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phoenixrising1961
Joined: Mon Oct 31, 2011 10:44 am Posts: 20
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 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
_________________ Lisa, caring for mom Betty, 86. LDB diagnosed Oct 2011. In dementia unit near Boston.
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| Sun Jan 29, 2012 1:37 pm |
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robin
Joined: Fri Aug 11, 2006 1:46 pm Posts: 4811 Location: SF Bay Area (Northern CA)
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 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?
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| Sun Jan 29, 2012 3:23 pm |
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robin
Joined: Fri Aug 11, 2006 1:46 pm Posts: 4811 Location: SF Bay Area (Northern CA)
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 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).
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| Sun Jan 29, 2012 3:29 pm |
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cdw
Joined: Fri Nov 05, 2010 11:30 pm Posts: 298 Location: southern cali
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 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
_________________ CG for hubby. started showing symptoms in 2000, at 55, diagnosed at with AD at 62, LB at 64.. vietnam vet.. has ptsd, which doubled the chances for dementia...sprayed with agent orange. showing some signs of parkinsons.
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| Sun Jan 29, 2012 5:15 pm |
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JeanneG
Joined: Fri Dec 31, 2010 3:07 pm Posts: 1037 Location: Minnesota
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 Re: Introduction and a question.
Welcome, Lisa!
Could your mother possibly be dreaming?
_________________ Jeanne, 66 caring for husband Coy, 85. RBD for 30+ years; LDB since 2003, Coy still at home, in early stage
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| Sun Jan 29, 2012 5:18 pm |
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phoenixrising1961
Joined: Mon Oct 31, 2011 10:44 am Posts: 20
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 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
_________________ Lisa, caring for mom Betty, 86. LDB diagnosed Oct 2011. In dementia unit near Boston.
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| Mon Jan 30, 2012 2:15 pm |
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BayouCajun
Joined: Tue Mar 29, 2011 3:02 pm Posts: 386 Location: East TN
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 Re: Introduction and a question.
â¦. get her doctor to tell you what to do about prescriptionsâ¦.
⦠in that veinâ¦..
I take ariceptâ¦..10 mg with breakfast and 10 mg at lunchâ¦..
I was told by my mayo doctors to take it at those timesâ¦..I am on a high doseâ¦..
I was told it was okay to take immodium in my case for gastro side effectsâ¦.I just started trying thisâ¦.. I was told to drink tonic water daily to help with cramps side effectsâ¦..I have been for awhileâ¦..
â¦.. my experienceâ¦. the side effects can be severeâ¦â¦ for meâ¦..they subsidedâ¦.never went awayâ¦. but I manage themâ¦.. and the aricept has made a tremendous quality of life increase for meâ¦..
_________________ 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
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| Mon Jan 30, 2012 3:07 pm |
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phoenixrising1961
Joined: Mon Oct 31, 2011 10:44 am Posts: 20
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 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
_________________ Lisa, caring for mom Betty, 86. LDB diagnosed Oct 2011. In dementia unit near Boston.
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| Tue Feb 07, 2012 5:30 pm |
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robin
Joined: Fri Aug 11, 2006 1:46 pm Posts: 4811 Location: SF Bay Area (Northern CA)
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 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.
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| Tue Feb 07, 2012 8:55 pm |
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FiatLux
Joined: Thu Jan 14, 2010 2:40 pm Posts: 87 Location: California
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 Re: Introduction and a question.
Craig: It is my understanding that Imodium is on the Cognitive Burden Scale: http://www.indydiscoverynetwork.org/Ant ... Scale.htmlDo take care, Roxanne
_________________ My husband's first diagnosis in 2006 at age 64: Early Cortical Lewy Body Disease...
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| Sat Feb 11, 2012 1:19 pm |
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BayouCajun
Joined: Tue Mar 29, 2011 3:02 pm Posts: 386 Location: East TN
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 Re: Introduction and a question.
I am experimenting with itâ¦.
I started with one tabletâ¦.samsâ¦.brand⦠then waited a few daysâ¦.
I am currently taking 1/2 tabletâ¦..every other dayâ¦..
I am very cautiousâ¦.and taking notes as I goâ¦
the goal is to get the right grade of poopâ¦.
interestingâ¦..I just went to a gastro doctors office with 'someone' elseâ¦. one the wall was a poop grading scaleâ¦.with pictorials and number systemâ¦.
taking aricept will give you a first hand education in poopâ¦.pro-kinetic styleâ¦.
so yesâ¦..aricept goes one wayâ¦.immodium goes the otherâ¦.. finding a chemical induced balanceâ¦..what a contradictionâ¦.
I am very in tune with my dietâ¦.alsoâ¦.and its kinetic valuesâ¦.
after having a long discussion with Dr. Boeveâ¦. I believe his thoughts wereâ¦. Immodium long term is a no-noâ¦(in a regular way) Since long term is a 'real' relative value in my worldâ¦. and I can understand the risksâ¦. long term immodium and the bad that goes with itâ¦.if overweighed by the good of ariceptâ¦. is an acceptable thingâ¦..
anywayâ¦.I am working working both ends of this toward the middleâ¦.
_________________ 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
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| Sat Feb 11, 2012 2:10 pm |
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