I'm just wondering what kind of dosages of Seroquel are common among LBD patients. My mother gets 3 1/2 25 mg pills a day. She continues to hallucinate , at times it is pretty bad, other times not so bad, like she's more accepting of them. The Dr. wants to up her dosage to 4 25 mg pills a day and says that will help her agitated state with the hallucinations. Our caregiver said Seroquel is a double edged sword - it can cause the hallucinations or it can help with them.Is there anything better than Seroquel out there? Any thoughts or personal experiences would be very much appreciated.
~ John

Have you reviewed Dr. Boeve's "Continuum" paper both for what it says about Seroquel dosing and treating hallucinations?

Most in our local support group are on very low doses of Seroquel -- half of a 25mg tablet at bedtime. Some are on very high doses -- 200mg/day.

Thanks Robin, I wish I could find the report you speak of.I've spent the better part of a half an hour and cant seem to find it, but see lots of reference to it!

Go to lbda.org. In the search box enter "Boeve Continuum 2004." You'll see it in the search results.

I haven't posted on here in months
My husband started on 25mg at night about 2 years ago. Now he is on 100mg at night, 75 in the morning and we have 3 25mg that I can give him for agitation during the day. The Seroquel has really helped with his vivid dreams and with his rages during the day. If he is really upset, I crush it and mix it in koolaid. Seroquel has been a good thing for us
nanny

My Husband is on 200 MG each night

Hi John,
My husband take 25mg in AM, 50mg at noon and 200mg at night. He still hallucinates a lot, not sure that it has changed that at all, but the agitation is really under control. I'm off to read the continuum paper Robin speaks of. take care, Sherry

I finally found the article and reference to Seroquel. It is to help with hallucinations/delusions, agitation/aggression, wandering/disinhibition. It looks like up to 400mg can be prescribed at bedtime, less during the day. It is curious that it has helped Ken in all of the areas except hallucinations, although the delusions are all but gone. Sherry

Some (maybe Tanis Ferman?) do not like the idea of giving a person with LBD Xanax, Ativan, etc. So you might try eliminating that and see if you get a change. I don't know how many days you'd have to try it to say it was a good experiment. Can you talk to your husband's MD about these medication changes?

The issue with Xanax, Ativan, etc. is that they *can* cause paradoxic anxiety.

I have been wondering if LO would benefit by a neuropsychologist. His neurologist suggested an appointment with a neuropsychologist but we didn't keep the appointment because I found out our insurance doesn't cover any psych care and they charged $300.00 an hour. I would have justified the expense except LO hates having to answer all the questions they ask. The first consult was to have been 4 hours long. (Ouch!) I let the neurologist know about the insurance issue and he said he thought, some time LO would need that evaluation. I am wondering if the time is now.

Even though LO can act almost normal, when we are alone and I observe him, he seems to be talking to someone almost all the time. He sits with his eyes shut and mumbles and mumbles. (Is this delusional?) Recently we went to a wedding and he went into the mens room. When he didn't come out, I sent someone in. He was sitting in the dark. He seems to like to do that. Sit in the dark. He makes up stories a lot. Some times cute, sometimes funny, but never scary anymore. Like you Leone, his earliest symptons were heavy delusions and hallucinations. He is on Seroquel 50mg XR at bedtime. Aricept and Namenda during the day.
I also have to watch him closely as he takes things. At the wedding he took the entire candy dish and put it in my bag. Also took the brides white pen for the guest book. I didn't realize this until we were home and I looked in my bag. He is so sweet and agreeable. I just hate to repremend him so I just kept quite and hid the candy dish and he doesn't seem to remember it. I was going to return the pen to the bride and attempted to hide it also but he remembered and was upset that I tried to put it somewhere else. I do not want to get him upset, however I find myself getting more overwhelmed about this. Would an order for more Seroquel help? or maybe it is now time for the neuropsychologist or maybe a psychiatrist for me?
Mary

Mary, we found that Seroquel helps with hallucinations but doesn't do anything for delusions. Wish it did! Maybe others have had different experiences.

Mary, I'm fairly new here myself, and I might be off-base about this. But I wonder if you would get more response if you start a new post, maybe with a subject like "When is it time to see a neuropsychologist?" Having it in this thread it might miss caregivers who know about that topic but who have no reason to check a thread about seroquel. Just a thought ...

About the pen, could you say something like "You, know, honey, I think I picked that up by mistake at the wedding reception and I'm going to give it back to Connie when they get back from their honeymoon. But if you particularly like that one, let's go shopping for one like it for you."