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 36 hours awake - 8 hours asleep 
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Joined: Fri Oct 14, 2011 10:43 am
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Post 36 hours awake - 8 hours asleep
Since my grandma was diagnosed LBD, her day/night cycle is: 36 hours awake (with an amazing mental activity and "sowing" activities with her bedcovers) followed by 8 to 10 hours sleep. She has always been very, very active in her life, with very little sleep (5 or 6 hours sleep/night). But is such a change (36 hours awake for 8 hours sleep) a symptom of the illness (LBD) or might it be due to another cause that could then be cured. Very demanding for the environment...


Fri Oct 14, 2011 8:12 pm
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Joined: Tue Mar 29, 2011 3:02 pm
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Location: East TN
Post Re: 36 hours awake - 8 hours asleep
I have days…just like this

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Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Fri Oct 14, 2011 8:53 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: 36 hours awake - 8 hours asleep
I suspect that the disruption to the body's internal clock is a part of lbd. While lbd is not curable, often distressing symptoms can be lessened or controlled. Since this cycle is very hard on those caring for her and may require more care than she might otherwise need, I think it is worth discussing this with the specialist who is dealing with her dementia. Perhaps with drugs and/or other therapies her cycle can be brought closer to a more typical day/night pattern.

In addition to the convenience and safety factors, it is hard to believe that she can get by with only 8 hours out of 44, when most of us need close to that out of 24. I wonder if she wouldn't function better on a more "normal" schedule.

Best of luck to you. Let us know how this progresses.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Fri Oct 14, 2011 9:58 pm
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Joined: Fri Oct 14, 2011 10:43 am
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Post Re: 36 hours awake - 8 hours asleep
Thanks JeanneG for your comprehensive comment. We also wondered if she would function better if she had more sleep. According to her “specialist” (very good doctor, but certainly not a specialist of this unknown disease), it is part of the lbd... But the usual drugs to sleep don’t have ANY effects on her when she takes them the night that does part for her as the day (36 hours). For her: 1 day = 1 day + 1 night + 1 day. Then she has 1 normal night. Then again, 1 long day of 36 hours...


Sat Oct 15, 2011 10:16 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Post Re: 36 hours awake - 8 hours asleep
Can you try some strenuous exercise in hopes this might make her more fatigued?

Have you tried something sedating like the antipsychotic Seroquel?


Sat Oct 15, 2011 11:25 am
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Joined: Fri Oct 14, 2011 10:43 am
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Post Re: 36 hours awake - 8 hours asleep
Yes. She takes seroquel every day: 50 mg XR + 25 mg (sometimes 2 x 25 mg, on 36 hours day). She spends all time in bed, can't walk anymore. But her "brain activity" works non-stop.


Last edited by chantalb on Sat Oct 15, 2011 6:16 pm, edited 1 time in total.



Sat Oct 15, 2011 12:52 pm
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Location: SF Bay Area (Northern CA)
Post Re: 36 hours awake - 8 hours asleep
Perhaps you can discuss with the neurologist the combination of exercise and Provigil to restore the sleep-wake cycle.


Sat Oct 15, 2011 3:52 pm
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Post Re: 36 hours awake - 8 hours asleep
If you go to your duplicate post here -- viewtopic.php?f=2&t=3179 -- you should see a small X. That's the delete key that will let you delete your duplicate post.

When the Forum got it's latest update, the X got even smaller and harder to find. It's in the lower right side of your individual post. It's next to an exclamation point. (In posts you did not author, you will only see the exclamation point.)


Sat Oct 15, 2011 3:54 pm
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