Cognitive Behavior Therapy for Insomnia

[chunkyfrog]

The lecturer at our local apnea support group gave a talk about CBT-I
--Cognitive Behavior Therapy for Insomnia.
Anyone tried it? --Is this as useful as they say? (the people doing it)
The idea is to help people get off sleep drugs.
Medicare covers it; which may or may not mean anything. . .

[RationalEntropy]

Cognitive Behavioral Therapy is used on a number of conditions, usually with good success rates. I'm sure that there are other studies on it being applied to insomnia, but found this quickly: http://www.hta.ac.uk/fullmono/mon808.pdf .

This website gives a summary of Cognitive Behavioral Therapy: http://www.nacbt.org/whatiscbt.htm . Hopefully it is not too biased.

As for anecdotal pieces I cannot provide much. The way I figure it questioning, seeking answers, bouncing things off a semi-objective third party (the professional), improving sleep hygiene, seeing where things go wrong, rinse and repeat until serious progress is made. If effective, problem solved. If not, then continue, or try something else.

If I had frequent insomnia I would consider it.

Just my 40% of a nickel.

[chunkyfrog]

No problems myself, but there seem to be so many suffering; just thought I'd share.

[robysue]

Anybody who's followed my saga knows that I started a CBT-based approach to tackling my rather serious CPAP-induced insomnia back on 12/31/2010.

Overall, I've been happy with the results---even though I've been "stuck" at not sleeping much more than 5 1/2 to 6 1/2 hours a night for a very long time. Right now, I'm typically going to bed between 2 and 3 AM and sleeping until 8:30AM. The key, however, is that I am sleeping during this 5 1/2 to 6 1/2 hour "time in bed" window rather than tossing, turning, fighting the machine, and in general NOT sleeping while I'm in bed.

I feel substantially more rested and more refreshed when I wake up in the morning that I did when I started doing the hard CBT work for the CPAP-induced insomnia. And most mornings now, I actually feel better and more rested than I felt before my crazy CPAP adventure began. And so while I still wish I was sleeping more and at more normal hours, my insomnia feels like it's "under controI", I no longer dread bedtime, and I no longer have a deep emotional resentment of PAP's presence in my life.

If folks are interested in the details of what my therapy entailed and how it has played out in the long run, I'd be happy to post a rather lengthy essay about it that I recently wrote for someone at that other apnea board.

[robysue]

Cognitive Behavioral Therapy is used on a number of conditions, usually with good success rates. I'm sure that there are other studies on it being applied to insomnia, but found this quickly: http://www.hta.ac.uk/fullmono/mon808.pdf .

Thanks for this link!

[napstress]

If folks are interested in the details of what my therapy entailed and how it has played out in the long run, I'd be happy to post a rather lengthy essay about it that I recently wrote for someone at that other apnea board.

Yes, please.

[49er]

The lecturer at our local apnea support group gave a talk about CBT-I
--Cognitive Behavior Therapy for Insomnia.
Anyone tried it? --Is this as useful as they say? (the people doing it)
The idea is to help people get off sleep drugs.
Medicare covers it; which may or may not mean anything. . .

As a person who has successfully tapered off of a 4 med psych cocktail, including two sleep medications (Doxepin and Remeron), I wanted to offer a bit of caution. First of all, it has been my experience that many medical professionals are clueless about withdrawal issues and as a result, feel it is easier to blame the patient in various ways such as not being compliant, being difficult, falsely blaming the return of the person's mental illness, not willing to change, etc.

So if a CBT therapist is unaware of withdrawal issues and wrongly blames the patient, that could make things worse instead of better.

Regarding CBT itself, personally, I am concerned that it is becoming too much of a one size fits all type of situation. For example, one of its big premises is sleep restriction therapy and not being allowed to go to bed until midnight.

What about the people who can't stay awake until midnight? Then what? And I am not talking about folks who simply have developed bad habits. They literally can't stay awake until then no matter how hard they try.

I am sure there are positives i am not aware but having tapered off of sleep meds without CBT, I wanted to mention my concerns.

49er

[robysue]

Regarding CBT itself, personally, I am concerned that it is becoming too much of a one size fits all type of situation. For example, one of its big premises is sleep restriction therapy and not being allowed to go to bed until midnight.

Sleep restriction is indeed a common part of CBT for insomnia. But when it is used, it is used because a person's sleep cycles are so disjointed and unconsolidated that the person's current "time in bed" period is contributing to the ineffective sleep rather than helping the person. And it is designed to be a short term tool that will be relaxed once the person has trained his/her body to make the deep unconscious association that Time in Bed = Time to Sleep. Once this association has been made, time is added to the "Time in Bed" window in small increments of 15-30 minutes once a week until the desired "time in bed" is reached.

What about the people who can't stay awake until midnight? Then what? And I am not talking about folks who simply have developed bad habits. They literally can't stay awake until then no matter how hard they try.

Three comments based on my own experience and the reading I've done.

First, sleep restriction is probably most effective for folks with severe bedtime insomnia. These folks don't have any trouble staying up. Their problem is either lying in bed for what seems like hours if they go to bed at a normal time or simply not going to bed until the wee hours of the morning because of they dread lying in bed for hours if they go to bed at a normal time.

Second, trimming the "time in bed" window can be done at both ends of the "time in bed" period. If staying up later is problematic, then getting up earlier works just as well at accomplishing the goals of restricting the sleep time. So if someone really cannot stay up past 10:30pm, for example, it's possible to do a sleep restricted schedule by making the wake up time earlier: Telling the person to get up at 5:00 or 5:30 every morning instead of sleeping until 6:30 or 7:00. gives a perfectly good moderately restricted sleep schedule of no more than 6.5-7 hours of "time in bed." For a more strict 6 hour schedule, a person who can't stay up past 10:30 could be ask to stay up to 10:45pm and get up at 4:45am.

I am sure there are positives i am not aware but having tapered off of sleep meds without CBT, I wanted to mention my concerns.

I will readily admit: CBT is not for everybody. For me, it allowed me to rein in my severe CPAP-induced insomnia without the need for sleep meds. That was important to me: Because I was NOT taking sleeping meds on a regular basis, there was no need for me to struggle with tapering off of sleep meds once the insomnia was reined in.

And I don't mean to sound facetious, but I must ask because I really do want to know the answers:

Why did you start taking sleep meds in the first place?

How long did you use the sleep meds before starting to taper off of them? Did you use them for decades? for years? for several months? for a few weeks?

How did you use the sleep meds? Every single night or only "as needed"? If it was "as needed", how often did you actually use them? A couple of times a week? Or a couple of times a month?

How did you taper off the sleep meds? How long did it take? Did you make any other changes in your sleep behavior at all while tapering off the meds?

I really am interested in how you managed to taper off the sleep meds without CBT because I know way too many people who pop sleeping pills every single night without giving it much thought. Some of them are in denial about other issues (including OSA). But some of them are just plain hooked on the sleeping pills.

And one of my very good friends who is hooked on sleeping pills really wants to get off of them. This friend has been taking some kind of prescription medicine for sleep for more than a decade. At the time I was doing serious CBT to rein in my own insomnia, Tina decided that she really needed to get off of the medicine. (Alas, I don't recall which med she was on at the time; I want to say it was trazodone, but I'm not sure.) Her decision was at least partly based on the fact that the med she was taking was not entirely effective: She could get to sleep when she wanted to, but she was still waking up multiple times during the night and finding herself unable to get back to sleep for long periods of time. And this happened frequently---as in almost every night. Working with her doc she tried to wean herself off the meds without doing CBT. Even so, she was asked to clean up her sleep hygiene just a bit. The two things she was asked to do were minor: Turn the clock around so she could not see it when she woke up in the of the night. And if she got up in the middle of the night, don't start doing work related things. Notably, she found it much harder to simply turn the clock around than give up doing the work related stuff in the middle of the night. After many months of struggling with such things as substituting herbal sleep aids and SleepyTime tea for the pills, she gave up. She's now taking Lunesta every night. And, as far as I know, she still continues to wake up in the middle of the night and stare at the clock while not sleeping.

[ems]

My niece was taking Lunesta every nite for two years. She started getting daily headaches and flu like symptoms. She went to many doctors and had every test known to man - seriously! Nothing showed up. Coincidentally, she stopped taking the Lunesta. No more headaches or flu like symptoms!

[49er]

Hi Roby Sue,

I was on a psych med cocktail for 15 years including tapering time for issues that caused depression. In retrospect, if I had learned some coping techniques to deal with those issues, I think my years of drugs would have been avoided.

Anyway, as I am sure people are well aware, antidepressants have a side effect of insomnia and that is how I ended up on Remeron and Doxepin for sleep meds. The Doxepin was added right before I started tapering as the Remeron stopped being effective.

I used psych med withdrawal boards and learned how to taper my meds at 10% of current dose every 4 to 6 weeks. As one who had had horrible problems from coming off of drugs too fast, that felt instinctively right to me since the premise was your brain needed time to adjust to having less of the medicine since it makes neurochemical changes throughout the body.

By the way, if you tell your doctor you want to taper at this rate, you will be looked at like you are from outer space because most medical professionals will not taper patients this slowly.

Obviously, I don't know your friend's situation but her story sounds so similar to what people post on withdrawal boards. Doctors taper them too quickly, they give up and think it is hopeless.

Regarding her using sleep hygiene techniques, I am not minimizing the fact that they can be useful. But if she was put on a tapering schedule that was too fast for her body, she could have had perfect sleep hygiene and it still wouldn't have prevented her problems in my opinion. It would be like asking someone coming off of cocaine who couldn't sleep to implement these techniques.

Unfortunately, even though I got off the meds, I did struggle with sleep issues which I now think might have been due to the undiagnosed apnea. I think I may have been wrongly blaming them on withdrawal issues.

As a result, I have a sleep schedule that looks like someone with advanced phase syndrome. I recently purchased a light box that I am going to start using and see if I can get this situation improved. So when you mentioned staying up until 10pm, I wanted to say that even that would be difficult for me.

Unfortunately, while I sleep as well as someone can sleep with apnea off of the machine, I continue to have severe problems sleeping on the machine as it continues to be the sleep one hour at a time type of deal. I am exploring various options and theories in an attempt to solve the problem since I am barely using the machine.

By the way, I would greatly appreciate it if people would refrain from providing any type of lectures such as I am ruining my health and I need to stick it out come heck or high water.

Yes, I know that what I am doing is not good for me long term and that is why I am actively looking for solutions to the problem. As far as sticking it out come heck or high water, are you willing to support me if I lost my temp job due to not being able to perform thanks to severely fragmented sleep from using the cpap machine?

By the way, RobySue, just so you know, I really respect all the stuff you had to overcome and how generous you are in helping people who are struggling. I do hope you write that post about what you went through. I have read accounts of your story several time but repetition is good:)

49er

PS - You do make a good point that if you haven't been taking sleeping pills for too long, you might not need to taper or if you do, the tapering schedule can be quick.

Regarding CBT itself, personally, I am concerned that it is becoming too much of a one size fits all type of situation. For example, one of its big premises is sleep restriction therapy and not being allowed to go to bed until midnight.

Sleep restriction is indeed a common part of CBT for insomnia. But when it is used, it is used because a person's sleep cycles are so disjointed and unconsolidated that the person's current "time in bed" period is contributing to the ineffective sleep rather than helping the person. And it is designed to be a short term tool that will be relaxed once the person has trained his/her body to make the deep unconscious association that Time in Bed = Time to Sleep. Once this association has been made, time is added to the "Time in Bed" window in small increments of 15-30 minutes once a week until the desired "time in bed" is reached.

What about the people who can't stay awake until midnight? Then what? And I am not talking about folks who simply have developed bad habits. They literally can't stay awake until then no matter how hard they try.

Three comments based on my own experience and the reading I've done.

First, sleep restriction is probably most effective for folks with severe bedtime insomnia. These folks don't have any trouble staying up. Their problem is either lying in bed for what seems like hours if they go to bed at a normal time or simply not going to bed until the wee hours of the morning because of they dread lying in bed for hours if they go to bed at a normal time.

Second, trimming the "time in bed" window can be done at both ends of the "time in bed" period. If staying up later is problematic, then getting up earlier works just as well at accomplishing the goals of restricting the sleep time. So if someone really cannot stay up past 10:30pm, for example, it's possible to do a sleep restricted schedule by making the wake up time earlier: Telling the person to get up at 5:00 or 5:30 every morning instead of sleeping until 6:30 or 7:00. gives a perfectly good moderately restricted sleep schedule of no more than 6.5-7 hours of "time in bed." For a more strict 6 hour schedule, a person who can't stay up past 10:30 could be ask to stay up to 10:45pm and get up at 4:45am.

I am sure there are positives i am not aware but having tapered off of sleep meds without CBT, I wanted to mention my concerns.

I will readily admit: CBT is not for everybody. For me, it allowed me to rein in my severe CPAP-induced insomnia without the need for sleep meds. That was important to me: Because I was NOT taking sleeping meds on a regular basis, there was no need for me to struggle with tapering off of sleep meds once the insomnia was reined in.

And I don't mean to sound facetious, but I must ask because I really do want to know the answers:

Why did you start taking sleep meds in the first place?

How long did you use the sleep meds before starting to taper off of them? Did you use them for decades? for years? for several months? for a few weeks?

How did you use the sleep meds? Every single night or only "as needed"? If it was "as needed", how often did you actually use them? A couple of times a week? Or a couple of times a month?

How did you taper off the sleep meds? How long did it take? Did you make any other changes in your sleep behavior at all while tapering off the meds?

I really am interested in how you managed to taper off the sleep meds without CBT because I know way too many people who pop sleeping pills every single night without giving it much thought. Some of them are in denial about other issues (including OSA). But some of them are just plain hooked on the sleeping pills.

And one of my very good friends who is hooked on sleeping pills really wants to get off of them. This friend has been taking some kind of prescription medicine for sleep for more than a decade. At the time I was doing serious CBT to rein in my own insomnia, Tina decided that she really needed to get off of the medicine. (Alas, I don't recall which med she was on at the time; I want to say it was trazodone, but I'm not sure.) Her decision was at least partly based on the fact that the med she was taking was not entirely effective: She could get to sleep when she wanted to, but she was still waking up multiple times during the night and finding herself unable to get back to sleep for long periods of time. And this happened frequently---as in almost every night. Working with her doc she tried to wean herself off the meds without doing CBT. Even so, she was asked to clean up her sleep hygiene just a bit. The two things she was asked to do were minor: Turn the clock around so she could not see it when she woke up in the of the night. And if she got up in the middle of the night, don't start doing work related things. Notably, she found it much harder to simply turn the clock around than give up doing the work related stuff in the middle of the night. After many months of struggling with such things as substituting herbal sleep aids and SleepyTime tea for the pills, she gave up. She's now taking Lunesta every night. And, as far as I know, she still continues to wake up in the middle of the night and stare at the clock while not sleeping.

[kteague]

I have never had professionally guided cognitive behavioral therapy, but just based on my experience, even with my sleep disorders treated it seemed my brain had developed ingrained patterns of misbehavior that required proplonged intentional retraining to develop healthier sleep patterns. Can't help but wonder if I had been under the direction of a competent professional if my progress might have been expedited. Fully realizing I am not a professional, like an armchair quarterback, I am strongly opinioned that any treatment of impaired sleep should follow diagnostics, so I have some concerns about a legitimate tool being used illegitmately.

In treating my PLMD, while I have been able to calm my legs with TENS treatment, my brain is still very glitchy and disrupts my sleep. In the same way my legs used to get stuck in a repetitive pattern of movement, my brain will get stuck on repeat with either a sentence or a single line from a song. Since I live with my daughter and her family writes and records music, it's usually a line from a song. My way of handling it has been to sing in my head the Barney song or The Wheels on the Bus until I fall back asleep, but it is only temporarily effective. What does work is to sleep with a radio on low, but just loud enough for the words of the songs to be heard. As long as my brain has incoming info to process and keep it moving forward, it doesn't get stuck. I think this is probably a neurotransmitter issue, but if cognitive behavioral therapy could help that problem, I'd be open to it. I have a feeling it would be hard to find a professional experienced in this application of CBT.

Robysue, your experience certainly speaks to the value of CBT in insomnia treatment. Thanks for sharing.

[robysue]

As promised, here's the post about my personal experiences with CBT for Insomnia. I apologize for the length. But since CBT is, itself a lengthy orocess, I didn't really want to skimp on the details.

The short, sweet version of my CBT for Insomnia story: The CBT involved a significant amount of hard work and dedication on my part. It was not easy. But it has made a huge difference in my ability to both sleep in general and sleep with my BiPAP in particular. And I'll get to the details of what my particular CBT involved later in this post.

For anybody who is looking for a long-term, non-pharmaceutical way of improving insomnia-related sleep issues and who is willing to make some real commitment to changing their behaviors and who is willing to work on a solution for several weeks to a few months, I'd strongly recommend giving a CBT approach to dealing with insomnia. But if you are impatient or need a quick-fix solution or are unwilling to make some significant, long-term changes in your lifestyle, then CBT is probably not going to be your cup of tea. It's also important to remember that I had no long term history of taking prescription sleeping medication prior to my starting the CBT for Insomnia when you read my story: Trying to rein in insomnia without using sleeping medication in the first place is one thing; trying to wean oneself off of a long term habit of using prescription sleeping medication is something else altogether.

There's a huge amount of "self-help" for insomnia out there too. And much of the self-help stuff has a heavy dose of CBT in it. Two of the most useful resources I've found for dealing with the combination of insomnia and CPAP are the following two books, both written by doctors with plenty of experience in sleep medicine:

• Sound Sleep, Sound Mind, by Dr. Barry Krakow
  Sleep Interrupted, by Dr. Stephen Park

Park's book is hands down the best extensive book about OSA written for the patient that I've run across. He goes through both exactly what kinds of things cause our airways to collapse and what the consequences of untreated OSA really are. He also talks at length about why CPAP works and some of the problems that patients have with CPAP. And along the way there are plenty of suggestions on how to conquer those pesky adjustment problems.

Krakow's book is a wonderful resource for successfully conquering insomnia without drugs. He writes at length about a whole host of behavior patterns that are common in both light sleepers and insomniacs that tend to aggravate our sleep problems. And for each behavior pattern he offers plenty of concrete, hands-on suggestions on how to change the behavior from a pattern that encourages poor sleep to a behavior pattern that encourages high quality sleep. Moreover, he usually gives plenty of alternate approaches for "fixing" a particular pattern. And he clearly understands that most insomniacs have multiple behavior patterns that wreck havoc with their sleep, and so many of his suggestions are designed to work together to help foster quality sleep. His book also ends with a long discussion of sleep disordered breathing (SDB). (OSA is the classic example of sleep disordered breathing.) He makes a sound case for the idea that SDB is a major cause of insomnia for folks who are sleeping with undiagnosed SDB. And he talks at length about how a properly titrated PAP therapy can work wonders for curing some folks' long standing insomnia, but he is also astute enough to note that for some of us insomniacs, the initial adjustment period to PAP therapy can temporarily make things worse not better----because, after all, there's a lot we have to learn how to deal with when starting PAP therapy and some of what we have to deal with can aggravate our insomnia.


***********************************************************************
My experience with CBT for Insomnia

Because CBT ought to take the back story of the person's problems into account, I thought I'd start with a description of both my pre-CPAP insomnia history and the development of my CPAP-induced insomnia. That puts my CBT for Insomnia into pesrpective.

Pre-CPAP history of insomnia
Prior to my OSA diagnosis I frequently had random nights of insomnia, but most of the time I'd sleep "decently enough." In other words, I didn't fight insomnia night after night pre-CPAP. And when the insomnia would raise its ugly head, it was typically bedtime insomnia---I had problems getting sleepy at bedtime and falling asleep if I went to bed at a decent time. I also had (and still have) serious problems with both getting to sleep and staying asleep in hot, humid weather---unless the AC is set to something like 68-70 degrees. And even then the AC can bother me if it is blowing directly on me. And I'm somewhat sensitive to changes in barometric pressure---I don't sleep well when the pressure is dropping because of a big storm system coming through for example.

I had dealt with a number of stress-induced bouts with insomnia that had lasted two or three months. The stressors that led to two of the biggest bouts of insomnia were: the death my mother when I was 8 months pregnant and living some 600 miles away from my parents and my husband being seriously injured in a car accident (he was hospitalized for about 3 months). In all these bouts of more serious insomnia, the insomnia was predominantly bedtime/sleep onset insomnia: Once I got to sleep, I'd usually manage to stay asleep well enough.

And in these previous bouts with insomnia, I was able to rein them in with careful attention to good sleep hygiene. Pre-CPAP, the most useful techniques for me had always been:

• Go to bed only when sleepy and know the difference between feeling sleepy and feeling tired or exhausted.
• Use the bed (and bedroom) only for sleeping and sex. (So no reading in bed for me.)
• Cut back on the caffeine in the afternoon and evening.
• Don't watch the clock when lying awake in bed. (Hubby and I would switch sides of the bed when the clock was posing a problem for me.)
• Don't focus on worrying about how little I was sleeping. Focus on realizing that I likely get more sleep than I think I do.

Well before starting CPAP, these basic rules of good sleep hygiene had become a well established part of my daily life and they typically kept my pre-CPAP insomnia under control in the sense that most nights I'd be able to go to bed at a reasonable time, manage to fall asleep within about 30-50 minutes without getting anxious about not being asleep. I did a lot of daydreaming and fantasizing while waiting for sleep to come.


The growth of my CPAP-induced insomnia
I started CPAP on 9 /23/2010. And by 9/26 I was already sensing the on-set of the "bedtime dreads." (See Dreading bedtime on night 4 if you want to see how I described it at the time.) And almost immediately I started to crash and burn in the sense of my daytime functioning. By night three, insomnia was starting and I was getting serious aerophagia issues. By 10/12 my hubby had insisted that I call the sleep doc's office to discuss the extreme daytime sleepiness, extreme daytime fatigue, air getting into eyes without any apparent mask leaks, serious aerophagia, and whole host of other issues. The PA who met with me ordered a week of auto-titration and asked whether wanted a prescription of Ambien. I turned down the idea of taking sleeping pills and we spoke about sleep hygiene. In addition to discussing the things I was already doing, she suggested that I avoid all naps (micronapping was a serious problem at the time) and that I think about establishing a more regular bedtime/wake-up time sleep schedule. But I was dealing with so much misery from the machine, and not much of this registered. (Two relevant posts from this time period are Starting AutoPAP tonight---almost 3 weeks into therapy and Update for week 4 of CPAP/APAP.)

I continued to struggle with a wide variety of sensory overload problems, all of which continued to feed my really nasty case of bedtime insomnia. My sensory overload problems included:

• aerophagia
• air blowing into my eyes through my tearducts
• pressure tickling the back of my throat
• chipmunk cheeks
• an inability to talk to my husband
• a sense of becoming more alert as soon as I put the mask on
• an inability to find a genuinely comfortable sleeping position at the start of the night
• chapped lips
• being excessively bothered by the exhaust flow of the FX mask
• being excessively aware of my own breathing
• conducted noise through the hose

In addition to these sensory overload problems, my sleep patterns were becoming increasingly disturbed by:

• waking up angry in the middle of the night
• waking up with painful aerophagia in the middle of the night
• waking up with a stiff neck both in the middle of the night and in the morning
• waking up with some numbness in my arms or legs from not moving around in the morning
• an inability to wake up on my own in the morning

In short, the bedtime insomnia was morphing into sleep maintenance insomnia as well bedtime insomnia. During this period of time, I was in bed with Kaa on my nose for anywhere between 5 and 11 hours. Most nights, I'd be in bed somewhere around 6-8 hours, But it sure didn't feel like I was getting 6-8 hours of sleep. I felt almost as tired and exhausted as I'd feel back in grad school after pulling an all-nighter. But it was happening night after night.

Fast forward three months to the end of December 2010. By this time the PA and sleep doc had switched me from CPAP to APAP to BiPAP because of on-going misery due to aerophagia. The insomnia continued to grow and had begun to morph to include some significant sleep maintenance insomnia as well as the bedtime insomnia. (See The insomnia monster raises its head again and again .... for how I felt at the time.)

By late Decemeber 2010, I had finally gotten to the point where the sensory stimuli from the BiPAP was no longer making me as miserable as the APAP had back in October, but I was getting no more sleep and feeling only marginally better in the daytime than I had during late September and early October. And I had finally gotten to the point where I realized that I was not going to be able conquer this particular insomnia monster all by myself. And with hubby's insistence, I called the sleep doc's office again and asked to meet with the PA to talk primarily about the insomnia, rather than all the sensory issues with the PAP machine.


The CBT program designed for me
On Dec. 31, 2010 the PA and I met to talk about the insomnia. The PA started the meeting with me talking about sleep hygiene and together we developed a CBT plan for fighting my insomnia. We started with setting some goals:

• Reduce my "time to sleep" down to something I could tolerate with the mask on. One on-going problem at bedtime had been that I would get very uncomfortable with aerophagia if I was lying awake with the mask on my nose for as long as about 20 minutes. And on the worst nights this would trigger real, uncontrollable anger at bedtime.
• Consolidate my sleep cycles so that I spent less time being awake during the night. The idea was that if my sleep could become less fragmented, I'd have more energy and more emotional reserves for dealing with things in the daytime and at night.
• Reduce the number of nightly wake ups AND reduce my anxiety and anger on waking up in the middle of the nightThe long and multiple wakes were both fragmenting my already fragile sleep and a constant source of anger at my whole situation. Poor hubby never knew when I'd wake up and explode with anger---anger about being awake; about being a freak; about having OSA; about aerophagia; and so on and so forth.

Note that "Sleep soundly for 8 hours without any conscious wakes" was not a set goal: Such a goal would have been unreasonable at the time. And setting reasonable, attainable goals is important part of CBT.

The CBT aspects of the program were:

• Paying more careful attention to the sleep hygiene techniques already was using on a nightly basis.
• Imposing a strict bedtime and a strict wake up time on me. This was the only one of the standard good sleep hygiene rules that were not already part of my standard sleep pattern.
• Imposing a sleep restricted schedule for several months. More on this later.
• Imposing the following rules on my time in bed:
  • If I get angry or upset when trying to get to sleep, then I have to get up out of bed and leave the room. I can return to the bed only after I am no longer angry or upset.
  • If I cannot get to sleep in what I estimate to be about 30 minutes OR if I feel as though I am becoming more ALERT and less SLEEPY, then I have to get up out of bed and leave the room. I can return to the bed only after I am feeling SLEEPY again.
• Keeping asleep log
• Trying to get some light exercise on most days
• Cutting out all caffeine after 10AM. And making sure I didn't eat supper too late.
• No naps
• A prescription for Ambien with the idea that I would take the Ambien only to prevent multiple "disastrous nights" in a row. More on this later.
• Monthly follow up appointments to talk about the progress I'd been making along with strong reminders to expect some two steps forward, one step back in overall progress.

In my opinion, the most critical parts of this program for me were the rigid wake up time, the sleep restricted schedule, the rules about getting out of bed if I am angry, upset or NOT sleepy, and the sleep log.

The point behind the rigid wake up time was to help me get sleepy at a more regular time during the evening. And to make sure that I was able to get up in time to get to my first class. (I'm a college professor.) The PA allowed me to choose the wake up time. I chose 7:30 AM since I could not imagine trying to make myself get up any earlier than that on weekends AND it was early enough for my class schedule in the Spring 2011 semester.

The point behind the sleep restricted schedule was to encourage my mind and body to sleep more efficiently in the limited time I was allowed in bed. The PA started me out on a maximum six hour time in bed schedule. By intentionally making me a bit more sleep deprived, the idea was that my body and mind would learn how to get to sleep faster at the beginning of the night, learn how to wake up less frequently during the night, and fall asleep faster after waking up during the night.

The sleep restricted schedule was established by the PA telling me that my bedtime for the foreseeable would be 1:30 AM---precisely six hours before the twake up time that I chose. During the active CBT phase of treatment, I was NOT ALLOWED to go to be any earlier---no matter HOW sleepy I was. I was supposed stay up that late every night. And if I was not sleepy at 1:30, I had to stay up until I was sleepy enough to go to bed and try to go to sleep. And I still had to get up at 7:30 regardless of when I actually went to bed.

The rules about not lying in bed for long periods of time while awake or angry were to help my mind and body to make the firm connection that Being in Bed = Time to Sleep. Lying in bed for long periods of time essentially rewarded that part of my mind that did NOT want to be asleep.

The sleep log had a dual purpose: It held me accountable for sticking to the program and it gave me a place to track data that showed my slow, but steady progress in reining in the insomnia. I kept track of when I went to bed, estimated how long it took me to fall asleep, and how many times I woke up each night. I'm also kept track of when I actually had to get out of bed and how long I wound up staying out of the bedroom. Of course all this time stuff had to be done without looking at a clock---I was to estimate all of these things in the morning. Well, except for looking at the clock when I headed off to bed or when I woke up.

And at the start of this program, the PA expected that we'd be able to relax the sleep restricted schedule by the end of two or three months. The idea was that once I was self-reporting that I was consistently getting over 5 hours of sleep in my six hour sleep window, that I'd be able to start moving bedtimes back in 15 minute increments until I was sleeping a normal amount at a normal time.

Along with doing the work the PA wanted me to do, I also started working my way through Krakow's Sound Sleep, Sound Mind. From Krakow, I discovered that closure had been a long time issue for me, and since starting CPAP, closure had become a huge issue. There were a number of things from Krakow that I also implemented---mainly by adding them to the sleep log I was keeping.


How Well Did It Work For Me?
Some things worked really well.

Latency to Sleep. By the end of four weeks of this program, I was consistently getting to sleep within about 10 minutes of going to bed for the first time in my adult life. Now I am usually able to fall asleep within 5 to 10 minutes if I'm appropriately sleepy when I go to bed. And this has largely ended my bedtime dreads. I don't always get to bed as early as I'd like to, but once I'm sleepy enough to know I'll have no problem falling asleep, I can mask up and get to sleep with no problems at all. That's made a huge difference in my life.

Waking at night. I still wake up a lot at night---usually 2--4 times that I can (vaguely) remember. The Zeo often records more wakes; but I'm pretty sure some of those are nothing more than misscored REM periods. And the wakes I vaguely remember are now very short---seldom more than 5 minutes long AND when I get up in the morning they have not really bothered me. A year ago I'd wake up and often get angry or I'd wind up waking up to FULL ALERTNESS. Now? When I wake up it's usually to turn over or fix a leak or apply chapstick, but I can do all of these things without having to wake all the way up to FULL ALERTNESS. And so my sleep feels much more continuous. As the PA told me back in March or April 2011: If the number of wakes are very few and they are all so short that they don't really feel like they're fragmenting your sleep, then they're not problematic.

Night time anger issues. These are almost nonexistent now. When I started this program, I was getting angry at bedtime or waking up and getting angry at least once or twice a week. Now? It's maybe once every month or two. Huge difference.

Prescription sleeping pills. I originally had a prescription for 14 Ambien tablets. The idea was that I would take an Ambien at the beginning of a night that followed a "disastrous night" for the insomnia. This would prevent me from having two or three disastrous nights in a row. The PA told me that what qualified as "disastrous" was up to me to decide for myself. I took about 6 of the Ambiens during the first month or so of this CBT program. Because you have to have a six window for sleep time for Ambien and because I needed to be able to make the decision to take something much closer to WAKE UP TIME, a month into my CBT, the PA wrote me a prescription for 30 Sonata capsules since Sonata can be taken as little as 4 hours before WAKE UP time. In the last year, I've taken about 6 of the Sonatas. I think it's been a couple of months since the last time I took anything thing.

Subjective Quality of My Sleep. This is far, far better than it was when I started this program. But it's not perfect. Indeed, I would describe my nightly sleep as "ok" to "pretty good" on most days. I'm still not getting as much sleep as I would like--my time in bed is typically between 5 and 7 hours (the last month's average is 6:11). However, I do feel that the insomnia is more or less under control: I certainly wake up feeling like I've gotten some high quality sleep almost every night now. And on those nights when I'm tossing and turning, there's an identifiable NON-PAP related cause. (Pain from a torn MCL has been a problem the last couple of weeks for example.)


Some things have not worked out quite the way PA intended them too.

Wake time, Bedtime, and Sleep Window. By the end about two months of the CBT my sleep cycles had consolidated enough that I got the go ahead for starting to move the bedtime back 15 minute increments. My instructions were to move bedtime back to 1:15 as long as it didn't trigger any problems with sleep latency or additional wakes. Unfortunately I've always have been something of a night owl----left completely to my own preferences, I' think that I'd wind up with a sleep schedule that would look something like 2:30 or 3:00 for bedtime and about 9:30 or 10:00 for wake up time. (I probably have a touch of a circadian rhythm problem.) And at the time I was trying to move my bedtime back from 1:30 to 1:15, I was also dealing with serious side effects of some prophylatic migraine medication and the start of spring allergies. So that never quite happened. Everytime I tried going to bed a few minutes earlier, it would trigger more wakes or significantly longer latency to sleep.

After being fired by sleep doc #1 in May 2011, sleep doc #2 suggested that I try extending my sleep period by sleeping a bit later in the morning and not worrying too much about moving the bedtime at my first meeting with her in June 2011. But unfortunately throughout summer 2011, this resulted in my bedtimes and wake up times growing more ragged. (I'm still working on the necessary discipline to make regular wake up times and regular bedtimes a real part of my life.) In June August 2011, sleep doc #2 also suggested using a light box to try to stabilize my melatonin cycle and encourage my body to get sleepy at a more appropriate time. (An aside: The PA for sleep doc #1 had suggested melatonin when i was trying to move my bedtimes back and having that cause additional wakes. All the melatonin did was aggravate my TMJ problems.)

Right now? I typically get to bed sometime between 1:15 and 3:00, depending on when I get sleepy. And I'm pretty consistently waking up (without an alarm clock) by 8:15 or 8:30 AM. So I get between 5.5 and 6.5 hours of sleep most nights, and occasionally I get as much as seven, and on some nights I only get about 5 hours of sleep. (The zeo often tells me that I slept less than I thought. Again, I think it's because my zeo seems to misscore REM and light sleep as WAKE.) I can function on 6-7 hours of sleep without having serious issues with daytime sleepyness or fatigue. And so I don't really feel alarmed about the amount of sleep I get anymore.


Light therapy. In August 2011 when I expressed my unwillingness to take a sleeping pill on a nightly basis, my second sleep doc suggested that one way I could try to make it easier for me to get sleepy earlier in the night was to use a SAD Light in the morning. The SAD light approximates the level of natural daylight shortly after dawn. The idea is to help normalize the melatonin cycle.

So far I've had mixed results with the Light therapy. It definitely has helped me wake up in the morning and has improved my mood during the late summer of 2011 and the following fall. I believe that the light therapy is also why I now sometimes get sleepy enough to go to bed by 1:00AM on some nights. But at the same time, the light therapy started to sometimes trigger a very low-grade, but nagging headache that had some characteristics of my chronic migraines. With the return of morning light this spring, I've quit using the light and I'm still able to get up by 8:15-8:30 most mornings.

I fully intend on using the light box again next fall since difficulty with getting up in the mornings in fall and winter have long been problems for me. And while I love winter if there is snow on the ground, when it's cold and gray and snowless, it affects my mood pretty substantially.


Interaction between the CBT, the PAP therapy, and OTHER medical issues affecting my sleep
Taming the insomnia and my full adjustment to PAP also required working on three other things: Dealing with the sensory overload coming from the PAP machine; dealing with my chronic migraines; and dealing with my TMJ issues. Technically these were NOT part of the CBT plan designed in Dec. 2010. But I add them here because I regard coming to grips with the necessity of doing the work on these "problems" as critical to my taming the insomnia. And it took me a very, very long time to figure that out as far as the migraines and TMJ were concerned.

Dealing with the sensory overload from PAP

• The switch to the Auto BiPAP finally got the aerophagia genuinely under control. I still have problems, but they are not severe and they are not night after night. Sleep Doc #1's PA was critical in managing to get me switched to the right machine and was patient in figuring out the correct pressure settings.
• Multiple ideas from posters here, plus my PA, and my PCP were critical in helping me find solutions to many of the sensory problems I was encountering.
• And time eventually played a role. By using the dang machine every single night, eventually my highly sensitive body started to teach itself to ignore some of the more subtle, but irritating sensory stimuli from the biPAP. I no longer feel like the back of my throat is constantly tickled for example. Gregorian chants provide distraction from the sound of my own breathing. Custom chapstick takes care of the chapped lips. And so on and so forth.

Controlling the migraines.
Just before my CBT-for-Insomnia started, I was also diagnosed with chronic migraines. And controlling the migraines turned out to be a double-edged sword. I had serious side effects to three different prescription meds and this set the insomnia back by quite a lot. And one of the frustrations I had in Spring 2011 was in dealing with the sleep doc's PA for the insomnia and the neurologist and his PA for my migraines. The migraine drugs kept triggering rather severe side effects that tended to cause temporarly backsliding in terms of the progress of taming the insomnia. And whenever I had a meeting with the sleep doc's PA while in the middle of dealing with serious migraine-med side effects, the meeting turned out to be rough on both of us. The sleep doc's PA, who was in charge of my CBT, did not seem to be willing to think about how the migraines and migraine meds might affect my battle with the insomnia. And that left me very frustrated. (And this was one of the causes of why Sleep Doc #1 eventually fired me.)

But the neurologist's PA was interested in how the meds were affecting my sleep and was pleased when I dropped off a copy of my sleep logs for her before my meetings with her. And she clearly read them and she eventually figured out a solution to how to treat my chronic migraines without aggravating the insomnia.

And once the migraines were pretty much under control with Deplin, Riboflavin, and Magnisium, that meant the sensory overload from the machine was significantly less likely to trigger a migraine, with both the resulting pain and anger. And that, of course, decreased the insomnia.


Properly treating my TMJ.
I've worn a night guard for close 30 years. And I've chewed through night guards at an alarming rate the whole time: A soft one would typically last about 18 months; a hard one lasts maybe three years. But my primary care dentist finally referred me to a specialist when I chewed through a brand new hard night guard in a bit more than two or three months in the Spring of 2011. Treating the TMJ has allowed my TMJ to genuinely heal and has changed my bite by correcting my overbite without braces. This has allowed the BiPAP to stay at EPAP = 4 for long periods of time and has helped eliminate some residual snoring. It's also reduced pain levels. And TMJ headaches are gone when I wake up. Still have residual TMJ (muscle) pain in the daytime. And eliminating some of the residual snoring and the TMJ headache and jaw paine, in turn, have been positives for the insomnia. There's more work to be done here: The tech at the TMJ dentist's office who deals with me suggested that I think about whether I want to do a round of PT for stretching out my overly tight jaw muscles before my next appointment in May. So it looks like I'll be doing some PT for stretching out my overly tight jaw muscles this summer.





My Overall Satisfaction with the CBT for Insomnia
I now feel that subjectively my insomnia is under control, even if I'm sleeping the crazy hours of 1:30-2:00AM for bedtime and 8:15-8:45 for wake up time. I continue to be amazed at how much better I feel if my sleep efficiency is around 88% rather than 82%. (Sleep efficiency is (Time asleep)/(Time in Bed).) In other words, I've learned that I feel better getting 6 hours of sleep out of 6.5 hours of time in bed than I do getting 7 hours of sleep out 8.5 hours of time in bed.

I wake up feeling like I've slept decently enough most mornings. And my definition of "decent" have gotten much more stringent than it was pre-CPAP. I consistently wake up pain free and this is important: During the last several years prior to my diagnosis I had woken up with hand and foot pain almost every morning. This has vanished with the BiPAP.

My sleep seems less restless most night. I don't tend to toss and turn as often anymore. Hubby reports that I seem more "calm" in my sleep.

I am amazed at how nice it is to go to bed and fall asleep quickly. I'm also amazed at how I can now wake up in the middle of the night and not worry about it. I'm pleased that I've made real progres in learning how to deal with issues like minor mask leaks or putting additional chapstick on my lips without becoming so alert that I have a difficult time getting back to sleep.

I continue to keep the sleep log. I probably could (maybe should) give up keeping it. But it gives me a reality check to keep working on keeping my wake up time reasonably regular all seven days a week. I am getting much sloppier about doing it every single day. If there's nothing of note, I'll let it slide for a couple of days and fill in the "numbers" based on data from SleepyHead and the zeo.

Overall, I am happy with my choice to work on taming my insomnia monster mainly through CBT. I am glad that I am no longer on a maximum of six hours in bed even though I still often don't get much more time in bed than six hours. It's nice to know that IF I'm sleepy enough to go to sleep some seven hours before I intend to get up, I'll still likely feel like I slept pretty decently.

In conclusion, I was not really willing or able to believe that this kind of hard work needed to be done in the earliest, darkest days of my PAPing back in Fall 2010. In retrospect, I wish I'd worked towards establishing the more rigid wake up time and bed time regime that the PA imposed once I finally did ask for CBT for the insomnia. It might have made things much easier for me back in the Fall of 2010. And it might have made the CBT less time consuming and potentially more effective.

[robysue]

49er,

I've been meaning to respond to your thoughtful post, but we're on the road and this is the first chance I've had.

I want to thank you for sharing your story. You have clearly had to deal with a number of prescription drug related issues that I have been quite fortunate to have not had to deal with. And I appreciate the window into what it's been like dealling with weaning yourself off the drug cocktails prescribed for your conditions. And I congratulate you on being able to wean yourself off the meds you wanted to discontinue and both acknowledge and admire the hard work you had to do in order to accomplish your goal.

I respect your opinion that folks who are trying to wean themselves off of psych meds and/or prescription sleep meds are often given a tapering schedule that may simply be too rapid to insure patient success. That may very well be a significant part of my friend's problem in her efforts to get off the sleep meds.

I am curious about some things about what you write. And I'd like more information about how you accomplished your very slow tapering schedule.

First You write:

I used psych med withdrawal boards and learned how to taper my meds at 10% of current dose every 4 to 6 weeks. As one who had had horrible problems from coming off of drugs too fast, that felt instinctively right to me since the premise was your brain needed time to adjust to having less of the medicine since it makes neurochemical changes throughout the body.

This makes a great deal of sense to me. But I remain puzzled by the mechanics of tapering the meds by 10% at a time.

Were you taking multiple pills or doses? In other words, if you want to taper a med that you take as a single pill once a day, how do you cut the dose by 10%? Even with a pill cutter that's a pretty stiff challenge.

By the way, if you tell your doctor you want to taper at this rate, you will be looked at like you are from outer space because most medical professionals will not taper patients this slowly.

I wish I could say I'm surprised, but I'm not. There are some things that docs just don't seem to get. The taper rate you suggest (10% every 4 to 6 weeks) means that the tapering period is expected to last somewhere between 8 and 14 months. And it doesn't surprise me at all that a doc would not understand why it might be very advantageous for a patient to taper down this slowly. Docs don't seem to have much patience with patients who take a long, long time to start feeling better when dealing with a "chronic" condition

Regarding her using sleep hygiene techniques, I am not minimizing the fact that they can be useful. But if she was put on a tapering schedule that was too fast for her body, she could have had perfect sleep hygiene and it still wouldn't have prevented her problems in my opinion.

I see where you're coming from. And I think you may well have identified a significant issue for my friend.

But do you taper off more slowly if you're only taking one pill per day?

Chopping the pill in half for a 50% reduction in dose is easy to do in the sense of "reducing the dose", and that may be why the docs gravitate to the too-quick taper rates. But as you point out, a 50% drop in the drug could easily exceed what your body can tolerate, which can then easily lead to a failure to taper at all.

Of course, if you're on a drug with multiple doses available, then switching the dose and taking 1.5 pills of the lower dose might work. But what to do if the doc won't listen to you when you say you want (or need) to taper very slowly over an extended period of time?

As a result, I have a sleep schedule that looks like someone with advanced phase syndrome. I recently purchased a light box that I am going to start using and see if I can get this situation improved. So when you mentioned staying up until 10pm, I wanted to say that even that would be difficult for me.

Good luck on the sleep box.

Just what hours are you sleeping? When do you typically go to bed? When do you typically wake up? And how much sleep do you estimate you actually get in your time in bed window?

And do you take naps? If so, when are the naps and how long do they last?

Unfortunately, while I sleep as well as someone can sleep with apnea off of the machine, I continue to have severe problems sleeping on the machine as it continues to be the sleep one hour at a time type of deal. I am exploring various options and theories in an attempt to solve the problem since I am barely using the machine.

What options and theories are you exploring?

And you say you sleep "one hour at a time" with the machine. What happens at the end of the hour? Does the machine wake you up? (If so, how?) Does an apnea slip through and wake you up? Or does something other than the machine/OSA wake you up?

And what do you do when you wake up? Just take the mask off and immediately return to sleep without the mask? Try to get back to sleep for a while with the mask (how long?) and then take the mask off in frustration? Get out of bed for a while? And then do what before returning to bed?

By the way, I would greatly appreciate it if people would refrain from providing any type of lectures such as I am ruining my health and I need to stick it out come heck or high water.

No lectures, but curiosity about how bad your apnea is.

Yes, I know that what I am doing is not good for me long term and that is why I am actively looking for solutions to the problem.

Again, I'm genuinely interested: What kinds of solutions are you looking for? What kinds of solutions are acceptable?

As far as sticking it out come heck or high water, are you willing to support me if I lost my temp job due to not being able to perform thanks to severely fragmented sleep from using the cpap machine?

This is, I think, a serious issue for many people. And in my own dealings with multiple sleep docs, I think that sleep docs tend to vastly underestimate just how deeply some of us are negatively affected when we first start on CPAP. We don't get better as expected and that frustrates them---because ordinary docs don't really like to think all that much about the hard cases. They don't want to be Dr. House. They want their patients to get better as expected.

And so very little seems to be understood or known about why some people feel their sleep becomes more fragmented with CPAP than it was pre-CPAP.

And I think that the combination of lack of real support from the docs combined with the fact that many people do seem to function better without the CPAP than with it form a powerful explanation of some of those high "CPAP failure" rates.

And finally in my case, I was lucky: I'm a tenured college professor. And there's virtually no way to lose your job. And I do NOT underestimate the importance of holding a tenured position when it comes to my story. I also have a husband who was able to provide substantial emotional support, even though he has been unemployed for some six years. And underemployed for many years before that.

49er, I sincerely wish you the best of luck in finding a solution to ALL of your sleep problems, including both the OSA and the CPAP-induced sleep fragmentation, that actually works for you. What a solution will look like, I don't know. But it will have to be your solution crafted, alas, primarily by you, but hopefully with the input from doctors who both know you and can acknowledge your personal needs and issues in coming to grips with your sleep problems.

[napstress]

As promised, here's the post about my personal experiences with CBT for Insomnia.

Thanks, Robysue, for posting your essay. I appreciate the detail; it really fleshed out the pieces of your story I have been gathering over the past year, and helps me determine what is relevant to my slightly different case. What you have gone through is way rougher than what I have gone through—and mine was rough enough! So I feel inspired: if you could make such progress under such difficult circumstances, surely I should be able to muster!

When people mentioned CBT for insomnia, I thought it referred to decreasing one's obsessive ruminating and giving one strategies for coping with the strong emotions coming from difficult life situations, but this seems more like strategies for sleep hygiene. Krakow has given me some tools, as have Byron Katie and Non-Violent Communication, but I am in intense emotional pain (fear and anger) from office politics and am unable to shake it off. This is disturbing to me b/c I was hoping to use Spring Break for getting some work done at a more relaxed pace. But a decision at work that impacts my workflow is up in the air for the week; there is a good chance I'm going to have to sprint over the next 6 weeks, due to someone's controlling my workflow—when I was planning on tackling the project at a more balanced pace in Spring '13. This sudden feeling that I might have to "gear up" for a big project is anti-conducive to relaxing during Break—which is something I really need. And while I know that letting go of thinking about it would be a gift to myself, I have not been able to do so. I've been "feeling my feelings," but they're not budging!

Does anyone know of any other CBT books for distancing oneself from one's thinking, and for sticking up for oneself when feeling terrified of and deeply angry with someone?

Needless to say, I've added "Search for a job" to my list of things to do over Break!

[49er]

Hi Robysue,

I greatly appreciate the fact you took the time to write a thoughtful and detailed post. Thank you for your kind words and being understanding of withdrawal issues.

"""I used psych med withdrawal boards and learned how to taper my meds at 10% of current dose every 4 to 6 weeks. As one who had had horrible problems from coming off of drugs too fast, that felt instinctively right to me since the premise was your brain needed time to adjust to having less of the medicine since it makes neurochemical changes throughout the body.[/quote] This makes a great deal of sense to me. But I remain puzzled by the mechanics of tapering the meds by 10% at a time.""

Great question and these are the basic ways.

1. Get the medicine in liquid form which can be done with meds like Prozac and use a syringe to make the calculation. Don't ask me to explain it because I never used this method and am clueless.

2. Get a .001g digital measuring scale and make the appropriate calculations so you can do a 10% cut. Personally, I found it easier to crush the pill and then make the calculations.

3. Have a compound pharmacy make the amount that you can't get at your local CVS. I did this with Wellbutrin XL. Disadvantage is insurance might not cover it.

This board has more information if you're interested. It is not run by professionals as an FYI so keep that in mind. But many people ended up there because of doctors not advising them properly on how to taper.

http://survivingantidepressants.org/ind ... -tapering/

"""By the way, if you tell your doctor you want to taper at this rate, you will be looked at like you are from outer space because most medical professionals will not taper patients this slowly.[/quote]I wish I could say I'm surprised, but I'm not. There are some things that docs just don't seem to get. The taper rate you suggest (10% every 4 to 6 weeks) means that the tapering period is expected to last somewhere between 8 and 14 months. And it doesn't surprise me at all that a doc would not understand why it might be very advantageous for a patient to taper down this slowly. Docs don't seem to have much patience with patients who take a long, long time to start feeling better when dealing with a "chronic" condition""

Well, mine lasted nearly 4 years with 4 meds.. LOL. My psychiatrist was initially very opposed to this slow schedule but to his credit, he did come around and support. He had no choice:)

Hmm, not sure why docs are so impatient when they are benefiting financially with the slow tapering rate.

""But do you taper off more slowly if you're only taking one pill per day?""

If you have been on it a long time, yes. I am too tired to look for it now but Peter Breggin, I think has a tapering rule for meds depending on the amount of time you have been on the drug. I will try and find it.

""Of course, if you're on a drug with multiple doses available, then switching the dose and taking 1.5 pills of the lower dose might work. But what to do if the doc won't listen to you when you say you want (or need) to taper very slowly over an extended period of time?""

That is a real problem for many people. Options are to find another doctor who will listen.

Another option is to lie and tell the doctor you want to stay on the med. With certain meds, you can do the taper on your own such as with Remeron.

Unfortunately, if you have a med that can't be cut, then the issue is more trickly.

""Just what hours are you sleeping? When do you typically go to bed? When do you typically wake up? And how much sleep do you estimate you actually get in your time in bed window?""

I was going to bed at 8pm and waking up at around 2pm. But I am really serious about keeping that pushed back. Last night, I didn't succeed because I was so tired from cpap fun the night before which I will get to in a minute.

""And do you take naps? If so, when are the naps and how long do they last?""

I wish:) All jokes aside, I have cut those out on the weekend as I know I need to do everything possible to facilitate succeeding in sleeping on the autopap full time.

And of course, since I am working, I am definitely not napping during the week.

""And you say you sleep "one hour at a time" with the machine. What happens at the end of the hour? Does the machine wake you up? (If so, how?) Does an apnea slip through and wake you up? Or does something other than the machine/OSA wake you up?""

Good question and that is why I will be seeing a new doctor. Nothing else has been waking me up so I do feel it is the machine.

For example, Sunday night, I slept two hours which I think was due to pushing my bedtime back to 10pm but was awoken by runaway pressure and series of hypopneas. I also had a very high exhale puff score which hadn't happened previously.

""And what do you do when you wake up? Just take the mask off and immediately return to sleep without the mask? Try to get back to sleep for a while with the mask (how long?) and then take the mask off in frustration? Get out of bed for a while? And then do what before returning to bed?""

On Sunday night, i was determined that the mask was going to go back on if I woke up without it. This was after a series of days in mostly sleeping without the mask. Yup, I did take the mask off and return to sleep without it.

Unfortunately, I developed a panic attack that I hadn't experienced since my withdrawal days. I literally could not calm myself down no matter what I did. Finally, I fell asleep in bed without the mask.

Regarding keeping the mask on, here is my issue that I think is a big barrier. When I wake with the mask, I find it very irritating. Wearing it before bed does not help with this issue. In fact, I am comfortable going to sleep with it but when I wake up, I want to get it off as quickly as possible. The act of having to put it back on is a royal pain in the neck since I wear glasses and need a mirror s

Thinking that a nasal mask might be easier, I purchased on off of ebay. Unfortunately, I have simply not been able to relax with this since I know I have to breath through my nose.

I am thinking about trying an hybrid to see if that might be a possible option.

I know I am not explaining this totally well as a wave of sleepiness is coming over me that I am trying to hold off.

Basically, if I would wake up with a viable mask that was light enough to keep on face, it might be easier not to take it off. If not, I will have to figure out something else.

""No lectures, but curiosity about how bad your apnea is.""

Home study said moderate but I am concerned the severity might be worse as in my opinion, the scoring system is flawed. It was based on the total amount of the recording time (which assumes sleep the total time) divided by the number of apneas and hypopneas. One problem - I was only asleep for about two hours.

""Yes, I know that what I am doing is not good for me long term and that is why I am actively looking for solutions to the problem. [/quote]Again, I'm genuinely interested: What kinds of solutions are you looking for? What kinds of solutions are acceptable?""

Pushing my bedtime back to 10pm in the hopes that this will facilitate longer sleep on the machine. Might even push it back to 10:30pm although that it is really pushing it.

I think I will try narrowing the pressure range since many people have had success doing that. Interestingly, a few weeks ago, I unexpectedly slept 3 hours on the machine. For some reason, I used 10 to 12 cm. I think I mean to do 10 to 13cm but it was the most successful experience I had.

""This is, I think, a serious issue for many people. And in my own dealings with multiple sleep docs, I think that sleep docs tend to vastly underestimate just how deeply some of us are negatively affected when we first start on CPAP. We don't get better as expected and that frustrates them---because ordinary docs don't really like to think all that much about the hard cases. They don't want to be Dr. House. They want their patients to get better as expected.""

You nailed it precisely Robysue. It is very frustrating.

When I was looking for a internist several years ago, there was this one doctor who said on her website that she enjoyed complicated cases. I was so stunned that a doctor would say this since it seemed to be so rare. Unfortunately, it was just not convenient for me to go to her but that is anothe rpost.

""And I think that the combination of lack of real support from the docs combined with the fact that many people do seem to function better without the CPAP than with it form a powerful explanation of some of those high "CPAP failure" rates.""

Again, you're right on target. You would think they would get a clue but I know I am living in fantasyland.

""And finally in my case, I was lucky: I'm a tenured college professor. And there's virtually no way to lose your job. And I do NOT underestimate the importance of holding a tenured position when it comes to my story. I also have a husband who was able to provide substantial emotional support, even though he has been unemployed for some six years. And underemployed for many years before that.""

I am sorry your husband has been unemployed but glad to hear he provided emotional support.

""I sincerely wish you the best of luck in finding a solution to ALL of your sleep problems, including both the OSA and the CPAP-induced sleep fragmentation, that actually works for you. What a solution will look like, I don't know. But it will have to be your solution crafted, alas, primarily by you, but hopefully with the input from doctors who both know you and can acknowledge your personal needs and issues in coming to grips with your sleep problems.""

Thanks, something needs to happen which hopefully is being able to use the machine 100% of the time.

49er