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 Introduction and a question. 
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Joined: Mon Oct 31, 2011 10:44 am
Posts: 20
Post Introduction and a question.
Hi everyone. My name is Lisa and my mom has just been diagnosed with LBD, or at least that's the current hypothesis. I will write more later but right now I have a particular questions about Aricept. My mom was put on 5mg Aricept daily about 6 weeks ago. She tolerated it quite well - no GI side effects. Just lately she has been saying she hears voices at night - always the same ones - my voice and a man she doesn't recognize who is a "bad man". I am wondering if there's any way that Aricept is contributing to this. She does not tolerate drugs very well.

I searched for this in the forums but didn't see anything about this particular possible side effect. Thanks for your help - I'll post more soon!
Lisa

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Lisa, caring for mom Betty, 86. LDB diagnosed Oct 2011. In dementia unit near Boston.


Sun Jan 29, 2012 1:37 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Introduction and a question.
I also replied to your post on LBDcaregivers.

This is a great question for the prescribing MD. Hallucinations are part of LBD. Aricept can cause hallucinations (though it's uncommon). You will only have an inkling if the Aricept is the culprit by removing it.

Certainly part of the decision will be that your mother is tolerating 5mg quite well. Is the MD planning to move her up to 10mg soon?


Sun Jan 29, 2012 3:23 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Introduction and a question.
By the way, there are two websites that provide information on side effects -- rxlist.com and drugs.com. I suggest you look up the info on Aricept (donepezil).


Sun Jan 29, 2012 3:29 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: Introduction and a question.
hi lisa,
welcome...
sorry for your need to be here..

my hubby had hallucinations for the first time when he was starting on aricept.so we took him off.. sadly later, he still had them... he went on galantimine later and he still has them...but by going thru the building up processon the galantimine , hes now at 24mlg, his cognitive thinking is much better.. so its give a little take a little and see what works best and hurts less!
we have been trying other meds to help with the hallucinations... so far lessened, but not completley gone... good luck in finding the mix that works for your mom...
take care
cindi

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sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 1-14,released to memory care..


Sun Jan 29, 2012 5:15 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Introduction and a question.
Welcome, Lisa!

Could your mother possibly be dreaming?

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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


Sun Jan 29, 2012 5:18 pm
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Joined: Mon Oct 31, 2011 10:44 am
Posts: 20
Post Re: Introduction and a question.
Hi everyone. Thanks so much for your help. I don't THINK my mom is dreaming - she sometimes seems confused when she is talking to me on the phone about whether I am real or she is just hearing voices. She lives in a very small town in the midwest, and although the diagnosis was done at Mayo, her prescibing neurolosist is the one I have to deal with. The neurologist has said she doesn't think it is the Aricept and that taking her off of it could cause other problems. Someone on the Yahoo LBD Board suggested she try taking the pill in the morning instead of at night, which I will suggest to her doctor. We'll see how it goes. Thanks for all your support on this subject. Lisa

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Lisa, caring for mom Betty, 86. LDB diagnosed Oct 2011. In dementia unit near Boston.


Mon Jan 30, 2012 2:15 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Introduction and a question.
….
get her doctor to tell you what to do about prescriptions….

…
in that vein…..

I take aricept…..10 mg with breakfast and 10 mg at lunch…..

I was told by my mayo doctors to take it at those times…..I am on a high dose…..

I was told it was okay to take immodium in my case for gastro side effects….I just started trying this…..
I was told to drink tonic water daily to help with cramps side effects…..I have been for awhile…..

…..
my experience….
the side effects can be severe……
for me…..they subsided….never went away….
but I manage them…..
and the aricept has made a tremendous quality of life increase for me…..

_________________
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


Mon Jan 30, 2012 3:07 pm
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Joined: Mon Oct 31, 2011 10:44 am
Posts: 20
Post Re: Introduction and a question.
Hi all. Well we tried Aricept in the morning and it didn't change much, so as of tomorrow we are discontinuing it to see what happens. These hallucinations are becoming more and more scary to her. Will keep you posted.

Lisa

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Lisa, caring for mom Betty, 86. LDB diagnosed Oct 2011. In dementia unit near Boston.


Tue Feb 07, 2012 5:30 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Introduction and a question.
I suggest reading Dr. Brad Boeve's "Continuum" paper on suggested medications for treatment of the various symptoms of LBD. You can find it by doing a search on lbda.org. Besides the AChEIs (such as Aricept), the atypical antipsychotics (such as Seroquel) are suggested for treatment of frightening hallucinations.


Tue Feb 07, 2012 8:55 pm
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Joined: Thu Jan 14, 2010 2:40 pm
Posts: 88
Location: California
Post Re: Introduction and a question.
Craig: It is my understanding that Imodium is on the Cognitive Burden Scale:
http://www.indydiscoverynetwork.org/Ant ... Scale.html
Do take care,
Roxanne

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My husband's first diagnosis in 2006 at age 64: Early Cortical Lewy Body Disease...


Sat Feb 11, 2012 1:19 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: Introduction and a question.
I am experimenting with it….

I started with one tablet….sams….brand…
then waited a few days….

I am currently taking 1/2 tablet…..every other day…..

I am very cautious….and taking notes as I go…

the goal is to get the right grade of poop….

interesting…..I just went to a gastro doctors office with 'someone' else….
one the wall was a poop grading scale….with pictorials and number system….

taking aricept will give you a first hand education in poop….pro-kinetic style….

so yes…..aricept goes one way….immodium goes the other…..
finding a chemical induced balance…..what a contradiction….

I am very in tune with my diet….also….and its kinetic values….

after having a long discussion with Dr. Boeve….
I believe his thoughts were….
Immodium long term is a no-no…(in a regular way)
Since long term is a 'real' relative value in my world….
and I can understand the risks….
long term immodium and the bad that goes with it….if overweighed by the good of aricept….
is an acceptable thing…..

anyway….I am working working both ends of this toward the middle….

_________________
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


Sat Feb 11, 2012 2:10 pm
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