Well, I have been reading for months and have finally decided to jump in. I've been on my machine I guess for about 2 months (it sure does seem like a lot longer). I'll have 1 good night or two with minimal flopping around, waking up, getting up, etc. and then it's like I'm starting all over again. I'll get up several times during the night. I'll wake up and find that I have taken off my mask and don't remember what the problem was to make me take it off in the first place and on and on and on!! My home health is a joke and I finally accused my doctor's office of sending me to a "discount/irregular" store instead of a knowledgable, reputable company. I guess you can tell I am feeling very frustrated. It's late and I'm tired. I'm gonna close. Maybe I will be more coherant next time I write.
Lane
tired of being tired
When does it all come together???
10 posts
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battlin_blazes
- Posts: 72
- Joined: Mon Mar 07, 2005 7:03 pm
- Location: a cornfield in ohio
well i don't think there is a good answer, some people respond quickly and others like you and I don't seem to get results. hang in there and keep trying. thats about the best you can do. keep hounding the dr. and make sure they know its not working I'm sure mine is sick of hearing from me maybe he'll get it right!!! I'm well into my third month and decided to try changing up my own pressure on my cpap to see if my guess is better then my dr.s !!! I know I shouldn't do this but I am frustrated with it!!!
AND I USED TO THINK SLEEP WAS OVER RATED!!!!
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neversleeps
- Posts: 1141
- Joined: Wed Apr 20, 2005 7:06 pm
- Location: Minnesota
You are not alone! I continue to experience frustration and vast inconsistencies. I keep waiting to wake up some morning feeling refreshed, but so far have not.
Everyone's experience is different. The most important thing is not to give up. I wrote pretty much the same thing you did a few weeks ago. I got a lot of encouragement and believe it or not, it kept me going. Click on:
viewtopic.php?t=2743&start=0&postdays=0 ... light=hate
and read all 3 pages of the thread for lots of good advice.
HANG IN THERE!!!!!!!!!!!!!!!!!!!!
Everyone's experience is different. The most important thing is not to give up. I wrote pretty much the same thing you did a few weeks ago. I got a lot of encouragement and believe it or not, it kept me going. Click on:
viewtopic.php?t=2743&start=0&postdays=0 ... light=hate
and read all 3 pages of the thread for lots of good advice.
HANG IN THERE!!!!!!!!!!!!!!!!!!!!
Last edited by neversleeps on Sat May 28, 2005 7:42 am, edited 1 time in total.
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Heidi
What is not getting better? Being able to sleep with the equiptment or not sleeping or just the waking up feeling tired?
I started treatment with an Remstar auto in Feb and I feel 100% better than I did, except I just had a brain tumor removed, so that kind of set me back a little.
Be patient. Try to get to bed earlier, maybe get some Ambien and really work on making sleep a priority.
I'm sure others have more suggestions, but thought I'd take a shot at it.
Heidi
I started treatment with an Remstar auto in Feb and I feel 100% better than I did, except I just had a brain tumor removed, so that kind of set me back a little.
Be patient. Try to get to bed earlier, maybe get some Ambien and really work on making sleep a priority.
I'm sure others have more suggestions, but thought I'd take a shot at it.
Heidi
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battlin_blazes
- Posts: 72
- Joined: Mon Mar 07, 2005 7:03 pm
- Location: a cornfield in ohio
I have been on my Remstar pro with C Flex for about 2 months and I got out of the brain fog the first week. I feel mentally sharper then I did and I am getting more energy gradually. I also am sleeping a lot better I do wake up during the night but go right back to sleep. I guess I have been lucky compared to some.
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Guest
Re: When does it all come together???
When does it all come together???
I'm not sure WHEN. I'm only sure it WILL!!!
I'm not sure WHEN. I'm only sure it WILL!!!
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ahujudybear
- Posts: 354
- Joined: Mon May 23, 2005 10:12 am
- Location: Franklin, WI
When does it all come together?
"for me its the brain fog!!! mentally out of it!!! "
Oh YES!!! (We call it "polio brain fog")
It had gotten so bad a couple of months ago that I could not have told you what month it was. It is gradually getting better - especially in the AM's. PM's - forget it unless I can take a nap.
That said, just a week ago I missed our support group meeting (extremely rare for me!) because I was on the phone all day trying to reach doctors regarding my next sleep study set-up which I thought was going to happen the following Monday (I thought it was actually a Friday). When I woke up the next morning I realized that that sleep study was three weeks away yet, and it was now Sunday morning! .... and I thought I was getting better!!
But I KNOW I have more energy each morning because I now have energy to wash up some dishes and to do little extra things in the mornings. Put down linoleum tiles on the new floor of the cabinet under the sink yesterday. (Had to have the faucet replaced and new cabinet floor put in after faucet sprung a leak.) Planted some (3) herbs in my planter boxes the day before. Little things, but meaningful to me. Sort of like... beginning to express myself again.
- JB
Oh YES!!! (We call it "polio brain fog")
It had gotten so bad a couple of months ago that I could not have told you what month it was. It is gradually getting better - especially in the AM's. PM's - forget it unless I can take a nap.
That said, just a week ago I missed our support group meeting (extremely rare for me!) because I was on the phone all day trying to reach doctors regarding my next sleep study set-up which I thought was going to happen the following Monday (I thought it was actually a Friday). When I woke up the next morning I realized that that sleep study was three weeks away yet, and it was now Sunday morning! .... and I thought I was getting better!!
But I KNOW I have more energy each morning because I now have energy to wash up some dishes and to do little extra things in the mornings. Put down linoleum tiles on the new floor of the cabinet under the sink yesterday. (Had to have the faucet replaced and new cabinet floor put in after faucet sprung a leak.) Planted some (3) herbs in my planter boxes the day before. Little things, but meaningful to me. Sort of like... beginning to express myself again.
- JB
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ahujudybear
- Posts: 354
- Joined: Mon May 23, 2005 10:12 am
- Location: Franklin, WI
When does it all come together?
Lane,
One thing to keep in mind is that the machine (CPAP or BiPAP) may not be the whole answer you need.
What sorts of problems are you having?
What other medical problems do you have?
Is the machine you are using adequately address your needs?
Not everyone can use a CPAP machine (I have to have a BiPAP because of weak breathing muscles).
Do you also have Restless leg syndrome?
Are you in pain?
What kind of pillow are you using?
Have you tried different masks? Different machines? (Machines are not all equal in sensitivity. I much prefer the PB GoodKnight 425 because it is so much more sensitive to my breathing needs.)
There are so many variables that need to be taken into consideration.
How close to your bedtime do you have your last meal or large snack? Does your bedtime snack consist of protein or carbs?
How much caffein do you drink/eat?
Good luck with your search!
- JB
One thing to keep in mind is that the machine (CPAP or BiPAP) may not be the whole answer you need.
What sorts of problems are you having?
What other medical problems do you have?
Is the machine you are using adequately address your needs?
Not everyone can use a CPAP machine (I have to have a BiPAP because of weak breathing muscles).
Do you also have Restless leg syndrome?
Are you in pain?
What kind of pillow are you using?
Have you tried different masks? Different machines? (Machines are not all equal in sensitivity. I much prefer the PB GoodKnight 425 because it is so much more sensitive to my breathing needs.)
There are so many variables that need to be taken into consideration.
How close to your bedtime do you have your last meal or large snack? Does your bedtime snack consist of protein or carbs?
How much caffein do you drink/eat?
Good luck with your search!
- JB
judybear, you raised a lot of good questions. All must be checked out.
I have been on the C-PAP machine a little over a year and have just started getting over 4 hours sleep at night. The past couple nights i actually slept for 5 straight hours. So, for me it took about 6 to 8 months to sleep more than 2 hours a night. Then started being able to get back to sleep for another 2 to 3 hours. This past week - about 14 months using machine- I finally slept 5 full hours. So, for me it took a long time for improvement to show up. I used to wake up more tired than when i went to bed. Still feel sleepy about 5 hours after get out of bed.
I have been on the C-PAP machine a little over a year and have just started getting over 4 hours sleep at night. The past couple nights i actually slept for 5 straight hours. So, for me it took about 6 to 8 months to sleep more than 2 hours a night. Then started being able to get back to sleep for another 2 to 3 hours. This past week - about 14 months using machine- I finally slept 5 full hours. So, for me it took a long time for improvement to show up. I used to wake up more tired than when i went to bed. Still feel sleepy about 5 hours after get out of bed.
10 posts
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