FRUSTRATED: Still tired after 131 days of CPAP

[djjwilly]

Yes, I'm going through the same thing. I do know my sleep hygiene is non-existent. My doc gives me that form to read and I'm so swift I throw it away. I developed strong habits before starting therapy that I cannot break, like waking up and having to see what time it is, or using my tablet, or reading a book or making tea in the middle of the night. Actually, night and day are blurred for me. I'm a zombie and I know it. I've got tmj syndrome really bad so wearing a mask is sheer torture. I've never sought treatment for it, but am about to. I might need a splint or something. How can a person successfully have straps tightened down all night on a very sore jaw and expect to actually sleep? I'm past being depressed about all of it. The doctor goes by the numbers, which look great. I struggle to get four hours in and then rip the mask off and throw it. I might not be able to learn to adapt having anything encumbering my jaw. Remember the good old days of being young and tired when you went to bed? I know the doc will tell me I'm doing fine at my next appointment and that's more depressing than my problems because I feel so alone in this. Thanks for reading this. DJ

[bwexler]

First you have to tell your doctor exactly how you fell, like you did here.
Next find a mask that works for you. Take a look at this one, for example,


TAP PAP Nasal Pillow CPAP Mask with Improved Stability Mouthpiece

Yes, I'm going through the same thing. I do know my sleep hygiene is non-existent. My doc gives me that form to read and I'm so swift I throw it away. I developed strong habits before starting therapy that I cannot break, like waking up and having to see what time it is, or using my tablet, or reading a book or making tea in the middle of the night. Actually, night and day are blurred for me. I'm a zombie and I know it. I've got tmj syndrome really bad so wearing a mask is sheer torture. I've never sought treatment for it, but am about to. I might need a splint or something. How can a person successfully have straps tightened down all night on a very sore jaw and expect to actually sleep? I'm past being depressed about all of it. The doctor goes by the numbers, which look great. I struggle to get four hours in and then rip the mask off and throw it. I might not be able to learn to adapt having anything encumbering my jaw. Remember the good old days of being young and tired when you went to bed? I know the doc will tell me I'm doing fine at my next appointment and that's more depressing than my problems because I feel so alone in this. Thanks for reading this. DJ

[me50]

Yes, I'm going through the same thing. I do know my sleep hygiene is non-existent. My doc gives me that form to read and I'm so swift I throw it away. I developed strong habits before starting therapy that I cannot break, like waking up and having to see what time it is, or using my tablet, or reading a book or making tea in the middle of the night. Actually, night and day are blurred for me. I'm a zombie and I know it. I've got tmj syndrome really bad so wearing a mask is sheer torture. I've never sought treatment for it, but am about to. I might need a splint or something. How can a person successfully have straps tightened down all night on a very sore jaw and expect to actually sleep? I'm past being depressed about all of it. The doctor goes by the numbers, which look great. I struggle to get four hours in and then rip the mask off and throw it. I might not be able to learn to adapt having anything encumbering my jaw. Remember the good old days of being young and tired when you went to bed? I know the doc will tell me I'm doing fine at my next appointment and that's more depressing than my problems because I feel so alone in this. Thanks for reading this. DJ

get a lighted digital clock where you can see the time without getting up. If you are not drinking decaff tea (and even if you are), it will keep you up. When you wake up, don't get your phone, tablet, don't turn on a tv or use a computer. those will keep you awake because of the lighting that is on the screens.

make yourself lay in the bed when you wake up and don't do anything but lay still and you hopefully will go back to sleep. since 2006, I have awakened every 2 hours, even after I started cpap because of a traumatic event in my life. I believe part of the problem of not sleeping well, for me, is that my pressure was too low. I now am using an auto set and I stay asleep longer periods (3 hours instead of 2 for an example). I make myself stay in bed and not get up. Sometimes I will lay in bed and read a few pages of a book and usually fall right back to sleep. The only time I let myself get out of bed is if I had a bad dream/nightmare. It isn't easy but try and see if you can make yourself stay in bed. I did not have a good night as far as sleeping goes last night. I got up at 8 AM (not that I slept all night b/c I kept waking up). By 10:30 AM, I was ready for a nap. I am hoping that the sleep study I had last week will get the doc to listen to me that my pressure is too low and put me on a different machine. I am frustrated that the sleep study wasn't done the way the doc told me he was going to ask for it to be done.

Let us know how it goes with trying to stay in bed and not use your tablet, pc, watch tv, etc. when you wake up. hope this helps some.

[djjwilly]

Dear me50: Thanks very much for your reply. I rarely get replies here and almost have given up trying. I'll take your advice, and I'm glad to have some feedback. I'll post after I try to make the changes you suggest. Love, DJ

[Peter_C]

I've read this thread and can tell you are upset, frustrated, and unhappy. I was one of the *lucky* ones, as my apnea was so bad, the machine and mask were a GIFT to me! Yes, it took me some time to get used to it, but the overall improvement in my life was too great to ignore.

Like others above me, most of my ideas/suggestions center around making good sleep habits, forcing your body to become used to the mask, etc. Have you tried wearing your mask while reading or watching TV when you are *not* trying to sleep? That may lessen the frustration you feel?

The mind is a wonderful thing, and one of the strange parts is it treats everything you think and say as true fact. Thus, the "power of positive thinking" really does come into play! LIE to yourself daily! Tell yourself that you LOVE your mask, that you can't sleep without it! Think about how great the machine is, how you like the 'white noise' it creates just to help you fall asleep.

Change your thinking and your body will change with it. I am not trying to make light of your issues, but dwelling on them will only tend to make this process worse, and make it take longer. Think about down the road, when you start getting a full night's sleep, without waking, and how the thought of just putting on your mask will make you sleepy...

[me50]

Dear me50: Thanks very much for your reply. I rarely get replies here and almost have given up trying. I'll take your advice, and I'm glad to have some feedback. I'll post after I try to make the changes you suggest. Love, DJ

Part of why you may not stay asleep is your pressure is not optimal for your apnea. You don't show what your pressure setting is. I switched to an auto set and found out that 95% of the time, I am at 19.9. My set pressure was 12.

can you get an auto set or is it too late to change?

I agree with all that Peter_C said. He has some very, very good suggestions, especially watching your data. I still watch mine daily as I switched to a new machine. I cannot wait for my new mask to see if that helps.

Also, your cushion should be washed regularly (hopefully you have a spare which makes this easier than waiting for them to dry b4 you can use them again as I don't like putting mine in the dishwasher) and the cushion that has been used a while should be switched (some members here say they used theirs for a long period of time....some for years). It seems to me (and my cushion is just 2 weeks old) that the longer they are used, the more they can leak.

opening your mouth can cause a sore throat. A chin strap MIGHT help with this.

Fall in love with your machine. It will make your life easier (and your mask too)! Some people name their machines lol

Hope this helps you some.

[djjwilly]

My pressure setting is at 7. The sleep therapist at the study told me I was having 31 episodes an hour. I don't understand too well all about it, really. I do know I've read up and over 30 an hour is considered close to severe apnea, and I can't understand why the setting is so low. My real problem is Medicare. I don't think the DME or the doctor really hear me. I'll try to get an autoset and really lay it on my doc next week when I see her. This has been such hell. I truly appreciate your words of encouragement and kindness. Yes, I really hate CPAP because of my jaw condition. That needs to be addressed. I see that now. I might need a splint to help keep the pressure of the mask minimized. I do feel better knowing I'm not totally alone and that you do care. I care about all of you too, and wish I could remove the need for CPAP out of all your lives. I'll try hard to focus on liking my mask and machine a little. Love, DJ

[me50]

My pressure setting is at 7. The sleep therapist at the study told me I was having 31 episodes an hour. I don't understand too well all about it, really. I do know I've read up and over 30 an hour is considered close to severe apnea, and I can't understand why the setting is so low. My real problem is Medicare. I don't think the DME or the doctor really hear me. I'll try to get an autoset and really lay it on my doc next week when I see her. This has been such hell. I truly appreciate your words of encouragement and kindness. Yes, I really hate CPAP because of my jaw condition. That needs to be addressed. I see that now. I might need a splint to help keep the pressure of the mask minimized. I do feel better knowing I'm not totally alone and that you do care. I care about all of you too, and wish I could remove the need for CPAP out of all your lives. I'll try hard to focus on liking my mask and machine a little. Love, DJ

Get a copy of your sleep study if you don't have it. Also, you can download ResScan and Sleepy Head and look at your data. If you don't understand it, we can help you. Your data is your best friend outside of your machine! It will tell you if there are issues with your sleep.

[bwexler]

Everyone is different. My first sleep study AHI was 84. I do have an S9 Autoset withe pressure set at 6-10.4. It averages around 7 and occasionally jumps up to 10, usually when .the mask leaks and causes an event. My AHI has been well controlled at these settings, usually bellow 3. But recently things changed and the AHI started to increase to around 10, mostly central apnea events.
New sleep study last week verified the need for a new ASV machine to control the central apnea events.
Make sure the doctors know about your complaints. Don't leave your appointment until they acknowledge their understanding and offer solutions. It is OK to become a pest. The folks at the doctors office and DME and medical group, all recognize my voice on the phone, before I tell them my name.

My pressure setting is at 7. The sleep therapist at the study told me I was having 31 episodes an hour. I don't understand too well all about it, really. I do know I've read up and over 30 an hour is considered close to severe apnea, and I can't understand why the setting is so low. My real problem is Medicare. I don't think the DME or the doctor really hear me. I'll try to get an autoset and really lay it on my doc next week when I see her. This has been such hell. I truly appreciate your words of encouragement and kindness. Yes, I really hate CPAP because of my jaw condition. That needs to be addressed. I see that now. I might need a splint to help keep the pressure of the mask minimized. I do feel better knowing I'm not totally alone and that you do care. I care about all of you too, and wish I could remove the need for CPAP out of all your lives. I'll try hard to focus on liking my mask and machine a little. Love, DJ

[djjwilly]

A Miracle! This post really proves the good work this forum is doing. I tried to download Sleepyhead once before, but got overwhelmed and deleted it. I just downloaded it again. I managed to find a video on youtube that explained how to insert the SD card in my computer. Yay! I actually got the info imported to Sleepyhead and I'm so proud of myself. I wouldn't have done it without your help. I don't understand alot of it but here's what I've found so far:

Night of Oct. 20:
AHI 22.22
hours 5:45
pressure 7
average leak .04
95% leaks .00
clear airway apneas 2 .35
hypopnea 14 events 2.43
obstructive apneas 112 events 19.4
apnea 0

I'm thinking this is not good. I still can't understand how this all works, and I consider myself intelligent. I'm so fried today I could barely get out of bed and was grateful my husband wasn't home. I crawled out at 10 am, terrible for me. I just couldn't handle even living this a.m. Someone please enlighten me. Is my sleep apnea out of control? I think this is a peak night. I think it has peaks and valleys from what I can figure. My daily numbers aren't this bad overall, I don't think. Many thanks to anyone who can help me understand. Love, DJ