with it 3 times.

I have every reason to want this treatment to work. I need it to work. That being said, I cannot afford to loose the sleep at night, I am more dangerous on the road with the treatment at the moment. I have learned to cope with with apnea fatigue, but put the lack of sleep with the treatment ontop of it and I am a wreck. The machine doesn't help me if I am not sleeping.

So I try, I stretch the time a little longer each night and hope, pray and work towards falling asleep. My prayer is that I will get used to it soon and then things will get better.

At the moment, if I take a night off in desperation, it is so I'll have strength to try again tomorrow, I haven't lost the benefit of cpap because it can't work for me yet.

When I see my doctor next, I will talk to her about sleep meds, but until then, I keep trying the best I can.

I also agree with C.G., I have from day one, made it a point to be 100% compliant, no matter how difficult. I believe that if you put enough effort into anything difficult, and have the real will to succeed, that you can and will be the winner. I have taken short naps sometimes in the past, not using the CPAP machine, but last week Wednesday, after a rather stressful day, I layed down just to rest for a few minutes, not intending to actually fall asleep. I did fall asleep though, and was awakened out of breath,dizzy, and a few minutes later had a bad headache, and I had the distinct feeling that I had been trying to wake up several times, but just did not, and started into another dream. The headache went away in a little while, but for me this was a sort of wakeup call to not take a chance on not having any problems with short naps.....better safe than sorry.....when my wife got home later, I told her that I had just had a nap from hell.

Erin,
First of all, *hugs.* At least you are fighting, and not giving up. Seriously, we're all proud of you for that.

I'm split two different ways on what I think regarding your personal case. (Not that you asked, but... ) Part of me thinks that training yourself to use CPAP has to be like teaching your cat to eat new food (forgive me for the analogy, but with the recent recalls, that's what's on my mind). You feed them new food, and you just don't give them anything else. Eventually, even if they think they don't like it, they get hungry enough to eat it.

Your body HAS to sleep, Erin, and if you never let it sleep without CPAP, it WILL sleep with it. You will just eventually get so exhausted that you will fall asleep no matter what. But when that finally happens, you'll learn that - hey - I really can sleep with this thing. My suggestion would be to take a week off from anything that requires you to drive or be awake. I know, that's really hard, especially when it involves your job - but we're talking about saving your life here. Don't go to sleep until you can do it with CPAP. And keep it up. If you can do it for a week, you've got the ball rolling.

My other school of thought on this is as follows: If you've been trying most nights for the last TWO YEARS to fall asleep with it, and have only been successful *three* times, there is something seriously, seriously wrong. Now, it could be that you had a horrible mask you could never get comfortable with, and that that's changed now that you've got the Swift, and you just can't fall asleep with it because you're so USED to not sleeping with it.

I see from your signature that you have the Pro2 - that's great. That means that, when you finally fall asleep with it, you'll have some data to look at. (I mean, you'd have data now from the time you spent awake with it on, but if you haven't been sleeping, it's obviously not going to be helpful).

Maybe we can troubleshoot it a bit more, though, even without data. (Forgive me if you've been through this on different threads, but with so many people on these boards, it's hard to remember who's been helped in what way. And obviously your little mystery hasn't been solved yet).

Can you pin down for me what exactly it is that's keeping you awake? Is it the noise of the machine? Is it the feeling of the mask? Is it difficult to breathe out against the pressure? Do you feel like there's not enough air coming in? Is the air too cold? Too warm? Are you starting to fall asleep with it, but then waking up? If so, when you do start to fall asleep with it, do you wake up with your heart pounding, or having had dreams of drowning, or feelings of choking? Is the aerophagia so painful that you're afraid to go to sleep with the CPAP now? The more we can pin down specific problems, the more we can identify (I hope) what it is exactly that's keeping you from sleeping well.

Don't give up, Erin, and please give some serious consideration to my suggestion of taking a week to figure this out (and if you can get a supportive doctor involved, so much the better).

Erin, I agree with CollegeGirl that perhaps we should discuss just what prevents you from going to sleep with the mask.

And here are a couple of suggestions:

1. If the pressure seems too high, it wouldn't hurt to lower your pressure -- just to get used to it for several nights. Lower pressure will feel better with the Swift.

2. Try taking a Melatonin (I don't take it but many on this forum do). It should help you relax and get to sleep. You might search for Melatonin on the forum. There was a recent thread discussing how many mgs to take.

The Melatonin should work for you until you can get to the doctor and discuss a sleep aide.

And if you don't want to try Melatonin, how about a glass of wine before bed?

BTW, has the doctors ever put you on a sleep aid to help you sleep?

Great post, Linda!

Just wanted to reiterate that the wine is only a good idea if you are definitely going to use your CPAP all night. Alcohol can actually make apnea worse, so if there's any chance you might end up untreated at the end of the night, you might want to avoid it.

Good point. I don't drink at all, so what do I know? Would a glass really affect apneas that much? But then I guess it would depend on the size of the glass. ...

Well, the National Institute of Health says "moderate" drinking can impact it - I would think, then, that even a glass must have SOME effect. I could be wrong, though - I'm not a drinker either. Personally, I would just err on the side of caution.

Here's what the NIH says about alcohol and (keep in mind they're talking about UNTREATED) OSA.

NIH wrote:In addition, moderate to high doses of alcohol consumed in the evening can lead to narrowing of the air passage (13,14), causing episodes of apnea even in persons who do not otherwise exhibit symptoms of OSA. Alcohol's general depressant effects can increase the duration of periods of apnea, worsening any preexisting OSA (14).

OSA is associated with impaired performance on a driving simulator as well as with an increased rate of motor vehicle crashes in the absence of alcohol consumption (9,10). Among patients with severe OSA, alcohol consumption at a rate of two or more drinks per day is associated with a fivefold increased risk for fatigue-related traffic crashes compared with OSA patients who consume little or no alcohol (15). In addition, the combination of alcohol, OSA, and snoring increases a person's risk for heart attack, arrhythmia, stroke, and sudden death (16).

Nasty stuff.

Here's where that article is: http://pubs.niaaa.nih.gov/publications/aa41.htm

[quote="CollegeGirl"]Great post, Linda!

Just wanted to reiterate that the wine is only a good idea if you are definitely going to use your CPAP all night. Alcohol can actually make apnea worse, so if there's any chance you might end up untreated at the end of the night, you might want to avoid it.

Oh dang, I hate it when I screw up. ...

That's what I get for writing about something I don't do.

You didn't screw up, Linda. That's something I've seen advised more than once on this forum - and not just by you. I just thought since I'd read here that alcohol could be bad for OSA, that I'd do a little research and see what I found. So what you did, in fact, was open up an opportunity for a discussion on the matter that will probably help someone in the future - hopefully more than one someone, even.

--CG

Wow, thanks CG, I greatly appreciate your willingness to help. I think the second method would work better for me, as I am a mom of young children and I can't take a week off from them

I got solutions for most of my fit and leak issues, hence the detailed signature. What keeps me from falling asleep and staying asleep seems to be getting used to the mask. The swift is by far the least instrusive of the masks I have tried and I am happy with it, nothing is particularly uncomfortable. sometimes the way I lie puts too much pressure on my nose, but that is easily fixed.

My biggest issue is that I can't stop thinking about breathing and the mask, If my mind could wander... maybe I'd stand a chance, but I am so conscious of it, I cannot relax into sleep. I am like that when I sleep in a new place too, the change makes it hard for me to fall asleep. I am hoping the pur-sleep will help me with this, infact the 3 times I fell asleep i was using the Rosa scent, but it didn't work last night. I use visualization and autogenics, but I is very hard for me to keep focused. I may try melatonin, as long as it's compatible with my other meds.


The exhaust is bothering me a wee bit, as it seems to move the air around it and that cools off my face. I sleep on the edge of my super-neck-support-memory-foam pillow to keep it from ricocheting back into my face. Positioning myself is no problem when I go to bed at 10, but is not tolerated well and 12 or 1. From the response I got to my posts about it, it is just something I will have to get used too.

The few times I have dozed off, I do wake up with air in my stomach, which is much better with 2 phazyme and poly-grip strips holding my mouth shut, but is enough to keep me from falling asleep again. I sit up, go to the bathroom, take another phazyme... But keeping the mask on makes it worse.

That's it. When I have some sleep data to show you, I will share it gladly.

Thanks so much for your concern and help,

Erin

Erin, regarding the aerophagia, have you tried different c-flex settings on your machine?

Some people like it set at 3, and some like it off. It's a comfort setting, so you might try different settings to see if it makes a difference.

Thanks Linda,
I have my cflex on three, as it is difficult for me to exhale on any less. Thanks for the advice!
Erin

Wistful, something that I've found that really helps me to quit thinking about the mask on my face is to listen to a recorded book. There are many devices these days that can make it easy to do this as you go to sleep. I have a PDA that I can download books onto and listen with a small earpiece. I can set it to turn itself off in 15-30 minutes. It has been extremely helpful to me.

Great idea Djdixie!
Thanks,
Erin