Surprise: not sleep apnea but arousal apnea

[stevos2000]

After about 1 month into my treatment, I was still feeling crappy even with sub 1.0 AHI numbers. So following some of the suggestions in this forum I got myself an infrared video camera, some infrared lights, and a bedside Zeo set-up to correlate with my SleepyHead waveforms and event reports. The results were not what I expected. From the video I learned that I wasn't the side sleeper I took myself to be all my adult life. (Go to sleep on my side, wake up on my side) Turns out that about an hour into my sleep every night I flip onto my back then later back to my side than back to my back ... repeat. From Zeo I confirmed an earlier sleep lab result (that the doctor poo poo-ed) that I continually bounce between REM sleep and awakenings and that I have little or no deep sleep (nor non-fragmented REM sleep). Finally, and of most interest to me, was my discovery that all my reported sleep events (apneas and RERAs) mapped exactly in duration to various sets of repetitive motions and body rolls that I seem to engage in every night (many of these weird sets of monkey like behaviors with my arms and hands).

SO, its not that failure to breath causes my body to jerk awake to get a breath of air like my doctor said. Rather, its the act of my body's unconsciously flipping itself over or flapping its arms around that causes me to breath erratically and sometimes hold my breath (especially when I sit up, grab my pillow, flip it around, and flop myself over to the other side). I'm gotten so used to this phenomenon now that I can look at my SleepyHead waveforms and predict almost exactly what I'll see on the videos and when. The same goes with looking at the videos and knowing what I'll find in the waveforms.

The lesson from this for the newbies and those still frustrated with CPAP performance relative to quality of life is: go get yourself a video camera and whatever else instrumentation you can so you can finally shine a light on what's really go on with your sleep behaviors and so-called sleep apneas. Your doctor may only be of limited or no help at all if your case doesn't fit the standard parameters.

[Bons]

I've been making that argument with my sleep doc for a year now, and he will soon put me in the lab overnight, since they have a motions disorder clinic. I have shown him repeatedly that my "apnea events" take place for the most part when I am awake (can tell this because my awake bpm is very different from my sleeping rate.

I am all over the bed at night, often waking up in the morning or during the night with my head at the bottom of the bed. Being tied to the hose has limited this somewhat, but every so often I wake up with the ASV blowing merrily away without the hose connected to it. My arms are often up in the air, and my husband used to get bruised before learning to sleep elsewhere.

[davelikesbeer]

I am curious how this was not discovered in your diagnostic sleep study.

[ameriken]

The lesson from this for the newbies and those still frustrated with CPAP performance relative to quality of life is: go get yourself a video camera and whatever else instrumentation you can so you can finally shine a light on what's really go on with your sleep behaviors and so-called sleep apneas. Your doctor may only be of limited or no help at all if your case doesn't fit the standard parameters.

There's another thread around that someone posted over the summer who did the same thing. It's really a great idea. My AHI's have now been under 5, but I'm not totally back up to par yet and I've thought doing a video as well.

Good thinking

[NightMonkey]

The lesson from this for the newbies and those still frustrated with CPAP performance relative to quality of life is: go get yourself a video camera and whatever else instrumentation you can so you can finally shine a light on what's really go on with your sleep behaviors and so-called sleep apneas. Your doctor may only be of limited or no help at all if your case doesn't fit the standard parameters.

You say there is a lesson here but you don't mention implementing anything or planning to implement anything to improve your sleeping.

[So Well]

I am curious how this was not discovered in your diagnostic sleep study.

I am wondering the same thing. Any decent lab with a semi-alert technician should have noticed this.

After about 1 month into my treatment, I was still feeling crappy even with sub 1.0 AHI numbers. ..... my discovery that all my reported sleep events (apneas and RERAs) mapped exactly in duration to various sets of repetitive motions and body rolls that I seem to engage in every night ....
SO, its not that failure to breath causes my body to jerk awake to get a breath of air like my doctor said. Rather, its the act of my body's unconsciously flipping itself over or flapping its arms around that causes me to breath erratically and sometimes hold my breath (especially when I sit up, grab my pillow, flip it around, and flop myself over to the other side).

This could be, but how do you know which is the cause and which is the effect? Are the time scales on Zeo and Sleepyhead so perfectly synchronized that you can tell whether the limb movements come first or the breathing disruptions come first????

Although you are right to study your sleeping, I have little faith in your self-diagnosis.

What was your original diagnosis from the in-lab study?

[peterg]

I watched Paranormal Activity 3 movie last night, be careful what you tape. (just kidding)

[stevos2000]

In response to some good questions:

1) How was this missed in the original sleep study?

The short answer: people see what they expect to see and ignore what goes against their general experience. Longer answer: sleep techs and reviewing doctors are over-worked and over scheduled and often glance through the summary report rather than review with any diligence the real lab data...

Also, and this is important for all to remember, the sleep lab is a highly artificial environment in which the attempt to measure the thing being studied distorts the thing itself (no, this is not the Heisenberg uncertainty principle). In my case, being all wired up and conscious of being wired up constrained my sleep movements as did repeatedly being awakened to reattach my leg sensors. Needless to say they recorded no significant leg movements. Accordingly, you'll get a much better reading of how you really sleep by watching yourself sleeping at home over many many days.

2) How do I know I have my causality right regarding the arousal causing the breathing apnea and not the other way around?

Answer: Its more a periodicity issue than a causality one. No, I don't have accurate and synchronized time stamps for the video and waveform data (though I do have events to synchronize to, like when I remove the mask to get out of bed in the middle of the night). What I have noticed is that the length of the waveform disturbance is precisely the length of the recorded physical disturbance, which leads me to believe that the two events are contemporaneous. Essentially what I often find myself doing in my sleep are sit-ups and crunches, which when done in the real world also involve breathing disruptions.

3) What am I doing to try and fix the problem?

Answer: as much research and documenting of the problem as I can, so that I can revisit my doctor with more data at my next appointment. I have started taking Lunestra (which my doctor just prescribed for me) to help me sleep longer (it seems to be doing this at least). I also take Gabapentin, which the literature indicates might help. If this is really a neurological problem there aren't any good cures, and common treatments involve rather strong and addictive drugs which dampen muscular response and reduce REM periods. I'm hoping I am wrong about this. But I don't think I'll be able to get off of Provigil any time soon.

By the way, CPAP IS greatly helping with some of my day time sleepiness (still need Provigil), and I do also have respiratory related issues with my nasal and jaw configuration, as well as asthma. So, whatever the solution, if there is one, CPAP is part of the equation, and I am very grateful that I have been provided it.

[VVV]

Gabapentin,

If you have time, I would appreciate any comments on gabapentin as I am experimenting with drugs for RLS and this one may be next in line.

[Lizistired]

I didn't believe I ever slept on my back either... til I saw the video. I turn over about 12 times a night. I don't have any idea what wakes me up though.
Are you using an oximeter? When I look at the flow graph most of my flagged apneas are preceded by a couple of deep breaths and don't produce desats. These are when I'm turning over or whatever. But when I track the desats they are caused by actual apneas where the flow just levels off. These usually aren't 10 seconds and don't get flagged. The video on my laptop does time lapse and time stamps so it's pretty easy to line everything up.

[mars]

Hi Stevos

You might find some ideas here -

http://www.the-pillow.com.au/

Check out all the categories on the left, there is a stack of stuff to help keep us where we want to be.

cheers

Mars

[Lizistired]

Here is the link to the video Jay posted about his home sleep lab and leg movements.
https://www.youtube.com/watch?v=Y6y0FItoZdA
Ameriken there are really cheap hacks for infrared cameras. I made mine out of a $7 webcam I got off of ebay and a piece of film negative..

[Jay Aitchsee]

Here's one with time stamp. Capture interval is 30 sec.
http://www.youtube.com/watch?v=mXjXiPaq1mk
Jay

[peterg]

Hi Stevos

You might find some ideas here -

http://www.the-pillow.com.au/

Check out all the categories on the left, there is a stack of stuff to help keep us where we want to be.

cheers

Mars

this one in particular looks interesting. and probably the only product with a male in it. (men snore?)

http://www.the-pillow.com.au/more/sleep ... pillow.php

[gasp]

I have never correlated long hair with events before! But thanks to your post I'm giving it some thought. My AHI has very slowly climbed from it's wonderful 0.0 to 1.5ish to near 5 and some really bad nights.

My hair is thick and waist length. I cut it mid back once in awhile and did a couple of years ago. I wear a ponytail at night and when short it stays out of the way above the pillow with my hose. However, once it gets to a certain length it requires me to sit up - or as you say - do crunches all night long as I have to sit up slightly to get the ponytail out from beneath me and back up over the pillow and do this every time I turn from one side to another!

My husband has increasingly complained that I wake him up tugging on the covers too. This might be why.

To top it off, I've awoken to the 747 jet airstream coming at my face most nights. When I wake up I find my ponytail under my head forcing my chin into my neck and thereby causing the machine to ramp up air.

I'm cutting it again and will see what happens to my numbers! Thanks for the thought : )