Searching For Answers

I have a 14 year old son with this problem. He has had it for two years. We have tried melatonin, chronotherapy, light therapy, name it. I am tired of reading articles that claim there is treatment for it. I am also tired of seeing poor sleep hygeine as a factor. We started doing an online program for school this year. Next year I am going to work with the school to set up a half day program. Luckily, it is recognized by his doctors now. Of course we went through everything to get a diagnosis. The school wasn't so cooperative at first. Does anyone know if there is a facebook page for this? I couldn't find one except for the wikipedia version. Would anyone be interested in starting one and we could share experiences and talk about treatments that have been tried?
mdsc21 mdsc21
36-40, F
3 Responses May 7, 2012

I was told once that I should just give up trying to live on a normal schedule and accept my fate. I disagreed. There are always new treatments to try or variations of them. I googled "delayed sleep phase sydnrome" on Wikipedia and learned about them. When I was first diagnosed I was told to use a 10,000 lux lightbox for half an hour and then experiment to get under that. Now the recommended treatment is a half hour to 2 hours. There is a hat with an LED light that can shorten that time. Now there is blue light blocking goggles or glasses for the evening. <br />
<br />
I counted over 60 potential sleep obstacles that can interfere with my sleep. I put each in a jar and I say a prayer every morning. Then I pick one or more papers out of the jar. Often that's the obstacle I could be facing that night if I don't take care of it. Over time I am learning to manage the disorder better.

All I can say is, I've experienced Veew's feelings & dialogues to a T. Be strong, my friend. Very few people have this condition. I am on your side and extend to you my compassion & understanding. Those of us who live in this other-sleep world ought to band together and set up our own little Paradise. ;-)<br />
<br />
In answer to mdsc21. You may need to see where your adolescent son's phases end up over time. Adolescence can bring DSPS onset only temporarily, or in an extra intense bout that fades or changes over time. If he has it long-term, then perhaps he (and many others) should be pushed to a world of careers, waking happiness, that fits *DSPS* folks and not the rest of the world? I think the best so far we have, of all that I've read, are coping mechanisms that will allow us to shift our sleep-phase a little, and only on certain days. My most effective coping mechanism is to split the sleep shifts into 2 phases. That way, I can fall asleep at 2-6am, wake at 7-8am, take a nap at 5-6pm for 2-3 hours, wake again, stay up till 2-6am. For me personally, it varies a lot when I get tired on a given day. Some days I feel fine and need no naps and I'm near 40 years old.

Too bad the Melatonin and light therapy don't work. It seems that those are, to date, still the most effective treatments for pure DSPS, although they might only help you advance your rhythm a couple of hours in the good direction. (and only for a certain percentage of the DSPS patients) I've also got a (very) limited effect from those, which causes me to still keep looking for alternative solutions and/or other additional causes/disorders. <br />
<br />
The 'poor sleep hygiene'-argument has almost become my personal kryptonite. As soon as someone (with every good intentions they might have) starts about it I can't help it but immediately stop discussing my problems. Previously I would start a discussion to show that I've tried everything, but it mostly ended in more 'buts' or 'are-you-sure-you've-tried-long-enough-s' and 'aggresive-defensive' emotional rants from my side out of pure desperation which, understandably, almost always backfired in their perception of me and my problems. <br />
<br />
Thanks for sharing your story and your PM! (I've sent you a reply.)