View unanswered posts | View active topics It is currently Mon Oct 20, 2014 4:30 am



Reply to topic  [ 32 posts ]  Go to page Previous  1, 2, 3  Next
 Newbie with Question 
Author Message

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Newbie with Question
Sunny,
Welcome to the LBDA forums!
Seroquel is mostly used for agitation not as a sleep aide, Has your husband been DX'ed with LBD ? I wasn't clear on that and a suddent down turn could also mean some sort of infection brewing, anyway good luck and visit often and as Lynn pointed out it always helps to post in areas most fitting to your post as it will surely bring more helpful suggestions!

_________________
Irene Selak


Wed Dec 15, 2010 10:17 pm
Profile WWW

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Newbie with Question
Nan,
So sorry for the night you and Del had , it certainly sounds like it could be painful for him, is he expressing pain at all ?
I do hope the rest of today was much better! And Yes they never seem to come back to where they were.

_________________
Irene Selak


Wed Dec 15, 2010 10:21 pm
Profile WWW

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3394
Location: Vermont
Post Re: Newbie with Question
My dad was on Seroquel for most of the year. I'm not sure if it worked, or if his agitation would have been worse had he not been on it. So hard to tell. He'd fluctuate between depression and being highly agitated. With all the meds they had him on, you'd think he would have been more leveled out. It is a real guessing game, if you ask me. Lynn

_________________
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.


Wed Dec 15, 2010 10:23 pm
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Newbie with Question
Lynn,
Sadly it is like the many drugs "tried" they either work or they don't!
This is the real problem as there isn't any one that works the same on all!!

_________________
Irene Selak


Wed Dec 15, 2010 10:27 pm
Profile WWW

Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Newbie with Question
Irene, you wrote: "Seroquel is mostly used for agitation not as a sleep aide,"

...unless all of the out of control behavior happens during the night ... which was our situation in early 2009..... Dale still takes it only before bed at night. It does insure a night of sleep for both of us. I never want to be without it.

For three Friday nights in February of 2009, Dale was up most of the night attending meetings... insisting that I provide coffee for imaginary visitors.... and even urinating in the bathroom sink because the imaginary people were using the toilet. It was awful.


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


Wed Dec 15, 2010 11:06 pm
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Newbie with Question
Same here, Leone. The hallucinations keep them awake.

_________________
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 Dec 15, 2010 11:08 pm
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Newbie with Question
Yes Ladies we also took it for bedtime in the beginning and other doses were added over time, what I am saying is in OUR case it was given for behavior issues not for sleep, My husband took Trazadone for that, I believe before the end there were 3 doses the bedtime one , then 4:00 PM and the last one added was about 11 am . Mornings were our best time but as time went by behavior issues started and if memory serves me correctly we ended up taking 175 mg per day.

_________________
Irene Selak


Thu Dec 16, 2010 8:42 am
Profile WWW

Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Newbie with Question
Thanks for the reminder, Irene. I'm sure you mentioned the Seroquel doses in the daytime before. We rarely have any extreme behavior here.

Dale's daytime behavior is now always confused and paranoid. He believes 'people' are around and he continues to hide things from 'them.' I go looking for his combs, his shaver, and even his bathroom water glass on a daily basis. Yesterday, he threw out a cup of coffee because 'they' drank out of his cup. Sometimes, he refuses to wear something ... because 'they' wore it.

However, not any of this behavior rises to the level of needing Seroquel. It's really my problem and not his.... because he is generally calm.

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


Thu Dec 16, 2010 9:13 am
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Newbie with Question
Irene, interesting you should mention trazodone. Derek's doctor prescribed that a while back, also for sleep but it increased his aggressive behavior so we had to discontinue it. Which shows, again, how differently medications can affect our individual LOs. :cry:

_________________
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.


Thu Dec 16, 2010 9:15 am
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Newbie with Question
Pat,
Exactly ! That's why it is so hard to really give any advice because they are all so very different! I can't remember the dose but Jim took it (Trazodone) for a long time and far as I could tell nothing bad came from it, our nightmare drug was Risperdal and I am so thankful I had the good sense to get him off it by the 3rd day.

_________________
Irene Selak


Thu Dec 16, 2010 10:01 am
Profile WWW

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Newbie with Question
Ditto with the Risperdal. Derek was in a nursing home at that time for rehab from a hospital stay in AZ and the psychiatrist put him on Risperdal for delusions & aggressive behavior. Shortly after, the staff told me they needed to increase the dose or he would have to leave. Soon after they increased the dosage, he developed NMS and, as I stated in another thread, only by finding some research articles online was I able to put two and two together and discover what he had [which I had never heard of, and I am an RN]. I told them to d/c the drug immediately and they did. Thankfully, he recovered to baseline within days. Incidentally, I never did get to personally speak to the ordering physician. Since then, two other physicians have suggested Risperdal and, thanks to my knowledge gained from the articles and, later, from this forum, I was able to tell them no, and why.

_________________
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.


Thu Dec 16, 2010 10:55 am
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Newbie with Question
And there are some on this Forum who have reported that Risperdal is the only antipsychotic that works.


Thu Dec 16, 2010 11:27 am
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Newbie with Question
Then maybe those people don't have a Lewy Body disease--it could be something else.

_________________
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.


Thu Dec 16, 2010 12:05 pm
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Newbie with Question
Pat,
Honestly that same thing could apply to Seroquel,or any of the drugs used for LBD. I really think it has more to do with each person being so different in the illness, I have known several that have taken the Risperdol with no problem.

_________________
Irene Selak


Thu Dec 16, 2010 1:54 pm
Profile WWW

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Newbie with Question
I don't think it's possible to say that if person A has a positive reaction to a medication this means they don't have LBD. 50% of those with LBD cannot take *any* antipsychotic.


Thu Dec 16, 2010 3:01 pm
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 32 posts ]  Go to page Previous  1, 2, 3  Next

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by Maël Soucaze © 2010 phpBB.fr