I've been using my c-pap machine with the nasal pillow mask now and going into my 3rd week with it.  I have a crazy question.  I took my smart card in and the printed report shows that I had 82% compliance and my AHI number was very good (4 I think).  So it seems that I'm getting good, restful sleep.  Here's my question to all....do any of you just feel totally exhausted upon waking?  I know that sounds crazy but sometimes, not all the time, when I do wake up I just feel like I'm still in a deep, deep sleep.  Does anyone else ever feel that way.  My husband, who is also a c-pap user, says he does sometimes too and thinks it's because we're finally getting really deep sleep in the night.  I just want feedback to know if that's normal and if it will go away if I finally get caught up on my sleep.  Thanks!!

dimples wrote:

I've been using my c-pap machine with the nasal pillow mask now and going into my 3rd week with it.  I have a crazy question.  I took my smart card in and the printed report shows that I had 82% compliance and my AHI number was very good (4 I think).  So it seems that I'm getting good, restful sleep.  Here's my question to all....do any of you just feel totally exhausted upon waking?  I know that sounds crazy but sometimes, not all the time, when I do wake up I just feel like I'm still in a deep, deep sleep.  Does anyone else ever feel that way.  My husband, who is also a c-pap user, says he does sometimes too and thinks it's because we're finally getting really deep sleep in the night.  I just want feedback to know if that's normal and if it will go away if I finally get caught up on my sleep.  Thanks!!

An interesting situation, Dimples.

First off, how does your machine decide on compliance rates ? While 82% is pretty good, does this figure allow for possible leaks or os it based on the time that the machine is turned on ?

After 3 weeks you should notice positive effects of cpap usage, however the compliance issue needs to be looked at.

Another possibility is 'titrated pressure'........was your pressure titrated ? or were you started on a particular setting to 'see how things go' ? In a good few cases a small pressure adjustment is often required within the first few weeks of therapy.

I suggest that you look at the questions above and contact your sleep doctor (by phone should be sufficient) and get their opinion.

Kind regards,

Daniel.


_________________
The untreated Sleep Apnoea sufferer died quietly in his sleep.......
Unlike his three passengers who died screaming !!!!!!

(Anon)

The compliance rate of 82% is just simply how long the machine was on.  I had a few leaks but the RT said it was pretty darn good.  At first I could only wear the mask for maybe 3 hours tops.  Now I'm up to 6-7 hours a night.  I do notice a change if I use the machine.  The other day I took it off after I discovered it was out of water in the humidifier and just fell back so sleep without it.  I paid for it the next day.  I was extremely tired and draggy.  My pressure was titrated, yes.  I was at a 10 but went back to the neurologist to have it lowered at least until I could get used to the pressure.  I was not being compliant b/c I would wak up after 2 hours feeling like I was going to suffocate.  He lowered it to 8.  Much better.  I wore the mask last night for 5 hours but woke at 4 am feeling that suffocating feeling again.  I wonder if it isn't a problem with my nasal pillows now.  My husband tried those before he went to a nose mask.  He said he couldn't wear them as they would slip and shut off the air.  I really like the feel of the pillows though.  They are lightweight and since I'm also claustrophobic, I think they're the choice for me.

dimples wrote:

The compliance rate of 82% is just simply how long the machine was on.  I had a few leaks but the RT said it was pretty darn good.  At first I could only wear the mask for maybe 3 hours tops.  Now I'm up to 6-7 hours a night.  I do notice a change if I use the machine.  The other day I took it off after I discovered it was out of water in the humidifier and just fell back so sleep without it.  I paid for it the next day.  I was extremely tired and draggy.  My pressure was titrated, yes.  I was at a 10 but went back to the neurologist to have it lowered at least until I could get used to the pressure.  I was not being compliant b/c I would wak up after 2 hours feeling like I was going to suffocate.  He lowered it to 8.  Much better.  I wore the mask last night for 5 hours but woke at 4 am feeling that suffocating feeling again.  I wonder if it isn't a problem with my nasal pillows now.  My husband tried those before he went to a nose mask.  He said he couldn't wear them as they would slip and shut off the air.  I really like the feel of the pillows though.  They are lightweight and since I'm also claustrophobic, I think they're the choice for me.

I see that you went to see a neurologist. Not to pry, but be sure to check your medications for any impact on sleep percentages. A few anti-epileptics can cause changes in REM, SWS, Latency, Limb movement, Etc. In fact, many medications will impact your sleep. They are just beginning to touch the surface on this topic, IMO.

The deep sleep that you mention. This concerns me, somewhat. While SWS is good, it is normal to have "low" percentages (say 10% although it is mostly based on your age). If you are increasing SWS percentage, then something may be off. Could it be that the pressure is not ideal, leaking, or maybe you are having onset events, maybe too much pressure is leading to central apneas. Maybe you aren't getting the rest you need until your body absolutely needs it. Im not trying to say that this is guaranteed, its just an idea.

Did you have your pressure titrated in a lab and if so, did you go through the entire night with the nasal pillows?

Do you wake up with an alarm?

If an alarm pulls you out of deep sleep, you'll feel especially groggy.  Try waking up naturally and immediately get out of bed to see if you feel the same way.

I have experienced this to a certain extent. I think in my case I slept so bad before cpap
that I forgot what it was like to awaken from a deep sleep or even a full nights sleep. Once
I'm up and around the grogginess goes away.

Quote:

The compliance rate of 82% is just simply how long the machine was on.  I had a few leaks but the RT said it was pretty darn good.

This doesn't equate to compliance. You have no way of knowing for how long you actually used the machine......and herein may lie your problem and solution.

Quote:

At first I could only wear the mask for maybe 3 hours tops.  Now I'm up to 6-7 hours a night.

This is pretty good. A gradual increase in usage is always a good sign.

 

Quote:

I do notice a change if I use the machine.  The other day I took it off after I discovered it was out of water in the humidifier and just fell back so sleep without it.  I paid for it the next day.  I was extremely tired and draggy.  My pressure was titrated, yes.  I was at a 10 but went back to the neurologist to have it lowered at least until I could get used to the pressure.  I was not being compliant b/c I would wak up after 2 hours feeling like I was going to suffocate.  He lowered it to 8.  Much better.  I wore the mask last night for 5 hours but woke at 4 am feeling that suffocating feeling again.

A reduction in pressure like this should only be for a short period of time to facilitate compliance as the value of your cpap therapy is reduced.

  

Quote:

I wonder if it isn't a problem with my nasal pillows now.  My husband tried those before he went to a nose mask.  He said he couldn't wear them as they would slip and shut off the air.  I really like the feel of the pillows though.  They are lightweight and since I'm also claustrophobic, I think they're the choice for me.

Are you a natural nose or mouth breather ? Nasal pillows are not suitable for mouth breathing, neither are nasal masks.

Dimples, I believe that your problem relates to two issues..........the reduction in pressure has reduced the value of cpap. You should see about having the pressure restored to 10, sooner rather than later. The other issue is compliance.....very common in newly diagnosed sufferers. From reading your posts it looks like you have good nights and bad nights as regards usage of cpap and on the good nights you become aware of the benefits the following day. True compliance means using cpap for all the time that you sleep.........this gives the maximum benefit. It may be necessary to build this up over a period of time. Remember too......you are not unique as we have all 'been there'.

Building up compliance is not easy and takes a lot of hard work. I suggest that you take it one night at a time and try to increase the usage time gradually (I found 15 minutes extra every few nights a great help)........it only takes about 2 weeks to build up an extra hour. The benefits of full compliance far outweigh the inconvenience.

As regards your 'suffocation' feeling........this might be allergy related and is worth discussing with your sleep doctor. There are a number of OTC sprays that may help.

Best of luck.

Daniel.


_________________
The untreated Sleep Apnoea sufferer died quietly in his sleep.......
Unlike his three passengers who died screaming !!!!!!

(Anon)

I'm not on any medications.  I simply went to a neurologist for a problem I was having with vertigo.  That issue has been resolved with physical therapy (had to move the 'rocks' in my head..lol).  The neurologist is also a sleep disorders doc so that's why he zeroed in on the sleep apnea.  If I'd not gone to him about the vertigo, who knows if I would have ever been diagnosed with it.  I did my titration study with first a nasal cradle that I hated.  I used it for the first 4 hours and woke feeling like I was suffocating.  The tech came in and put the nasal pillow type on me and I slept like a baby.  Hadn't slept like that in years!  It was amazing.  I am going to visit my repiratory therapist today and bring in my smart card.  I want to see what my readings are after having the pressure lowered to 8.  I may also try using something for allergies and see if that might help with the suffocation issue.  I used the machine until 4 am this morning.  I just didn't feel tired when I woke up with it.  Isn't that strange?  I woke up on my own at 4:00 and couldn't go back to sleep for anything with the mask on.  I took it off and drifted back off to sleep for another couple hours but woke feeling refresed.  I've been up since 6:00 and feel pretty darn good.  In answer to someone's question, no I don't wake to an alarm in the summer.  I work at a school so am home in the summer.  This fall will be different.

I've been using c-pap since October of 2007. I have already tried a few different masks and I wear the mask the entire time I'm sleeping. I never feel refreshed when I get up. The doctor I saw does not know why either. I think it may be time for another sleep study to see if it has gotten better and check that way. It has been almost a year since my last sleep study. Does anyone run into this problem where they had no success at all?

Hmm...never heard of that.  Yes I would go back to my doctor and let him know.  Do you get the report from you machine?  I take my smart card in to my respiratory therapist who gives me a printout and goes over the results with me.  We do this every 30 days for the first year then after that every 6 months.  I see that my readings are all good but I don't need to see them to know how much better I feel.  Maybe there is something else going on with you.  I'd sure check into it.

I wonder if I need to inquire about a respiratory therapist or if the pulmonary doctor is enough. Does anyone know about that?

I think you need to stick with a doctor too, tweet.  It was a neurologist/sleep disorders doc that first sent me to have a sleep study.  I had him send my results of the dx sleep study as well as the titration study to my primary care doctor, who has not been in on any of this.  By sending my results to her though she is kept up to date on that in case there is something else going on with my health...then she has everything she needs to make informed decisions.  Having a respiratory therapist has been a perk of the place I purchased my machine and mask from.  It's called Mercy Regional Home Health Equipment and it's an off-shoot of the hospital in our community.  They work with the doctors on everything from SA equipment to walkers, O2 equipment, etc.  The RT on staff there keeps a file on everyone who has purchased their SA equipment from them, keeps updated reports on file from the smart cards, calls and checks on us every week for the first few weeks to make sure we're not having any problems, lets us know when it's time for new filters, etc. and heads up a group called A.W.A.K.E which is a support group for SA sufferers.  Can't tell ya what that acronym means though.    She has us all on a group mailing list and invites (and the public) us to various events she puts on at the hospital.  She has a speaker each time we meet.  The meeting coming up in July has a nutritionist that will speak on metabolism and weight loss.  Last time it was a pulmonologist that spoke.  Very interesting and really fun to get with others and have a round table discussion.  Lots of support.  Does your community have anything like that?  Maybe that is something you could look into.

Not sure of any support groups but will look into it. Is there a charge for this?

Nope totally free.

Tweet...you can find a link on this board for the AWAKE groups.

As for your fatigue upon waking....  If you are 100% compliant on your machine and you do not have mask leak issues AND you have been 100% compliant since 2007...yes, have another titration study.  Do you have PLMD that is not being treated...or other conditions?

If you answered no to the above and you find you need to nap throughout the day a few times...can fall asleep within 10 minutes at each nap, and sleep long hours each night...you may have another sleep disorder other than the sleep disordered breathing (SA).  I have Primary CNS Hypersomnia in addtion to my SA.  If you feel your symptoms are similar to those of Hypersomnia and you can rule out all other possible causes...then when you see your DR...get the titration and ask your Dr to also schedule a following MSLT study.  This is the Multi Latency Sleep Test which is down the following day after the titration.  It is an all day thing and consists of 4 to 5 naps spaced 2 hours apart.  Each nap is 20 minutes in length and they are seeing if you fall asleep within 10 minutes.  They also look for sleep onset REM sleep and other factors


_________________

CLICK HERE FOR MORE INFO~ http://tinyurl.com/69q52a

BiPAP Auto M 13/8 Mirage Nasal Swift. 20 years+ undx'd. RLS/PLMD, Hypersomnia & more.