Why have prescription maximums (at least initially)?

I messed up the quote in the last post. My comments ended up within the quote. FIXED

palerider wrote:

robysue wrote:Does the clinical stuff say anything about the criteria the AirSense 10 AutoSet uses to score a RERA?

I've never seen any definitions to that effect.

I have never seen anything either.

PEF wrote: I agree with all this. My OSA/UARS is treated while I sleep, but this therapy cannot help me when I am not sleeping. My xPAP therapy has only made my sleep onset insomnia slightly worse.

But I have a more basic question. I do know that I have a lot of fear/anxiety around the issues of sleep. And I have been told why this is by Psychiatrists that have treated me. They assumed that childhood trauma is the cause. But what if I think I may have gotten over that and the real reason may be that my limbic brain is fearful of sleep because of breathing problems? What if I am afraid of choking in my sleep? My husband has seen me choke in my sleep several times and it frightens him. On at least a couple of occasions I remember he had to roll me over and wake me up for fear of something bad happening. (emphasis added)

Did these events occur BEFORE starting PAP or after starting PAP?

If your husband has seen you choke in your sleep while you were using your machine, then the settings are clearly NOT optimal, and you need to look at the data from the nights where your husband has witnessed a apnea attack in progress.

On the other hand, if your husband has NOT witnessed any choking episodes since you started CPAPing, that's further evidence that the machine is doing its job of preventing the worst of your OSA episodes from happening in the first place. Given the data you've potsed, however, I'm going to assume that these scary apnea episodes occurred pre-CPAP.

As to whether your fear/anxiety of going to sleep might be rooted in the history of scary apnea events rather than childhood trauma, I don't think it's an "either/or", but rather a "both/and" situation. If something really frightening happened in childhood that lead to psychological problems in general, it's reasonable to assume that sleep could/would be affected. But untreated OSA is known to be a cause for insomnia that just doesn't respond to standard treatments for insomnia. (See the second half of Sound Sleep, Sound Mind for a discussion of this phenomena. Dr. Park's Sleep Interrupted also discusses the connection between untreated OSA and insomnia as I recall.)

Given the severity of your worst untreated OSA apnea events, it's quite possible that your limbic brain is genuinely frightened of going to sleep. And it can take a while for the brain (i.e. the limbic brain in particular) to figure out that this "thing" on your face is a friendly thing and that as long as you sleep with the friendly thing on your face, there won't be any serious breathing problems. Since most newbies who don't abandon PAP therapy right away start to sleep well with the machine within the first 2-3 months of PAP therapy, it's reasonable to conclude that it can take that long for a typical newbie PAPer's brain to sort out that it is now ok to let the body and brain fall into a deep, restful, restorative sleep with plenty of REM sleep.

But you are an individual and your brain is not reacting in a "typical" fashion simply because we're not all typical and you have history of complex sleep problems that go beyond simple, untreated OSA. So it's not a big surprise to me that your brain is having a lot more trouble than a typical new PAPer's brain in sorting out that it's now OK to go to sleep.

So my best guess is that your excessively long sleep latency is being caused by both your limbic brain's fear of sleep (because sleep is associated with nasty breathing problems) and some continuing residual anxiety/fear from the childhood trauma that may only be there at an almost unconscious level. And my guess is that the two sources of fear/anxiety feed off each other, making a bad situation even worse in terms of the sleep onset insomnia.

That is why I want to really stick it out with xPAP therapy.

Given the scary severity of the worst of your pre-CPAP apnea episodes, I'd say that it is critical that you find a way to stick it out with xPAP therapy.

Seriously: Without xPAP your sleep anxiety is likely to grow WORSE not better. Particularly since you are now keenly aware of just how bad your apnea episodes can be.

Another intriguing question is what part bad sleep and breathing problems may have played in my inability to successfully process my childhood trauma and get through it successfully? In other words, could the Psychiatrists have played down the role of sleep quality in this whole thing and played up the idea of childhood trauma being so crippling for me as an adult?

These are very good questions and they're well above my pay scale.

Having said that, I'll add this: If the psychiatrists who have treated you for issues related to the childhood trauma were not also board certified in sleep medicine, they may very well not have been fully aware of how serious untreated OSA can be. And if you don't happen to fit into the standard OSA stereotype of being severely overweight with a history of very loud snoring, the fact that you're female means that they may not have even considered the possibility that you have OSA: OSA is under diagnosed to begin with and there are a lot of docs out there who seem to believe that the only people at risk of OSA are obese with large necks, and if you happen to be a normal weight female with a normal sized neck and sleep problems, many docs will look for all kinds of causes before they think that untreated OSA maybe a significant contributing factor to the bad sleep problems.

I'll add this: xPAP treats the OSA, but it only treats the OSA. In other words, if you can find a way to train the limbic brain to accept that the mask is its friend---i.e. that the mask fixes the breathing problems, then one part of your sleep anxiety should start to dissipate with time. But in my humble opinion, there's a lot going on that's feeding your sleep onset insomnia. And you're going to have to tackle all the causes before you get to where you can sleep more comfortably all night long.

Finally, Pugsy tells me that you are self-treating on the CPAP. Are you currently seeing a psychiatrist for any reason? If so, have you mentioned that you strongly suspect that you have OSA because your husband has witnessed scary apnea episodes?

robysue wrote:Did these events occur BEFORE starting PAP or after starting PAP?

Nothing like this has ever happened since I have been using xPAP. All occurred before. Yes, my machine is doing it's job. In fact, some nights when I am really tempted to just go to sleep without the mask, I am actually feeling afraid not to use it and I resist that temptation.

robysue wrote:As to whether your fear/anxiety of going to sleep might be rooted in the history of scary apnea events rather than childhood trauma, I don't think it's an "either/or", but rather a "both/and" situation. If something really frightening happened in childhood that lead to psychological problems in general, it's reasonable to assume that sleep could/would be affected. But untreated OSA is known to be a cause for insomnia that just doesn't respond to standard treatments for insomnia. (See the second half of Sound Sleep, Sound Mind for a discussion of this phenomena. Dr. Park's Sleep Interrupted also discusses the connection between untreated OSA and insomnia as I recall.)

Yes, absolutely right. I remember both those discussions in Sound Sleep, Sound Mind and Sleep Interrupted.

robysue wrote:So my best guess is that your excessively long sleep latency is being caused by both your limbic brain's fear of sleep (because sleep is associated with nasty breathing problems) and some continuing residual anxiety/fear from the childhood trauma that may only be there at an almost unconscious level. And my guess is that the two sources of fear/anxiety feed off each other, making a bad situation even worse in terms of the sleep onset insomnia.

Yes, I agree with you that this is absolutely what is going on. It will probably take me much longer than normal to get things sorted out, given my history. I had not thought of that.

robysue wrote:Given the scary severity of the worst of your pre-CPAP apnea episodes, I'd say that it is critical that you find a way to stick it out with xPAP therapy.

Seriously: Without xPAP your sleep anxiety is likely to grow WORSE not better. Particularly since you are now keenly aware of just how bad your apnea episodes can be.

Believe me, I get that. I am not even thinking of giving it up. My husband and I were just talking the other day about how much better off I am without those horrible symptoms I used to wake up with, sometimes in the middle of the night. If that is all it ever did for me, It would be worth it.

robysue wrote:Having said that, I'll add this: If the psychiatrists who have treated you for issues related to the childhood trauma were not also board certified in sleep medicine, they may very well not have been fully aware of how serious untreated OSA can be. And if you don't happen to fit into the standard OSA stereotype of being severely overweight with a history of very loud snoring, the fact that you're female means that they may not have even considered the possibility that you have OSA: OSA is under diagnosed to begin with and there are a lot of docs out there who seem to believe that the only people at risk of OSA are obese with large necks, and if you happen to be a normal weight female with a normal sized neck and sleep problems, many docs will look for all kinds of causes before they think that untreated OSA maybe a significant contributing factor to the bad sleep problems.

I'll add this: xPAP treats the OSA, but it only treats the OSA. In other words, if you can find a way to train the limbic brain to accept that the mask is its friend---i.e. that the mask fixes the breathing problems, then one part of your sleep anxiety should start to dissipate with time. But in my humble opinion, there's a lot going on that's feeding your sleep onset insomnia. And you're going to have to tackle all the causes before you get to where you can sleep more comfortably all night long.

My Psychiatrist nor any other doctor who ever treated me ever thought in their wildest dreams that I might have sleep apnea. In fact several of the drugs they tried out on me were making my sleep apnea massively worse. When I refused to continue taking them, some of the doctors thought I was being difficult. I never suspected it until I read Dr. Park's book. My husband laughed at me the first time I told him I thought I might have it.

I know I need to work hard on the insomnia, but now, living here, I have no way to get much help other than online. But I belong to another forum that deals with somatic/psychological issues, so they can help me.

robysue wrote:Finally, Pugsy tells me that you are self-treating on the CPAP. Are you currently seeing a psychiatrist for any reason? If so, have you mentioned that you strongly suspect that you have OSA because your husband has witnessed scary apnea episodes?

No, I am not seeing a Psychiatrist anymore. The one I've described treated me for almost 20 years. For the last 15 years before we moved to Panama, I only needed to see him for medication checks. He was the one prescribing the Perphenazine. My husband wanted me to stop taking it because the side effects were building up. This was around the time the choking started and the unexplained reflux. He felt the medicine was contributing to these weird symptoms. I agreed.

PEF wrote:Thanks, 49er. I spent the last hour reading the excerpts from this book. I can really relate to this. 1. the total frustration with professionals
2. CBT - this worked marvelously well for me to treat the depression I experienced after my husband died. Once I realized that I was depressed because I was thinking depressing thoughts without realizing it was effecting my mood, I began to watch for those thoughts and openly challenging them. Once I "got" it, I made a really rapid recovery. It worked so well and was so simple. However CBT for insomnia has never worked for me. I have tried it over and over, if fact, I actually think the effort makes it worse.

CBT for Insomnia can include a lot of different things. Which things in particular did you try? And how did it make things worse?

it to say that CBT requires a "rational mind". Not all parts of our brains are rational, for example the LIMBIC part of the brain, which is mainly concerned with safety and survival. Somehow, during my childhood trauma, my limbic brain decided "sleeping is not a SAFE activity". This probably happened during my 3 weeks spent in the hospital when I was about 3 years old. You cannot give an irrational part of the mind a rational protocol and expect that it will work. This is the Psychiatrist who gave me the low dose of Perphenazine. This probably "turned off' that thing that disallowed sleep. I took this an hour before bedtime and puff - sleep anxiety GONE.

So the key may be to figure out a way to deal with the sleep anxiety in a positive, nonpharmaceutical way.

In fact I worked with a really good spiritualist on this, after I had to stop taking this drug because of side effects. The "root" chakra is thought to correspond to this "limbic brain". So we did many exercises to strengthen this chakra. I won't go into a long thing, but suffice it to say that I was only partially successful with this line of attack. I still do use it and often play chakra meditation tapes when I have some of my worst times.

Have you ever considered using the chakra mediation tapes as one tool for teaching your mind, limbic brain, and body that it's ok to turn off the "thing that disallowed sleep"?

Out of pure curiosity: What do you think would happen if you meditated for 15-20 minutes about an hour before you went to bed?

I know I need to work hard on the insomnia, but now, living here, I have no way to get much help other than online. But I belong to another forum that deals with somatic/psychological issues, so they can help me.

Have you figured out what you want to keep track of in your sleep log?

My own advice is to have the sleep log focus on the NON-CPAP things: Level of sleep anxiety at bedtime is probably much more important variable to track than AHI or RDI for example.

Re: Why have prescription maximums (at least initially)?

My oversimplification of the answer:

I believe that the reason some docs set a conservative max for a new APAP user is in order to keep use of the machine as comfortable as possible at first, since higher pressures may be disconcerting to some PAP users when first starting out.

I believe this is sometimes a useful strategy, but that it backfires at times when a patient needs higher pressure for effective treatment at some points during the night, and not getting sufficiently effective treatment prevents the patient from seeing the full benefits of the treatment right away.

Solution to that catch-22? Patient education, software, cpaptalk, Pugsy, robysue, etc . . .

robysue wrote:CBT for Insomnia can include a lot of different things. Which things in particular did you try? And how did it make things worse?

It is hard to give a specific answer to this because I tried so many approaches over the years, most of my life. I have had serious insomnia back as far as I can remember, which is about 3 years old. I do remember several approaches that did make me suffer more and would probably be considered CBT approaches, "sleep deprivation", "avoidance of napping", "forcing myself to go to bed and get up the same time each day". I could go into long explanations about what happened, but the upshot of all these approaches is that they always resulted in less quality sleep and massive increases in anxiety. For example, I would feel dead tired during the day and avoid a short nap expecting that I would have less trouble getting to sleep went I went to bed. Then I was so over-tired at night that the sleep latency insomnia would get worse. These approaches would get me into dangerous episodes where I was not able to sleep at all and needed emergency medications. I need to grab sleep wherever and whenever I can get it. I don't sleep well when I have a sleep deficit (over-tired) or when I just am not really tired. And segmented sleep does me just as much good as continuous sleep.

While I am on this subject, I wanted to say something about "segmented sleep". It is pretty much taken as gospel on this forum that segmented sleep is always low-quality sleep. I don't believe this and I am not alone. There is a line of research I have been following that has discovered how our European ancestors slept during the middle ages before electricity. Most people during that time slept in a pattern that was most natural to them, going to bed after dinner, right after dark, and sleeping for 3 to 6 hours, then getting up and engaging in quiet activities like games, conversation, sex, eating, etc. Then back to bed after 2 to 4 hours of being awake, for 3 to 5 more hours. By all accounts, this pattern seemed to work for them. In fact, my husband has often experimented with this approach and it seems to work well for him, when time and circumstances permit. I belong to a forum of people who have somatic issues and a lot of them have had great success with this approach to insomnia. But I do prefer to sleep in one continuous cycle.

robysue wrote:So the key may be to figure out a way to deal with the sleep anxiety in a positive, nonpharmaceutical way.

YES, absolutely and that is what I have been working for half my life. xPap therapy is a big part of that. I wish I had known about it much sooner.

robysue wrote:Have you ever considered using the chakra mediation tapes as one tool for teaching your mind, limbic brain, and body that it's ok to turn off the "thing that disallowed sleep"?

Out of pure curiosity: What do you think would happen if you meditated for 15-20 minutes about an hour before you went to bed?

Absolutely. I spent a lot of time, several years with the spiritual approach. I actually believe that my insomnia is a spiritual problem, not really a psychological one. Spiritual advisers, not therapists, have been much more help to me.

I actually have a nighttime routine, which i have not focused on recently because of starting xPAP. I planned to blend it in once my xPAP therapy was more under control and less anxiety provoking. However, at times xPAP has become very anxiety provoking, perhaps not necessarily so. It occurs to me that I have been spending too much time and upset on the xPAP, becoming too obsessed with it. About 4 nights ago, you made me realize I was doing this and now I don't think at all about the machine when I go to bed. I don't care if the mask leaks. All that I care about right now is that it at least stays on all night. And, while still not great, I have slept better already NOT worrying about the machine.

Here is the essence of my "routine":

Right before bed:

1. Sit quietly and try to clear and quiet my mind. I am not always terribly successful with this, but do it as best I can. When I have difficulty, I read one of several chakra mediations that are extremely calming.

2. Write out the "Close-out of my day". This involves writing down most of what is on my mind, worries, fears, plans for the next day. Issues that went unresolved that day that I may be anxious about, etc. Sometimes it ends up being a rant. But by the time I am done, I feel either calmed or just exhausted. At the end, I thank my mind for telling me all that, but that I need to sleep now and I do not have to think about any of that until morning.

3. Going to bed: get my xPAP stuff done. This is potentially anxiety-provoking, but the last 3 nights, I don't even get into thinking anything about the machine or mask. This is something I need to be continuously vigilant about.

4. Get into bed. This is where the rubber meets the road. Once in bed, I do a practiced meditation that addresses my "root chakra" issue specifically at my most vulnerable moment, just when I am about to give up my consciousness to the dark, scary recesses of "sleep". Can I do it tonight? My mind often begins to race uncontrollably and I may have a mini panic attach or mini hot flash. I don't JUDGE the momentary upset (probably flack from my limbic brain), but just do the meditation over again until I feel cool and calm.

The narrative of the meditation involves going over how "SAFE" I am, all the things that ensure that I am safe. The main feature of the visual part is that of a very large wolf-like animal with large glowing red eyes that anyone would be afraid of. This is my spiritual protector. This was all designed by myself and a spiritual adviser that I saw while living in Boquete, Panama about 10 years ago. It was kind of a wild West town with a lot of petty crime and home invasions. I often had to stay alone in a large 3 family condo that had been the victim of home invasions several times. This visualization still works well for me, but we have moved to a large beach property.

5. Anyway, I have not been doing much of this lately and need to get back to it and let it work it's magic. It is difficult and I don't often feel like doing it at night.

6. I also have spiritual flash cards and many chakra meditation tapes I can put on for when I am having lots of trouble sleeping.

robysue wrote:Have you figured out what you want to keep track of in your sleep log?

My own advice is to have the sleep log focus on the NON-CPAP things: Level of sleep anxiety at bedtime is probably much more important variable to track than AHI or RDI for example.

Yes, sleep log includes:

Time to bed the first time. This is the last time I look at the clock until morning. I get times from Sleepyhead data in the morning.
number of times I took 1/4 pill of Ambien
number of times I got up and what I did
what time it was when I stopped eating and what I ate last (as well as general notes about my pattern of eating that night).
my general anxiety level on a scale of 1 to 5

In the morning I make notes about my Sleepyhead data. Fill in the times,etc.

One thing that is so far standing out in the data is that I seem to feel generally better the next day when my AHI is a little higher and I have more large leaks. I do have some ideas about why this is so. Remember, I am using the Resmed now exclusively.

Need a break!

PEF wrote:

robysue wrote:CBT for Insomnia can include a lot of different things. Which things in particular did you try? And how did it make things worse?

It is hard to give a specific answer to this because I tried so many approaches over the years, most of my life. I have had serious insomnia back as far as I can remember, which is about 3 years old. I do remember several approaches that did make me suffer more and would probably be considered CBT approaches, "sleep deprivation", "avoidance of napping", "forcing myself to go to bed and get up the same time each day". I could go into long explanations about what happened,

I don't need the long explanations.

My guess is that the kind of CBT that might do you some good would be CBT focusing on teaching yourself the lesson: Don't worry so much about the sleep.

In other words, what might help with the subjective quality of your sleep is focusing on what kinds of things you can actually do that reduce your sleep anxiety. It may be that one of the best things you can do is to get out of bed when you're starting to get anxious, and go do something elsewhere---like listening to the ocean---for as long as you want to before going back to bed.

It could be that you also need to have a bedtime routine that focuses almost exclusively on relaxation and meditation to reduce anxiety. And to say, to heck with what time you choose to start the bedtime routine on any given night. As an idea: You've mentioned that you sometimes listen to the ocean in the middle of the night when you can't sleep. What about spending an hour before you even think about going to bed sitting out on your porch listening to the ocean?

While I am on this subject, I wanted to say something about "segmented sleep". It is pretty much taken as gospel on this forum that segmented sleep is always low-quality sleep.

Segmented sleep is different from fragmented sleep.

I don't believe this and I am not alone. There is a line of research I have been following that has discovered how our European ancestors slept during the middle ages before electricity. Most people during that time slept in a pattern that was most natural to them, going to bed after dinner, right after dark, and sleeping for 3 to 6 hours, then getting up and engaging in quiet activities like games, conversation, sex, eating, etc. Then back to bed after 2 to 4 hours of being awake, for 3 to 5 more hours. By all accounts, this pattern seemed to work for them. In fact, my husband has often experimented with this approach and it seems to work well for him, when time and circumstances permit.

This is often called two phase sleep and you are correct, for many people the natural sleep pattern is two phase sleep and if you wake up feeling decent when you get two phase sleep, then that's great and there's no need to even think about changing it. My own hubby is increasingly showing signs that his body wants two phase sleep. He's happy with it. I'm happy with it. He feels fine when he gets up in the middle of the night and gets some things done that he wants to get done. He comes back to bed, falls asleep quickly, and sleeps until morning. And wakes up feeling rested and refreshed.

But fragmented sleep is something else entirely, and the question is whether you are dealing with fragmented sleep. What I mean by fragmented sleep is the inability to stay asleep long enough to complete a full sleep cycle. If you wake up every 90 minutes or so, your sleep is not actually too fragmented since most sleep cycles last about 90 minutes. But if you wind up having large chunks of time where you are waking up every 40-60 minutes, then that's not enough time to get a full sleep cycle in, and that kind of frequent awakening in the night can play havoc with how you feel during the daytime OR during the period of the night between your two natural sleep phases. Likewise if you spend a lot of time lying in bed fighting for sleep, sleeping for 10-20 minutes, then waking back up and then dozing lightly for another 10-20 minutes, and this wake-light sleep-wake-light sleep pattern goes on for several hours, then you may have a real problem getting stuck in Stage 1 (very light/transitional) sleep. In a person with normal sleep architecture the time in Stage 1 sleep is very short----like 5% of the whole night. Stage 2 sleep is still "light" sleep, but it is not "transitional". In other words, Stage 2 sleep is a stable sleep stage, whereas Stage 1 is not. And Stage 2 sleep is deep enough to be restorative; in a person with normal sleep architecture, roughly 50-70% of the night is spent in Stage 2 sleep.

I belong to a forum of people who have somatic issues and a lot of them have had great success with this approach to insomnia. But I do prefer to sleep in one continuous cycle.

Yes, a lot of people with insomnia find two phase sleep the "answer" to their sleep problems because their problem is not actually insomnia but rather their initial insistence that they needed to get 8 hours of continuous sleep. Once they finally accept that their particular bodies want (even crave) two phase sleep, they start to sleep better in both phases because they are no longer worrying about the fact that they're up in the middle of the night. Instead, they're getting up out of bed and doing something they enjoy doing. And going back to bed when their body says it's time to start phase two of the sleep.

Which brings me to a second idea from CBT-Insomnia that may be worth pursuing for you: Sometimes the best thing you can do to "treat" the insomnia is to listen to your body and give it what it wants. In other words, don't try to shoehorn your sleep into an arbitrary definition of "good sleep". Once you find a way of sleeping that lets you wake up more rested than when you went to bed, allow yourself the privilege of not worrying about the sleep.

robysue wrote:Have you ever considered using the chakra mediation tapes as one tool for teaching your mind, limbic brain, and body that it's ok to turn off the "thing that disallowed sleep"?

Out of pure curiosity: What do you think would happen if you meditated for 15-20 minutes about an hour before you went to bed?

Absolutely. I spent a lot of time, several years with the spiritual approach. I actually believe that my insomnia is a spiritual problem, not really a psychological one. Spiritual advisers, not therapists, have been much more help to me.

Keep working on this approach. But at the same time ask for help in figuring out concrete suggestions on how to deal with the sleep anxiety when it is severe enough to prevent you from getting the sleep you need to get.

I actually have a nighttime routine, which i have not focused on recently because of starting xPAP. I planned to blend it in once my xPAP therapy was more under control and less anxiety provoking. However, at times xPAP has become very anxiety provoking, perhaps not necessarily so. It occurs to me that I have been spending too much time and upset on the xPAP, becoming too obsessed with it. About 4 nights ago, you made me realize I was doing this and now I don't think at all about the machine when I go to bed. I don't care if the mask leaks. All that I care about right now is that it at least stays on all night. And, while still not great, I have slept better already NOT worrying about the machine.

I personally think this is the RIGHT direction. I'll write more later.

Some comments I wrote before I saw that robysue had gotten back to you:

PEF wrote: . . . I need to grab sleep wherever and whenever I can get it. . . . And segmented sleep does me just as much good as continuous sleep. While I am on this subject, I wanted to say something about "segmented sleep". It is pretty much taken as gospel on this forum that segmented sleep is always low-quality sleep. I don't believe this and I am not alone. . . . But I do prefer to sleep in one continuous cycle. . . .

I don't believe that the best professionals in the sleep biz have any preference for when people get their sleep, as long as people get enough of all the stages. However, social and economic considerations dictate that for some people the "consolidation" of sleep timing into one eight (or so) hour period becomes a necessity for them that ends up having to be addressed by medical professionals, and that is why that form of "consolidation of sleep" is often spoken of as an important goal, since it is for so many. That does NOT mean that the people without the economic and social considerations are getting "bad" sleep if they choose, or are happy with, getting sleep a few hours at a time throughout the 24-hour period. In other words, if it is your preference to sleep in one continuous "cycle," as you state above, then a doc, or forum member, will likely address that as a medical or therapeutic goal, since it is a goal you are asking for as being important to you. However, if you state that you don't mind several shorter periods of sleep, and it isn't hampering you socially or economically when you get sleep that way, then the amount of time you sleep at a stretch (within reason) should be considered a nonissue by those trying to help you get enough good sleep to be healthy and feel good.

PEF wrote: . . . One thing that is so far standing out in the data is that I seem to feel generally better the next day when my AHI is a little higher and I have more large leaks. . . .

In my opinion, that is sometimes the case because the most refreshing forms of sleep can contain the most events. But, on the other hand, sometimes that is the case because bad sleep itself can have a sedative effect that some find calming in the short term. And that is one reason why keeping a journal that reveals long-term trends can be so helpful in differentiating which may be the case for you. Some actually self-treat anxiety by (somewhat) intentionally sabotaging their own sleep in order to feel better. Some research pros even hypothesize that the damage to sleep done by some drugs is part of what makes the drugs calming. I have no idea if that is the case in reality, but I still consider it useful information for someone interpreting his or her own journal and trying to make sense of when he or she feels better or worse--because those kinds of possibilities can be quite counter-intuitive when trying to figure things out.

I am not a pro, so take the above with a shaker of salt. I may have no idea what I'm talking about. And I welcome any correction to my statements from robysue or others.

-jnk

Very interesting, jnk, thanks!

Pugsy wrote:The maximum setting is really not that big of a deal if the machine never goes there...If your max is set at 12 but you never go past 10 the maximum becomes a moot point. You could set it to 20 and it still wouldn't go past 12.
Just because a machine can go somewhere doesn't mean that it will go there. Heck...if the machine could go to 100 and it never went past 10...it wouldn't matter what the machine was set at.

The maximum setting itself doesn't change anything about how the machine responds unless you reach the max and it wants to go higher but can't.

Now sometimes going higher creates problems...aerophagia, bloating, big changes disturb sleep maybe...or sometimes in rare situations central apneas pop up but most of the time when people get centrals with cpap pressure it's going to happen at any pressure and not just higher pressures. I see pressures over 20 almost every night and I have never had centrals develop because of higher pressures....and I have seen people with a truckload of centrals develop with as little as 6 cm pressure. The ones that do actually develop centrals because of a higher pressure and there's a definite line where above causes centrals and maybe one cm below doesn't...those situations are relatively rare.

Whether you want to limit the max or not...if you don't ever reach it...it doesn't matter what you do with it.
If the changing pressures themselves don't disturb your sleep...it doesn't matter what you do with it.
If you don't blow up like a puffer fish and have a lot of bloating or pain from air in the gut...it doesn't matter what you do with it.
If you don't see many centrals (a few are normal so don't panic if you see them)...it doesn't matter what you do with the max.

As you have already figured out...it's the minimum baseline pressure that is the post critical pressure..it's used to hold the airway open decently for the bulk of the time and allowing the machine to go higher for times where the minimum can't hold it open (supine sleeping, or REM sleep or whatever).

My. Pressure on inhale is 8 to 12. And exhale (Bipap) is 6 to 10....i reach 12 and 10 every night once or twice.... Should I broaden range?

Ruinednose wrote:My. Pressure on inhale is 8 to 12. And exhale (Bipap) is 6 to 10....i reach 12 and 10 every night once or twice.... Should I broaden range?

Dunno. A lot depends on how long you stay at the maximum and what your goals are and would allowing the machine to go higher cause any issues (aerophagia,etc).
It hurts nothing to use a tight range though.

PEF wrote: Here is the essence of my "routine":

Right before bed:

1. Sit quietly and try to clear and quiet my mind. I am not always terribly successful with this, but do it as best I can. When I have difficulty, I read one of several chakra mediations that are extremely calming.

I'd suggest reading one of the chakra mediations even when you are NOT having any difficulty with trying to clear and quiet your mind. In other words, if something helps when you are having a lot of trouble, it may help even when you don't think there's a lot of trouble.

2. Write out the "Close-out of my day". This involves writing down most of what is on my mind, worries, fears, plans for the next day. Issues that went unresolved that day that I may be anxious about, etc. Sometimes it ends up being a rant. But by the time I am done, I feel either calmed or just exhausted. At the end, I thank my mind for telling me all that, but that I need to sleep now and I do not have to think about any of that until morning.

I'd suggest writing the "Close-out of my day" stuff before you sit quietly and clear your mind and read the chakra meditation. In other words, get the worries, fears, plans and ranting out of the way. And then sit quietly and work on clearing the mind by always reading one or more of the chakra meditations.

3. Going to bed: get my xPAP stuff done. This is potentially anxiety-provoking, but the last 3 nights, I don't even get into thinking anything about the machine or mask. This is something I need to be continuously vigilant about.

Back when I was dealing with my anger issues I learned to do all the "CPAP stuff" at supper time. As in I filled up the humidifier and put everything together at supper time. So that I could forget about it all. When I went to bed the only CPAP thing I had to do was put the mask on. By getting the CPAP stuff done well before the natural end of my day, it made it much easier for me to not stress out about the need to deal with the CPAP stuff right at bedtime.

4. Get into bed. This is where the rubber meets the road. Once in bed, I do a practiced meditation that addresses my "root chakra" issue specifically at my most vulnerable moment, just when I am about to give up my consciousness to the dark, scary recesses of "sleep". Can I do it tonight? My mind often begins to race uncontrollably and I may have a mini panic attach or mini hot flash. I don't JUDGE the momentary upset (probably flack from my limbic brain), but just do the meditation over again until I feel cool and calm.

This is a VERY positive way to address many of your issues.

The narrative of the meditation involves going over how "SAFE" I am, all the things that ensure that I am safe. The main feature of the visual part is that of a very large wolf-like animal with large glowing red eyes that anyone would be afraid of. This is my spiritual protector. This was all designed by myself and a spiritual adviser that I saw while living in Boquete, Panama about 10 years ago. It was kind of a wild West town with a lot of petty crime and home invasions. I often had to stay alone in a large 3 family condo that had been the victim of home invasions several times. This visualization still works well for me, but we have moved to a large beach property.

Again, this is comforting to YOU. And that's the only thing that is important!

5. Anyway, I have not been doing much of this lately and need to get back to it and let it work it's magic. It is difficult and I don't often feel like doing it at night.

My guess is that you have NOT been doing this very positive bedtime routine because you've been too busy worrying about the CPAP therapy and whether it's working (and it IS working) and whether there's just one more little tweak that you could just do that would "fix" a whole lot of the issues.

And I think the answer is staring you in the face: Get back into doing this bedtime routine. I think that the bedtime routine for you has all of the CBT-Insomnia that you need for managing your sleep anxiety problems. Add to the meditation and/or visualization that the CPAP is your friend: Visualize the idea that should your airway start to collapse, your CPAP-friend will come to your rescue by increasing the pressure in a gentle, friendly way.

6. I also have spiritual flash cards and many chakra meditation tapes I can put on for when I am having lots of trouble sleeping.

I would suggest that for the next two weeks listen to the chakra meditation tapes when you first go to bed. In other words, use them proactively instead of reactiveley. If they can take the edge off things when you are having lots of trouble sleeping, they may help prevent some nights from becoming "bad nights" if you put the tapes on at bedtime regardless of whether you feel anxious or not.

Pugsy wrote:

Ruinednose wrote:My. Pressure on inhale is 8 to 12. And exhale (Bipap) is 6 to 10....i reach 12 and 10 every night once or twice.... Should I broaden range?

Dunno. A lot depends on how long you stay at the maximum and what your goals are and would allowing the machine to go higher cause any issues (aerophagia,etc).
It hurts nothing to use a tight range though.

What do you recommend for range. If I post my in depth SH info would that help to determine? Goal to is to get overall optimal therapy

PEF wrote:

robysue wrote:Have you figured out what you want to keep track of in your sleep log?

My own advice is to have the sleep log focus on the NON-CPAP things: Level of sleep anxiety at bedtime is probably much more important variable to track than AHI or RDI for example.

Yes, sleep log includes:

Time to bed the first time. This is the last time I look at the clock until morning. I get times from Sleepyhead data in the morning.
number of times I took 1/4 pill of Ambien
number of times I got up and what I did
what time it was when I stopped eating and what I ate last (as well as general notes about my pattern of eating that night).
my general anxiety level on a scale of 1 to 5

In the morning I make notes about my Sleepyhead data. Fill in the times,etc.

I would add one more thing that's a simple Yes/No question: Did I meditate at bedtime?

One thing that is so far standing out in the data is that I seem to feel generally better the next day when my AHI is a little higher and I have more large leaks. I do have some ideas about why this is so. Remember, I am using the Resmed now exclusively.

Jnk wrote an excellent post about this comment. Re-read it because it's worth re-reading.

I will add: I have learned that for me, I often feel better with an AHI that's between 2 and 3 than I do with an AHI that's below 1. And for me the reason is pretty clear: The days were I have my lowest AHI are often (not always) the days where I have the most middle of the night wakes; the most very short PAP sessions---as in lots of sessions that last less than an hour; and the hardest time falling asleep at the beginning of the night.

In other words, if all the other aspects of my sleep are good-to-very-good, I'm likely to actually be asleep deep enough to have some events scored. If the other aspects of my sleep are not very good, then I may simply be sleeping too lightly for a lot of events to be scored.