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 Seroquel 
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Seroquel
Thank you, everyone who posted about your good experiences with Seroquel. Mom's new MD and CNP agreed that it was worth trying. We started with only 12.5mg and already there's a big difference. I wish we hadn't waited so long.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Tue Dec 14, 2010 5:14 pm
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Joined: Tue Dec 23, 2008 8:52 am
Posts: 154
Location: Michigan
Post Re: Seroquel
Kate -

Now that's great news!

Karen


Tue Dec 14, 2010 6:56 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Seroquel
Great!


Tue Dec 14, 2010 7:28 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Seroquel
Kate,
This is great news, we also had great success with seroquel!

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Irene Selak


Wed Dec 15, 2010 10:25 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Seroquel
Dale has been taking Seroquel 100 mg only at bedtime and that seems to work well. His sleep is rarely interrupted by his 'dreams.'

My question is regarding daytime use. What behavior warrants giving Seroquel during the daytime? (Would what Nan experienced with Del last night call for Seroquel?)

Dale can be quite unreasonable... sort of like a spoiled child. During such times, I treat him like a child. I have judged his behavior was extreme only twice. Both were total paranoia.

Some have taken Seroquel regularly during the day. What is the rational? Is it to prevent extreme behavior? I need to be educated.

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


Mon Dec 20, 2010 7:16 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Seroquel
Leone,
Have you read Dr. Brad Boeve's "Continuum" paper on one expert physician's treatment regimen for symptoms of LBD? He would suggest other meds besides antipsychotics for use as a sleep aide. There is a black-box warning on all antipsychotics Because of that, probably most physicians view these meds as "last resorts."
Robin


Mon Dec 20, 2010 7:24 pm
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: Seroquel
Yes, Robin.... I am fully aware of the warnings. I also had a bipolar son and one of his meds was Seroquel.

.....It's obvious that you haven't lived with months of extreme night time behavior in 2009 as I have. Dale had imaginary meetings and insisted that I serve coffee. (I pretended to make it.) He sat asking 'them' if they wanted sugar or cream. He insisted that I make copies of imaginary documents. This went on for two hours between 2-4 am.

On another night, he turned on every light in the house and got a knife from the kitchen to protect me... That was when I got alarms for all the doors in the house.

On another night, he peed in the bathroom sink because 'they' used the toilet and wouldn't allow him to use it. (That urine leaked into all the drawers of towels below the sinks.)

On another night, he insisted that we had tickets to San Francisco and literally pulled me out of the house that night insisting that we had to go.

I won't go back to those two hour long night sessions. I'll use Seroquel instead. I assure you that Seroquel isn't being used as a 'sleep aid.' In our case, it is a replacement for insanity. Both his and mine!!!!

Unless you've lived with that behavior, you have no authority to recommend treatment.

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


Mon Dec 20, 2010 8:56 pm
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: Seroquel
In reviewing my previous post, I said I viewed his behavior as 'extreme' only twice. I should have said 'his DAYTIME behavior.'

As I wrote in the second post, his nighttime behavior in 2009 was obviously a continuation of his sleep walking ... only escalated into something far worse. Sorry for the confusion.

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


Mon Dec 20, 2010 9:03 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Seroquel
Leone wrote:
Unless you've lived with that behavior, you have no authority to recommend treatment.



I don't think anyone was recommending treatment but instead recommending a paper from Dr Boeve who is an expert.

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Irene Selak


Mon Dec 20, 2010 10:46 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Seroquel
You said:
"It's obvious that you haven't lived with months of extreme night time behavior in 2009 as I have. ... Unless you've lived with that behavior, you have no authority to recommend treatment."

Do you find this view to be helpful to you?

I was not recommending treatment. I was recommending education.


Mon Dec 20, 2010 10:55 pm
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: Seroquel
Let's back up... I caused the problem by saying that "Dale has been taking Seroquel 100 mg only at bedtime ... His sleep is rarely interrupted by his 'dreams.' That sounded like we were using Seroquel as a sleep aid.

I should have explained that Dale's 'dreams' are connected with a long history of sleep walking. He cannot come out of his dreams when he awakens. That is why Seroquel has been given to him.


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


Mon Dec 20, 2010 11:25 pm
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Joined: Sun Oct 21, 2007 4:18 pm
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Location: Acton, MA
Post Re: Seroquel
Leone, You're not alone, our episodes with Lewy may differ, but they are frequently extreme and alarming. Frank has thought the corner of the bedroom was a good place to relieve himself and that he didn't need to go into the bathroom to have a BM when the rocker, in the living room, was closer. I always leave, for appointments, with extra time because he has to hold the door for all the "others" to come out and will go looking for the strays. The sad part is, this might be his best and we only go down hill from here. Meds are trial and error, Frank has never come back from the last one we tried, it's been 3 weeks since we stopped it and his confusion and hallucinations are off the chart.
Take Care, we're all in this together.
Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Tue Dec 21, 2010 7:00 am
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Seroquel
Gerry, what was the last med you tried that caused the problems?

I'm thinking "No new meds". Too risky at this stage.

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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.


Tue Dec 21, 2010 9:21 am
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: Seroquel - Gerry
Thank you, Gerry, for your post. I can tell that you and I are in this together.

Dale is totally delusional this morning. He keeps talking about a golf tournament that he is participating in right now. When I offered him a cup of coffee, he said, "I think I'll wait until after the next round."

A close friend in Lion's Club is a part of this delusion. Dale said, "If I could get another free stroke, I'd give it to Bruce." I said, "Why is that?" He said, "Because he got me involved in this tournament.

The odd thing about this is the fact that Dale has never played golf in Florida. We've lived here 12 years.

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


Tue Dec 21, 2010 9:25 am
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Seroquel
Leone, did he have a good round? :lol:

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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.


Tue Dec 21, 2010 9:27 am
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