Circadian Rhythm Sleep Disorders and Narcolepsy

This talk was presented by Peter Mansbach at the 2013 Narcolepsy Network Conference. It introduces circadian rhythm sleep disorders, in particular Delayed Sleep Phase Disorder and Non-24-Hour Sleep-Wake Disorder, including treatment and research issues. It suggests some similarities to narcolepsy and its challenges, and the possibility of misdiagnosis. The talk is directed at people with narcolepsy, but most of it is general and applicable to all audiences. (The recording was made after the conference was over, so we don't have the informative questions and answers from the actual session.) Text can be read at www.circadiansleepdisorders.org/info/NNconf2013talk.docx. For more information see www.circadiansleepdisorders.org.

[@IAMGiftbearer]

Very informative! I'm going to share this information with my doctor!

[@afterthesmash]

I'm a sighted person with N24, successfully treated for about two years now (1 April 2015!), on my own initiative, after three decades of dysfunction and disorder. My underlying period was 25h25m. I presently take 750 µg of sustained-release (SR) melatonin eight hours before bedtime (fifty-something male, 6'4", 230 lbs) . For years I had tried regular melatonin, at all offsets and dosages, but never managed to correct my period to less than 24h10m (this was not reliable, and any drift could only be corrected by a full flip-around). The SR formulation finally delivered the midnight magic. I've also found that 3-10 mg of nortriptyline at bedtime (I have mine custom compounded) to be a big help when my sleep quality degenerates (but normally it's now pretty good). I'm still fine-tuning my regime to deal with the occasional extreme fatigue in the early evening. That's my primary remaining problem.

[@petermansbach3898]

Wow! Glad you found a solution. Interesting that sustained release worked but regular melatonin didn't - I wonder if you maybe weren't producing any melatonin internally, so needed the med to stay in your system longer for its advancing effect.

[@afterthesmash]

Thank you for writing back. I started to bang out some of my unusual history in response, and soon greatly exceeded the UA-cam box. I'll drop you a note at your csd-n.org e-mail address instead, though part of me just wants to dump it straight out into a public space.

[@jackiepurler7978]

Thank you so much for taking the time to put this video together. I was recently diagnosed with Idiopathic Hypersomnia, but I believe I have delayed sleep disorder too. I'm searching for any help I can get since IH doesn't have any official drug or therapy yet. Is there a way to test your melatonin and cortisol levels for an extended period of time to see if there's a dysfunction there? We just need the ability to research ourselves to find the root cause of what's going on. Plus, I feel like there's such a broad spectrum what works for one of us may not be strong enough or too strong for the next. It's so hard living in a world where everyone thinks you're just lazy.

[@CSD-N]

Melatonin testing: www.circadiansleepdisorders.org/treatments.php#meltest

[@paprikaahmedTruthAddict]

Research also dr Jack kruse and light therapy

[@paulatristan8189]

My son has CRSD but it isn't related to Narcolepsy.