Sleep-onset insomnia

PEF wrote:I have been reading some research that Dr. Krakow has been doing on xPAP and sleep onset insomnia. I have a strong feeling that what he describes is the REAL reason for my severe sleep onset insomnia. This is because, although with my new sleep routine, it has improved, but that has happened many times before. Sooner or later my sleep onset insomnia will return, it always does. I have been aware for the last 10 years or so that I am really afraid to fall asleep. But I was never able to figure out why. I have used many protocols to overcome this fear involving sleeping pills, meditations, relaxation techniques. But they always fail eventually. The severe anxiety always comes back. I believe this is because my brain knows it is in fact dangerous for me to fall asleep. It also knows that my machine is not protecting me.

And we're back to this: Why do you think your machine is not protecting you?

And: What data would convince you that your machine is doing its job of protecting you?

And: Is it possible that your brain has not yet totally accepted the idea that your machine is doing its job and that the machine IS protecting you when you are asleep?

Because here's the thing: If your conscious mind has decided that your machine is not capable of protecting your body from UARS, then your unconscious mind is going to have a very tough time learning to trust the machine enough to not wake up/arouse frequently out of fear that something bad might be happening---even though all the data you've posted indicates that your machine does a good job of protecting you from the flow limitations and RERAs that mark untreated or under treated UARS.

I have come to the following conclusions about my therapy:

1. Although I feel slightly better, it has been a failure.
2. I need much higher pressure but cannot tolerate it.
3. I believe that, if my xPAP therapy was successfully addressed, it may actually cure my sleep-onset insomnia.
4. My sleep-onset insomnia is directly CAUSED by my OSA/UARS.
5. My machine is not addressing my UARS. These machines are not designed for that.

Again, what is your evidence that your current machine is not addressing your UARS? What machine do you think you would need to address UARS?

Please understand me: I do think that Dr. Krakow's Sound Sleep, Sound Mind is a worth while book. But his theories about treating UARS with have not been adequately tested and there are many in the sleep medicine community who disagree with him on UARS. Indeed, the real problem right now with UARS is that there is a whole lot of disagreement within the sleep medicine community about the definition of UARS, the proper way to diagnose UARS, and the proper way(s) to treat UARS.

Treatment of upper airway resistance syndrome in adults: Where do we stand? is an interesting peer reviewed article published in 2015; it gives a good account of just how messy the whole situation concerning UARS is. The upshot seems to be that most sleep doctors now do recognize UARS as a form of sleep disordered breathing. CPAP is the most widely studied treatment for UARS, but UARS patients appear to have more problems with becoming and staying compliant with CPAP. Why this is so needs to be investigated, but anecdotally UARS patients seem to see less immediate relief of symptoms than moderate-to-severe OSA patients, and that fact may make it more difficult for UARS patients to become and stay compliant with PAP therapy. But the study also states that "there are no randomized controlled trials evaluating this type of treatment (CPAP) in UARS patients" so no one really knows whether CPAP (or xPAP) can be scientifically demonstrated to be effective in treating the symptoms of UARS.

During the times when my sleep-onset insomnia is improved, all that happens is that I develop the fragmented sleep type that wakes me up often during the night. That is what I have now.

The question becomes: Is the fragmented sleep from untreated/under treated UARS? Or is the fragmented sleep caused by the sensory stimuli coming directly from the PAP therapy rather than untreated/under treated UARS? Or something else?

It is interesting to note that in Treatment of upper airway resistance syndrome in adults: Where do we stand? the authors mention prescription sleep medication that can consolidate sleep might be a useful adjuvant therapy in treating UARS patients with fragmented sleep while on CPAP. Oral appliances may also be a effective way to treat UARS, but again, there don't seem to be any studies that verify that idea scientifically.

Robysue, thanks for responding. I really appreciate all of your time. Your advice on how to conquer the sleep onset insomnia helped a lot. And not worrying at all what my mask or machine will or won't do when I go to bed helps a lot. So I did make really good progress for about 3 weeks. I was waking up refreshed, getting enough sleep and letting myself sleep in when I needed to. This has all been very well.

However, my progress has been negatively impacted by the return of the LPRD (reflux into the throat, respiratory system) that I had before I started xPAP. So while I was getting refreshing sleep, I was also sleeping a lot deeper than normal. I have been to several doctors for the reflux in the past. They never could find a cause for it and more than one thought it was psychosomatic. Several rounds of acid-suppressing medicine never had any effect at all. After reading Dr. Park's book, I decided to try xPAP because these symptoms were making my sleep difficult. For me at least,there seems to be a connection between deep sleep and reflux. Dr. Park explains how that happens in his articles about UARS. I am quite fearful of these symptoms because I have so much trouble with them in the past. So a new source of anxiety crept in. So now the sleep-onset insomnia is back. But, because I am allowing myself to sleep later, it has not been too bad. So I can deal with it for now.

Regarding my machine, I believe it is helping me with these symptoms when I am in lighter stages of sleep, but when I sleep deeply, I am still experiencing some reflux that happen in discrete episodes during the night. But these episodes leave stomach contents in my throat that may be causing spontaneuos arouals later. I often go to bed fine, sleep deeply and then awaken with reflux in my throat causing a sore throat. This is greatly improved since starting xPAP, but not entirely.

More answers in next post.

robysue wrote:And we're back to this: Why do you think your machine is not protecting you?

And: What data would convince you that your machine is doing its job of protecting you?

Yes, I am back to that because I think I may be having some sort of episodes, specifically FL's or RERA's that cause pressure to build in my esophagus that suctions up acid from my stomach. The Dr. Park literature describes how this happens.

It is not so much a question of data, as it is about unpleasant symptoms that may be caused by my SDB. However, I would like to see my pressure not hugging the tip of the graph and less activity on my FL graph.

robysue wrote:And: Is it possible that your brain has not yet totally accepted the idea that your machine is doing its job and that the machine IS protecting you when you are asleep?

Because here's the thing: If your conscious mind has decided that your machine is not capable of protecting your body from UARS, then your unconscious mind is going to have a very tough time learning to trust the machine enough to not wake up/arouse frequently out of fear that something bad might be happening---even though all the data you've posted indicates that your machine does a good job of protecting you from the flow limitations and RERAs that mark untreated or under treated UARS.

Yes I think so. I have doubts. The symptoms of reflux I have during deep sleep have convinced me that my machine only protects me from these events when I am not sleeping too deeply. See, when I am not experiencing insomnia, I sleep deeply and have reflux at night. When I am experiencing insomnia and not getting refreshing sleep, I usually do not have reflux during those times. I am concerned about the untreated FL's and RERA's (on the PR machine)

One of the things Dr. Park always says is that there is a big difference between OSA and UARS. People with OSA get an obstruction, then an apnea, then an arousal. Their brains respond too slow to stop the event and prevent the arousal. However people with UARS, who have trigger happy nervous systems, tend to have an event like an FL, and then an arousal. No actual apnea. But the real problem for a UARS sufferer may be that their brains react too fast to an event or the threat of an event. In my case, if this happens, my brain is creating pressure in my esophagus to get the breath, causing the reflux event. So the real problem here may be that my brain is over-responding to breathing events. The question is "How do I prevent my brain from reacting to trivial events so that I don't end up with reflux in my throat. I know that Dr. Krakow wants FL's, as well as hypoapneas and apneas titrated out in UARS patients. He also seems to think that simply FL's can cause fragmentation of sleep architecture in people with UARS.

There is definitely something crazy going on at times when I am in deep sleep. My theory is that it may be able to be resolved by higher pressure. And, by the way, you were also right about trying to use CPAP mode, fixed pressure. This is preventing a lot of wakes in just 3 days. I am now running 7.8 to 8.0., very close to straight CPAP. I suppose it is possible a bilevel or ASV might work better, but I don't know that yet. I want to try higher pressure first and see how that goes.

robysue wrote:Please understand me: I do think that Dr. Krakow's Sound Sleep, Sound Mind is a worth while book. But his theories about treating UARS with have not been adequately tested and there are many in the sleep medicine community who disagree with him on UARS. Indeed, the real problem right now with UARS is that there is a whole lot of disagreement within the sleep medicine community about the definition of UARS, the proper way to diagnose UARS, and the proper way(s) to treat UARS.

Treatment of upper airway resistance syndrome in adults: Where do we stand? is an interesting peer reviewed article published in 2015; it gives a good account of just how messy the whole situation concerning UARS is. The upshot seems to be that most sleep doctors now do recognize UARS as a form of sleep disordered breathing. CPAP is the most widely studied treatment for UARS, but UARS patients appear to have more problems with becoming and staying compliant with CPAP. Why this is so needs to be investigated, but anecdotally UARS patients seem to see less immediate relief of symptoms than moderate-to-severe OSA patients, and that fact may make it more difficult for UARS patients to become and stay compliant with PAP therapy. But the study also states that "there are no randomized controlled trials evaluating this type of treatment (CPAP) in UARS patients" so no one really knows whether CPAP (or xPAP) can be scientifically demonstrated to be effective in treating the symptoms of UARS.

Yes, I have read this too. I can see a lot of reasons why UARS patients would have a lot more trouble with CPAP. I think their brains are the problem. They overreact to everything. For example, FL's may not matter to a person with OSA because it is very unlikely their brain will react to them. But for one with UARS, the hair-trigger brain my be beating the machine to the punch and have it's own ideas of what needs to be done. This may be why I end up with pressure in my chest and reflex in my throat in response to FL's. UARS patients have a whole bunch of complicating variables.

Anyway, just my ideas and some things I have read. I will continue xPAP, no problem there. However, I feel I need to experiment with slowly rising pressure until I see some wiggle room on my pressure graphs. I would also like to see less activity on my FL charts. maybe down the road, I will try a bilevel, however, I have no problem with exhalation against the machine. But based on the way I feel, I really hope there is more improvement in my story later on.

Thanks so much for all your help!!

PEF wrote:maybe down the road, I will try a bilevel

EPR on a ResMed machine will give what we call call a poor man's bilevel. It's not "exactly" like a bilevel but for all practical purposes it functions and feels like one with maybe just the tiniest bit of difference being on the timing. I tried it and EPR at 3 in cpap mode feels almost identical to PS of 3 in fixed bilevel mode.
It is of course limited to 3 cm pressure support and real bilevel machines can offer much more pressure support past 3 cm but playing with EPR of 3 might give you an idea if pressure support helps you or not.

Have you ever played with EPR to see if using EPR will let you maybe use the higher pressures needed to better deal with the FLs?

Hi Pugsy,

Yes, I did play with EPR on my Resmed S9 about 6 months ago when I was only using very low pressure just to get used to sleeping with the machine. I had read over and over that many newbies were bothered at first by trying to exhale against the pressure and it was recommended to use EPR to get some relief on exhale. So at one point, I set EPR to 3, but I was only using pressures of 4 to 6 at the time. I was not surprised to find that I did not notice any difference and just turned it off again. Then, in August when I got my PR Dreamstation, I tried setting EPR to 3 again, but this time I was using pressure in the 7 to 8.5 ranges. After about 2 weeks, I still did not notice any difference so just turned it off.

However, with higher pressures, it may be worthwhile to try again. On the Resmed now, I am running in CPAP mode at 8. I had the best night last night I have ever had. No reflux, no waking up, no large leaks, deep sleep, all the good and none of the bad. I felt well-rested all day today. I don't know if this will continue, but if it does, I will stop changing anything. If it does not, then I will set EPR to 3 the next time I raise the pressure. On the Sleepyhead report, the FL chart looked slightly better although the pressure graph was tight to the top as usual. But I will not even be concerned if this good sleep continues. I finally feel things are going in the right general direction.

Unfortunately, the good sleep does not continue each night and my sleep-onset insomnia is as bad as ever. I don't know why, but it often comes and goes without any explanation. Although I am having many better nights, I also have a lot of bad nights.

Now we come to the issue that I mentioned to Robysue in another thread. I told her that there may be something I had not discussed before that could explain why all my attempts to have any control over my sleep habits fail. It is called Primary, or Idiopathic Insomnia. I have been told by several medical practitioners that this is what they think I have. Link below:

http://emedicine.medscape.com/article/291573-overview

This is sort of a bucket diagnosis that is given when one has exhausted most all possible causes and found none. No doctor or therapist has ever made any headway with my insomnia. I have always had it. My parents said, even as a baby, I did not sleep much and would often be awake at night.

Doctors have told me that my insomnia may be genetic because several others in my family have the same issues. I have studied several family members who seem to have the same characteristics as I have.

1. They are thin and hyperactive.
2. They have seemingly incurable insomnia.
3. They have psychological issues, but it never had been determined if the psychological problems cause the insomnia or if the insomnia is the cause of the psychological problems.
4. They all need to medicate for sleep.
5. Some have chosen to medicate with alcohol and become alcoholics. Not me.
6. Their biggest lifelong complaint is that they have trouble sleeping. But when they do sleep well, they do well.
7. They all have faces shaped like mine. So these are all relatives that look like me.
8. They all are generally healthy otherwise, but tend to die sometime after reaching 78 years or more of heart disease. All I have looked at died of heart disease, but often very late in life.
9. Most of them appear to have some sort of psychic abilities. There are many jokes in the family that these members often can't sleep at all in certain houses because of "ghosts" of deceased family members and friends. In fact I was told several times by spiritual practitioners that the reason for my insomnia is an artifact of psychic abilities. It is interesting that my husband is physic and has been told the same thing about his insomnia. He has extremely vivid dreams to the point where he sometimes falls out of bed.

I had hoped that CPAP therapy might be the missing explanation and I still have some hope that this will work or a least help at night.

The interesting thing is that CBT therapy helped me greatly with the depression I experienced following the death of my first husband, indirectly helping my sleeping problem, but later when I tried it for sleep, it did not work. I am a very good mediator and often use it to relax myself before bed. But it has never helped me to drop off to sleep. I often find myself extremely relaxed and happy after getting into bed, but unbelievably wide awake. Meditation often makes me feel extremely relaxed and happy, but very wide awake.

In Dr. Krakow's book, Sound Sleep, Sound Mind, he talks about getting sleepy at night and trying to induce sleepiness. I know what sleepiness feels like. I experience it often during the day and at night only while I was taking Perphenazine/Amitriptiline. It felt so good to actually get sleepy and drift off to sleep. So I know the feeling. But, without it being daytime or under certain medications, I just don't ever get sleepy at night. I get tired and fatigued, but never sleepy. I never remember falling asleep the morning after, although I may be aware of about how long it took to fall asleep. But I don't experience the drifting into sleep that he describes. With me, it is as if my lights were suddenly put out at some point, but I don't remember any of it. This I think is abnormal.

PEF,

I don't have time to write a lot right now and you've written quite a bit that I would like to respond to.

I do have a question based on something you wrote in this very last post:

PEF wrote:In Dr. Krakow's book, Sound Sleep, Sound Mind, he talks about getting sleepy at night and trying to induce sleepiness. I know what sleepiness feels like. I experience it often during the day and at night only while I was taking Perphenazine/Amitriptiline. It felt so good to actually get sleepy and drift off to sleep. So I know the feeling. But, without it being daytime or under certain medications, I just don't ever get sleepy at night.

This is a really crazy idea, but hear me out.

In addition to the Primary or Idiopathic Insomnia you may have a severe circadian rhythm problem. Heck, you may have a severe circadian rhythm problem instead of Idiopathic Insomnina.

In other words, your body may just prefer sleeping in the daytime.

If you chose to stay up all night doing something positive and enjoyable (instead of worrying about being up all night) and you went to bed after you started to get sleepy after daybreak, do you think you'd be able to get 4-6 hours of decent sleep (with the PAP) before waking up? Do you think that if you got really sleepy say 4-6 hours after getting up that you'd be able to get another 2-4 hours of decent sleep? And then feel rested for the remainder of the night---as in all night until night is over and it's daytime once again?

In other words, what if your problem is that your circadian rhythm is 6-8 hours off of "normal"?

I bring this up because as my parents got older, their circadian rhythms got more and more out of sync with each other. By the time my parents were in their early 60s, my father's normal sleep schedule was something like 8pm-4am or 9pm-5am. My mother's normal sleep schedule was more like 5am-noon or 6am-noon. They got used to this crazy situation and it became "normal" for them to have a nice breakfast together after my father woke up and before my mother went to bed. Because the crazy sleep schedules "worked" for them and they both felt reasonably decent during their "wake" cycles, they never bothered to figure out how to "fix" the problem of my mother's "insomnia" or my father's "evening sleepiness".

robysue wrote:I don't have time to write a lot right now and you've written quite a bit that I would like to respond to.

Please take all the time you need to respond. I know you are busy. I honestly don't know how you and Pugsy do it all.

robysue wrote:This is a really crazy idea, but hear me out.

This is not crazy at all! I actually think this is what my husband and I are drifting into.

robysue wrote:In addition to the Primary or Idiopathic Insomnia you may have a severe circadian rhythm problem. Heck, you may have a severe circadian rhythm problem instead of Idiopathic Insomnina.

In other words, your body may just prefer sleeping in the daytime.

You may be right - I hope you are right. I do know that I have always had a circadian rhythm problem. When I was a kid, until I was about 12, my parents made me go to bed early, around 7:30. Ouch! I remember laying awake until around 12. As a teenager, I was always the most popular babysitter on the block because I never fell asleep. later, I got my best uninterrupted sleep when I worked 4pm to midnight because it corresponded nicely with the hours I liked to sleep. Working days was always difficult and I usually did not get much sleep, often only 5 to 6 hours per night. And, as I told you, my doctor had me on Perphenazine/Amitriptiline for about 15 years when my sleep problems got really bad, until the side effects forced me to stop taking it. When I was on these meds, I could sleep anytime I wanted just by taking the meds about 2 hours before I planned to go to sleep. In the last 10 years or so, the circadian rhythm problems have been much worse.

robysue wrote:If you chose to stay up all night doing something positive and enjoyable (instead of worrying about being up all night) and you went to bed after you started to get sleepy after daybreak, do you think you'd be able to get 4-6 hours of decent sleep (with the PAP) before waking up? Do you think that if you got really sleepy say 4-6 hours after getting up that you'd be able to get another 2-4 hours of decent sleep? And then feel rested for the remainder of the night---as in all night until night is over and it's daytime once again?

In other words, what if your problem is that your circadian rhythm is 6-8 hours off of "normal"?

I see what you are getting at. Maybe the problem is so bad that I need to completely rethink my sleep times. I see that I have resisted this too much. But I think now I may be in the early stages of this process of change and slowly accepting that this change is necessary. I do think my circadian rhythm is off by maybe 5 to 6 hours. I seem to get my best sleep now between 4am and 9am. When I can sleep in until 9 or 9:30, I feel good. So this would give me 5 to 6 hours of good sleep. And then, yes, if I need more sleep, I probably can get a 2 hour nap in the afternoon. Is this what you mean? And I would do better with my xPAP if I was not laying awake and thinking about the mask and trying too hard to fall asleep.

You know, the story you told me about your parents makes me think about what my husband and I are doing - each one up and down - crossing in the night. Really funny, but until now, I failed to see the humor in it. We are such creatures of habit! I keep having to remind myself that I am retired and no one cares what hours I sleep.

So I just need to find something enjoyable to do without waking up my husband, who usually goes to bed at 9pm and gets up at 5am, but who also has insomnia, the kind where you get to sleep fine, but wake up often thinking that it must be morning by now. Because he is a light sleeper, I think I worry about waking him up. He usually does not wake up if I turn the TV on and I do have Netflix. I can also do reading and I have sometimes done baking when I could not sleep. I would love to go outside, but the dogs would have to come with me and they may bark at something outside and that would wake him up. HE does not mind if I wake him up, but I worry about him getting enough sleep. I have some arts and crafts that I have not had time to work on in a long time. I remember Dr. Krakow saying that crossword puzzles were especially good to work on at night. I will get some. So, yes, I think this is a really good idea! I am so glad you told me this story. I must admit that the biggest annoyance for me at night when I am not able to get to sleep is boredom and the need to be quiet. I am really not so concerned about what time it is. So this is what I need to work on.

II can't thank you enough for all the help you have given me!

PEF wrote: I see what you are getting at. Maybe the problem is so bad that I need to completely rethink my sleep times. I see that I have resisted this too much. But I think now I may be in the early stages of this process of change and slowly accepting that this change is necessary. I do think my circadian rhythm is off by maybe 5 to 6 hours. I seem to get my best sleep now between 4am and 9am. When I can sleep in until 9 or 9:30, I feel good. So this would give me 5 to 6 hours of good sleep. And then, yes, if I need more sleep, I probably can get a 2 hour nap in the afternoon. Is this what you mean?

That's EXACTLY what I mean!

If your body wants to sleep between 4am and 9am and then maybe get a two hour nap later in the afternoon, why fight what the body wants to do if you don't have to?

And I would do better with my xPAP if I was not laying awake and thinking about the mask and trying too hard to fall asleep.

I think you'd be much better off not laying in bed awake with the xPAP blowing air down your nose thinking about the mask and trying to hard to fall asleep. Also with the aerophagia problems you've been dealing with, all that laying in bed with the mask on allows you to also worry a lot about the aerophagia.

Ok back again with an update. This new routine, sleeping from about 3:30am to about 9:30 am and then trying to get a couple of hours during the day seemed to work well for about 1 week. Actually, even in the beginning, I was not able to sleep during the day at all with my xPAP, BUT the roughly 5 hours (based on Sleepyhead reports) of sleep I was getting was ok during that time. But by the second week, I was beginning to feel seriously sleep deprived. I could not sleep during the day with the xPAP and I know the reason why. When I got sleepy during the day, if I put on the mask and went to bed, as soon as the air started flowing, it lit up all the dials in my brain. I almost immediately felt wide awake. So then I would get up figuring I just wasn't tired. About 2 or 3 hours later, when I felt really tired again, I would try again and the same thing happened all over again. So in the early evening after dinner, I would be so sleepy I could not stay awake and would try again. Same thing. When the air starts flowing, the sleepiness goes away for at least an hour or 2. So I would get up again. So I started not using xPAP when I felt the need to nap during the day. Without the mask, I was much more likely to fall asleep because the sleepy feeling did not disappear, but I would only sleep for about an hour. It was very refreshing and things were going much better. But then a curious thing happened. At night, I began to be very sleepy around 1am. When I went to bed with the mask on, the same thing happened, I would feel wide awake as soon as the air started flowing. I tried to ignore this and just wait for the sleepiness to return. However, after about 45 minutes, I could no longer lay there with the mask on because I could start to feel air bubbles forming in the back of my mouth. So by about 2am I would be up. But I would be really, really tired, so tired that I did not want to be up and could not enjoy doing anything. I felt like a zombie. On nights when I preserved with the mask, I would fall asleep around 4am out of sheer exhaustion. In the morning, about half the time I would have large leaks that I was vaguely aware of waking me up and just did not sleep very well. So to finally get more sleep, I would go to bed about 1am when I was really sleepy without the mask and would usually be asleep before 2. Then I would usually awaken about an hour and a half later and put the mask on. Then I would have no trouble at all getting back to sleep and I would sleep until around 9am, this time usually with no large leaks, feeling much better in the morning. Of course, sometimes I don't wake up to put the mask back on.

Anyway, the last 4 days, I have had a very bad cold, so I am not using my xPAP at all and not having insomnia problems, but I often don't have insomnia when I am sick. However, I get to sleep much easier and enjoy laying in bed until I fall asleep and not having to get up. I also am able to sleep in about 1 more hour in the morning.

Is it possible that the air flowing actually makes me more awake at first, or is my mind playing tricks on me? I really have not felt much bothered by the mask and air as long as I can get to sleep in about a hour. Longer than that, air starts to sneak into my mouth. That is when I must get up even though I don't want to because I am so tired.

Before xPAP, I would just stay in bed until I fell asleep even if it was a couple of hours or more. It seemed like that was my relaxation time. But with xPAP, I find that I must get up although I am so tired I can't do anything other than sit in a chair. Sometimes I even try to sleep in the chair. I think this is what causes me so much anxiety. I don't mind getting up if I am just not tired. But when I am dead tired and just cannot drop off to sleep, this really causes me a lot of trouble. Of course, this is where the sleeping pills can be helpful, but do not always work.

I've tried probably every over the counter and prescription sleeping pill available. Medical marijuana has worked the best for me and has significantly reduced my insomnia without the morning grogginess and lethargy caused by sleeping pills.

It seems pretty clear from my sleep logs and Sleepyhead reports (when I wake up, I always turn my machine off and on to record the wake up), that xPAP is robbing me of about 3 hours of sleep per night. 2 hours in sleep-onset and 1 hour of early awakening. And often the 4 to 5 hours I get with xPAP is marred by mask struggles of one form of another waking me out of deep sleep. Right now, I have stopped using it entirely in order to finally get some good sleep. Since stopping, the before bed anxiety has diminished.

I have also noticed that almost all my sleep events happen when I am in deep sleep in the early morning hours. So when I go back to using xPAP, I am going to try going to sleep without the mask and put it on the first time I wake up to try to catch the deep sleep, but not have the severe sleep-onset insomnia.

Well, it appears I have finally mostly beaten the insomnia.

I am so grateful to Robysue. She brought me to the realization that I had to sleep the hours that my body wanted to sleep. Before, I used to try to get to sleep around 11 pm and just could not fall asleep. Now I stay up until about 1:30 am and sleep until around 9:30 am. It still takes me about an hour to fall asleep, but that is no problem. She also turned me on to the sleep log. It gave me a clear picture of what my problems were.

However, I had to realize that not allowing myself to remove my mask, after not sleeping for several hours, had caused me massive sleep anxiety. Also, the "getting out of bed multiple times" only made things much worse. So "stay in bed and take off the mask" is what I need to do if I have too much trouble getting to sleep. I simply could not solve the leakage issues even though I tried everything. I don't know at this point if I will continue with xPAP or not, but I will not if it costs me my sleep. My ENT told me that some people just cannot make it work and he thinks my sleep apnea issues are not severe, so I should not worry if I only use when I can. He was never in favor of me using it in the first place because he knew I was prone to insomnia and thought the cure could be worse than the disease. He was right. He was happy, however, how it helped my silent reflux.

So I am happy to report that I have been able to continue with xPAP about 80% of the time. I seem to be settling into a workable sleep routine with an occasional bad night. Here is the protocol that seems to be working:

I often go to bed when I feel fatigue or I have back pain and want to get off my feet. I don't always feel sleepy, so I know I may not get to sleep right away. (The floors in my house kill me because they are tile over concrete). Once I lay down, most of the pain goes away within a half hour. Before starting xPAP, I was mostly content to just lay awake until I felt sleepy, which could be 2 hours or more. xPAP changed all that because, if I wore the mask in bed without falling asleep in about 1 hour, the therapy air would start leaking into my mouth and I had to get up. This new arrangement caused me massive anxiety because I did not want to get up and as soon as I got up, my back and legs would hurt again because of the hard floors. I could not enjoy anything when I got up. Then, when I went back to bed, I was often even more wide awake, massively anxious, and having back and/or leg pain all over again which just kept me awake even longer. So this situation was quite intolerable.

This is what I do now: I go to be when I feel fatigue or the leg/back pain is bothering me. This is usually around 11:30pm. After I am ready for bed, I am rarely feeling sleepy (it takes medication for me to feel sleepy or during the day when I have not had much sleep the night before). I get into bed without putting my mask on. During roughly the first half hour while my back/leg pain is going away, I do my "closing of the day routine". I used to do this before going to bed. It still is often hard to get to sleep, but I do my best while trying to keep the mind chatter down and telling myself that sleep will come. Eventually I will feel sleepy. When I do, I get up and take my 1/2 Ambien pill and put my mask on. About 2/3 of the time, I get to sleep within 20 minutes. About 1/3 of the time, It takes longer because the mask tends to keep me awake. I often get to sleep by reminding myself that it is OK to take off the mask and go to sleep if I want to. Ironically, I rarely have to take it off. It seems that just telling myself that it it ok to take it off and not get out of bed relieves a lot of anxiety and lets me fall asleep with the mask on. Sometimes, I wake up much later and can't remember if I removed the mask or not until I feel it. If I wake up later, I am always able to easily get back to sleep. I do sometimes, on a bad night, just remove the mask and go to sleep without it, only to put it on the first time I wake up. Once in awhile, I fall asleep until morning without the mask. So this is working. I don't use the machine if I have a cold or if I am traveling, both of which is unusual.

I have 2 chronic problems with regard to xPAP:

1. I can't stop the leaks that wake me up often. The leaks are not usually bad enough to seriously interfere with therapy, but I am usually aware of waking because of mask issues whenever I sleep with it. Mouth tape, cervical collars don't help stop the leaks. The leaks are not mouth breathing. They are mask movement, pillows hurting, and therapy air sneaking in the back of my throat where I have missing molar.

2. I have reduced the pressure to min. 5 and max. 7. Higher than that, the leaks get much worse and seriously interfere with therapy. On occasional nights, when for whatever reason I am not bothered by leaks, I feel much better on higher max pressure. So I really think I could benefit from it. But I just cannot raise the pressure.

3. The only benefit that keeps me using it is that I have less silent reflux when I use it, which is why I started it in the first place. However, probably I can't take advantage of higher pressure, I don't feel any better or better rested when I use xPAP and when I don't use it. I don't feel that my sleep quality is any better. I never look at Sleepyhead anymore, because the AHI, which is always low on the Resmed and between 5 and 9 on the Dreamstation, seems irrelevant.

I need to get a sleep study to figure out what is going on, but I doubt I can do it. My insurance in Panama won't cover sleep apnea at all and I have Medicare in the US, but am rarely there.

Well, now I am doing quite well and am happy to say I have been using the xPAP almost every night. The sleep onset insomnia is down to between 1 and 1 and 1/2 hours most nights, which is fine. I am feeling much more rested these days.

Many thanks to Robysue and Pugsy for all the help finding the reason for my insomnia.