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!

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.

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,
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, 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.

Same here, Leone. The hallucinations keep them awake.

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, 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.

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.

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.

And there are some on this Forum who have reported that Risperdal is the only antipsychotic that works.

Then maybe those people don't have a Lewy Body disease--it could be something else.

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.

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.