No respiratory events but still lousy sleep

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
ohwhatanight
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Re: No respiratory events but still lousy sleep

Post by ohwhatanight » Mon Feb 20, 2012 8:32 pm

Robysue - I think you are my new best friend!! Thanks again for such a wonderfully informative reply and for taking this time to help me. You are so kind!

I have a recliner in the bedroom and I never watch TV from bed. I try to keep getting in bed to sleep as separate from everything else as possible.

There have been times I've been so engrossed in a book that I push through my need to sleep to finish One More Chapter (which can turn into 100 more pages if I am not careful.) I've been trying to limit my reading now to only about 15 minutes or so a night. It's been tough since I really love to read, but I also really love sleep when I can get it. So no more "pushing through".

The fans are actually a fairly new development over the past couple of years. I started using them when I was having lovely night sweats but even though those no longer are a problem, I kind of got addicted to the white noise and gentle breeze on my face. Now, when I don't have that, I am overly aware of other noises and sensory things such as temperature changes, an itch on my leg, a lumpy pillow, etc. The air on my face tends to ground me in a way - so whatever works. I think having that for the past couple of years made it a bit easier for me to adjust to the CPAP air - that part doesn't bother me at all. I also am not consciously aware of the mask, hose, etc after just a few minutes of putting everything on. I have bookmarked the Self Test you suggested and will look into the books as well. I do think I am overly sensitive to stimulii. I always used to say that my husband's snoring keeping me awake was due to 2 things - his loud snoring and my extra sensitivity to it. I think you are really onto something here and I definitely need to explore this.

I've tried listening to music at night and even bought an iPod and loaded it with the most relaxing music I could find. It helped on nights when my mind was really racing - it was enough of a distraction to drown out other thoughts. But the music an over-stimulus to me if used all the time since I find myself focusing on it too much, the rhythm, anticipating the next phrase, etc. Also the ear buds gave me a underwater kind of sensation but having the music outside of my head made me focus too much on my external environment. Still, if I have to travel, I take the iPod because listening to music is still better than all the strange noises. I also tried downloading some relaxation tapes with guided imagery and that sort of thing. They were helpful to a degree for a while, but not for very long before they became just annoying.

I suppose I should clarify the avoiding conversations before bedtime. My mother used to call every night for over an hour and inevitably say something that would get me all worked up. So that's the kind of engagement I avoid now, not the normal interactions at home. Some relaxation exercises sound like a good idea. I don't currently have any pain, but I suspect that having to deal with pain for so long has further interrupted my sleep patterns.

I read a portion of Dr. Krakow's book online today after you mentioned it and the topic of closure problems really stood out to me. So, I will order the book. I definitely have trouble finding my "off switch". As I said in another post above this one, I also think I have some chronic PTSD type issues that are making me hyper alert. Added to that is the usual expectation that I won't sleep well - so I don't. I need all the help I can get to break that cycle.

Thanks for clarifying the numbers for me. I thought after I posted that it didn't seem right, that maybe I was going by the wrong total sleep number. Even still, my numbers suck! I saw your suggestion on another thread of turning off the CPAP and back on again when you wake up to record how many times you actually wake up. That's a great idea and would keep me from getting as obsessed about it as writing it down would. I'll hide my clock tonight too.

I'll let you know how my appointment goes tomorrow and if the doctor has anything helpful to offer.

Sleep well and have a great night!

ohwhatanight
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Re: No respiratory events but still lousy sleep

Post by ohwhatanight » Mon Feb 20, 2012 8:45 pm

What you said about hyper vigilance and OSA makes perfect sense! I can totally get that my mind probably fights sleeping as a self-protective mechanism. Hopefully as the OSA is treated longer and my brain realizes I am not going to be deprived of breathing, that part will go away.

I have had some pretty major traumas in my life and I am sure they also play a big part because my hyper vigilance predates my OSA by about 30 years. Though I have had counseling for a couple of recent events, I've never had any counseling for some significant things in my past that probably still get triggered often. Probably a good idea.

ohwhatanight
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Re: No respiratory events but still lousy sleep

Post by ohwhatanight » Tue Feb 21, 2012 6:35 pm

Hi - thought I should post a follow-up for anyone reading this thread.

I went to my sleep doctor today armed with a great list of questions (thanks robysue!) and was told my titration study showed I had HUGELY improved sleep stages with the CPAP. They were crazy good. I was truly shocked.

My staging levels were:
Stage N1: 5.9%
Stage N2: 31.3%
Stage N3: 29.5%
REM: 33.3%

The 130 spontaneous arousals I had during the first study turned out to be RERAs. So all 241 arousals were respiratory related (meaning I didn't have any mysterious other reasons for arousals) and can benefit from CPAP therapy. During the titration study, I was down to 68 total. My arousal index went from 74.5 to 13.3. I am a bit frustrated that they didn't give me a copy of the report the past two weeks that I requested it. I could have been spared a lot of needless worrying about never being able to sleep good enough since this shows I am capable of it after all. It's amazing how much relief seeing a bunch of numbers can bring.

She told me to stay on Ambien at least through my 30-day initial period. I had such great numbers my second night while I was on it (I was on it the first night too) that she thinks I might still benefit from it and can think about weaning off of it after my sleep has stabilized at a decent level consistently.

I suppose I need to attribute my lousy sleep the last few nights to (1) getting used to the whole CPAP thing (2) not enough hours in bed to begin with and (3) way too much anxiety! And all those things are fixable - woohoo!!!

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Pugsy
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Re: No respiratory events but still lousy sleep

Post by Pugsy » Tue Feb 21, 2012 9:24 pm

ohwhatanight wrote: I am a bit frustrated that they didn't give me a copy of the report the past two weeks that I requested it. I could have been spared a lot of needless worrying about never being able to sleep good enough since this shows I am capable of it after all. It's amazing how much relief seeing a bunch of numbers can bring.
Make your own reports. You can use SleepyHead. Links for it are in my signature line.
The data is on your SD card. Super easy and then you can see for yourself how each night is going.

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ohwhatanight
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Re: No respiratory events but still lousy sleep

Post by ohwhatanight » Tue Feb 21, 2012 9:40 pm

Pugsy wrote: Make your own reports. You can use SleepyHead. Links for it are in my signature line.
The data is on your SD card. Super easy and then you can see for yourself how each night is going.
I've been viewing my data daily with SleepyHead - what a great program! The part of the report I was frustrated about not getting until now was the EEG info on the sleep stages since that's where my anxiety was. I'd love it if we had that info at home somehow!

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deltadave
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Re: No respiratory events but still lousy sleep

Post by deltadave » Wed Feb 22, 2012 4:24 am

ohwhatanight wrote:The 130 spontaneous arousals I had during the first study turned out to be RERAs. So all 241 arousals were respiratory related (meaning I didn't have any mysterious other reasons for arousals) and can benefit from CPAP therapy. During the titration study, I was down to 68 total. My arousal index went from 74.5 to 13.3.
That does not seem corrrect to me. If original Sleep Time was 194 minutes and AHI was 8.7 and there were 111 respiratory arousals, then that meant there were 28 apneas and hypopneas, leaving 83 as RERAs for an RDI of 34.3.

Spontaneous arousals, by definition, are non-respiratory, non-PLM-related.
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Carmen
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Re: No respiratory events but still lousy sleep

Post by Carmen » Wed Feb 22, 2012 4:37 am

Welcome to the club--I wake up all night long. What's really frustrating is that the doctors don't seem to consider it to be a particularly urgent problem to fix. For months now, it seems to be some random test and we'll see you in a few weeks. I keep bringing up the hormonal issue because I am, after all, a menopausal woman, and keep getting the "estrogen causes cancer" speech. After a while, it feels like you're slogging through quicksand.

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robysue
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Re: No respiratory events but still lousy sleep

Post by robysue » Wed Feb 22, 2012 8:31 am

deltadave wrote:
ohwhatanight wrote:The 130 spontaneous arousals I had during the first study turned out to be RERAs. So all 241 arousals were respiratory related (meaning I didn't have any mysterious other reasons for arousals) and can benefit from CPAP therapy. During the titration study, I was down to 68 total. My arousal index went from 74.5 to 13.3.
That does not seem corrrect to me. If original Sleep Time was 194 minutes and AHI was 8.7 and there were 111 respiratory arousals, then that meant there were 28 apneas and hypopneas, leaving 83 as RERAs for an RDI of 34.3.

Spontaneous arousals, by definition, are non-respiratory, non-PLM-related.
DeltaDave,

I agree with what you are saying, but ...

What if the lab doesn't use the esophageal manometry needed to measure the esophageal pressure drop that marks a RERA? In that case, could the arousals be labeled as "sponataneous"?

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deltadave
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Re: No respiratory events but still lousy sleep

Post by deltadave » Wed Feb 22, 2012 7:54 pm

robysue wrote:
deltadave wrote:
ohwhatanight wrote:The 130 spontaneous arousals I had during the first study turned out to be RERAs. So all 241 arousals were respiratory related (meaning I didn't have any mysterious other reasons for arousals) and can benefit from CPAP therapy. During the titration study, I was down to 68 total. My arousal index went from 74.5 to 13.3.
That does not seem correct to me. If original Sleep Time was 194 minutes and AHI was 8.7 and there were 111 respiratory arousals, then that meant there were 28 apneas and hypopneas, leaving 83 as RERAs for an RDI of 34.3.

Spontaneous arousals, by definition, are non-respiratory, non-PLM-related.
DeltaDave,

I agree with what you are saying, but ...

What if the lab doesn't use the esophageal manometry needed to measure the esophageal pressure drop that marks a RERA? In that case, could the arousals be labeled as "spontaneous"?
Negative. Although use of esophageal pressure is the preferred method of assessing change in respiratory effort, nasal transducer with respiratory inductance plethysmograhy is acceptable.

And that technology is required, so I believe that the spontaneous arousals are indeed, "spontaneous" in this case.
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Re: No respiratory events but still lousy sleep

Post by kteague » Thu Feb 23, 2012 12:00 am

ohwhatanight wrote: I saw your suggestion on another thread of turning off the CPAP and back on again when you wake up to record how many times you actually wake up. That's a great idea and would keep me from getting as obsessed about it as writing it down would. I'll hide my clock tonight too.
I think that's a great way to get an idea about awakenings without waking up to note them. Not sure if you use use a ramp feature or not, but I would suggest that anyone who restarts their machine several times a night either does not use the ramp feature or else sets it to just a few minutes. I was one who woke frequently, each time restarting my ramp, but fell almost immediately back to sleep. Didn't realize that most of my sleep time I was in ramp - not effective treatment.

Another idea I've read was to keep a handful of cottonballs under your pillow and every time you wake up, toss one to the floor, to be countd in the morning. It will only give you a count though. With hitting the button on the machine, then you could possibly correlate wakings with events, if there is any relation. Also, the timing of the wakings may even hold a clue.
Let us know how things progress.

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stage0
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Re: No respiratory events but still lousy sleep

Post by stage0 » Thu Feb 23, 2012 6:23 am

I have some insight if your arousals still persist
look into ORHS at this link http://www.sleepreviewmag.com/issues/ar ... -07_03.asp
you will not notice it until your sleep study is look at over a 3-5 minute slice of time. look specifically at the respirations. this can cause small arousals

also look into some time release melatonin. as ppl get older the amount of this hormone decreases to be made in the brain. check with your doc, but i take it all the time.

lastly, i did not see if you have any chronic pain as a symptom. i have seen many studies that actually show arousals from this.

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Re: No respiratory events but still lousy sleep

Post by robysue » Thu Feb 23, 2012 9:51 am

deltadave wrote:
robysue wrote:
deltadave wrote:
ohwhatanight wrote:The 130 spontaneous arousals I had during the first study turned out to be RERAs. So all 241 arousals were respiratory related (meaning I didn't have any mysterious other reasons for arousals) and can benefit from CPAP therapy. During the titration study, I was down to 68 total. My arousal index went from 74.5 to 13.3.
That does not seem correct to me. If original Sleep Time was 194 minutes and AHI was 8.7 and there were 111 respiratory arousals, then that meant there were 28 apneas and hypopneas, leaving 83 as RERAs for an RDI of 34.3.

Spontaneous arousals, by definition, are non-respiratory, non-PLM-related.
DeltaDave,

I agree with what you are saying, but ...

What if the lab doesn't use the esophageal manometry needed to measure the esophageal pressure drop that marks a RERA? In that case, could the arousals be labeled as "spontaneous"?
Negative. Although use of esophageal pressure is the preferred method of assessing change in respiratory effort, nasal transducer with respiratory inductance plethysmograhy is acceptable.
Can you translate that to something the rest of us understand? Is this the standard belts and thing they stick under your nose on the diagnostic PSG?

Thanks for clearing up what has to be done to measure RERAs for us. It's appreciated!
Robin

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Re: No respiratory events but still lousy sleep

Post by deltadave » Fri Feb 24, 2012 4:33 am

robysue wrote:Is this the standard belts and thing they stick under your nose on the diagnostic PSG?
It is "standard" only if the Center in question is "following the standard" (AASM 2008).

There are belt types other than RIP (like piezo) and things they stick under your nose other than nasal pressure transducer (OK, it's not the transducer itself, it's nasal prongs)(stickin' a tranducer up there would hurt)(like thermistor)(the thermistor wouldn't hurt, the transducer would hurt)(cause see, the transducer is actually in this case thing) that would not qualify (for the standard).
robysue wrote:Can you translate that to something the rest of us understand?
Upon review, I'd say probably not.
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Re: No respiratory events but still lousy sleep

Post by Gazhacks » Fri Feb 24, 2012 5:39 am

I got to the cottonballs then I lost it, went first to shout on my other post. Wouldnt a zeo or maybe a Oximeter register awakenings? also with a 90 minute sleep cyle wouldnt it be plausable that some people would wake to a fashion when the cyle restarts.

Also, isnt it worth looking at other things other than OSA. I fall asleep in the daytime most days although my AHI is under 5, I have no leaks, then I ask myself would I have fell asleep if I didnt have osa, probably as there are just to many variables to count

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Re: No respiratory events but still lousy sleep

Post by robysue » Fri Feb 24, 2012 8:24 am

First,

A thank you to DeltaDave. You managed to translate it into something that makes some sense to me. Thanks for clarifying what equipment is needed to detect RERAs in an NPSG.

Next,
Gazhacks wrote:I got to the cottonballs then I lost it, went first to shout on my other post. Wouldnt a zeo or maybe a Oximeter register awakenings? also with a 90 minute sleep cyle wouldnt it be plausable that some people would wake to a fashion when the cyle restarts.
The Zeo gives a good guesstimate---if the wake is long enough. But the zeo can also misscore both REM and Light sleep as Wake (and vice versa). The makers claim it's about 75% accurate, which, given its cost and small footprint on both your head and bedside table is pretty remarkable. My own data indicates sometimes the Zeo seems to correspond exceedingly well with both my own memory of the night and the record of my turning Kaa off and on during the night. And sometimes the Zeo shows some remarkably long wakes that I have no memory of and for which there's no strong evidence in the wave form of a wake----as in the wave form is showing a remarkably stable, remarkably regular breathing pattern.

But I'm not sure how an oximeter would help to detect wakes---particularly wakes that are NOT the result of an arousal caused by OSA.
kteague wrote:
ohwhatanight wrote: I saw your suggestion on another thread of turning off the CPAP and back on again when you wake up to record how many times you actually wake up. That's a great idea and would keep me from getting as obsessed about it as writing it down would. I'll hide my clock tonight too.
I think that's a great way to get an idea about awakenings without waking up to note them. Not sure if you use use a ramp feature or not, but I would suggest that anyone who restarts their machine several times a night either does not use the ramp feature or else sets it to just a few minutes. I was one who woke frequently, each time restarting my ramp, but fell almost immediately back to sleep. Didn't realize that most of my sleep time I was in ramp - not effective treatment.
Kteague brings up a good point to keep in mind about my idea. I tend to forget this is an issue for many folks because I use such low pressure: My min EPAP=4, which means there is no ramp option for me. And even when my prescribed pressures were higher, they were never very high, and hence going back down to a pressure of 4 was not creating a problem for me. But for folks whose beginning ramp pressure is much below 2 or 3 cm below their prescribed pressure, either shortening the ramp time, increasing the beginning ramp pressure, or turning it off are all good ideas. By the way, on the PR machines, you have to press the RAMP button to start the ramp---when you turn the machine on without pressing the ramp button, you don't get the ramp.

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