Re: Valium and Lewy Body?

March 16, 2011

Dear ,

Your post brings up an interesting question that I have been debating and

researching for the last week. My father (83 years old) has displayed symptoms

of Lewy Body for several years - acting out dreams (since his 40's), paranoid,

delusional, hiding things, slight shuffle and hallucinating. A year ago his

psychosis got out of control and he was calling the police saying people were

coming through the walls of his house. We admitted him to the psych ward and we

were told he had dementia. I questioned whether this behavior could be a result

of 40 years of valium taking. He self-medicated so we really don't know how much

he was taking. The problems didn't start until after his wife passed and

probably started taking higher doses. We weren't given an explanation of how

they knew but they said " No, it's dementia. " Well, they medicated him on a low

dose risperadol, depakote, namenda, and 2mg diazapam (valium) at night. It

worked beautifully. There were no hallucinations for 7 months, but his gait got

worse, he started falling, and had moments of blank stares, but that fluctuated

with high functioning and physically well days. Months 7-12 he declined further

(hallucinating, mobility worsened, cap gras syndrome, memory issues, and finally

he wandered off and had no memory of it) - there were no medications change

during this time, except we upped the daytime risperadol (1 mg to 1.5 mg in AM)

and the obsessive capgras syndrome (insisted he had 2 apartments that looked

just alike) ended. When he wandered off, we admitted him back in the psych

hospital and were told that the meds were no longer working and that we needed

to prepare for a rapid decline ending in hospice in the next year. Here is the

twist to the story...

We moved him to a dementia ward at an assisted living. They removed the valium

completely. After 4 weeks (about the time it takes to get vailum out of your

body), our father who had no clue of reality (for 4 wks), he his doing great. He

is very aware, walking upright, you would never know that there is anything

wrong with him. Is this just a honeymoon period at the new place, because they

keep him engaged and exercise? Now, I question was this all a big mistake. I

have been researching valium addiction and it has a lot of the same severe

symptoms - nightmares, hallucinations, paranoia, double visions, stumbling,

confusion. Were all these symptoms due to the valium and risperadal made the

physically aspects worse? Does anyone have information on how to tell the

difference between a valium addiction and lewy body?

Thanks,

Tammy

>

> > hi sherry, thanks for sharing this about your mom though im so sorry she

suffers from dementia. its very frightening to see your loved ones detertiorate

so rapidly . my sister has taken valium for 40 years before this happened. and i

onder if it could have increased her risk for this lewy body dementia? they gave

her haldol when she was admitted to the psychiatric unit and said she was

psychotic. then after a week of this drug and others like stellizine and the

like they transeferred her to a memory unit in a nursing home. i do not have

power of attorney medically by myself. the man she gave it too was her

husbands nephew . he shares it with us and all but lives out of state and is not

very knowledgable of her as i am. shes basically in a wheelcair, cannot walk

alone and yet less than a month ago was driving walking ok and yes, DID suffer

memory troubles and recent seeing people in her home at night but this is such

a sudden dramatic switch i

>

> > just feel something is not right here . the staff say it can happen this

quick yet still i wonder. shes on seraquil now and something like a mood

stabilizer? i can only offer support and try to learn as much as i can but its

so upsetting. sincerely susan

>

March 16, 2011

I can't comment on the valium but I can say that my father has fluctuated

between seeming " demented " and seeming relatively normal three times since

November of 2009. He had problems from 12/21/09 through about mid February

2010. He seemed fine until early March 2010. From March to late April 2010 he

had problems. From May 2010 through November 2010 he was fine (still had

excessive sleeping and vision problems). Then he had severe problems for about

5 weeks. I moved him to a nursing home about the 4th week. After a week in the

nursing home he has done much better other than a fall that required eight

stitches to his head. I struggle with the fact that he is in the nursing home

doing better and hating being there but I cannot risk having him out in the real

world and having another episode.

I think the acting out dreams symptom strongly points to Lewy Body and

Parkinsonism future symptoms. Fluctuations also point to Lewy Body disease.

Hallucinations are also a part of it. All those other meds probably make it

worse. My dad is 83.

Toni

> >

> > > hi sherry, thanks for sharing this about your mom though im so sorry she