Sleep apnea or UARS and Xyrem

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
praying for sleep

Sleep apnea or UARS and Xyrem

Post by praying for sleep » Fri May 13, 2011 8:41 pm

I went through a horrible time with sleep deprivation. Went on Ambien but couldn't tolerate, went on anti-anxiety meds and they didn't work for long, went on Lunesta and also could not tolerate. Didn't do well on Ambien or Lunesta because I felt like my body was fighting and kept arousing for gasps of air.
I finally got in to see a pulmonologist sleep med dr. Tried multiple other meds that would give little relief, then lose their effectiveness.

They tried to do a sleep study, but out of several hours in bed, I only slept 2 hrs and that was completely fragmented. I was diagnosed with UARS and mild sleep apnea. Started CPAP. Not so sure it's doing much of anything. After sleeplessness for so long, I was feeling constantly drowsy and lethargic during the day but could not sleep. Started Nuvigil which helps with daytime sleepiness/lethargy/tiredness, but I still need some way to get some sleep. I've been approved for xyrem but I am so scared because if I had such a struggle to breathe on Ambien and Lunesta, what may possibly happen on something like xyrem? It's supposed to knock you out cold and fast.

I just want to know if there are other people out there who have sleep apnea or UARS and have used Xyrem safely without difficulty.

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Re: Sleep apnea or UARS and Xyrem

Post by robysue » Fri May 13, 2011 9:38 pm

Given your long and troubled history with prescription sleeping meds, have you ever considered asking for a referral to a cognitive behavior therapist who specializes in insomnia? My guess is that come CBT couldn't make anything any worse than it already is and it might just help since the prescription sleeping pills have made stuff worse.

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praying for sleep

Re: Sleep apnea or UARS and Xyrem

Post by praying for sleep » Sat May 14, 2011 6:47 pm

Thanks for your suggestion. Actually my sleep dr encouraged me to see a dr who specializes in CBT for insomnia and I have been going. CBT has not helped with insomnia. Since this dr also specializes in sleep meds and they both have prescribed meds for me, they discussed what's already been tried and came up with adding Nuvigil for daytime sleepiness so I can function at work and trying to wean the current med I'm taking for sleep to another med that would make the transition to xyrem safer. They feel I shouldn't worry about xyrem because I'm on CPAP. (I haven't had good results with my CPAP though, but keep wearing it anyway.) The wean from the current med will take weeks, then I'm supposed to start with the xyrem. I'm scared that with the xyrem I'll stop breathing and won't be able to arouse. Considering a med that supposedly immediately knocks you out, and knowing I'm alone (no one to call 911 if I stop breathing) is frightening. Of course I could say no to trying it, but I'm about out of options. It's just a scary trade-off.


Again, thanks for being considerate enough to make the suggestion.

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Re: Sleep apnea or UARS and Xyrem

Post by robysue » Sat May 14, 2011 8:08 pm

praying for sleep wrote:Thanks for your suggestion. Actually my sleep dr encouraged me to see a dr who specializes in CBT for insomnia and I have been going. CBT has not helped with insomnia.
How long have you been doing the CBT? It takes (a lot of) time you know. And what kinds of things has your CBT doc specifically asked you to do concerning the insomnia? And how well would you rate your compliance with those instructions? Quite frankly, I wouldn't give the CBT up entirely if I were you. But it does sound like a mixed CBT and drug approach maybe what you need.
Since this dr also specializes in sleep meds and they both have prescribed meds for me, they discussed what's already been tried and came up with adding Nuvigil for daytime sleepiness so I can function at work and trying to wean the current med I'm taking for sleep to another med that would make the transition to xyrem safer. They feel I shouldn't worry about xyrem because I'm on CPAP. (I haven't had good results with my CPAP though, but keep wearing it anyway.)
Ok, first it sounds like the docs are talking to each other. That's good. Second, they seem to have a plan that, except for the introductionof xyrem, you have no concerns about. It's just the xyrem you are concerned about---not the Nuvigiil and not the trying to wean you off the current meds. (And by the way, the CBT will be critical during that process.)

Now comes the important unanswered question: When you say you haven't had good results, exactly what do you mean? Have you looked at efficacy data and does it show that you still have a very high AHI? Or do you mean that even though you keep wearing it, you also know that you are way out of compliance in the sense that you're sleeping alot of the time without the mask on, so you know the apnea continues while you sleep? Or do you mean that in spite of using the CPAP every night, all night long you are still feeling really horrid? Note: These questions are not mutually exclusive, but their answers are critical for understanding what's going on.

And have you talked---at length---with the sleep doc AND the CBT dr about exactly how and why you say "I havent had good results with my CPAP though." If your AHI is still high with CPAP therapy, have you shown BOTH docs the data that indicates CPAP is not yet working well for you? And expressed your fear that since the CPAP is not yet providing you with effective therapy, you really are very worried about the xyrem?
The wean from the current med will take weeks, then I'm supposed to start with the xyrem.
I know the wean won't be easy. That's why you need to keep up the CBT in the meantime. Maybe with MORE time and less sleep meds in your system the CBT might have a fighting chance to do you some good.
I'm scared that with the xyrem I'll stop breathing and won't be able to arouse. Considering a med that supposedly immediately knocks you out, and knowing I'm alone (no one to call 911 if I stop breathing) is frightening.
Have you brought up this specific fear with BOTH docs? That you are ALONE and that if something goes wrong there is no one there to take care of you? If you haven't, then you should do so. And make sure you do some research of your own about the potential side effects of xyrem as it concerns breathing and the upper airway.

Best of luck

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praying for sleep

Re: Sleep apnea or UARS and Xyrem

Post by praying for sleep » Mon May 16, 2011 8:17 pm

About the CBT, I've been about 4 or 5 times so far, a couple times were just in discussion on meds and stress, rather than techniques.

About the not having good results with the CPAP, I've had it for a couple months, and in spite of wearing it religiously, it doesn't seem to be doing anything. When the pressure setting was higher, it felt like I was having trouble breathing from the force of pressure and it would keep waking me up blowing air out of my mouth in spite of having my chin strap on securely (it would puff my checks and blow my top lip open to let the air escape). Then when the pressure setting was decreased, it's easier to tolerate, but the same thing frequently happens. Also, it seems like some nights I spend more time with my body forcing me to arouse to take breaths, than I do in sleep (respiratory related arousals). I don't know much about my machine to view history. It looks like they may have this capability blocked. The DME won't give me a booklet on it. I know how to make pressure changes if I wanted to (but don't) because I've watched them do it enough, but just can't figure out how to get any history. It's a ResMed Autoset. Sometimes when I get up in the morning before it's done it's cool down and turned off, it'll say I've had it on for 7 or 8 hours with an AHI of 0.1 but I know I've spent the whole night with those repeated arousals that my body does to force me to take a breath. Doesn't make sense. Also, whether high or low pressure setting and wearing the chin strap tightly, sometimes it repeatedly puffs my cheeks and blows my upper lip out to let the air escape and this wakes me up.

Both of my doctors are great and are trying to help me and understand that I live alone, but both say they have patients that are having good success with xyrem. I've done a lot of research which is what scares me about the xyrem. If it were not for those episodes of my body trying to force me awake to breathe, I guess I wouldn't be so scared, but........ at this point I don't know what to do.

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Re: Sleep apnea or UARS and Xyrem

Post by Bright Choice » Mon May 16, 2011 8:55 pm

praying for sleep wrote:I went through a horrible time with sleep deprivation. Went on Ambien but couldn't tolerate, went on anti-anxiety meds and they didn't work for long, went on Lunesta and also could not tolerate.

They tried to do a sleep study, but out of several hours in bed, I only slept 2 hrs and that was completely fragmented. I was diagnosed with UARS and mild sleep apnea. Started CPAP. Not so sure it's doing much of anything.
Your situation sounds extremely similar to mine. My initial diagnosis was "mild sleep apnea in the form of upper airway resistance". Prior to cpap I was on lunesta or xanax for sleep. I was fortunate to be able start sleeping on cpap and I stopped all the drugs after about a week on cpap, which is not what you are experiencing. But, like you, during my first sleep study I only slept 2 hours and there was not enough data for a good diagnosis. Even with the cpap I felt tired, "hung over", brain fog, headaches etc. I bought a wrist oximeter and monitored my spo2. It showed that I had frequent spo2 desaturations. My (first) doc said to try adjusting the pressure on the machine to see if I could get better oxygenation. Changing the pressures did nothing (I tried over many weeks). I also have consistently low AHI's - never really over 2 or so, regardless of the settings. But, in reviewing my data on Rescan I saw that 90+ % of my events were central apneas. So, I couldn't figure out why my doctor would ask me to adjust my pressures when I had no obstructions or hypopneas as criteria for determining my pressure and changing the pressure on my S9 autoset would do nothing to take care of the central apneas. It all seemed wrong to me.


So, I decided to see another doctor. It turns out that I have Complex Sleep Apnea, which, in part, consists of central apneas that appear when cpap is initiated. I am changing machines to an ASV unit and I now feel that I have the proper diagnosis. This is a short version of a longer story. It ma not pertain to you but I thought I'd share. Read all you can on cpaptalk and you will find your direction. There are wonderful helpers here!!
Also, post your equipment here, as you will see mine is below, and people will be able to help you better. I'm also quite new here but will offer whatever I can.

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Re: Sleep apnea or UARS and Xyrem

Post by robysue » Mon May 16, 2011 9:39 pm

praying for sleep wrote:About the CBT, I've been about 4 or 5 times so far, a couple times were just in discussion on meds and stress, rather than techniques.
How far apart have those meetings been? Sounds like you are still in the "just starting phase" for CBT. What changes to your nighttime, sleep-related behavior have you been asked to make? What changes have you made?

Have you been asked to keep a sleep diary? Has the CBT doc said anything about getting onto a regular schedule concerning bedtime and wake up time? Has he said anything about moving the clock (so you can't lie in bed watching the clock worrying about what the time tell you about how little sleep you are getting? Has he said anything about techniques you could use to try to deal with the worries when they hit in the middle of the night?

Has he talked at all about sleep hygiene? If not, then I suggest you bring up sleep hygiene at your next meeting. Because the more I read about your descriptions of your nights, the more I think that you've got some serious sleep hygiene issues---some of which may be serious enough to have aggravated the tendency of sleep meds to suddenly quit working for you.
About the not having good results with the CPAP, I've had it for a couple months, and in spite of wearing it religiously, it doesn't seem to be doing anything. When the pressure setting was higher, it felt like I was having trouble breathing from the force of pressure and it would keep waking me up blowing air out of my mouth in spite of having my chin strap on securely (it would puff my checks and blow my top lip open to let the air escape). Then when the pressure setting was decreased, it's easier to tolerate, but the same thing frequently happens.
Ok---you've got a serious problem with mouth leaks in spite of using a chin strap. There are a lot of folks who can help you (but I'm not one of them). I'd post a thread with a title like Need help with pressure blowing my lips open in spite of using a chin strap if I were you. The one thing I do know that would be suggested is trying a full face mask. Any chance you'd be willing to try one? The advantage of a FFM is that when you open your mouth, the air doesn't rush out.
Also, it seems like some nights I spend more time with my body forcing me to arouse to take breaths, than I do in sleep (respiratory related arousals).
Have you reported this to BOTH docs? If not, you should and right away. Also, when you wake up feeling like your "body (is) forcing me to arouse to take breaths" is it because you don't feel like there's enough air coming into the mask and so you have difficulties with INHALING enough air? Or is it because you feel like you can't EXHALE against the pressure and that's preventing you from breating "normally"? Both problems are commonly described by the folks suffering them as "I feel like I can't breathe," but the "solution" to the "can't breathe" problem depends on figuring out which of the two sensations is the one you're experiencing.
I don't know much about my machine to view history. It looks like they may have this capability blocked. The DME won't give me a booklet on it. I know how to make pressure changes if I wanted to (but don't) because I've watched them do it enough, but just can't figure out how to get any history. It's a ResMed Autoset. Sometimes when I get up in the morning before it's done it's cool down and turned off, it'll say I've had it on for 7 or 8 hours with an AHI of 0.1
If you see an AHI when you look at the machine in the morning, the DME did NOT lock you out of accessing the data. Here's some practical advice for getting to your data:

1) In the morning after you press the info button, you currently are seeing a menu that tells you how long you had the machine running and your AHI. It should also have a Mr. Green Smiley Face or a Mr. Red Frowny. Do you often see Mr. Red Frowny? Or does Mr. Green Smiely show up most or all of the time?

2) When you are looking at that information screen with the Short Sleep Quality Report, you need to press BOTH the small buttons immediately to the RIGHT of the LCD at the SAME time and hold them down for about 3 to 5 seconds. You SHOULD see a brief flicker in the screen you are looking at. At this point, you can let those two small buttons up.

3) Use the Big Round Knob to scroll down ONE item on the menue on the far left of the LCD screen to select that icon. Click the Big Round Knob and you should be in the Long Sleep Quality Report. The information does not all fit on the screen at the same time. Use the Big Round Knob to scroll your way through all the data. The AHI, AI, and CAI data are at the bottom of this menu. The leak and pressure numbers are so-call 95-percentile leak rate and pressure level. At the top of the Long Sleep Quality Report, you can change the data period with the Round Knob from 1 day to 7 days to 1 month and so on.

4) But to really see your data you should download ResScan and start looking at the data in it. You can find a download link in any post by a user here named Uncle_Bob. He keeps the download links for BOTH the ResScan software AND the clinical menu in his signature. The machine uses a standard SD card to record the data, and all you need to read the data once you have ResScan installed is a standard SD card reader. If your computer doesn't have a built in one, they are cheap enough---in the neighborhood of about $10. In ResScan you can actually see when each recorded event happend and how long it lasted. But in your case, the more imporant data will be the leak rate line. You'll be able to see just how often and how bad those episodes where you notice air coming out of your mouth actually are. If you download at least once a week, you can also look at every breath you took when the machine was on. And since "sleeping" typically has a very regular pattern, you may find that you are sleeping a lot more than you think you are.
but but I know I've spent the whole night with those repeated arousals that my body does to force me to take a breath. Doesn't make sense. Also, whether high or low pressure setting and wearing the chin strap tightly, sometimes it repeatedly puffs my cheeks and blows my upper lip out to let the air escape and this wakes me up.
I can see why chipmunk cheeks wake you up. They used to wake me up occasionally. And whenever I try to talk with the mask on even now, I'm bound to get chipmunk cheeks.

And I can give you an idea for dealing with the chipmunk cheeks and air getting into your mouth in the first place: First, many people have these problems, including myself. And one very effective way of preventing them is to keep your tongue touching the back of your front teeth and the roof of your mouth (at least in the front). When the tongue is in this position, it is much more difficult for air to get blown into the mouth. So it goes down your upper airway where it belongs. So when you are awake in bed, pay very special attention to where your tongue is. You can train your tongue to stay where you want it to if you try.

There's a lot of sensory stimuli that your body has to get used to with APAP/CPAP. And as a light sleeper with insomnia problems, you are probably much more sensitive than most newbies are to all the sensory stimuli. And some of that sensory overload may be feeding your own anxieties ---- about lack of sleep and about whether the machine is doing anything for you. It will take time, but eventually some of the overload will start to bother you less than it does now.

And if you are running in APAP mode, you might do better in straight CPAP where the constantly changing pressures may be waking you up or keeping you from getting to sleep.

And this brings me back to the CBT stuff: Has either doctor given you any concrete tips on what you should do when you find yourself not being able to get to sleep or waking up extremely anxious. It sounds like you are spending 7 to 8 hours IN BED each night, but no where NEAR 7 to 8 hours asleep each night.

How long does it take you to fall asleep right at the beginning of the night? If it's taking more than 30 minutes on a regular basis, you might need to move bedtime back until you know you are sleepy instead of exhausted or tired. Or you may need to get back out of bed and do something relaxing and soothing in a different room until you start feeling sleepy.

How long does it take you to get back to sleep after one of your alarming "episodes of my body trying to force me awake to breathe" wake-ups? If these wakes are stressing you out to the point where you can't get back to sleep, that's something the CBT doc should know about and provide you with concrete suggestions of behavioral things you can do to help settle yourself down after one of these wake ups. And again, the CBT doc may suggest that if you are really upset after one of these wakes that you need to get out of bed and do something in another room until you're calm enough to try getting back to sleep again.

And it's also possible that while you were not particularly aware of the respiratory arousals BEFORE starting CPAP, your body was so well trained to wake you up to breathe, that your unconscious mind is having a very hard time letting go of this habit, but now that you DON'T need to wake up to breathe, your conscious mind is now able to NOTICE these unnecessary wakes and hence is going all the way to WAKE with those old subconsious fears of not being able to breathe up front and center in your thoughts. And if you are having trouble exhaling against your pressure, that aggravates the situation. All these are things that you CAN train your body to not do.

Finally, a suggestion for a good self-help book on both insomnia and sleep apnea: Try to pick up a copy of Sound Sleep, Sound Mind by Dr. Barry Krakow. He develops seven habits of mind and behavior that help encourage high quality sleep. Much of the book is about straight insomnia, but he spends the last chunk of the book on sleep apnea, how it can trigger sleeping problems, and CPAP/BiPAP and how adjusting to xPAP can all by itself trigger (temporary) problems with sound sleep. He doesn't gloss over the problems of adjusting to xPAP, but he does clearly believe that with work and effort and the right kind iof attitude, no matter how hard those adjustment problems are, they can be overcome and quality, deep restorative sleep can be accomplished.

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Re: Sleep apnea or UARS and Xyrem

Post by beyondtired » Mon May 16, 2011 11:13 pm

praying for sleep wrote:I went through a horrible time with sleep deprivation. Went on Ambien but couldn't tolerate, went on anti-anxiety meds and they didn't work for long, went on Lunesta and also could not tolerate. Didn't do well on Ambien or Lunesta because I felt like my body was fighting and kept arousing for gasps of air.
I finally got in to see a pulmonologist sleep med dr. Tried multiple other meds that would give little relief, then lose their effectiveness.

They tried to do a sleep study, but out of several hours in bed, I only slept 2 hrs and that was completely fragmented. I was diagnosed with UARS and mild sleep apnea. Started CPAP. Not so sure it's doing much of anything. After sleeplessness for so long, I was feeling constantly drowsy and lethargic during the day but could not sleep. Started Nuvigil which helps with daytime sleepiness/lethargy/tiredness, but I still need some way to get some sleep. I've been approved for xyrem but I am so scared because if I had such a struggle to breathe on Ambien and Lunesta, what may possibly happen on something like xyrem? It's supposed to knock you out cold and fast.

I just want to know if there are other people out there who have sleep apnea or UARS and have used Xyrem safely without difficulty.
I was curious if it was tough for you to get approved for Xyrem? Cause I had thought that it's usually given to people with Narcolepsy, and sometimes for other things such as hypersomnia. Though, I know that some insurances are reluctant to approve it for people cause of the really high price that keeps going up.

praying for sleep

Re: Sleep apnea or UARS and Xyrem

Post by praying for sleep » Thu May 19, 2011 5:55 pm

Thanks for sharing your experience "bright choice". A sleep study that I had 9 or 10 years ago showed UARS and some central apneas. I slept enough for them to get that much. That period of time waas bad... tried CPAP but the setting was pretty high then and when I couldnt tolerate at home, the company came and got the machine. The dr's told me there was nothing else they could do for me. over a very long period of time, and trying everything natural, herbal, and over the counter meds, I managed to somehow get from then to Set 2010 trying different combo's...
Fast forward..... started getting worse in Oct 2010..... then bad bronchitis at New Years... and that triggered something that triggered some kind of major upheaval in my body and I couldn't sleep at all 24 hours a day for days at a time. Every time my body tried to doze off, it triggered gasps for air over and over and over. within a couple months, I thought I'd lose my mind. I had to take leave from work for almost 3 months. Midways of that leave time, I finally got in to the sleep dr and they've been working to try and help me get some sleep ever since. Alot of meds tried and failed. I am not happy that others have trouble with sleep, apnea, etc.... but it sure makes me feel better to know that there are other people out there that have gone through some of the things I have.... and are still working on it...

By the way, I don't know how to do that posting my settings thing to show up at the bottom of all my posts. I found the site by accident and tried typing in something and it let me. I guess I should read the into and register or something. Anyway, thanks again for sharing your info.

praying for sleep

Re: Sleep apnea or UARS and Xyrem

Post by praying for sleep » Thu May 19, 2011 6:35 pm

robysue
When I first started with my sleep dr, she tried some meds that were supposed to be safe and very helpful for people to sleep that would not affect the respiratory drive, but quickly learned that the something as amiss with how my body reacted to some of the meds. She started having me keep sleep logs so she would know how much sleep I was actually getting. She realized how horrible it was when she wanted me doing the sleep hygiene techniques and later the sleep consolidation techniques. I was already so tired and exhausted that the sleep consolidation techniques seemed impossible. I understood the rationale, but I wasn't sleeping ANY, so sleep consolidation didn't work for me. I honestly thought that I would not survive. I had gone without sleep for so long that my body just felt too tired to try to breathe anymore... I haven't been asked to keep a sleep diary, just the sleep logs, which I am still doing. My sleep dr wanted me to continue with the sleep logs so she could see if any of the med changes were helping at all.... During the early stages with my sleep dr, she tried to get me on some type of schedule concerning bedtime and out of the bed time as a regular schedule. I do have a regular schedule... down at a certain time, up at a certain time. When we tried some of the sleep hygiene techiqnues, where if you're in bed for more than 20 minutes and not asleep, get up and go to another room and read or something till I felt tired, then go back to bed, but what was happening was that all I had was nights of up,down, up, down, up, down.... and no sleep.

Months before I started going to the sleep dr, an internal med dr thought my issues was work related anxiety and prescribed med for that.... then when it didn't work, he changed it to another anti-anxiety, then back to the original at a higher dose.... it sure helped me not feel anxious, BUT it didn't help with sleep. Sleeping pills didn't help, anti-anxieties didn't help, now have a mix of meds weaning up and down... I used to be a little bit of a clock watcher long before this, just wondering how much longer I had to be able to try to sleep. My CBT dr has recommended turning the clock so I don't see it, but kinda hard to keep sleep logs of waking and sleeping times when I can't see the clock. I'm not a clock watcher any more. I only look when I arouse, write it down, and guestimate back to sleep time. I'm pretty good at the estimation of wake sleep time. On my first sleep study about 9-10 years ago, the tech asked me how long I thought I slept and I told him 4 hrs, which was right. The more recent sleep study a few months ago, I told the tech that at the most, I got a total of 2 hrs fragmented sleep> I was off by two minutes. It was fragmented 122 minutes.

My screen won't let me finish this post, so I'll finish in another post.

praying for sleep

Re: Sleep apnea or UARS and Xyrem

Post by praying for sleep » Thu May 19, 2011 7:05 pm

robysue
I wanted to finish my response to the things you addressed- about the respiratory related arousals, I have told the dr's but I think they may believe it's due to anxiety. I can tell you for sure, it's not. To be honest, I feel that part of the problem is that my thyroid is larger on one side than the other and adds pressure to my airway. Several years ago another dr did an MRI and said it appeared to her that that side of my thyroid that is larger is pressing on my trachea and esophagus and should be removed. My other surgeon friend talked me out of it. I recently went to another ENT that did a CT, and told me my thyroid was definitely larger on one side and pressing against my esophagus and trachea, but he didn't think that was my problem and I kinda felt like he lblew me off. I don't know. My whole airway problem feels like it is at the base of my neck, where my thyroid is. I keep wondering if that's why the CPAP can't force the air past regardless of the setting, whether high or lower. The only people I personally know say they obstruct in the upper portion of their airway, not down in the base of their neck. So to answer your question about whether "I feel like I can't breathe", sometimes it feels like I can't get air in and down to my lungs, then sometimes when I doze, I feel like I can't breathe out because breathing against the pressure of the CPAP.

I printed out your instructions for viewing the sleep quality reports so I can try it. Also, I'm going to do that download with ResScan software.
It's good to know that other people have issues with the "chipmunk cheeks". I had figured out that technique with pushing my tongue against the back of my front teeth.

About APAP, when I first got the machine, it was running in APAP mode. I've read so much online about APAP vs CPAP with UARS/ mild sleep apnea... and it seems like there are varying opinions and results, but my sleep dr said the same thing you just said, that the constantly changing pressure might be part of the reason I keep waking up.


About the CBT, discussed imagining a place that I really enjoy that brings me peaceful sensations or a technique that's kinda like visualization... but that's about it for sleeping. I'm going to try to find a copy of the book you recommended.

I want to write more, but something keeps making my computer screen jump around with every key stroke, so guess I will have to close for now.

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Re: Sleep apnea or UARS and Xyrem

Post by Jade » Fri May 20, 2011 3:42 am

I would like to send you a PM (private message) and I can't unless you register...

praying for sleep

Re: Sleep apnea or UARS and Xyrem

Post by praying for sleep » Fri May 20, 2011 6:12 pm

Is there a way for me to delete my own posts?

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Re: Sleep apnea or UARS and Xyrem

Post by Fitness Seeker » Tue Aug 09, 2011 11:59 pm

I am also using the ResMEd AUtoset s9, w/ humidifier. Just started a week ago.
@Robysue, you mentioned in one of your responses to put it in 'cpap' mode instead of 'apap'. Could you tell me how this could be done? I also am having a difficult time adapting and am reading alot of the posts tonight. I can relate to many of the same issues that other UARS sufferers complained about.

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Re: Sleep apnea or UARS and Xyrem

Post by robysue » Wed Aug 10, 2011 12:21 pm

Fitness Seeker wrote:I am also using the ResMEd AUtoset s9, w/ humidifier. Just started a week ago.
@Robysue, you mentioned in one of your responses to put it in 'cpap' mode instead of 'apap'. Could you tell me how this could be done? I also am having a difficult time adapting and am reading alot of the posts tonight. I can relate to many of the same issues that other UARS sufferers complained about.
You have to go into the clinician's set up menu to select the "mode". You'll have two choices: APAP and CPAP. Select CPAP and then keep scrolling down to where you set the CPAP pressure.

I'd suggest getting a copy of the clinician's manual for your S9 AutoSet before you try switching from APAP to CPAP. You can get that by finding a post by Uncle_Bob.

As for what pressure to use, most folks around here would say start with your 95% pressure level from the APAP data and see how that feels.

You might also want to consider your EPR setting. Some folks are sensitive to it too. And it's a comfort setting and should be available through the patient's set up menu, but many DMEs lock you out.

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Machine: DreamStation BiPAP® Auto Machine
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear
Additional Comments: PR System DreamStation and Humidifier. Max IPAP = 9, Min EPAP=4, Rise time setting = 3, minPS = 3, maxPS=5