No respiratory events but still lousy sleep

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ohwhatanight
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No respiratory events but still lousy sleep

Post by ohwhatanight » Mon Feb 20, 2012 7:31 am

Hi, just finished my 4th night with CPAP. Before, my AHI was 8.7 - last night it was 0. My 4 night average was only 0.66. So I should be feeling great, right? But I feel like c**p and feel even less rested than I have in a while. Last night, I tossed and turned all night and don't think I got much actual sleep at all.

On my sleep study, I had 241 arousals in 194 minutes. (74.5/hr) 130 of those were non-respiratory. I only got below stage N2 sleep for 5 minutes of the whole night. I had a sleep efficiency of 53% on a night I was utterly exhausted and could barely stay awake in the chair while they hooked me up. I took 3 hours to reach REM even though I only stayed there for a few seconds. I've been an incredibly light sleeper most of my adult life but only started having breathing issues (that I know of) after I gained a lot of weight in the past few years. I take Ambien CR 12.5 but am still awake most of the night. Out of the 5 hours in bed last night, I think I only slept about 1 - 1.5 hours.

So, does it sound to you guys that my problem isn't just apnea? Or is this typical with newbies and it gets better over time? I tried an hour without the mask the night before last, and had a horrible time trying to breathe so I know I need the CPAP. I am really discouraged and worried that even though CPAP treatment seems to be working great, I may still never get a decent night's sleep. I am so frustrated!

Any words of advice or encouragement? I see my sleep doctor tomorrow - any questions I should ask? Do sleep specialist only deal with the breathing issues? Is she just going to tell me my AHI is great and send me on my way with no other help?

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Julie
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Re: No respiratory events but still lousy sleep

Post by Julie » Mon Feb 20, 2012 7:50 am

Hi - you have a few things to look into I think, but it would help a lot to know what your scripted pressure(s) is set to (sometimes the doctors are so conservative the script is for a very low number that's almost impossible to breathe at and we have to tweak things ourselves), whether or not you use the ramp feature, if you're using c-flex, a-flex or EPR (all 3 make exhaling easier, depending on the machine, if you have a hard time with it), whether you think you really have an issue with insomnia, or just one of adjusting to the machine, what your sleep habits are - e.g. do you keep the same hours every night, do exercise or drink alcohol before bedtime (neither of which is a good idea in terms of time), and whether or not you are likely to breathe with your mouth open once asleep, losing the cpap air that way and, if so, it would be a good idea to try a chin strap, though a full face mask would usually be more effective - lets you breathe through your mouth without losing the air.

ohwhatanight
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Re: No respiratory events but still lousy sleep

Post by ohwhatanight » Mon Feb 20, 2012 8:00 am

Thanks for the fast reply. My Rx pressure is 8. I use the ramp feature when I first get in bed, but not when I wake up later during the night. I have a C Flex+ and the air pressure feels very comfortable. I've been sleeping with my mouth closed and have a low number of leaks. I think the breathing therapy part is doing fine.

I do have chronic insomnia. It's been a problem most of my life. I've had to sleep with an incredibly loud snorer for most of that time until we finally gave up and got separate rooms a few years ago. I am careful to have good "sleep hygiene" as much as is practical. I don't drink or smoke, but I also know I don't get enough exercise. It's hard to find the energy when I am so exhausted all the time.

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Pugsy
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Re: No respiratory events but still lousy sleep

Post by Pugsy » Mon Feb 20, 2012 8:05 am

ohwhatanight wrote: I take Ambien CR 12.5 but am still awake most of the night. Out of the 5 hours in bed last night, I think I only slept about 1 - 1.5 hours.
ohwhatanight wrote:I've been an incredibly light sleeper most of my adult life
Fragmented sleep for any reason will leave a person feeling like total crap even without an OSA diagnosis to make it worse.

If you are prone to insomnia and fragmented sleep, you get a double whammy when trying to sleep with all this stuff attached.

One of our forum members Robysue has had similar issues and she has documented some of it here.
http://adventures-in-hosehead-land.blog ... er_19.html which you might want to read to get some ideas as to what to do.

Might want to google "sleep maintenance insomnia" to get an idea of some things to try to help you stay asleep.

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Re: No respiratory events but still lousy sleep

Post by Mary Z » Mon Feb 20, 2012 9:46 am

Words of encouragement- hang in there. It takes some of us longer to feel better. I think you have to get your sleep issues resolved as best you can. Without good sleep I think most of us feel lousy.
If you haven't seen your doc yet discuss your present problems. If your AHI is good, I don't know how much help your sleep doctor may be with your other sleep issues, but these certainly have to be addressed. Since insomnia is such a chronic and prevalent problem surely there are therapists who can address your sleep issues and guide you towards resolution.
Whatever you do keep using the 'PAP whenever you sleep because if nothing else right now it is helping reduce your risk of heart and other problems. I'm sure you have reviewed basic sleep hygiene.

There are no easy answers and no easy solutions. You have your work cut out for you working on your sleep issues, but know this- you are headed in the right direction.
Good luck, keep us posted.

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Elle
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Re: No respiratory events but still lousy sleep

Post by Elle » Mon Feb 20, 2012 10:57 am

Sorry to hear this is happening to you. I feel your tired and don't envy your suffering.

I am curious to know whether lousy sleep would give you low AHI because you are not asleep enough to have an event. You are aroused most of the night so you don't stop breathing?

Anyway, I hope you can find a solution. I sleep well but on the rare occasion that I don't I feel ill. I can't imagine living with that chronically.

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robysue
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Re: No respiratory events but still lousy sleep

Post by robysue » Mon Feb 20, 2012 12:50 pm

ohwhatanight,

I bid you a sad welcome to the CPAP&Insomnia club. And hope your time in it is short.

As pugsy mentioned, I had some very serious problems with insomnia when I was first starting out, and have written at length about it. Pugsy has already provided the link to my blog. (Thanks Pugsy!)

Several things in your posts jump out at me:
ohwhatanight wrote: Last night, I tossed and turned all night and don't think I got much actual sleep at all.
and
I take Ambien CR 12.5 but am still awake most of the night. Out of the 5 hours in bed last night, I think I only slept about 1 - 1.5 hours.
and
I do have chronic insomnia. It's been a problem most of my life
and
So, does it sound to you guys that my problem isn't just apnea? Or is this typical with newbies and it gets better over time?
From the overall tenor of your posts, it sounds as though you've had sleeping problems for much of your adult life and your insomnia clearly pre-dates starting CPAP.

As frustrating as it is to hear this: You have to tame that insomnia monster of yours BEFORE the CPAP stands a chance of making a difference in how you feel during the daytime. And you have to tame the beast WHILE also adjusting to CPAP therapy at the same time. In other words, you have to get to where you are sleeping with machine rather than lying awake and tossing and turning with the machine on your nose BEFORE the CPAP stands a chance of making a difference in how you feel during the daytime. The CPAP will manage the OSA by preventing the vast majority of respiratory events from happening, but the CPAP will not magically fix other sleep issues.

And with your long history of insomnia, you are likely to have some serious insomnia-related adjustment issues when learning to sleep with the CPAP.

But the good news is that with some hard work on your part it will get better. Not as soon as you would like it to, but it will eventually get better. Once you manage to re-teach your body and mind how to sleep when you are in bed, then sleeping with the mask will be easier and CPAP therapy will then stand a chance of giving you the energy and alertness you hope it can provide to you. More about this later---after we do some analysis of what you say in the rest of your post.

Sleep study data and questions about that data
First I'm a bit confused about the number of respiratory events you had during your sleep study. First you write:
Hi, just finished my 4th night with CPAP. Before, my AHI was 8.7 - ...
and then you write
On my sleep study, I had 241 arousals in 194 minutes. (74.5/hr) 130 of those were non-respiratory.
This seems to indicate that you had 241-130=111 respiratory related arousals, presumably from apneas and hypopneas, in 194 minutes of sleep. That would lead to an AHI (or at least an RDI) in the neighborhood of

(AHI or RDI) = (111 events)/(194 minutes of sleep) = (111 events)/(3.23 hours of sleep) = 34.3

So first of all, can you clarify for us what your diagnostic AHI is and the number and type of events it was based on? And if your sleep study lists both an AHI and an RDI, can you give us both figures? Thanks.

Regardless of what your diagnostic AHI or RDI was on the test, it is extremely important for you to get the doc to also seriously consider the 130 NON-respiratory arousals as well as the 111 respiratory ones. (At least I'm assuming that the remaining 111 were all labeled as respiratory arousals.) Because with 130 non-respiratory arousals in 3.23 hours of sleep, it seems that eliminating every single respiratory arousal is still going to leave you with severely fragmented sleep.

Questions:
Are the 130 non-respiratory arousals all simply labeled as "spontaneous"?

Does the lab attempt to measure respiratory effort related arousals (RERAs)? If not, then it may be worth asking the doc if some or all of those arousals might be RERAs, which would indicate that you may be at the border between UARS (where the problem is mainly RERAs) and OSA (where the problem is mainly OAs and Hs). Treatment for both, alas, is CPAP.

Any mention of periodic limb movements on the sleep study? PLMs can also lead to arousals. These arousals are usually scored separately and they ARE usually scored as PLM-related arousals instead of spontaneous arousals. Sometimes an excessive number of PLMs will resolve itself as the CPAP manages to bring the respiratory related arousals under control. But sometimes an excessive number of PLMs is part of a separate sleep disorder named (surprise, surprise) Periodic Limb Movement Disorder or PLMD for short. PLMD can occur with or without OSA being present. It can be treated through certain prescription drugs. If there are large numbers of PLM-arousals on the sleep study, this is something to talk to the doc about.

Something that sounds similar to PLMD on the surface is Restless Leg Syndrome. If you feel as though your legs get antsy and you have almost uncontrollable urges to move them around when you are lying in bed trying to get to sleep, you might want to ask you doc if you've to RLS.
I only got below stage N2 sleep for 5 minutes of the whole night. I had a sleep efficiency of 53% on a night I was utterly exhausted and could barely stay awake in the chair while they hooked me up. I took 3 hours to reach REM even though I only stayed there for a few seconds.
Clearly your sleep architecture was horribly messed up on the night of the study. Lots of folks have a rough night in the lab, however. So the relevant question is:

Just how much worse was this night (subjectively) than your normal sleep at home?

The usual interpretation of data like yours is something along the lines of: Even though the night in the lab was a rough night, you do have a serious problem with repeated arousals, many of which are respiratory related, on a nightly basis every night. And you likely have severe problems on a regular basis getting into both REM and Stage 3 (deep NREM) sleep. And you probably also have rather low sleep efficiency at home on a regular a basis as well, although the lab's 53% is likely much worse than normal. And what's leading to the daytime fatigue you experience on a daily basis is a combination of the following things:
  1. Way too many respiratory arousals (Fix = CPAP)
  2. Way too many other arousals (Fix = ??? since it depends on what's causing them)
  3. Way too little total sleep time on a regular basis (Current fix = the Ambien CR, but it doesn't seem to be working all that well right now. More on this later.)
  4. Way too little REM and way too little Stage 3 sleep. (Fix = Fix items 1-3 and this should, in time, resolve itself)
And where you're at right now is that the CPAP seems to be doing an excellent job in addressing item #1, but item #3 is known to still be a problem and that means that items #2 and #4 are likely still issues in obtaining a good night's sleep.

Important questions about your insomnia
How long have you been taking the Ambien CR? How long has it been ineffective? It's just my opinion, and I'm NOT a doctor, just a patient, but: It seems silly at best and counterproductive at worst to continue taking medication that is clearly NOT helping the problem. Ask the doc about discontinuing the Ambien.

What other things have you tried to do for the insomnia through the years and how effective have they been? You say, " I am careful to have good 'sleep hygiene' as much as is practical." Please be more specific. What parts of good sleep hygiene do you practice? Which parts do you struggle with or ignore? (For me, the part that I struggle with is "maintain a constant WAKE UP time seven days a week". When that's in place, I am usually in much, much better control of my insomnia than when I allow myself to sleep in on days off.)

What kinds of things are known to make your insomnia worse? And I'm really looking for things beyond the obvious "lots of stress" kind of response. Is it easier or harder to sleep when the room is cold for example? Do weather changes affect your insomnia? Do you have issues like chronic headaches or joint pain that aggravate the insomnia?


My advice
You write:
Any words of advice or encouragement? I see my sleep doctor tomorrow - any questions I should ask? Do sleep specialist only deal with the breathing issues? Is she just going to tell me my AHI is great and send me on my way with no other help?
If you are NOT proactive, then there's a high probability that the doc will indeed say "your AHI is great" and send you on your way.

BUT---sleep docs do deal with all kinds of sleep related issues, including both insomnia and sleep disordered breathing. It's just that once you've been diagnosed with OSA, there's a tendency to blame everything sleep related on the OSA and not see the patient as a whole person with multiple sleep related problems. And it's up to you to insist on getting advice and treatment for all the issues and not just the OSA.

So, in my humble opinion as a patient who's been there and done that, I think you need to talk at length with your sleep doctor about the combination of CPAP adjustment AND insomina. And I think you need to talk at length to the doc about the lack of effectiveness of the Ambien CR 12.5 since you write that you are "still awake most of the night" even after taking the Ambien.

Regardless of how long you've been taking the Ambien, it is clearly NOT working for you if you can lie in bed for 5 hours and feel as though you only got about 1 to 1.5 hours of sleep. Clearly, you need another approach to dealing with the insomnia than Ambien. And it may help to try to deal with the CPAP&Insomnia issues using a combination approach of both cognitive behavior therapy and a switch in sleep medication rather than just a change in sleep medication. Because ultimately what it sounds like is that you need to teach your body how to go to sleep and then stay asleep once you are in bed. And because of that, I think that simply switching from Ambien to a different sleep medication without some CBT may not be as effective as a combined approach: You need the CBT to help you learn how your current sleep habits are adversely affecting both your insomina and your ability to adjust to sleeping with CPAP and how to change those habits so that you teach your body to sleep more soundly at night.

Things you might want to try or ask the doc about:

1) Keeping a sleep journal for a couple of weeks. A simple journal format can be found here. It's important to realize that "time to sleep", "number of wakes", and "total time asleep" should be estimates based on what you think is going on rather than based on watching the clock all night or making notes in the middle of the night. The notes don't need to be elaborate, but if specific CPAP related things cause problems getting to sleep or wake you up, put them down in writing. (For example, "Woke up twice with leaks and once with a dry mouth" is plenty detailed enough.)

2) Talk to the doc about a common tendency amongst insomniacs: Most insomniacs over estimate the time they are awake during the night and under estimate the amount of time they are asleep. Sometimes the simple knowledge that you are sleeping more than you think you are helps you to relax enough to get over the hump.

3) Talk to the doc about how to distinguish between the feeling of being sleepy and the feeling of being exhausted. The two are NOT the same. And many insomniacs mistake being exhausted with feeling sleepy. And it can be tough to fall asleep if you are exhausted but not sleepy. (Think about the cranky toddler who is worn out but way too keyed up to actually take a nap to recharge the batteries.) Ask the doc for tips on how to help your body get sleepy before you become over tired and exhausted.

3) You write: "I am careful to have good 'sleep hygiene' as much as is practical." Read through a current list of guidelines for good sleep hygiene. Carefully and honestly consider your own behavior patterns that affect your sleep. Discuss with the doc which aspects of sleep hygiene are most important and which need the most work on your part. Specifically ask for advice on which parts of sleep hygiene are most critical for you to establish. In particular, ask what you should do when you find yourself lying in bed AWAKE for what seems like hours on end. My guess is that you'll be told to get out of bed, go do something else that is RELAXING for a few minutes in a room other than your bedroom, and then go back to bed only when you are both sleepy and relaxed enough to mask up again. It's hard to force yourself to do this, but it's important. You've inadvertently taught your body that it is OK to be in bed and be WIDE AWAKE. You have to "unteach" your body that and reteach it "time in bed = time to sleep" and at the same time you have to teach it "time to sleep = time to mask up."

4) Make sure that you schedule a follow-up appointment in a month or two in order to talk about BOTH the insomnia and the CPAP adjustment. If things deteriorate before the next followup, CALL the doc's office. They won't treat your issues as serious if you don't treat them as serious.

5) You write: "I don't drink or smoke, but I also know I don't get enough exercise. It's hard to find the energy when I am so exhausted all the time." Daytime exhaustion can be caused by many medical problems, including both untreated OSA and insomnia. So the tendency is going to be for everybody to just assume that your problems are related to the OSA and insomnia. But---schedule an appointment with your PCP as well. Talk about OTHER potential causes of extreme daytime exhaustion. Request blood tests for all the following: A full thyroid panel; a CBC with differential and platelet count; vitamin D level; iron, folate, B12 levels; magnesium level; and diabetes test. This will either eliminate or uncover other potential reasons for your current exhaustion. If anything abnormal pops up in the blood work, then there's another underlying medical condition to treat. And you'll be one step closer to getting the daytime energy you so crave.

6) You write: "I don't drink or smoke, but I also know I don't get enough exercise. It's hard to find the energy when I am so exhausted all the time." As for the exercise: Start with baby steps. Take the stairs instead of the elevator if you are only going up one or two flights of steps. Park on the far side of the parking lot instead of that spot next to the door when you go to work or go to the store. Try to get at least a 20 or 30 minute walk outside every day. If you don't feel like you can walk very far or very fast, don't beat yourself up about it, but get at least a short walk in even when you don't feel like it. If nothing else, try to take a stroll around the block after breakfast or supper every day.

7) Buy yourself a copy of Sound Sleep, Sound Mind, by Dr. Barry Krakow. Lots and lots of practical advice on how to deal with chronic insomnia without medication. And he's also got some really useful information on the connections between OSA and insomnia and bad sleep. And a nice section on just how CPAP/BiPAP is supposed to work. Another useful book is Sleep Interrupted, by Dr. Stephen Y. Park, which is an excellent layman's introduction to just what OSA does to our sleep cycles.


Best of luck as you start out on this crazy adventure.

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ohwhatanight
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Re: No respiratory events but still lousy sleep

Post by ohwhatanight » Mon Feb 20, 2012 2:05 pm

Robysue - Thank you, thank you, thank you!! I had read your blog even before getting my CPAP and it was wonderful for helping me get in the right frame of mind about wearing my mask. Thanks for taking so much time to answer my questions and explain things.
robysue wrote:
Sleep study data and questions about that data
First I'm a bit confused about the number of respiratory events you had during your sleep study. First you write:
Hi, just finished my 4th night with CPAP. Before, my AHI was 8.7 - ...
and then you write
On my sleep study, I had 241 arousals in 194 minutes. (74.5/hr) 130 of those were non-respiratory.
This seems to indicate that you had 241-130=111 respiratory related arousals, presumably from apneas and hypopneas, in 194 minutes of sleep. That would lead to an AHI (or at least an RDI) in the neighborhood of

(AHI or RDI) = (111 events)/(194 minutes of sleep) = (111 events)/(3.23 hours of sleep) = 34.3

So first of all, can you clarify for us what your diagnostic AHI is and the number and type of events it was based on? And if your sleep study lists both an AHI and an RDI, can you give us both figures? Thanks.

My sleep study says: The patient slept a total of 194 minutes with a sleep efficiency of 53.9%. The patient's sleep latency was 30 minutes and REM latency was 2 hours and 54 minutes. The intermittent wake time during sleep was 135.5 minutes. Total time in bed was 360 minutes.

Patient exhibited 241 arousals, 111 associated with respiratory evens, 0 associated with periodic limb movements, 130 spontaneous arousals, for an arousal index of 74.5 per hour.

The average O2 saturation during non-REM sleep was 95.4% and the average O2 saturation during REM sleep was 92.1 (the lowest value during the night being 83%). The patient exhibited 0 obstructive, 0 central and 0 mixed apneic events and 28 hypopneas resulting in an overall Apnea-Hypopena Index (AHI) of 8.7 per hour. Loud snoring was present. Mean duration of hypopneas was 12.2 and max was 18.9. My AHI/hour was 8.7 total, 6.7 non-REM and 76.4 REM.

I spent 26.5% total sleep time in Stage N1
70.1% in Stage N2
.5% in Stage N3
2.8% in REM

(my total sleep time though was only 194 minutes with 135.5 minutes of intermittent wake time - so only about 60 minutes of actual sleep at these levels. 96.6% of that was in stage 1 or 2. So my understanding is that I only got about 2 minutes of sleep at stage 3 or REM.)


Questions:
Are the 130 non-respiratory arousals all simply labeled as "spontaneous"? Yes

Does the lab attempt to measure respiratory effort related arousals (RERAs)? If not, then it may be worth asking the doc if some or all of those arousals might be RERAs, which would indicate that you may be at the border between UARS (where the problem is mainly RERAs) and OSA (where the problem is mainly OAs and Hs). Treatment for both, alas, is CPAP. Not that I know of, but the SleepyHead data for the past 4 nights has shown some RERAs. I've also had a few OA, Hs and CAs each night, but my overall numbers were pretty low. Average AHI > 1.

Any mention of periodic limb movements on the sleep study? No - these don't seem to be a problem.

Just how much worse was this night (subjectively) than your normal sleep at home? It was actually pretty typical for a night at home. I have worse nights and some better nights, of course, but this was pretty normal for me.

Important questions about your insomnia
How long have you been taking the Ambien CR? How long has it been ineffective? I've been on this dose of Ambien for over 5 years and it has been ineffective for the majority of that time. However now I am psychologically dependent and have terrible anxiety at the thought of weaning off of it though I know I need to. This is something I want to address with the sleep doctor.

What other things have you tried to do for the insomnia through the years and how effective have they been? You say, " I am careful to have good 'sleep hygiene' as much as is practical." Please be more specific. What parts of good sleep hygiene do you practice? Which parts do you struggle with or ignore?

Good question (they all are!) I've been slowly trying to eliminate or work around anything that seems to interfere with my sleep. No caffeine after noon. My DH who is a very loud snorer has been banished to the far side of the house at night. I have to have the room very cool to sleep. Not warmer than 68*. I have two fans blowing air on me and making white noise. Otherwise the room is quiet and dark, no TV, radio, etc. I am very sensitive to touch, so I have 900 thread count sheets (think Princess & the Pea!). I have a fairly consistent nighttime routine of no TV of computer within 1-2 hours of sleep, and I try not to even engage in conversation then or do anything that might stimulate me or keep me awake such as deciding to clean out a closet at bedtime. I don't get in bed until ready to go to sleep. I go to the bathroom, take a sip of water, take my medications, read in bed for about 15 minutes then turn off the light. I generally can fall asleep within 15-30 minutes of getting in bed (within seconds of turning off the light after reading.) But within an hour, I am usually awake again and then from there I am waking up on regular basis all night long. When I do wake up and can't go back to sleep within just a few minutes, I get up out of bed and try to read until I am sleepy again.

Some habits I know I still need to change are:
I usually have a snack before bed and from what I am reading this may be interfering with sleep. I probably need to eat it much earlier or eliminate it.
I also need more exercise somehow but had 4 foot surgeries and a broken foot in less than 18 months so getting sufficient exercise has been a problem. (These were a couple of year ago, but I still have a lot of pain walking much.)
I work from home and most of my clients are in a different time zone so that often leaves me working until 9 PM. I go to sleep around midnight, but am often still thinking about work and need to find a way to shut down earlier.
My TV is in the bedroom, but there isn't really any other practical place for it. My DH watches endless sports downstairs in the evening. Watching a little TV at night helps me unwind and takes my mind off work, so I think it is a good thing. I generally only watch about 2 hours a night (if that) and shut it off at least an hour before bed. If all else fails, I may still need to change this and only read or something instead.


What kinds of things are known to make your insomnia worse? And I'm really looking for things beyond the obvious "lots of stress" kind of response. Is it easier or harder to sleep when the room is cold for example? Do weather changes affect your insomnia? Do you have issues like chronic headaches or joint pain that aggravate the insomnia?

When I am sick or congested, that definitely makes things worse so I have been trying to be more proactive about making sure my sinuses are clear all day. The humidifier in the CPAP is actually helping this a lot. I was waking up all night long with dry mouth before but haven't with the CPAP. If the room is too warm, I can't sleep at all. Pain meds keep me wide awake or cause very bad nightmares - so any time I have had a surgery or injury, sleep is almost nonexistent either from the pain or the meds. (I have a very long history of over 30 surgeries in my life so this has set a very bad pattern for me.) I don't have any chronic pain now. I can't sleep in strange places because I am so overly aware of the changes in room temp, noise, light, bedding, etc. I did surprisingly well for me in the sleep lab about those things though. Any kind of conflict in my life keeps me awake, so I try to avoid or resolve those quickly. I don't sleep well at all if I have to be up the next day early for some reason like catching a flight. It's almost not worth even trying then.

And of course, anxiety about not sleeping aggravates my insomnia the most!
Thanks for all the great advice too. I can tell you have "been there"! I will try all of them as I am desperate to get this to a more tolerable stage. Thanks for arming me with some good questions and things to talk to my doctor about tomorrow. I hoping she will be the type who listens and wants to help with all aspects of my sleep not just handing me a CPAP and expecting everything to be perfect now.

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Re: No respiratory events but still lousy sleep

Post by robysue » Mon Feb 20, 2012 5:18 pm

ohwhatanight wrote:Robysue - Thank you, thank you, thank you!! I had read your blog even before getting my CPAP and it was wonderful for helping me get in the right frame of mind about wearing my mask. Thanks for taking so much time to answer my questions and explain things.
It's my way of paying it forward. Without the good folks here who put up with me complaining bitterly about CPAP and insomnia AND making good suggestions, I would never have made it. And so I try to pay it forward when I see newbies who are having real difficulties with insomnia that goes beyond the standard problems of learning to sleep with the hose on your nose.

Here are some additional things to think about before your meeting with your sleep doc.

1) You need to have a clear understanding of exactly what kinds of things went into scoring the respiratory related arousals. The data on the sleep study seems inconsistent and you need to have that inconsistency cleared up so you don't spend time worrying about just what the numbers actually mean.

In particular, you write:
My sleep study says: The patient slept a total of 194 minutes with a sleep efficiency of 53.9%. The patient's sleep latency was 30 minutes and REM latency was 2 hours and 54 minutes. The intermittent wake time during sleep was 135.5 minutes. Total time in bed was 360 minutes.

Patient exhibited 241 arousals, 111 associated with respiratory events, 0 associated with periodic limb movements, 130 spontaneous arousals, for an arousal index of 74.5 per hour.

The average O2 saturation during non-REM sleep was 95.4% and the average O2 saturation during REM sleep was 92.1 (the lowest value during the night being 83%). The patient exhibited 0 obstructive, 0 central and 0 mixed apneic events and 28 hypopneas resulting in an overall Apnea-Hypopena Index (AHI) of 8.7 per hour. Loud snoring was present. Mean duration of hypopneas was 12.2 and max was 18.9. My AHI/hour was 8.7 total, 6.7 non-REM and 76.4 REM.
(emphasis added)
You need to find out from the doc just what things got scored as "respiratory related arousals" since only 28 of them could have been associated with hypopneas. It could be that the hypopneas in your AHI were ones that met the Medicare-imposed standard (Rule 4A hypopneas, that require an associated 4% O2 desat) and that gobs of those other 83 respiratory-related arousals might have met Rule 4B standards, which only require the drop in airflow AND an arousal. Or it could be these respiratory related arousals represent you waking up from your OWN snoring. (That ever happen at home?) But in either case, you need to ask the doc just what the difference between a "respiratory related arousal" and a "hypopnea" actually is. You might also want to ask the doc whether your PSG data more typical of UARS (upper airway resistance syndrome), which is a variation of sleep disordered breathing. UARS is also treated with CPAP by the way.

2) You need to ask a polite, but pointed question about the 130 spontaneous arousals: What's the doc's best guess as to why you are arousing yourself so often if these arousals are NOT respiratory related? You might want to do a forum search for "alpha intrusions" in sleep as well. You need to talk about this because it seems that until your overall arousal index is significantly reduced, you will continue dealing with severely fractured sleep architecture. Be prepared for the doc to say she really doesn't have the answers. But you need to get that question out in the open even if the doc doesn't have any concrete ideas about what to do about them. (I'm still wondering if there really is some kind of underlying pain problem or if you've just trained yourself to wake up frequently as an insomniac).

3) Your sleep study says that "Loud snoring was present." Did it surprise you find out that you snore? And snore loudly? I ask because you say that you banished hubby to the far side of the house because his loud snoring disturbs your sleep. (You wouldn't be the first snorer who's done this.) But because of your own LOUD snoring and the fact that you acknowledge the sound of snoring aggravates your insomnia, it's even more important to tease out whether any of those large numbers of "respiratory related arousals" or "spontaneous arousals" were, in fact, due to your own snoring waking you up. (You wouldn't be the first snorer who's had this problem either.) My point is this: If the noise of snoring is something that makes your insomnia worse, then it could be that your own snoring is a factor in causing some of your insomnia problems. And, in the long run, the CPAP should reduce or eliminate your own snoring, and that may help with your insomnia. For the doc, you might want to ask whether snoring was also present on the titration study.


4) You need to ask the doc what kinds of things you can do to improve your overall sleep architecture. Sure the CPAP should help---once you are able to sleep deeply with it on your nose. (By the way, do you have the sleep report for your titration study as well as the diagnostic study? If not, get a copy of it too.) Right now it appears that not only are you NOT sleeping enough, but also you are NOT getting enough REM and you are NOT getting enough Stage 3 sleep if this sleep study is at all typical of your average night's sleep. Ambien is not supposed to mess with sleep architecture, but then the Ambien is NOT working for you either.

Sleep hygiene is part of improving your sleep architecture, but not all of it: For me a sleep restricted schedule suggested by my sleep doc's PA wound up being the critical tool for teaching my body the art of learning how NOT to wake up all the time and the skill of how to quickly get back to sleep before a wake up becomes a real issue for my sleep continuity. For others, judicious use of an effective sleep medicine together with sleep hygiene seems to do the trick. Ask your doc about NON-drug treatments for insomnia as well as what might be a better sleeping pill for you than the Ambien has been. And if your sleep doc's only idea on treating insomnia is prescription sleeping pills, then you might want to start looking for a good CBT with experience in dealing with insomnia.

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Re: No respiratory events but still lousy sleep

Post by kteague » Mon Feb 20, 2012 6:21 pm

You've already received excellent information thusfar so there is little I can add in that respect. I may have missed it, but have you evaluated all meds and supplements you are taking for potential to affect sleep?

What I did want to contribute is to discussion of sleeplessness and it's misery. I once wrote, "My pursuit of sleep is like a greased pig chase at a county fair - it's easy to grab, but nearly impossible to hold on to." My cause (limb movements) may be different from yours, but I certainly understand your frustration. Back in the days when I still had to get up and go to work and perform after yet another one of those nights (years for me), the looming prospect of the alarm clock going off caused such dread and worry that my mindset wasn't conducive to sleep. At some point after I no longer had to answer to the alarm, I was able to release some of that worry. In spite of my track record, every night I went to bed fully expecting to sleep. When it didn't happen, I tried to tell myself I would accept this as a time to rest and be grateful if I could achieve that. It's so hard to be ok with not sleeping when we know what the next day holds for us. All of us who have been there can sympathize with you.

With you being new to treatment, what is yet unknown is how much or how soon your brain will be able to sleep once #1 - the air and equipment become your new norm for sensations felt while trying to sleep, #2 - your brain has time to heal and develop new patterns that include sleep. It's too soon to think it won't happen. The sleep deprived are susceptible to discouragement and desperation, and rightly so. I just want to encourage you that you are on the right path and that it is reasonable to expect to see incremental results as you continue to assure your OSA is therapeutically treated while you pursue identifying other possible contributors. Wishing you the best as you go forward - from one Buckeye to another.

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ohwhatanight
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Re: No respiratory events but still lousy sleep

Post by ohwhatanight » Mon Feb 20, 2012 6:30 pm

Thanks again for such a helpful and thorough reply! I plan on writing down a list of questions to ask the doc tomorrow based on your suggestions. There are several things I wouldn't have thought to ask such as the inconsistency in the respiratory related arousals & hypopneas. I look forward to the day when I can "pay it forward" to others here!

About the snoring: according to everyone who has ever lived with me, I never snored until the past 5 years or so when I started gaining some significant weight (I've gained 80 lbs in the past 5 years). Hubby was banned because of his "fork stuck in the garbage disposal" snoring. (I am certain he has severe OSA but he refuses to have it treated.) I laid awake for the first 20 years we were married listening to him or waking him up by punching him. But now I wake myself up occasionally with my own snoring too. I noticed from the SleepyHead program that my snoring is pretty heavy for about 2 hours every night. But that usually doesn't correspond with my breathing events or the times I have woken up.

I suspect my weight issues have a lot to do with my lack of sleep - and my lack of sleep has a lot to do with my weight. I lost over 100 lbs several years ago through strict dieting and exercise but gained it all back and more in record time. Sleep was still a huge issue even when I was at my ideal weight. A real chicken vs. egg quandary. I am really hoping SOMETHING will give here and I'll be able to break this cycle and improve in both areas.

If my sleep doctor were to ask ME what I thought was the problem with my sleep, my guess would have to be that it is somehow related to a chronic PTSD type of thing - some kind of a hyperalert state. I feel like someone in the trenches keeping watch all night, barely dozing but always ready to react if there is danger (even though there is no danger). There are lots of good reasons why I might be hypervigilant and maybe exploring them with therapy might be a good idea if nothing else seems to pan out. I am assuming if this is a learned behavior, it can be unlearned, right? I imagine it would take a long time though, but clearly, just slapping a sleeping pill on the problem hasn't solved anything.
Last edited by ohwhatanight on Mon Feb 20, 2012 6:41 pm, edited 1 time in total.

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Re: No respiratory events but still lousy sleep

Post by ohwhatanight » Mon Feb 20, 2012 6:40 pm

kteague - Thanks for the kind words of encouragement! I know you are right, it is too early to really tell how helpful the CPAP will be overall to my sleep. I've been discouraged for such a long time so it is hard to grasp onto much hope. (I love your greased pig analogy!) But I also realize that being discouraged and fearful of not getting enough sleep each night can pretty much guarantee a self-fulfilled prophecy! So, I need to keep working on my attitude and take things one night at a time. Thanks for the pep talk. Maybe I need to go read the success stories.

I work from home and am my own boss so I can generally work around a really awful night of no sleep. I am grateful there isn't the pressure to get up and drive to an office at 7 AM every morning - I can't imagine how people with sleep issues do that. I really feel for them.

Go Buckeyes!!!

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Re: No respiratory events but still lousy sleep

Post by robysue » Mon Feb 20, 2012 6:54 pm

ohwhatanight,

You've got most of the basics of sleep hygiene covered, but there are things that you might need to work on in order to get most of out of using good sleep hygiene to improve your sleep.

You might need to tighten up on the caffeine restriction (no coffee after 10:00 am) or even eliminate caffeine altogether.

Do you look at the clock as soon as you wake up? If so, move the clock so you can't do that!

You should rethink the tv in the bedroom issue. You say that your bedroom is the only practical spot for it, so the question becomes: Do you lie down in bed when you're watching your nightly tv? If so, that might need to be reexamined. If you can't move the tv out of the bedroom, can you at least move a chair into the bedroom so that the bed itself can be reserved solely for sleeping?

Bedtime reading can a double-edged sword: Yes, reading is relaxing. And it takes the mind far away from work and day-to-day worries. But it is also possible to get so wrapped up in the reading that it becomes a very stimulating activity. (Staying up all night reading a good book is really easy for me to do---regardless of how physically tired I am. ) So you might need to do some critical thinking about your night time reading: Are you inadvertently rewarding yourself for waking up at night by giving yourself the pleasure of reading a few more pages of that book you are enjoying so much? If so, then maybe you need to resist the urge to read when you wake up and have trouble getting back to sleep right away. Instead of getting up to read, get out of bed and do something much more boring and much less stimulating to your mind. Maybe you could just sit in the semi dark of another room for a few minutes not doing ANYTHING---if you can keep your mind from wandering off into the night time worrying about all those things that you can do nothing about when it's 3:00 am and you're not sleeping. Maybe you could do a bit of mindful relaxation techniques, or meditation, or deep breathing exercises that help clear your mind.

You write:
I have to have the room very cool to sleep. Not warmer than 68*. I have two fans blowing air on me and making white noise. Otherwise the room is quiet and dark, no TV, radio, etc. I am very sensitive to touch, so I have 900 thread count sheets (think Princess & the Pea!).
I'm very sensitive to many kinds of physical stimuli---as in I know exactly what you mean by the Princess and the Pea reference. And chances are your sensitivity to touch will play a big role in your adjustment period. There's a lot to get used to with CPAP---and a lot of that stuff involves things touching you or blowing on/in you. For mask issues, pay attention to your own reactions. If the plastic feel of everything bugs you, get hose covers and mask pads and/or liners. If you can't sew, tell Padacheek what you need, and she'll design something for you at a reasonable price. And remind your highly sensitive self that eventually you will get used to all the stuff that's currently irritating you. For example, during the first three months, the CPAP tickled the back of my throat in a most annoying way whenever I was lying in bed fighting for sleep. I don't notice that anymore and I can't even remember when that sensation finally started to fade away.

I do find it unusual that you are sleeping with two fans blowing air directly on you if you're sensitive to things touching you. Have you always slept with the fans? Or are they a new adaption in trying to deal with the CPAP? the insomnia? or both?

Having two fans blowing directly on me all night long would drive me insane: I hate sleeping under any kind of a breeze at all. But I do like a cool, or more honestly, a COLD bedroom. For me, the solution was for me to be a draconian dictator: The house thermostat is programmable and it goes down to 59 about an hour or two before my bedtime. That way my bedroom has had a chance to cool off from the daytime temperature of 65-67 degrees before I go to bed. Yes, the makes everybody in the household have to know what blankets, sweaters, and slippers are, but what the hey, if Momma can't sleep, Momma ain't happy, and if Momma ain't happy, nobody's happy. As for summers? I hate summertime sleeping since I don't like AC, but with Kaa (my BiPAP), I find that I just cannot sleep at all if it's hot and humid in the house. And so unlike normal people, we have to crank the AC way down to the mid-60's when I go to bed so I can sleep. I feel guilty about the carbon foot print of our night time AC usage, but then again, I have to be able to sleep with Kaa on my nose in the summer too.

As for white noise, that can help on multiple fronts. But here again, I've found that a bit of very soft music playing for the entire night helps more than white music. The choice of music, however, is pretty important. It's got to be something soothing, but also something that you don't get wrapped up in waiting for your favorite song to come on or bemoaning the fact that you've once again woken up to that least favorite song on the album. For me what works are Gregorian Chants 200 or more of them on my iPod which is inserted into an iHome every night and I play them all night long. They have this ethereal quality to them: They all sound enough alike that I can't really distinguish "favorites" and yet they are all different enough that I can't reliably tell where in the playlist I wake up. And since they're all in Latin, I can't wake up and start singing along waiting for my favorite song.
I have a fairly consistent nighttime routine of no TV of computer within 1-2 hours of sleep, and I try not to even engage in conversation then or do anything that might stimulate me or keep me awake such as deciding to clean out a closet at bedtime.
It's possible that you are overdoing the avoidance of activity close to bedtime. You shouldn't need to be a hermit and isolate yourself from everything just to relax enough to go to bed. You want to relax and help yourself get into a good mood before going to bed. Face to face conversation with family members is often a good way to relax. You may also want to consider doing a bit of light yoga or a bit of mindful relaxation techniques as an active way for preparing your mind to relax at night rather than just trying to avoid stimulating activities.
Some habits I know I still need to change are:
I usually have a snack before bed and from what I am reading this may be interfering with sleep. I probably need to eat it much earlier or eliminate it.
Food is also a two-edged sword. Going to be hungry is a good way to make sure you'll wake up hungry in the middle of the night. But some bedtime snacks are worse than others. A small snack shouldn't be a problem---unless you are dealing with aerophagia from the CPAP or you have reflux issues.
I also need more exercise somehow but had 4 foot surgeries and a broken foot in less than 18 months so getting sufficient exercise has been a problem. (These were a couple of year ago, but I still have a lot of pain walking much.)
Pain issues by themselves can disrupt sleep. Are there things you can do to ease the foot pain when it's close to bedtime and you don't want to take pain medication? Do foot rubs help or hurt? What about soaking the feet in a warm bath?

Don't ignore this factor. But don't expect the sleep doc to be much help. The doc you need help from here is the foot doc who did the surgeries. How much pain were you expected to have long term? And what kinds of things were you told to do to relieve that pain?
I work from home and most of my clients are in a different time zone so that often leaves me working until 9 PM. I go to sleep around midnight, but am often still thinking about work and need to find a way to shut down earlier.
My TV is in the bedroom, but there isn't really any other practical place for it. My DH watches endless sports downstairs in the evening. Watching a little TV at night helps me unwind and takes my mind off work, so I think it is a good thing. I generally only watch about 2 hours a night (if that) and shut it off at least an hour before bed. If all else fails, I may still need to change this and only read or something instead. (emphasis added)
Aha! You have closure problems, as Dr. Krakow puts it in his excellent book. Lots of insomniacs have problems with bringing closure to the end of their day. Turning the mind off---off of work, off of the day-to-day irritations, off the day-to-day worries of living is an important strategy to being able to sleep well. And it is NOT a natural skill for many of us. If the tv helps you unwind, then I'd continue to watch it---particularly if what you are watching to unwind is NOT violent and NOT gory. Shutting it off an hour or so before bed is a good idea since tv's do emit blue light, which can disrupt sleep cycles. But there's no need to eliminate it. However, since the tv is in your bedroom, we come back to the question of whether there's a chair or something else for you to sit in/on other than the bed when you're watching tv in your room. If you're lying in bed watching the tv, think hard about whether you can move a chair into your bedroom.
When I am sick or congested, that definitely makes things worse so I have been trying to be more proactive about making sure my sinuses are clear all day. The humidifier in the CPAP is actually helping this a lot. I was waking up all night long with dry mouth before but haven't with the CPAP.
Keep reminding yourself of this POSITIVE that you are already getting from the CPAP. Keep track of all the little positives while you are working through the adjustment period. Every little victory helps.
If the room is too warm, I can't sleep at all. Pain meds keep me wide awake or cause very bad nightmares - so any time I have had a surgery or injury, sleep is almost nonexistent either from the pain or the meds. (I have a very long history of over 30 surgeries in my life so this has set a very bad pattern for me.) I don't have any chronic pain now. I can't sleep in strange places because I am so overly aware of the changes in room temp, noise, light, bedding, etc.
There are two things that occur to me as I read this: You have a long pattern of not sleeping (no surprise) and you have a long pattern of not expecting to sleep. And that long pattern of not expecting to sleep seems to have become another source of food for your insomnia monster: Going to bed expecting problems with getting to sleep or staying asleep often becomes a self-fulling prophecy. And my guess is that even in the safety of your own familiar bedroom there's a part of your mind that is automatically focusing on what are the potential sleep stealers tonight? even as you are trying to relax enough to go to sleep.

And of course, that highly sensitive body of yours is also coming into play here too. My guess is that you think that you notice and are bothered by sensory things that others don't notice---and that you're probably right in that self assessment. You're going to have to come to grips with living in your body AND also learn how to teach your body to be a bit more tolerant of changes in your environment. Another book you might want to look for is called The Highly Sensitive Person, by Elaine N. Aron. To get a quick sense of what kinds of things she means by a "highly sensitive person", you should go to her website and take the Self test she has posted there.
Any kind of conflict in my life keeps me awake, so I try to avoid or resolve those quickly. I don't sleep well at all if I have to be up the next day early for some reason like catching a flight. It's almost not worth even trying then.
No one likes conflict and serious, significant conflict tends to aggravate anybody's sleep. But you also seem sensitive to changes in your daily routine, much more so than most people. And that brings me back to the idea that you may be one of Aron's Highly Sensitive Persons.
And of course, anxiety about not sleeping aggravates my insomnia the most![/color]
Worrying about sleep and insomnia is the major source of sustenance for many an insomnia monster. Turning off this anxiety when you are not sleeping well is not a natural skill for insomniacs, but it can be learned. Krakow speaks at length about this in Sound Sleep, Sound Mind. One critical tool is to ditch looking at the clock during the night when you are not sleeping. Another is realize that most insomniacs sleep far more than they think they do: We insomniacs have trouble at night distinguishing between Stage 1 sleep, Stage 2 sleep, and WAKE. We often are in Stage 1 or Stage 2 sleep for a long time before we wake up, but when we wake up we think we've been awake for a long time. Simply knowing that this is how our minds work can help put us at ease when we wake up thinking we've been tossing and turning for a long time.

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Re: No respiratory events but still lousy sleep

Post by robysue » Mon Feb 20, 2012 7:02 pm

ohwhatanight wrote:(my total sleep time though was only 194 minutes with 135.5 minutes of intermittent wake time - so only about 60 minutes of actual sleep at these levels. 96.6% of that was in stage 1 or 2. So my understanding is that I only got about 2 minutes of sleep at stage 3 or REM.)
Ah, like any "normal" insomniac you think the numbers are worse than they are, even when the correct numbers are bad enough to begin with.

First, you had a Total Time in Bed (TIB) of 360 minutes. Latency to sleep was 30 minutes. That means that you were in bed for 330 minutes after you FIRST fell asleep. This period AFTER you first fell asleep is often referred to as the "Total Sleep Period". The Total Sleep TIME is the time during the TSP that you were actually asleep. The "wake" in the TSP is often referred to as the "Wake After Sleep Onset" time, or WASO. Note that TST + WASO = TSP. In your case,
  • TST = 194.5
    WASO = 135.5
    TSP = 330
That means that of those 330 minutes in your Total Sleep Period, you were AWAKE (intermittently) for a grand total of 135.5 minutes and that means you were ASLEEP (intermittently) for a grand total of 194.5 minutes. In other words, you were ASLEEP for about 3.25 hours, and not the one hour that you thought you were asleep. The "intermittent" part of all this means that you did NOT have one, long 135 minute WASO period. Rather, you sleep for a while, you were awake for awhile, you slept some more, you were awake some more, and so on and so forth through the whole night. The sum total of the lengths of ALL the WASO periods was 135.5 minutes. The sum total of all the sleep periods was 194.5 minutes.

Your sleep staging indicates that you were in REM for 2.8% of your TST of 194.5 minutes. That means you got
0.028*194.5 = 5.446 minutes of REM sleep. And, by the way, you also need to understand your REM AHI = 76.4 in the context of how much REM you got. My calculations show you must have had SEVEN hypopneas occur in those 5.446 minutes of REM since would make your REM AHI equal to:

(7 event)/(5.446 minutes of REM) = (7 event)/(0.908 hours of REM) = 76.4

And since you only had 28 hypopneas all night long, that means a fourth of them occurred during your one brief REM cycle. But the point is that the actual REM AHI number is LESS important than the fact that just as soon as you finally got to REM, the you started having significant numbers of events very close together and that 1/4 of all your hypopneas occurred in the one five-minute long REM cycle. And if that's what happens every night in your own bed when you don't use the CPAP, that's a real sleep disordered breathing problem and it's no wonder you why you might not get enough REM on a nightly basis without the CPAP. And being severely short on REM does lead to some severe daytime symptoms.

On your sleep study, 0.5% of your total sleep time was Stage 3 (deep, NREM) sleep. That amounts to about 58 SECONDS of stage 3 sleep. Stage 3 is where your body makes physical repairs and,again, if this night's sleep was typical, your body is getting almost no time to make the repairs to deal with the every day wear and tear on your body. Again, being severely deprived of Stage 3 sleep can lead to daytime problems.

So overall, you sleep stage numbers indicate you got more sleep than you might have thought (3.25 hours instead of 1 hour), but that the amount of time in REM (5.5 minutes) and Stage 3 (58 seconds) was SEVERELY REDUCED.

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Re: No respiratory events but still lousy sleep

Post by robysue » Mon Feb 20, 2012 8:17 pm

ohwhatanight wrote:But now I wake myself up occasionally with my own snoring too. I noticed from the SleepyHead program that my snoring is pretty heavy for about 2 hours every night. But that usually doesn't correspond with my breathing events or the times I have woken up.
Keep in mind that even insomniacs have to be be AWAKE for a few minutes before they will remember the wake in the morning. The question for the doctor is: Were some of those 241 arousals caused by your own snoring arousing you?

And if SH is showing pretty heavy snoring for two hours every night, then the question becomes, Are you still arousing frequently during those two hours because of your own snoring? If so, you may need a small pressure increase to try to deal more effectively with the snoring.
I suspect my weight issues have a lot to do with my lack of sleep - and my lack of sleep has a lot to do with my weight. I lost over 100 lbs several years ago through strict dieting and exercise but gained it all back and more in record time. Sleep was still a huge issue even when I was at my ideal weight. A real chicken vs. egg quandary. I am really hoping SOMETHING will give here and I'll be able to break this cycle and improve in both areas.
Yes, this really is a real chicken and egg problem: Regardless of which came first in your case, untreated OSA and sleep problems feed weight problems by making it easier to gain weight and harder to loose it, and weight problems feed untreated OSA and sleep problems by making it easier for your upper airway to collapse.

The good news is: Once you manage to learn to sleep better with a hose on your nose, then it may very well become much easier to deal with the weight issues. And as you are able to lose some of the excess weight, your sleep (with the CPAP) may continue to improve in its nightly quality. And who knows, if you succeed in getting back down to your ideal weight, you may find that you need less pressure.

But keep in mind that the feedback loops where each problem makes the other problem worse have been in place a long time. You may well have had OSA for the entire 5 years that you've been snoring. And so it's important to have reasonable expectations that it will take some time for you to start feeling better. And more time for those feedback loops to really be broken.

If my sleep doctor were to ask ME what I thought was the problem with my sleep, my guess would have to be that it is somehow related to a chronic PTSD type of thing - some kind of a hyperalert state. I feel like someone in the trenches keeping watch all night, barely dozing but always ready to react if there is danger (even though there is no danger). There are lots of good reasons why I might be hypervigilant and maybe exploring them with therapy might be a good idea if nothing else seems to pan out. I am assuming if this is a learned behavior, it can be unlearned, right? I imagine it would take a long time though, but clearly, just slapping a sleeping pill on the problem hasn't solved anything.
Several thoughts.

1) OSA consists of real episodes of real breathing problems that occur when you are sleeping. Some folks liken it to trying to sleep while being suffocated on and off all night long. And for some people that does lead to insomnia problems---it's as if there is an unconscious desire to NOT go to sleep because some part of your body or mind dreads the night time battle to get enough oxygen. And perhaps some of your hyperalert state while sleeping is due to this phenomenon. The trick in this case, however, is to realize that it takes time to retrain and convince that part of your body or mind that's been on vigil all night that now, with the CPAP mask on your nose, it is ok to relax and fall deeply asleep. And unfortunately it's easy for that primitive part of subconscious that's been hyper vigilant all these years to mistake the CPAP (and all the new sensory stimuli it involves) as a NEW THREAT!!!!! to your sleeping body. And when that happens, the insomnia monster finds a new source of food and grows fat and strong. The only way out that I know of is to keep on using the mask night after night even with the insomnia to deal with. You have to give that stubborn unconscious but irrational part of your mind that's been hyper vigilant all these years plenty of time to realize that the CPAP is NOT going away. And that the CPAP is, in fact, your friend. And that the CPAP will allow that part of your brain to safely relax without there being threat of multiple near suffocations every time you hit REM every night.

2) Sleeping in a hyper vigilant state all night is indeed a learned behavior. And many things can induce it, including real traumatic events that trigger real PTSD. But if you have never had a serious traumatic event in your life, then it's possible you learned the behavior at many different junctions in your life: It may have started at times when you needed to be a bit more aware of what was going on because you were sleeping in a new and strange environment with potential or imaginary threats that didn't materialize when you were a kid. And you started to refine the skill of sleeping in a hyper vigilant state as you moved into full adulthood when there was the need to be able to wake up suddenly and quickly to take care of the needs of another---either a sick pet, parent, or hubby or, more typically, a newborn child. And then when the OSA started to get noticeable in your own body? The sleeping in a hyper vigilant state was being reenforced by the need to arouse yourself multiple times an hour to force that upper airway to open widely up instead of collapsing completely. It's that hyper vigilant part of your unconscious that just might be responsible for you having no apneas during your sleep study: That hyper vigilant part has come to notice when your airway is starting to collapse and its job these last five or more years has been to wake you up enough BEFORE that airway is fully collapsed.

3) If one of the real roots of your insomnia is a pattern of learned hyper vigilant sleeping that was being feed by the untreated OSA for a number of years, then that could explain why the Ambien has been so ineffective for all these years: That hyper vigilant unconscious part of your mind is saying to your conscious mind as the conscious mind takes the Ambien in order to sleep: You've got to be kidding me, right? You don't really want to sleep do you? You know what happens when you finally fall asleep don't you? The UPPER AIRWAY collapses! And that's BAD, BAD, BAD! And in the end, when the hypopneas start to happen, it's the hyper vigilant, unconscious mind that wins the battle of whether you sleep or not.

4) But now that the CPAP is preventing the vast majority of the hypopneas from occurring, the part of your mind that remains hyper vigilant while you are asleep is still having a hard time letting go of being hyper vigilant. But since the hyper vigilant sleeping is indeed a learned behavior, it can be unlearned. And the way to unlearn that behavior is partially based on patience: Use the machine all night long, every single night. That way eventually your unconscious figures out that you're no longer having the upper airway collapse all night and collapse super frequently every time you get into REM. And as it becomes the accustomed to the new new and accepts the new situation as normal, it should begin to figure it out and start to let go of some of that hyper vigilance. Counseling with a psychologist or other therapist who is experienced in cognitive behavior therapy may speed that process along, possibly saving you several months of agony, particularly if you having other issues such as anger at the machine or anger with yourself for developing OSA. So if your insurance will pay for counseling and if you are interested in it, it's a decent idea to pursue. Just make sure the counseling focuses on the practical issue of retraining your sleep behaviors that are feeding the insomnia rather than deeper, but less practical issue of figuring out why you learned these behaviors in the first place.

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