Re: use of seroquel

[Guest guest]

Joan:

What your Mother is taking is certainly not as low a dose as my Mother.

My Mum is taking only 50 mg a day total and that was increased from

37.5 mg per day when she started. Mum is certainly sleepy on her small

dose, she doses off and on all day sitting in a chair. Unless Aricept

also causes sleepiness she is taking nothing else to cause her to be

sleepy. I think sleepiness is a side effect of LBD itself. Mum

doesn't usually talk about hallucinating but I can tell from the way

she will look at empty spaces that she is seeing things.

in Ontario, Canada

--- joansteveh1 wrote:

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

Hi, I haven't posted in a while, but I do read the messages. I have

a question for those whose LO's take seroquel. My mother takes 75mg

at night, 25 in morning, and 25 at lunch time. Is this considered a

low dosage? My mother's psychiatrist feels this is a comfortable

level for her (she also takes 8mg of Reminyl daily)and most of the

time I think it is. Since September though, her ability to

communicate has really declined. She can talk a blue streak, but

often her sentences are totally disconnected. She does know the

family, but continues to hallucinate, bouts of paranoia, even has my

brother having an affair with one of the CNA's. I will often review

the literature on LBD when I get in one of these questioning funks,

but realize this decline is all part of the progression of the

disease I think, but I am constantly questioning whether the meds

contribute to her mental decline- I read the adverse reactions- often

sleepyness, but what about increased confusion, anyone experience

that. We are going to have my mother seen by another neurologist as

advised by the psychiatrist, mainly to help convince myself that this

is all part of the dreadful LBD. I sometimes wonder if I have

accelerated this disease because I don't demand to take her off the

medicines, but who knows where she would be. sorry to ramble, but I

am in one of my " I can't believe this is happening " periods. Joan

Hackett

Welcome to LBDcaregivers.

[Guest guest]

Joan,

My Mother has worked up to a fairly large dose. She takes 50 MG in the morning,

75 MG at

noon, 200 MG at night. She wasn't sleeping at night so the 200 helps knock her

out. At

first the morning and lunch doses made her sleepy, but she adjusted to them. It

takes that

level to keep her somewhat calm. She still has some hallucinations, paranoia,

and

delusions, but they are a lot less.

Everyone's different and can tolerate different medication and different levels,

but the

body does seemed to be able to overcome the sleepiness if you increase slowly.

I don't think that the trouble with communication is the Seroquel, I think it's

the LBD. My

Mother was always a very good communicator and one of her first symptoms of LBD

was

having trouble finding the right words. My Mother declined rapidly, so I have

seen her

without the medication and she is much better with the medication.

The one drug that helped the most for communicating was Exelon. Not everyone can

tolerate it, but for my Mother is has been almost a miracle drug.

My Mother takes Exelon, Namenda, Zoloft, and Seroquel and it takes all of these

to make

her life somewhat bearable. The doctored added them one at a time so that we

could see if

they helped. It took more than six months, but it had made a hugh difference in

her

quality of life.

I hope I have helped you a little.

Good Luck,

in Dallas

>

> Hi, I haven't posted in a while, but I do read the messages. I have

> a question for those whose LO's take seroquel. My mother takes 75mg

> at night, 25 in morning, and 25 at lunch time. Is this considered a

> low dosage? My mother's psychiatrist feels this is a comfortable

> level for her (she also takes 8mg of Reminyl daily)and most of the

> time I think it is. Since September though, her ability to

> communicate has really declined. She can talk a blue streak, but

> often her sentences are totally disconnected. She does know the

> family, but continues to hallucinate, bouts of paranoia, even has my

> brother having an affair with one of the CNA's. I will often review

> the literature on LBD when I get in one of these questioning funks,

> but realize this decline is all part of the progression of the

> disease I think, but I am constantly questioning whether the meds

> contribute to her mental decline- I read the adverse reactions- often

> sleepyness, but what about increased confusion, anyone experience

> that. We are going to have my mother seen by another neurologist as

> advised by the psychiatrist, mainly to help convince myself that this

> is all part of the dreadful LBD. I sometimes wonder if I have

> accelerated this disease because I don't demand to take her off the

> medicines, but who knows where she would be. sorry to ramble, but I

> am in one of my " I can't believe this is happening " periods. Joan

> Hackett

>

[Guest guest]

Hi,

the seroquel (50 am; 50 1pm, 75 at nite and a standing " as needed "

dose) was quite helpfull in keeping my dad's agitation from the

hallucinations down. They do lose the ability to speak coherently

but we communicate by following his gestures and every once in a

while he blurts out something clear as day.

Exelon may give her some " clarity " for a while but the disease is a

rollercoaster ride and for some faster than others. But without the

seroquel my dad could not be controlled as he was quite strong. Now

he is in the later stages and we have gradually reduced (and this

week eliminated) all seroquel. He just sleeps most of the time but

still has a great appetite.... Talk to the doctors about your

concerns, but most likely the speach issue is due to the disease.

If she is sleeping a lot then i would say the seroquel is too

strong...

>

> Hi, I haven't posted in a while, but I do read the messages. I

have

> a question for those whose LO's take seroquel. My mother takes

75mg

> at night, 25 in morning, and 25 at lunch time. Is this considered

a

> low dosage? My mother's psychiatrist feels this is a comfortable

> level for her (she also takes 8mg of Reminyl daily)and most of the

> time I think it is. Since September though, her ability to

> communicate has really declined. She can talk a blue streak, but

> often her sentences are totally disconnected. She does know the

> family, but continues to hallucinate, bouts of paranoia, even has

my

> brother having an affair with one of the CNA's. I will often

review

> the literature on LBD when I get in one of these questioning

funks,

> but realize this decline is all part of the progression of the

> disease I think, but I am constantly questioning whether the meds

> contribute to her mental decline- I read the adverse reactions-

often

> sleepyness, but what about increased confusion, anyone experience

> that. We are going to have my mother seen by another neurologist

as

> advised by the psychiatrist, mainly to help convince myself that

this

> is all part of the dreadful LBD. I sometimes wonder if I have

> accelerated this disease because I don't demand to take her off

the

> medicines, but who knows where she would be. sorry to ramble, but

I

> am in one of my " I can't believe this is happening " periods. Joan

> Hackett

>

[Guest guest]

Hi Joan,

My took one tab a day - half in the afternoon and half at dinner. This

was all she could tolerate. She did talk a lot at the beginning of the

disease, a lot of confusion, but as it progressed she stopped talking

all together.

Please don't torture yourself over the meds - I did that till I thought

my head would explode. You can always try your mom on a little less to

see if that helps at all. I only recently had mom taken off all meds

(except aricept) because she is at end stages. Up until then I felt

that perhaps the meds where helping her a least a bit.

We are all just doing the best we know how. Your mom is lucky to have a

daughter like you to care for her and question all aspects of this

disease for her.

Hang in there.

Courage

[Guest guest]

Joan

My Mom have very bad reactions to seroquel. Her hallucinations were a lot

worse when she was on it. They kept increasing it saying they would find the

right dosage for her. She would see people with plants growing out of there

eyes or noses. She became very paranoid about people who would come to

visit. She finally ended up in the hospital on the Psycho ward for 5 days. The

doctor finally saw for himself what she was like and finally listened to me and

took her off seroquel.

Keep notes on her to take to the doctor. Especially her reactions after

taking the seroquel. Be proactive for your Mom's sake. Make them listen to

you, after all they aren't there taking care of her, you are....

Good Luck and Hugs

Jacqui

[Guest guest]

Another newbie jumps in,

My 83 year old mother is in the last stages of LBD. Totally

bedridden since a bout of pneumonia last summer, from which the

doctors did not expect her to survive, she mainly sleeps and varies

wildly in consciousness/coherence. She is lucky to be able to be

cared for in her home, tended to lovingly by 3 angels to whom my

father and I will be eternally grateful.

She has been on just about everything - aricept, exelon, seroquel,

sinamet - in miniscule dosages which my father cuts up, since she

weighs less than 80 lbs. Seroquel was supposed to help with the

terrifying hallucinations caused by the sinamet. She is so sensitive

to the dopamine-related meds that even tyrosine made her crazy.

When she was being pumped up with antibiotics last summer, she was

taken off of all other meds and has improved greatly since. The

frightening visions are gone and she is happy and peaceful. If she

shows any agitation she is given a tiny dose of Xanax, which she has

always tolerated well.

The other, bizarre thing that has happened since she was in hospital

is that after months of not eating, she is now eating like a small

shetland pony. She has to be fed and everything goes into the

blender but she eating more healthily than I can ever remember:

oatmeal and fresh fruit for breakfast, a thick soup and something

like chicken salad for lunch, fresh fish and vegetables for dinner.

SHe also loves any manner of potatoes and those prepared puddings in

little tubs.

This appetite started in hospital, when all the doom doctors,

hospice staff and palliative care people were hovering like buzzards

and passing out brochures like the one that has recently been

published here. I must say, my darling Mum has always kept us

guessing about what she does next and she continues so to do. We

celebated her birthday the other week, having despaired last summer

that we would see it with her.

So my experience is to cut out the psychotropics and dopamine drugs,

if poss and try to provide fresh food as chemical free as possible.

Also, lots of cranberry juice.

On another note,

a few of use here in the UK (such as Sally who recently posted) are

forming a support charity here. We would be glad to hear from you

and even more glad if you would like to help. We are just starting

out and there is a lot to do. You can contact either me or Sally or

all@... and would be very welcome.

With every wish for an happier new year.

in Essex (England)

> >

> > Hi, I haven't posted in a while, but I do read the messages. I

> have

> > a question for those whose LO's take seroquel. My mother takes

> 75mg

> > at night, 25 in morning, and 25 at lunch time. Is this

considered

> a

> > low dosage? My mother's psychiatrist feels this is a comfortable

> > level for her (she also takes 8mg of Reminyl daily)and most of

the

> > time I think it is. Since September though, her ability to

> > communicate has really declined. She can talk a blue streak,

but

> > often her sentences are totally disconnected. She does know the

> > family, but continues to hallucinate, bouts of paranoia, even

has

> my

> > brother having an affair with one of the CNA's. I will often

> review

> > the literature on LBD when I get in one of these questioning

> funks,

> > but realize this decline is all part of the progression of the

> > disease I think, but I am constantly questioning whether the

meds

> > contribute to her mental decline- I read the adverse reactions-

> often

> > sleepyness, but what about increased confusion, anyone

experience

> > that. We are going to have my mother seen by another

neurologist

> as

> > advised by the psychiatrist, mainly to help convince myself that

> this

> > is all part of the dreadful LBD. I sometimes wonder if I have

> > accelerated this disease because I don't demand to take her off

> the

> > medicines, but who knows where she would be. sorry to ramble,

but

> I

> > am in one of my " I can't believe this is happening " periods.

Joan

> > Hackett

> >

>