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 Dementia and Nightmares 
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Joined: Thu Jun 26, 2008 10:28 am
Posts: 12
Location: County Durham. England
Post Dementia and Nightmares
As someone with Lewy Body dementia, I struggle with the nightly horrors of the night, namely the horrible nightmares,which don't seem to go away, and can not be stopped.

I have tried all sorts of things but the only thing that helps is, a process I have started using on a night.

I have some relaxing music on my MP3 player and I listen to this through my earphones, and either drift off to sleep with the music still playing or I switch the thing off after a while when I am totally relaxed.

This does not always work, but I was getting desperate to try something new as nothing was working at all.

It had been suggested that I try some mild tranquiliser medication, but I am terrified that I will get into one of these nightmares and will not wake up from it.

I can vaguely remember having nightmares when I was young but they were nothing compared to the ones I have these days.

My heart goes out to all who suffer from these nights.

Ken

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Take each day as it comes and enjoy it while you can.


Tue Oct 12, 2010 7:05 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Dementia and Nightmares
Ken,
Sorry to hear about the nightmares. It sounds like you've developed a great technique for avoiding them. I've never heard of someone not waking up from a nightmare...perhaps you could ask one of your MDs about this. Are you working with a good MD?
Robin


Tue Oct 12, 2010 12:14 pm
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Joined: Thu Jun 26, 2008 10:28 am
Posts: 12
Location: County Durham. England
Post Re: Dementia and Nightmares
Hi Robin
Perhaps I should explain. I sometimes wake up from them and other times they are difficult to shake off as they are so graphic and can go on for some time.

My MD does not deal with this type of problem and refers me back to the hospital when he has to, as they are the only ones who are experienced.
However from the comments I have heard from others this type of thing happens a lot in this illness.

I have to return to see the hospital consultant later this month, so I should know more by then.

Ken

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Take each day as it comes and enjoy it while you can.


Tue Oct 12, 2010 2:10 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3432
Location: Vermont
Post Re: Dementia and Nightmares
Hi Ken - Let me preface this by saying I don't have LBD (that I know of, anyway) and I have very vivid dreams and most nights I have nightmares. I have talked with my dr. about this - vivid dreams and nightmares have been part of my life since I can remember but are more frequent since I had to start taking some meds last Dec. When I went for my yearly checkup the other day my dr. suggested I take a light duty prescription sleep aid because she thinks I am not getting enough sleep because of the increased dreaming. I started that a few nights ago and now I don't seem to need 9 - 11 hours of sleep a night like I have been since I started the meds in Dec. Perhaps you can ask your dr. if something like Ambien or another sleep aid would help you. And, more often than not I do not wake up from nightmares. They have to be REALLY scary for that to happen! I hope you can get some help soon. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue Oct 12, 2010 7:54 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Dementia and Nightmares
Ken,
I am sorry you are dealing with these night terrors but I am glad that you have found a way of helping them not be as vivid with the relaxation.

Be well!

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Irene Selak


Tue Oct 12, 2010 7:57 pm
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Joined: Thu Jun 26, 2008 10:28 am
Posts: 12
Location: County Durham. England
Post Re: Dementia and Nightmares
My consultant put me on mild medication which was supposed to help, but it only made things so bad I ended up crying to come off them.

It was also at this point that my wife and I realised that I could not break out of the nightmare, so perhaps it was a case of drop it, or end up with something more serious, as I was by that point trying to get out of the bedroom window in an attempt to get away from the horrible nightmare.

The consultant then said that it had to be down to the Lewy Body's, and there was nothing she could suggest, apart from coming off the Exelon, something I really don't want to do, as it has helped me so much.

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Take each day as it comes and enjoy it while you can.


Wed Oct 13, 2010 4:23 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Dementia and Nightmares
So your neurologist is convinced the Exelon is causing the nightmares?

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Wed Oct 13, 2010 8:42 am
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Joined: Thu Jun 26, 2008 10:28 am
Posts: 12
Location: County Durham. England
Post Re: Dementia and Nightmares
I had these problems just before I went on the Exelon, so we think its the illness rather than the medication.

But as the consultant has said, it is a big risk to come off the Exelon just to see what happens.

As long as things don't get any worse, I will just have to try and cope.

Ken

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Take each day as it comes and enjoy it while you can.


Wed Oct 13, 2010 2:16 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Dementia and Nightmares
I am resurrecting this post because after reading it, I felt the issue described by the original poster sounded a whole like what Dale still experiences. Dale's problem is totally unrelated to drugs. I want to make that clear.

Dale has been a sleep walker most of his life. Sleep walking has resulted in some episodes where he has left the house and gone to a neighbor across the street. Once about ten years ago, he stood on the bed and walked off the bottom edge. (That's a long step down!) At other times, he has come close to hurting himself.

His strong Lewy delusions are much like a dream from which he cannot awaken. This morning, it was almost two hours before he smiled and seemed to be able to find his way out of the dream (nightmare) of the night before. His first words in the morning were about some envelops that I had received and what I was to do with them. He was insisting that we dress immediately and do whatever his dream demanded. It seems to me that he regularly cannot separate his dreams from reality. His delusions are usually troubling to him like nightmares.

It's my understanding that some are born with an inability to stop dream thinking upon awakening. Have any of your loved ones had similar experiences?

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Mon Dec 20, 2010 9:00 am
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Dementia and Nightmares
Yes. That is what Del is like when he is in a delerium. Walks and talks but doesn't make much sense. See my other post. He's on a 72 hour hold right now. Like your Dale, sweet and nice....no anger issues.....until.....It's a tough day today. Nan


Mon Dec 20, 2010 6:27 pm
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Joined: Thu Dec 02, 2010 1:44 am
Posts: 93
Post Re: Dementia and Nightmares
Nan, you and Del are in my prayers. Bernie


Mon Dec 20, 2010 8:17 pm
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Joined: Thu Jun 26, 2008 10:28 am
Posts: 12
Location: County Durham. England
Post Re: Dementia and Nightmares
Thank you for this, as it makes me realise that I am not alone with these horrors, which can be very disturbing, to me and upsetting to my dear wife, who has to watch it happening.

It is bad enough having a bad dream or nightmare, but when you are unable to get away from it on waking up, it gets distressing.

Ken

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Take each day as it comes and enjoy it while you can.


Tue Dec 21, 2010 5:13 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Dementia and Nightmares
It's so good to see you are still posting, Ken. I'm amazed that you are so aware and can talk about it. Dale is just beyond that at this point ... but he was aware for a very long time.

Were you a sleep walker as a younger man?

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Tue Dec 21, 2010 9:44 am
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