on CPAP for 5 years still don't sleep all night.

mel334 · Post by **mel334** » Wed Sep 26, 2007 5:21 pm

I've been on CPAP for 5 years. Have a Resmed S7 with non heated humidifier and SwiftII nasal pillows. Pressure is 15 I think. The most I sleep ata time is 2 hours usually less. Have slept 4 hours at a time (rarely). Feel better but would like to feel really better. Told my sleep docs but they don't seem concerned. Before I got on CPAP I was rolling over and looking at the clock evry hour. Wear I chin strap but sometimes it makes my ear hurt. Tried the mouth taping but got awakened constantly with flutter mouth. I started reading all the topics but I'm too tired to search them all for answers. I envy all of you who sleep all night. I'd kill for a good nights sleep. Since it's been 5 years I'm going to schedule another sleep test. I would welcome any help you can give me. I didn't know you existed till last week!

sleepycarol · Post by **sleepycarol** » Wed Sep 26, 2007 7:38 pm

Keep on reading as there is a wealth of knowledge on this board. Welcome and good luck!!

cflame1 · Post by **cflame1** » Wed Sep 26, 2007 7:44 pm

If you don't get any satisfaction... which it sounds like you don't... what about trying another doc... one that will listen to your concerns and take you seriously. Five years like that and I think that I would have gone nutty.

kteague · Post by **kteague** » Wed Sep 26, 2007 8:24 pm

So your doc is not concerned? If you haven't reached your goal of the proper amount of sleep to avoid adverse health effects, then the search for answers is not over.

A pressure of 15 is starting to get up there and it may be you need different equipment to make that pressure more tolerable. Some others will probably kick in here on that subject.

Maybe another study is not a bad idea to see if there are any other sleep disorders disturbing your sleep. I am another person who still has not reached my sleep goals, and thankfully I have a doctor now who is not satisfied with my few hours a night.

How's that saying..? Good, better, best, never let it rest, till your good is better and your better is your best.

Kathy

mel334 · Post by **mel334** » Wed Sep 26, 2007 9:23 pm

Well I've had lousy sleep for 20 years so this is better. Did find some posts to read and I've velcroed the head gear,removed a pillow, and used the pipe . tape on my mask. Let's see what happens tonight. Think I'll ask for another sleep study. This is the only sleep practice in the area. One of the nurses is on cpap and knows I'm not sleeping like I should. Makes it real hard to get out of bed in the am.

Slinky · Post by **Slinky** » Wed Sep 26, 2007 9:29 pm

So what is the possibililty of going OUT of the area for a new sleep study and a REAL sleep doctor, one who CARES about his/her patients and their response to therapy? If at all possible that certainly is what I would do!

Snoredog · Post by **Snoredog** » Wed Sep 26, 2007 10:30 pm

I would go on a Bipap Auto, it is all about comfort, more comfortable the therapy is the longer you will use it.

The longer you sleep the less fatigue you should have.

Wulfman... · Post by **Wulfman...** » Thu Sep 27, 2007 8:58 am

mel334 wrote:I've been on CPAP for 5 years. Have a Resmed S7 with non heated humidifier and SwiftII nasal pillows. Pressure is 15 I think. The most I sleep ata time is 2 hours usually less. Have slept 4 hours at a time (rarely). Feel better but would like to feel really better. Told my sleep docs but they don't seem concerned. Before I got on CPAP I was rolling over and looking at the clock evry hour. Wear I chin strap but sometimes it makes my ear hurt. Tried the mouth taping but got awakened constantly with flutter mouth. I started reading all the topics but I'm too tired to search them all for answers. I envy all of you who sleep all night. I'd kill for a good nights sleep. Since it's been 5 years I'm going to schedule another sleep test. I would welcome any help you can give me. I didn't know you existed till last week!

The sleep stage cycles are supposed to cycle through at about 90 to 120 minutes.....and repeat throughout the night. It almost sounds to me like something is possibly disrupting your deep sleep stages (3, 4 or REM).
Does that S7 machine have exhale relief (EPR)? Which specific model is it? If it does not, maybe you need to look into a machine that DOES have breathing relief (EPR or C-Flex/A-Flex). A straight pressure of 15 is starting to get a little on the high side for comfortable nightly breathing.

Have you tried a full face mask?
Do you have a copy of your sleep study?
Did you have any Central apneas? (or any other conditions that might mess up your sleep)

Den

mel334 · Post by **mel334** » Fri Sep 28, 2007 7:14 am

Don't think my S7 has exhale relief don't have copy of sleep study but can probably get one. Looks like I need to have a new study and ask some questions. You have been a big help. Last night I slept 3 hours straight times 2. Either It was a blip or the velcro, lesser pillows plumbers tape helped. When I get my copy I'll share it with you. I don't understand all the numbers you keep quoting. I do wear my mask every night and don't take it off. I can't imagine trying to sleep without it.

oceanpearl · Post by **oceanpearl** » Fri Sep 28, 2007 7:34 am

mel334 wrote:Don't think my S7 has exhale relief don't have copy of sleep study but can probably get one. Looks like I need to have a new study and ask some questions. You have been a big help. Last night I slept 3 hours straight times 2. Either It was a blip or the velcro, lesser pillows plumbers tape helped. When I get my copy I'll share it with you. I don't understand all the numbers you keep quoting. I do wear my mask every night and don't take it off. I can't imagine trying to sleep without it.

The first thing that comes to my mind is to try a full face mask. Until I trained myself to stop mouth breathing, about 2 hours was all that I could sleep without awakening. Now I am sleeping up to 4 hours at a time.

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): Awakening

Slinky · Post by **Slinky** » Fri Sep 28, 2007 7:47 am

I recognize the 2 hour sleep/wake cycle. I've gone thru it periodically since a whiplash in 1994. Thankfully, I'll have several months w/o that 2 hour cycle, then for some unknown reason I'll fall into it again. We know there's more going on than "just" sleep apnea but haven't been able to schedule a sleep study whilst I'm experiencing them. They can last a month or more or they can last just 1-2 weeks.

However, this much I "can" tell you: I would NOT tolerate a doctor who wasn't concerned about 5 years of CPAP therapy and still poor sleep. If you have no option to travel to a GOOD sleep doctor then its time to shake this one up!! I'd rather travel a couple of hours to a GOOD sleep doctor.

If insurance is the issue then I'd let the insurance company know that this "sleep" doctor (?) is incompetent and disinterested in getting to the root of your sleep problems or even monitoring your CPAP therapy to attempt to improve your results.

Snoredog · Post by **Snoredog** » Fri Sep 28, 2007 10:32 am

mel334 wrote:Don't think my S7 has exhale relief don't have copy of sleep study but can probably get one. Looks like I need to have a new study and ask some questions. You have been a big help. Last night I slept 3 hours straight times 2. Either It was a blip or the velcro, lesser pillows plumbers tape helped. When I get my copy I'll share it with you. I don't understand all the numbers you keep quoting. I do wear my mask every night and don't take it off. I can't imagine trying to sleep without it.

The S7 does NOT have exhale relief. If your current pressure is 15 cm, you may need a higher pressure, that will be even more difficult to tolerate. Not sleeping long enough can be a major reason why you are seeing to benefit to therapy.

A new PSG is a good idea but at those pressures I would be asking my doctor for a Bipap which offers some exhale relief. The exhale relief will offer more comfort where maybe you use the machine longer and get more sleep.

Your insurance should buy you a new machine about every 5 years, might as well get one that is going to do the job this time around. You will have to keep that new machine for another 5 years (before most insurance will buy you another).

I suggest you look at a Remstar Bipap Auto with BiFlex.

mel334 · Post by **mel334** » Fri Sep 28, 2007 9:55 pm

BC requires a sleep study before new machine so I scheduled one for this coming tuesday night. I saw that resmed has come out with the liberty mini full face mask. I might try a ff mask. Would get rid of the damned chin strap! I'm going to suggest a bipap too. I haven't been pushy enough. At least I have you guys to talk to now and it's been a help.

goose · Post by **goose** » Fri Sep 28, 2007 10:23 pm

Welcome Mel334!!!! Happy to have you aboard.......

The best thing you have said is that "I can't imagine sleeping without it"!!!!!
Now, it's just a matter of figuring out what's going on!! A new sleep study would be step one for sure and you already have a sleep study scheduled!!! Very cool!!!!
I'd have to agree with the others -- if you need to travel a bit to find a good sleep doc that's a good thing to do.

I've found I don't have to be "nasty" with the medicos, just very persistent. They just need to understand that you are worrying about your health, and will not compromise.

The bestest thing -- read, read, read!!!!! Knowledge is power!!!! (if you haven't found it yet, the yellow light bulb at the top of the page is a great repository!!!)

Good luck -- and keep us up on how you're doing.
cheers
goose

mel334 · Post by **mel334** » Sat Sep 29, 2007 8:45 pm

so how do I know what machine to push for? Will I be able to get software to monitor my own therapy? And what are all the things you talk about those number graphs? I haven't the foggiest idea what they all mean.

on CPAP for 5 years still don't sleep all night.

on CPAP for 5 years still don't sleep all night.

5 years and still not sleeping well

Re: on CPAP for 5 years still don't sleep all night.