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 Rapid decline following introduction of meds 
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Joined: Sat Jun 15, 2013 1:26 pm
Posts: 6
Post Rapid decline following introduction of meds
My LO seems to have had a very severe reaction to the introduction of Aricept. About a week after starting on low dosage (5mg) he became completely unhinged mentally - delusional, hallucinating, unable to tell reality from what was going on in his mind - and physically became completely frozen - unable to walk, stand, move limbs. We took him to the hospital and he has gradually improved physically, and somewhat mentally, although not yet back to where he can be back in the residence where he was living (some assistance).

Is this usual? Is it the meds or just coincidental? Are these dramatic changes in fuctioning a common thing for LBD?

At this point, if he does not improve, he will have to go into long term care because his delusions include thinking he has special powers that may be useful in the spy vs. spy environment he says he is in (the hospital). They have to restrain him at night because he is not capable of walking without assistance and is thinking that he just needs to get into "launch" position in order to leave this "alternate universe" (his words).

I would appreciate any insight from others.

Ruth


Sun Sep 22, 2013 10:12 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Rapid decline following introduction of meds
My husband developed a similar response to Risperdal about five years ago. He recovered to baseline after the drug was withdrawn [at my request]. Medications can be very unpredictable in LBD.

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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.


Mon Sep 23, 2013 9:50 am
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 190
Location: Portland, Or
Post Re: Rapid decline following introduction of meds
My mother has had very dramatic changes with the introduction of new drugs, but recovers to baseline
after stopping the drug. If he hasn't already stopped the new drug do so as soon as possible. Mom has been remarkably
well for the past nine or so months, and it's been our experience that she has dramatic downturns with
illness (especially UTI's) and starting new medications.
Good luck, Ellen

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Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Mon Sep 23, 2013 11:54 am
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Joined: Sat Jun 15, 2013 1:26 pm
Posts: 6
Post Re: Rapid decline following introduction of meds
I stopped the meds immediately. My fingers are crossed that he gets back to baseline... maybe it should be called base "slope" since it continues on the decline?


Mon Sep 23, 2013 1:01 pm
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Joined: Sun Jun 08, 2014 11:22 am
Posts: 3
Post Re: Rapid decline following introduction of meds
Hello all! I am writing on this thread as we desperately need help and advice with my grandmother's situation. She is quite elderly (85 yrs old) and she has been having some cognitive problems for a few years now, but nothing too dramatic. However, a month ago, when my grandfather suddenly passed away, her situation worsened and she was diagnosed with LBD -- which is most likely correct, as she displays all the typical symptoms. Her main medication is rivastigmine, but unfortunately her response to it has been dramatic, and not in a good way. Namely, her cognitive function is still deteriorating fast, her hallucinations are very bad, but on top of that she is not able to sleep AT ALL! This is not just during the night, but also during the day -- she would fall asleep (very deeply) for 5 minutes, then wake up and be agitated. My mother, who is her main caregiver, is absolutely exhausted, and I worry a lot about her health as well. Has anyone experienced this already, and do you have any advice? We would be very grateful, as we are at our wit's end, and nothing (Xanax, etc) seems to help! Thank you!


Mon Jun 09, 2014 1:56 am
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Joined: Thu May 15, 2014 10:41 pm
Posts: 66
Location: Phoenix, AZ
Post Re: Rapid decline following introduction of meds
Inenciu, welcome to the forum! I am not familiar with the medication you mentioned, but hopefully someone on the forum will be able to give you advice. The fact that I've never heard of it, and I've heard of MOST of the medications subscribed to LBD patients, concerns me a little - but lord knows there are a lot of different drugs (with varying names) out there.

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Molly - Forum moderator. My dad's career as a geologist was interrupted by PD and LBD in 2009. I was a respite caregiver for my dad (lived out of state, but visited many times a year). He passed away peacefully in April 2014.


Mon Jun 09, 2014 11:31 am
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Joined: Thu May 15, 2014 10:41 pm
Posts: 66
Location: Phoenix, AZ
Post Re: Rapid decline following introduction of meds
Inenciu - I found a post elsewhere on the LBD site that provides an overview of drugs used to treat dementia in LBD, including rivastigmine. This may be helpful. There are also suggestions for what to do if the drugs don't help:

http://www.lbda.org/content/treatment-b ... d?page=0,2

_________________
Molly - Forum moderator. My dad's career as a geologist was interrupted by PD and LBD in 2009. I was a respite caregiver for my dad (lived out of state, but visited many times a year). He passed away peacefully in April 2014.


Mon Jun 09, 2014 11:39 am
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Joined: Sun Jun 08, 2014 11:22 am
Posts: 3
Post Re: Rapid decline following introduction of meds
Dear MollyK, Thank you for the quick replies and the link. Indeed, rivastigmine is just the name of the active substance in Exelon, so nothing new -- sorry about the confusion!

I understand that the medication may not work to help against the hallucinations (it hasn't really in my grnadmother's case), but I was wondering if anyone has experienced such dramatic side effects (no sleep at all!), and if yes, what can be done. In fact, we have stoped giving Exelon to my grandmother, and her sleeping seems to have improved a little bit (though of course it still fluctuates from day to day). We are not sure, however, how to proceed with, perhaps, some other medication. Any advice?


Mon Jun 09, 2014 1:36 pm
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Joined: Mon Nov 25, 2013 7:33 pm
Posts: 43
Location: Pennsylvania
Post Re: Rapid decline following introduction of meds
I found Melatonin to be helpful with my Mom. The best effect though was with a combination of Seroquel and Depakote. Wish we had discovered it much sooner.

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Marian, daughter of mom [82] diagnosed with LBD November 2013 after 7 years of a textbook course of this disease. Passed on January 26, 2014 following a week of home hospice care.


Mon Jun 09, 2014 9:08 pm
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Joined: Sat May 25, 2013 3:53 pm
Posts: 251
Post Re: Rapid decline following introduction of meds
Welcome to the forum inenciu. I have no medical background so I can only tell you from our experience. My mother had a great deal of trouble sleeping for many years. She'd be awake for weeks at a time (at least it seemed like weeks) and then asleep for weeks. Seroquel seemed to be the drug that worked the best for her. It calmed the hallucinations and it regulated her sleep better than anything else we tried. Of course, it may have been that it coincided with the progression of the disease and the combination proved calming but others on the site have commented on it's positive effect as well so I would ask the neurologist. One point, make sure you are talking to a geriatric neurologist - someone familiar with LBD. Any change in meds has to be slow and careful as LBD patients are ultra sensitive to med changes!

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Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Tue Jun 10, 2014 1:11 am
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Joined: Tue Dec 31, 2013 12:55 pm
Posts: 16
Post Re: Rapid decline following introduction of meds
My husband is on Depakote because in addition to LBD and PD, he has seizure disorder. He sleeps VERY well - too much in fact. But the doctor blames it mostly on the Depakote. I'm sure you will find something to help. Unfortunately, it takes a lot of trial and error and with this disease, sometimes the "error" is devastating.


Wed Jun 11, 2014 4:05 pm
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Joined: Sun Jun 08, 2014 11:22 am
Posts: 3
Post Re: Rapid decline following introduction of meds
Thank you all for all the good thoughts and suggestions! We will try various other mmedications, and hope that my grandmother's sleep will improve -- so far, just stopping the Exelon has helped a bit, but not so much.


Sun Jun 22, 2014 5:29 am
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Joined: Wed Nov 13, 2013 3:04 pm
Posts: 41
Post Re: Rapid decline following introduction of meds
You name it, my 89 mother has been on it. What works at first, stops working. Initially, Seroquel on low doses did help ALOT with hallucinations. Now, we cannot get them under control. We believe upping the Seroquel has caused severe agitation. She is hospitalized currently. They tried Depakote on her, but on day 4 it took 3 people to hold her down for a calming injection...so it was stopped. We are at a bad place....she needs meds to help with her symptoms, but can't seem to tolerate anything. She is also on 1.5 mg of Ativan...but that doesn't even help either. My mother has had sleep issues since her 50's. Looking back, we wonder if this wasn't the beginnings of LB. I am especially concerned for the caretaker in this situation....she a needs a tremendous amount of support and someone to fill in for her on nights so she can rest. Blessings to you all. She cant tolerate Melatonin either.


Wed Jul 16, 2014 10:27 am
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Joined: Sat May 25, 2013 3:53 pm
Posts: 251
Post Re: Rapid decline following introduction of meds
Sending you strength denshaw! You're definitely going through one of those ROUGH times! I remember a few hospital stays my mom had to endure when well meaning doctors decided to try more and different meds - one time causing , I believe, a minor stroke!! In the end we found minimal doses with minimal changes and making sure mom took her meds regularly worked the best - but there was that long difficult road to get there!

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Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Sun Jul 27, 2014 11:07 pm
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Joined: Wed Jun 25, 2014 11:29 am
Posts: 13
Post Re: Rapid decline following introduction of meds
Hello, We have had similar issues with my husband, Bill. His current Geriatric Psychiatrist has been very cautious about introducing any medications besides the Aricept. However, just in the past few days we have moved Bill from a rehab center where he needed to recover from the falls sustained while on Depacote to a Memory Care ALF. The Psychiatrist will not be able to treat him there, however he said he would stay on as a consultant since he is very familiar with LBD and currently has 7 LBD patients. His parting words to me were "the less the better" when it comes to meds. Therefore, I intend to proceed very cautiously when any new meds are proposed. It's sort of like "just say no"! Thank you all for sharing your journeys. Adele

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Adele, wife and caregiver to Bill, diagnosed with LBD in January, 2014.


Mon Jul 28, 2014 3:44 pm
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