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On Sleep - AS IT HAPPENS

Thu, Oct. 7th, 2010

04:12 pm - On Sleep

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I have spoken of this issue numerous times, and especially during my days of work at Lions Services. Even so, I don't think I could talk about it too much as it has such a profound effect on my life.

Am I lazy? Do I just lack motivation? Why is it that some nights find me wide awake till 3 in the morning, and yet I still have to fight the bobbing head in classroom settings or on the bus (I very recently missed my stop because I'd gone into doze mode).

These effects were actually far more profound during my school days, and probably all the way through undergraduate study. I would sit in the class literally with my head on the desk, and whatever I managed to take in was done through a haze of dreams and tingles. How I learned anything is beyond me.

Many have long speculated that real problems establishing a normal sleep rhythm exist among those of us who are totally blind. Now, there seems to be a name for it: non 24-hour sleep-wake disorder. That's quite a mouthful, isn't it?

I heard about this on a podcast by Debbie Hazelton, whose show is initially aired on ACB Radio Mainstream but is then made available for download. If you wish, I invite you to check out the show here, although I'd recommend that you right click and save target as in order to download it.

If however you do not have time to listen to it, the long and short of it is this: a drug company called Vanda pharmaceuticals is attempting to study the efficacy of a drug called Tasimelteon in regulating circadian rhythms with people who cannot perceive light. Hazelton spoke with Dr. John Feeney, one of the study's founders, and a collection of other blind callers who'd volunteered to pose questions for him.

Feeney noted that, according to their predictions, there are approximately 65000 individuals who have this particular disorder, which makes it rare among the general population but quite common among those who are totally blind, representing a little over half of us. Our internal clocks, which are controlled by a structure in the brain called the SuperChiasmatic Nucleus, have us on a sleep-wake pattern that goes for something like 24 hours and 20 minutes. This causes us to drift into and out of the norm every two or three weeks, and thus obviously effects every aspect of our being.

Other non-regulated substances, such as the ever-popular Melatonin, have been available on the market for years. Some are in fact attempting to convince me that I should give this a try, and maybe I will. However, Feeney pointed out that the danger with these sorts of things is that the product consistency is not verified. Also, there isn't much in the way of credible research suggesting whether these treatments are effective. And a concern I have, many who might wish to start using them will avoid doing so, because they don't know the proper dosages and lengths of use.

In that light, they are hoping that this drug will bring about a greater degree of certainty, and ultimately result in positive outcomes. After a series of urine tests over a month-long period to verify that one has N24HSWD, a six-month trial will begin in which the person takes either the drug or a placebo pill every night. I believe the person would also be expected to ocasionally come into the clinical site to have other measures run as the study progresses.

I'm trying to decide if I will participate. It sounds like a time commitment, and I'm not exactly sure how that would work on top of graduate school. Although the possibility of improved sleep would probably benefit many other areas of my life as well. If you are totally blind with no light perception or know persons who are, you can get more information about this study by calling 1-888-389-7033. At this time, it is limited only to those between the ages of 18 and 75, although it was suggested that children could be tested some time in the near future. I do hope this eventually ends up helping us all.

Comments:

From:thesaxomike
Date:October 7th, 2010 10:17 pm (UTC)
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Interesting. Just thought I'd say that I'm totally blind and have no light perception, and have no trouble sleeping whatsoever. What does this mean? That the disorder only affects certain people without light perception? Or does something else cause it?
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From:johnmill79
Date:October 7th, 2010 11:16 pm (UTC)
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Well, they said it only effects roughly half of us. So it shouldn't be surprising that quite a few wouldn't be effected at all. Most totally blind people I know do seem to have some marginal issues, though.
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From:creature_girl08
Date:October 8th, 2010 05:05 pm (UTC)
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I know this is a problem that needs to be worked on for sure. Hopefully they have good results from this study. I have some vision so don't qualify but will pass the info on to two folks I know that do qualify.
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From:johnmill79
Date:October 8th, 2010 05:33 pm (UTC)
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Great. That'll work.
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