5:14am February 20, 2015

Melatonin, Day 2

So as most of you know, I have a circadian rhythm sleep disorder called Irregular Sleep-Wake Pattern. Circadian rhythms are your body’s internal clock, and calibrates itself using a numger of cues from light levels to the rituals of daily living being carried out at the same times every day (like mealtimes).  The cues in your routine that tell your brain when day and night is, are called Zeitgebers.  

Another name for Irregular Sleep-Wake Pattern is Disregard of Zeitgebers.  This means that, unlike many other circadian rhythm disorders, “sleep hygiene”  doesn’t work very well on Irregular Sleep-Wake Pattern, although it can work a little bit in some people, when combined with other things.  I already have pretty solid Zeitgebers because my staff come in and help me at roughly the same times every day, and my bedtime routine is always identical.  But even that combined with the meds I was taking, wasn’t good enough, not now that I was on steroids that basically gave me back all the wonders of ISWP.

Sleep hygiene is making absolutely sure that you have a routine where you do things the exact same time of day, especially bedtime and the rituals surrounding that.  If sleep hygiene worked on Irregular Sleep-Wake Pattern then it would be far less common among autistic people, I think.  Because autistic people tend to prefer routine when we can make our bodies adhere to one.  And most of us can.  (I can’t, but that’s a whole nother story.)

I always point out that for some people, this is not a disorder at all. It is simply the way they sleep, and they derive more benefit from it than any drawbacks they might encounter. For one such autistic person, she’s gone so far as to refer to normal circadian rhythms as “The Circadian Prison”.  That article shows her viewpoint on the subject.

Unfortunately, my body doesn’t work like that.  I have a friend who shifts between delayed sleep phase syndrome and what she calls schedule collapse.  Schedule collapse is just her word for irregular sleep-wake pattern.  And just like for me, schedule collapse is a nightmare for her.  Not because we have normal circadian rhythms, but because our bodies want regular, long-term sleep, and random two-hour catnaps don’t cut it.

So what is irregular sleep-wake pattern?  It’s apparently rare enough in people without neurological conditions, that whenever I say I have it, someone has to show up and say “But you can’t have it, that only occurs in people with severe neurological conditions.”  Well, actually, there’s plenty of evidence that it’s common among autistic people, as well as people with parkinsonlike movement disorders.  I have both, among other neurological stuff including probable autonomic neuropathy (inherited through my mother).  So… yeah, I think that’s plenty neurologically impaired enough to have it.  And then some.

Anyway, when it’s at its worst (and it has been terrible ever since starting steroids, which counteract the sedating effect of my nighttime meds and of adrenal insufficiency in general) my entire body feels horrible.  My neuropathic pain goes through the roof.  Any other pain is made worse.  I can’t think, can’t concentrate, all my cognitive functions go awry, it’s not pleasant.  I so badly wish I had the kind of circadian rhythms Michelle has, that don’t put any kind of wear and tear on her body.  Unfortunately for me, my kind does.

Irregular sleep-wake pattern has been defined like this:

• Irregular sleep-wake pattern consists of a breakdown of a single consolidated sleep period into multiple naps irregularly dispersed around the 24-hour period. 
 • It is common in elderly patients with neurodegenerative disorders or in patients of any age with neurodevelopmental disorders.  
• Disease-related malfunction of the endogenous circadian timing systems is presumed to be the principal underlying change causing the disorganized sleep timing. 
• Other medical, neurologic, or psychiatric disorders and medication side-effects may contribute to the sleep-wake cycle disruption.  
• Multimodal therapy that includes combination of timed light-melatonin treatment and nonpharmacological interventions like scheduled contacts, physical activity, and enriched environment may improve the sleep-wake pattern. 

For more on this from the same webpage (long, hence put in footnotes), see footnotes. (1)

Anyway, the melatonin seems to be helping.  It hasn’t increased my quantity of sleep much yet, but it’s greatly improved the quality of the sleep I get.  I feel rested after I wake up.  It’s weird.  I hope this continues.  I also haven’t gone off any of my other sleep meds yet, I’ll want to do that gradually once I know this is helping, and see how far off of them I can actually go.

(1) Irregular sleep-wake pattern consists of temporally disorganized and irregular sleep and waking behavior (American Academy of Sleep Medicine 2005a). The sleep is broken into several short blocks in the period of 24 hours, with marked day-to-day variability of sleep and wake periods and with no circadian or ultradian pattern. The total daily amounts of sleep may be low, normal, or high. Few sleep episodes are of normal duration, and the patient is not consistently asleep or awake at any particular time of day, although in milder cases there may be a relatively consistent period of sleep between 2:00 AM and 6:00 AM. The chief complaint may be a various combination of sleep-onset insomnia, poor sleep maintenance at night, or excessive daytime sleepiness with frequent napping.
The irregular sleep-wake pattern is most common in cognitively impaired persons, particularly in those institutionalized. Formally, according to the current International Classification of Sleep Disorders, these patients should be classified as circadian rhythm sleep disorder due to medical condition rather than just irregular sleep-wake pattern (American Academy of Sleep Medicine 2005b), but in clinical practice these are the patients one most commonly sees with this sleep pattern. The most common neurodegenerative disorders associated with this sleep-wake pattern are Alzheimer disease, dementia with Lewy bodies, vascular dementia, Parkinson disease, multisystem atrophy, and Huntington disease.
It may also be seen in children with neurodevelopmental disorders suffering from mental retardation. In patients with particularly severe cognitive impairment, a skeletal circadian sleep-wake pattern may be present, comprised of short (2- to 3-hour) periods of interrupted sleep alternating with quiet wakefulness but punctuated once a day by a period of agitated wakefulness occurring at nearly the same time every evening. This clinical phenomenon of “sundowning” can be viewed as the daily expression of the intrinsic circadian rhythm of alertness and arousal impacting on a degenerated, dysfunctioning cerebral cortex. Such patients may be physically restrained or sedated in an attempt to control evening and nocturnal wandering and agitation that may accompany the irregular sleep pattern. The families may complain that the patients are seldom awake during daytime visits.
The rare, cognitively intact patients with “true” irregular sleep-wake pattern emphasize the nocturnal insomnia and regard the extremely long periods they spend in bed and daytime naps as a necessary result of it. They also may exhibit chronic depression, social isolation, and irregular rhythms of other daily activities, eg, eating. Subjective cognitive impairment with no objective findings on mental status examination and a complaint of daytime sleepiness often accompany nocturnal insomnia in such patients.

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