sleep reversal


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sleep reversal

Postby vhammers » Tue Sep 06, 2016 9:02 am

My father has had PSP for 5 years and the new symptom of sleep reversal is very distressing for him and my mother who cares for him. Does anyone have any experience of this and any therapies/medications which helped?
Thank you
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Re: sleep reversal

Postby Robin » Tue Sep 06, 2016 12:03 pm

Can you say what "sleep reversal" means? Is this insomnia? Or mixing up daytime and nighttime?
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Re: sleep reversal

Postby vhammers » Mon Sep 12, 2016 9:07 am

Mixing up day and night, awake during night, with severe anxiety and distress and inability to wake up and function throughout the day
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Re: sleep reversal

Postby Kandis » Sun Nov 06, 2016 8:02 am

I almost think my husband started out this way, but it didn't last. Now he sleeps a lot during the night and naps during the day too.
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Re: sleep reversal

Postby Robin » Sun Nov 06, 2016 3:44 pm

Mixing up day and night is common with neurodegenerative disease. Have you looked into "sleep hygiene"? You might ask the neurologist or sleep specialist about medication that could possibly help the situation.
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Re: sleep reversal

Postby grandmakcat » Tue Nov 08, 2016 11:13 am

My husband benefited from Melatonin most of the time and also took an anti-anxiety medication which helped. He went through times where he found it very difficult to sleep during the night as well. I purchased a sound machine for him and also played soothing music from Pandora off the TV so that if he couldn't sleep it wasn't just dark and silent in the room. We had a specific routine before bed (almost like with a child) and I would put baby lotion with lavender on him too which was calming. If he stayed awake I put the TV on for him softly so I could sleep. I didn't sleep much during that time and tried to catch up when he would nap when I could. Check with your doctor about what's best though. Some sleep aides over the counter can be dangerous for PSP patients so don't give anything without checking with your doctor first.
Ronnie
Husband Dennis 1952-2016 aged 64 - PSP diagnosis 2014 - first symptoms around 2009 / Vietnam vet / Cause of death - complications from PSP; aspiration pneumonia 7/9/2016
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Re: sleep reversal

Postby daranch » Mon Jan 23, 2017 1:18 am

The sleep disorder caused by PSP is so distressing! Dave was doing good to get 2 hours sleep at night. Lots of behaviors, like taking apart his condom catheter drainage bag and pouring pee everywhere, crawling over the safety rail to get out of bed etc. After trying lots of medications etc., this is what's working for Dave (6 years into disease progression). He takes melatonin with dinner then lorazepam, Zoloft and Namenda (which made a huge difference). He also takes CBD oil through his feeding tube. I buy it online from Elixinol. He just takes the CBD oil for his afternoon nap. I also bought a Beddit sleep monitor which tracks the type and quality of his sleep. Gives me useful data that helps me plan his day so he doesn't get too fatigued.
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