7 Nights - No sleep

[Solar Rays]

I have now worn my nasal pillow mask for 7 nights with no sleep.  I have to remove it and then toss and turn and finally get a few hours of sleep in.  My respiratory therapist said don't worry about compliance yet and remove the mask if I'm not asleep in 20 minutes, however, I never sleep with C-Pap or without in 20 minutes.  So, I'm getting in at least 4 hours by reading and watching TV with the mask to get used to it but exhausted because of no sleep.  I have read such frustrating stories online that people take months to get used to the mask and c-pap.  I don't want to get discouraged but those stories are discouraging.  If I could at least sleep for a few hours with the mask I would feel better.  I have had insomnia for a long time and being treated for high blood pressure and a leaky mitral valve.  I need this machine to help with these problems.  

[ajack]

I would start with using the cpap while I watched tv in the living room. Get use it it for a few days.
Truly taking it off during the night will only drag it out, if you lay down you have it on. if you are fully awake, get up and read with the mask on, till you are tired again. no screens or other blue light. google sleep hygiene and CBT insomnia

I promise, it won't be long before you are waking up wondering if the machine is still working. Only to find it on as you move the mask. Waking up thinking you took it off during the night because you can;t feel it, yet find it still on your face.

[Marillion]

If you could download Sleepyhead software and then upload some data from your machine it would greatly help us in making some recommendations to you. The instructions on how to do so are below in my signature.

Ajack is right. Don't get discouraged. With our help and some time, soon enough you will be comfortable with the treatment. Stay positive and give us a chance to help you.

Also, please fill in your machine profile as that also can help us in making recommendations as well as determining if your machine is data capable.

Read up as much as you can to learn about your therapy and machine. The more you take control and learn about your therapy the more comfortable you will be.

[pianomanss87]

Hang in there. It took me years to adjust. All is well now.

[Sleepster]

I have now worn my nasal pillow mask for 7 nights with no sleep.  I have to remove it and then toss and turn and finally get a few hours of sleep in.  My respiratory therapist said don't worry about compliance yet and remove the mask if I'm not asleep in 20 minutes, however, I never sleep with C-Pap or without in 20 minutes. 

I would not agree with that advice. You need to commit to sleeping with the machine. Every time you sleep, all the time you are sleeping. Never sleep without it.

If you can't fall asleep with the mask on, get up and read with the lowest light level possible. You can do this with or without the mask on and the machine running. But when you get tired and go back to bed, wear the mask with the machine on. Repeat as necessary.

Eventually you will adapt and find yourself sleeping with the machine on.

The sleep you're getting without the machine is crap anyway, doesn't do you any good, and is actually hurting you by taxing your cardiovascular system. And it interferes with the adaptation process.

I promise you things will get better. I know because I went through the same thing you're going through now.

[HalfAsleep]

It's possible the settings aren't quite right for you, and it's messing you up. This can get sorted out: post your SleepyHead charts, as someone mentioned above.

I am a big fan of adjusting to the hardware while watching TV or whatever. But in addition, to use it at night.

As a newbie, using my CPAP while I was awake taught me that I could use it comfortably. I learned how to tell if the mask was leaking and what to do about it. I learned how the buttons on the machine worked.

Once I had a machine, the info in this forum made a whole lot more sense; it was time to read a lot of posts, learn basically how settings work, and how to read SleepyHead charts so I could manage my treatment myself.

And... if I used the machine while awake (and because I had SleepyHead), I could figure out with immediate feedback how the machine (and squiggles) responded to me. I could also experiment. E.g. What happens when I roll over? What happens when the baby cries? How do you go to the bathroom with this thing on? What do my squiggles look like while I'm fixing the mask? How about if I take a nap vs. night time? My heart seems to beat quite fast when I put the machine on: what does that do to my breathing?

Going forward, this gave me a good idea what is "chart junk" and what is most important to pay attention to.

IMO the best way to mitigate discouragement—and my thoughts here are examples—is to take charge of your treatment. Learn the skills and facts, and use your machine as a tool for you. Not for anyone else, not because the doctor says you "should" do it this way or that, but because you've fully committed to you and know how to meet your body's needs.

[Sleep2Snore]

Solar rays wrote:
I have had insomnia for a long time and being treated for high blood pressure and a leaky mitral valve.

I thought a leaky heart valve could lead to chronic fatigue?  Along with your insomnia and high blood pressure you must be knackered!
All you can do is use it al much as you can (I take it you do have Sleep Apnea) sit with it on while you read, watch TV or anything else you can do with a mask and CPAP machine attached.  Even if you sit up in bed to read, leave the machine on and if you do happen to fall asleep, fine.  Do not worry about leaks or anything yet, just get used to the mask always being on and the machine running.  Even if you are sitting in your chair at night with the slightest chance of falling asleep, use the machine, hopefully, in the end you will came to accept it is there and is part of sleeping/resting.  Then with a bit of persisting, hopefully sleep will follow in the end.  It does take some people a while to get used to CPAP (I had to make it work, so stuck the mask on as soon as I felt tired) but for others like yourself it is a lot harder to accept the mask and machine.  You just have to use it all the time, every time, just grow slowly to accept that there is going to be a mask and machine there all the time until it comes easier, then you can just use it when ready to go to sleep.
It is very difficult for some, so you are not alone out there.  I met one lady who took over a year to get used to the CPAP machine (little help the clinic was) but I told her the same as I have just told you.  It took her over six months after that to accept the machine was a sign to her body it was time to sleep.  She also got very stressed at the thought of using the machine.  So I told her to sit most of the time with only the mask on at night time, then progress up to having the hose and machine attached.  She didn't understand that she needed to have the machine turned on when she had the hose attached, so it took a while to get her used to it, but she got there in the end.  It was a year or just over before she would go a full night with the machine running.  The last time I saw her she was using it for a full six hours every night and sometimes more.  She now feels much better during the day, but it took a long time to get her to use it.
So just take things in steps, if you need to just sit at night with only the mask and no hose, do that, then move on.
If that little old woman can do it almost anyone can, it might take a while, but slowly work on it.  If you find it difficult, take your time, but keep trying for that little bit longer every time.  If you can't sleep, sit up and read with it on, watch TV with it on, then when you are ready go to sleep, if you can.

[monuoha]

I have now worn my nasal pillow mask for 7 nights with no sleep.  I have to remove it and then toss and turn and finally get a few hours of sleep in.  My respiratory therapist said don't worry about compliance yet and remove the mask if I'm not asleep in 20 minutes, however, I never sleep with C-Pap or without in 20 minutes.  So, I'm getting in at least 4 hours by reading and watching TV with the mask to get used to it but exhausted because of no sleep.  I have read such frustrating stories online that people take months to get used to the mask and c-pap.  I don't want to get discouraged but those stories are discouraging.  If I could at least sleep for a few hours with the mask I would feel better.  I have had insomnia for a long time and being treated for high blood pressure and a leaky mitral valve.  I need this machine to help with these problems.  

I really feel for you. I'm going through the same situation. Just started my therapy 2 weeks ago. I've never slept so horribly in my life. Not sure how long extra i can go with barely 3 hours of decent sleep. Hearing peoples success stories on here helps. Gives me hope

[Reznik]

I would not agree with that advice. You need to commit to sleeping with the machine. Every time you sleep, all the time you are sleeping. Never sleep without it.

I disagree with Sleepster.  If sleeping with the machine makes you feel worse than you already do, then you should ease into it.   Wear it when you go to bed, and if you wake up (or can't fall asleep within a reasonable time), call it off, go to sleep without it, and try again the next night.  It'll take longer to adapt, but you will, and you'll feel better during the day while you're doing it.

I also agree with the recommendation to try wearing it while lying in bed for a period of time before bedtime.  If you do that every night, you'll make it easier to fall asleep and stay asleep.  It's best if you do it exactly as if you are going to sleep, i.e. don't prop your head up and don't watch TV of read.  This is especially important if you have an Auto CPAP machine.  

You could also do what my dad and one of my friends do:  Take ambien or an OTC sleep medication.

[sammiller]

I have now worn my nasal pillow mask for 7 nights with no sleep.  I have to remove it and then toss and turn and finally get a few hours of sleep in.  My respiratory therapist said don't worry about compliance yet and remove the mask if I'm not asleep in 20 minutes, however, I never sleep with C-Pap or without in 20 minutes.  So, I'm getting in at least 4 hours by reading and watching TV with the mask to get used to it but exhausted because of no sleep.  I have read such frustrating stories online that people take months to get used to the mask and c-pap.  I don't want to get discouraged but those stories are discouraging.  If I could at least sleep for a few hours with the mask I would feel better.  I have had insomnia for a long time and being treated for high blood pressure and a leaky mitral valve.  I need this machine to help with these problems.  

I also have insomnia issues that's caused mainly from what goes into my mouth. However, since I got the CPAP, I'm sleeping longer and all night. Whereas before, I would get 1-5 hrs and wake up several times and need to get up several times. I think you really need to discover the cause of your insomnia, and I advise you to suspect something you are eating or drinking. To get a base line, I strongly advise to stop these foods and drinks for at least a week:
alcohol
anything with caffeine, including chocolate, soft drinks, energy drinks, etc.
sugars - candy, desserts, drinks
over-the-counter drugs
any milk product (yes!! that includes yogurt, cheese, sour cream, whey, butter, etc.)
spicy foods

The milk products are what got me for the longest time, since I didn't suspect it at all. But I found out that it is the top cause of my insomnia, right up there with caffeine. I think it is the milk protein casein that is doing it, as I get none of the lactose intolerance symptoms. I'm now using only vegetable protein powder for the extra protein I need. I also had to stop all supplements except Vit. D (which I have to take because of deficiency).
Good luck