Re: Halluicinations

[Guest guest]

Like a sugar high with a two year old, we tried and figure out if there were

patterns when the halluicinations were worst.

My mother's hallucinations seemed to be less troublesome as her RX was

reduced, from the PD / Parkinson meds. When she was diagnosed with LBD, the

doctor suggested that we try to withdraw from the Sinimet & Requip, and he

started her on the Aricept. We had several months that were almost free of

troublesome hallucinations.

Meal time effects how pills work. For example: simimet should NOT be taken

with a protein (rich) meal. Milk and calcium fortified juices can trigger

nausia with some antibiotics, so we don't drink juice just before or just after

taking those kind of pills.

Dann

jonibeachbound wrote:

Hello Group,

I'm the caregive for my father who was diaognised with LBD in August

05. His hallucinations are here with him 24/7. Does anyone know if

they subside at all or what may be the progression of this ? I realize

everyone is different, but I just thought I would try to see if anyone

knows on any meds that might help with this, they are so bad at times

that his anxiety levels go way up. My heart is bleeding for him. Any

advice would be wonderful.

Thank you.

[Guest guest]

Dear Joinibeachbound: Seroquel worked wonders with my husband for the

hallucinations. Also, try hard to " go with them " . Logic and arguing are futile

and only upset the LO. I know how hard that is especially when the

hallucinations involve me. Good look on getting through this.

Myrna (68) in Missouri

Caregiver for Husband Jerry (71)

Diagnosed AD 1997, LBD 2004

[Guest guest]

Myrna, good advice about hallucinations. My LO, wife Rosie (83), has been on

Seroquel, Namenda, and Exelon for a long time. Her hallucinations are

aggravating (she does hour long, question and answer, Bible Study programs on

the " airwaves " every day . . . amazing to watch and to listen to her . . .she's

quite skillful at it ) . . . yesterday she wanted to go to the den to see

" Roxanne " (one of her imaginary friends . . . has a whole family of them and has

for five years or so) . . .wanted to go to her closet first and get " Roxanne's "

green pants . . . convinced her we needed to go to the den first to make sure

she was there . . .of course she wasn't . . .then she was in the garage . . .

went there and she wasn't there, either . . . then the blue shed (storage) . .

..went there and it was locked from the outside . . . then behind the shed . . .

all this while I was barefoot . . . finally she thanked me and we went back

into the house . . . just an example. Arguing,

showing, telling . . . none of it reaches her understanding . . . just try (as

much as I can) to " go with the flow. " We have an excellent caregiver three

da/wk/8 hrs/da . . .or I would go crazy . . . on those days I work as a contract

chaplain in the county correctional complex . . . Ivan (of Austin, grew up in

MO)

myrnajohnson wrote: Dear Joinibeachbound: Seroquel worked

wonders with my husband for the hallucinations. Also, try hard to " go with

them " . Logic and arguing are futile and only upset the LO. I know how hard that

is especially when the hallucinations involve me. Good look on getting through

this.

Myrna (68) in Missouri

Caregiver for Husband Jerry (71)

Diagnosed AD 1997, LBD 2004

[Guest guest]

Hello

My dad's first symptom of LBD was hallucinations. The first medication his

doctor

prescribed was Seroquel, within a day or two of starting the medication his

hallucinations

lessened tremendously. He has been taking 1/2 tab. (12 mg.) of seroquel at

bedtime and

Namenda and Exelon twice a day.

It will be 2 years this month that he was diagnosed and started on the

medications, but

unfortunately we have been noticing an increase in the hallucinations and

cognitive decline.

Rhonda

>

[Guest guest]

Rhonda: That is a very small dosage of Seroquel. My husband takes 50 mg at

8:00 am & pm. He was gradually increased from the 12.5 dosage at the beginning.

Maybe you should speak to your doctor about an increased dosage before the

hallucinations get out of control.

Myrna (68) in Missouri

Caregiver for Husband Jerry (71)

Diagnosed AD 1997, LBD 2004

Re: Halluicinations

Hello

My dad's first symptom of LBD was hallucinations. The first medication his

doctor

prescribed was Seroquel, within a day or two of starting the medication his

hallucinations

lessened tremendously. He has been taking 1/2 tab. (12 mg.) of seroquel at

bedtime and

Namenda and Exelon twice a day.

It will be 2 years this month that he was diagnosed and started on the

medications, but

unfortunately we have been noticing an increase in the hallucinations and

cognitive decline.

Rhonda

>

[Guest guest]

Myrna,

We have tried in the past to increase his dosage of Seroquel, but it seemed to

make him

more agitated and confused. We are going to ask the doctor about giving him

12.5 mg. in

the morning and then the usual 12.5 mg. at bedtime.

Rhonda

Caregiver to dad Dennis (70)

Diagnosed in August 2004

>

> Rhonda: That is a very small dosage of Seroquel. My husband takes 50 mg at

8:00 am

& pm. He was gradually increased from the 12.5 dosage at the beginning. Maybe

you

should speak to your doctor about an increased dosage before the hallucinations

get out

of control.

> Myrna (68) in Missouri

> Caregiver for Husband Jerry (71)

> Diagnosed AD 1997, LBD 2004

>

> Re: Halluicinations

>

>

> Hello

>

> My dad's first symptom of LBD was hallucinations. The first medication his

doctor

> prescribed was Seroquel, within a day or two of starting the medication his

hallucinations

> lessened tremendously. He has been taking 1/2 tab. (12 mg.) of seroquel at

bedtime

and

> Namenda and Exelon twice a day.

> It will be 2 years this month that he was diagnosed and started on the

medications, but

> unfortunately we have been noticing an increase in the hallucinations and

cognitive

decline.

>

> Rhonda

>

> >

>

>

>

>

>

>

[Guest guest]

Hi,

I have been a member for a while, but rarely post. I do read alot of the

messages and was glad to see that another LBD patient does have halluicinations

24/7. My dad has been suffering with LB for about 4 years now. For the past

2 the halluicinations have been non-stop. He has been on about all the

recommened meds. He has had the most success with the Seroquel. In fact, when

they first put him on it he was like my old dad, for about two weeks, then he

quickly went back. Of course for me and my family, the play along game is about

all we can do. My dad still functions fine, he is 69, but I can be sure at

least 100 times a day to hear a wild story, or to be in a room with 5+ people

that I can't see. I feel we have a great doctor, Dr from Pittsburgh, we

still keep trying, but it is heartbreaking. I hope you find a med to help your

father, it seems like the Seroquel has really helped others in the group.

jonibeachbound wrote:

Hello Group,

I'm the caregive for my father who was diaognised with LBD in August

05. His hallucinations are here with him 24/7. Does anyone know if

they subside at all or what may be the progression of this ? I realize

everyone is different, but I just thought I would try to see if anyone

knows on any meds that might help with this, they are so bad at times

that his anxiety levels go way up. My heart is bleeding for him. Any

advice would be wonderful.

Thank you.

---------------------------------

Get your email and more, right on the new Yahoo.com

[Guest guest]

What meds is you Dad on? With my Mom Seroquel was the culprit. She got

worse as they increased the dose. When we took her off it the hallucinations

were less and not so violent.

Before we took her off she would have hallucinations of people with plants

growing out of their eyes and mouths and they were coming to get her. She

didn't have hallucinations until the end then and they were of children who were

hungry. So she wouldn't eat until I fed them. But like I said that was

toward the end when she had already started not eating and she was on no meds

for LBD, just the ones for her heart and blood pressure.

Some LBD can take Seroquel and some can't.

Jacqui in Florida

[Guest guest]

Barb,

I rarely post as well, and I do read alot of the postings. I've just been

heartbroken with all my Dad's hallucinations / delusions and I was in hopes that

there might have been other meds out there that we had not tried. My father

just turned 70, and we are taking seroquel, but only at night because it does

knock him out, we tried giving him 25 mg during the day, but it was just making

him want to sleep. He has other compications as well, he is in advanced stages

of COPD, plus he is recovering from a broken back, from an injury Oct of 2005.

It's conformting to me as well, knowing that I'm not the only one that is

dealing with all of the people, animals, water that I can't see. We do joke

about it periodically with Dad, but I know deep down this has got to be waying

on his mind !!! I live in the Orlando, FL area, you mentioned Pitts ? The

company I work for is based out of Pitts. Great people live there !!!

All we can do is take one day at a time, stay close to his neurologist and

pray that everything goes smoothly....

Joni

Barb wrote:

Hi,

I have been a member for a while, but rarely post. I do read alot of the

messages and was glad to see that another LBD patient does have halluicinations

24/7. My dad has been suffering with LB for about 4 years now. For the past 2

the halluicinations have been non-stop. He has been on about all the recommened

meds. He has had the most success with the Seroquel. In fact, when they first

put him on it he was like my old dad, for about two weeks, then he quickly went

back. Of course for me and my family, the play along game is about all we can

do. My dad still functions fine, he is 69, but I can be sure at least 100 times

a day to hear a wild story, or to be in a room with 5+ people that I can't see.

I feel we have a great doctor, Dr from Pittsburgh, we still keep trying,

but it is heartbreaking. I hope you find a med to help your father, it seems

like the Seroquel has really helped others in the group.

jonibeachbound wrote:

Hello Group,

I'm the caregive for my father who was diaognised with LBD in August

05. His hallucinations are here with him 24/7. Does anyone know if

they subside at all or what may be the progression of this ? I realize

everyone is different, but I just thought I would try to see if anyone

knows on any meds that might help with this, they are so bad at times

that his anxiety levels go way up. My heart is bleeding for him. Any

advice would be wonderful.

Thank you.

---------------------------------

Get your email and more, right on the new Yahoo.com

[Guest guest]

He is on 4.5 mg of Exelon and 50 mg of Seroquel at night, we only give it to him

at night otherwise he will be up all night chasing these people away. We've

tried it both ways with him, with it and without it....it doesn't help much, his

Dr. recommended we leave him on it at night for sleeping purposes.

He's on lot's of other meds as well, Theophylline & singulair for his COPD,

ditopan for his bladder, fibercon, colace for his bowels, Nexium for his hiatial

hernia.

He started probably 2 years ago seeing things periodically, now it's all the

time. Not only does he see them he feels as if sometimes they are spraying water

on him, and he swears that he can smell a certain person with very bad body

odor...my heart goes out to him

Joni

mamajacqui@... wrote:

What meds is you Dad on? With my Mom Seroquel was the culprit. She got

worse as they increased the dose. When we took her off it the hallucinations

were less and not so violent.

Before we took her off she would have hallucinations of people with plants

growing out of their eyes and mouths and they were coming to get her. She

didn't have hallucinations until the end then and they were of children who were

hungry. So she wouldn't eat until I fed them. But like I said that was

toward the end when she had already started not eating and she was on no meds

for LBD, just the ones for her heart and blood pressure.

Some LBD can take Seroquel and some can't.

Jacqui in Florida

[Guest guest]

my dad topped out on ethe exelon 6mg twice a day, and he used zoloft for his

halluiciantions we gave him one tablet at nightitime to help him sleep andn not

be bothered by his restless leg issues as welle. hugs, sharon m

---- Joni Henry wrote:

He is on 4.5 mg of Exelon and 50 mg of Seroquel at night, we only give it to him

at night otherwise he will be up all night chasing these people away. We've

tried it both ways with him, with it and without it....it doesn't help much, his

Dr. recommended we leave him on it at night for sleeping purposes.

He's on lot's of other meds as well, Theophylline & singulair for his COPD,

ditopan for his bladder, fibercon, colace for his bowels, Nexium for his hiatial

hernia.

He started probably 2 years ago seeing things periodically, now it's all the

time. Not only does he see them he feels as if sometimes they are spraying water

on him, and he swears that he can smell a certain person with very bad body

odor...my heart goes out to him

Joni

mamajacqui@... wrote:

What meds is you Dad on? With my Mom Seroquel was the culprit. She got

worse as they increased the dose. When we took her off it the hallucinations

were less and not so violent.

Before we took her off she would have hallucinations of people with plants

growing out of their eyes and mouths and they were coming to get her. She

didn't have hallucinations until the end then and they were of children who were

hungry. So she wouldn't eat until I fed them. But like I said that was

toward the end when she had already started not eating and she was on no meds

for LBD, just the ones for her heart and blood pressure.

Some LBD can take Seroquel and some can't.

Jacqui in Florida

[Guest guest]

joni,

welcome to our family although it saddens me that you had to find us. here,

please feel free to vent, scream, cry, yell, laugh, tell stories, whatever it

takes to help you thru these hard times.

please be sure that all legal paperwork is done, wills, power of atty, medical

directives. it is very difficult to do, but is very important.

with lbd there are no distinct stages as our loved ones bounce around so fast

that there are no set stages'. except in the very end, when they become bed

bound and less willing to eat.

dad took exelon for about 1 year and he was doing very well on it, meaning his

progress with the disease did not go as fast as it did prior to taking exelon.

dad had severe hallucinations and most of them were dangerous in one way or

anohter. we fially discovered that zoloft helped his hallucinations quite a

bit, he still had them but he wasnt as hateful to me as he was before and the

zolof didnt adversely effect him either. he started out at 50 mg daily and

before his died 1 year later he was up to 150 mg daily. we usually gave dad his

around 11am as that was when daddy ate his first big meal of the day. that

usually helped. good luck and hugs, sharon m

---- jonibeachbound wrote:

Hello Group,

I'm the caregive for my father who was diaognised with LBD in August

05. His hallucinations are here with him 24/7. Does anyone know if

they subside at all or what may be the progression of this ? I realize

everyone is different, but I just thought I would try to see if anyone

knows on any meds that might help with this, they are so bad at times

that his anxiety levels go way up. My heart is bleeding for him. Any

advice would be wonderful.

Thank you.

--

Daugher of Leonard, diag May 2004, had lbd since 1993, had hip surgery from fall

7/05, aspiration pneumonia 7/05 with pulmonary embolyis, had aspiration

pneumonia and uti 8/05, died of blood pressure drop on 9/25/05,

may he rest in peace with his mom and dad,

a smile a day keeps the meanies away

[Guest guest]

rhonda,

you all had 2 years of good results with exelon and namenda, that is excellent.

those are usually effective for about 1 year each. that is good that you got so

much good results. i am sorry that the decline has started again, good luck and

hugs, sharon m

---- Rhonda wrote:

Hello

My dad's first symptom of LBD was hallucinations. The first medication his

doctor

prescribed was Seroquel, within a day or two of starting the medication his

hallucinations

lessened tremendously. He has been taking 1/2 tab. (12 mg.) of seroquel at

bedtime and

Namenda and Exelon twice a day.

It will be 2 years this month that he was diagnosed and started on the

medications, but

unfortunately we have been noticing an increase in the hallucinations and

cognitive decline.

Rhonda

>

--

Daugher of Leonard, diag May 2004, had lbd since 1993, had hip surgery from fall

7/05, aspiration pneumonia 7/05 with pulmonary embolyis, had aspiration

pneumonia and uti 8/05, died of blood pressure drop on 9/25/05,

may he rest in peace with his mom and dad,

a smile a day keeps the meanies away

[Guest guest]

Hi Joni, I missed your coming on board, but I am glad you are here, only I

wish it were under other circustances.

I think our dear Sharon M. has welcomed you very nicely, so I will ride on

her coat tail, and say I agree, and I send a big warm welcome, with her's!

Imogene

Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with

Parkinsonism.