You Tube video and Insomnia

[Guest guest]

I watched the YouTube video and noted the doctor's comments

about " benign neglect " as a way to handle hallucinations. Not sure I

can understand this approach.

My mom was diagnosed over two years ago with LBD. Started on all

the " bad " drugs, taken off of them and then put on Exelon, with no

sucess, continued her Ativan until recently, and also recently

discontinued her antidepressant. She has been so much better of late

that her neurologist said he didn't think she ever had LBD - the

hallucinations were from the meds she was on (prescribed, BTW, by his

wife, mom's internist!).

Anyway, now she is hallucinating again. There were five of us with her

on Sunday. No way to distract her from seeing the face in the arm of

the couch and her getting up constantly to move the arm cover and

check. My 4 yo and 6 yo were there too - her grandchildren. Didn't

matter. Tried to get her watch the Belmont Triple Crown. Nothing. So

this idea of socializing does not work for her. She was never a social

person - never calls anyone, not even her twin sisters who just turned

90 last month!

The neurologist thinks it is because she is not sleeping enough - a new

occurrence for the past month. Could some one tell me the laymen's

names of the drugs for insomnia that Dr. Boeve talks about on page 17

of his article: Diagnostic Review & Medicine Management

by Bradley F. Boeve, MD (October 2004) Physicians guide to diagnosing

and treating DLB/LBD. Includes recommended dosages.

http://www.lewybodydementia.org/Boevelink.php?

The neurologist gave her Ambien, of all things, last month. She took

it one or two nights without any success. Now I see on this group that

it is not recommended for LBD! I suggested again that they check for a

UTI.

BTW, I am not my mother's caregiver. My brother and sister who live

near her oversee her care, along with 24/7 aides. I am just trying to

find info for them. Thanks for listening.

Margaret

NJ

[Guest guest]

There have been success stories w/ Melatonin for insomnia - it's over

the counter I believe and is one that's part of Dr. Boeve's article.

The others he mentions are:

Trazodone (which is an antidepressant)

http://en.wikipedia.org/wiki/Trazodone

Zolpidem (Ambien - so he recommends this med while many on this list

had bad reactions to this - so try a different one)

http://en.wikipedia.org/wiki/Zolpidem

Quetiapine (Seroquel)

http://en.wikipedia.org/wiki/Quetiapine

Chloral hydrate (sounds too strong in my humble opinion - no MD here)

http://en.wikipedia.org/wiki/Chloral_hydrate

Melatonin

http://en.wikipedia.org/wiki/Melatonin

So from the above, I'd try Melatonin... but first have other things

been tried? Dr. Gomperts said the following re: sleep:

" Another good (and hard) question. Sleep problems are common in LBD.

Patients often sleep during the day (many for more than 2 hours

total), and that can lead to nighttime wakefulness. This can even

lead to full-blown sleep-wake reversal.

This can be hard to treat. One thing to do is to try to minimize

daytime naps, as possible, to help the patient return to a nighttime

sleep pattern. It is also important to have your loved one's doctor

review his medications, to check whether some of his night-time dosed

medications may in fact be activating him, and if some of his

morning/day time medications may be contributing to daytime

somnolence. If that's the case, it may be possible to move the

activating medications to morning, and the sleep-enhancing

medications to night.

Another approach would be to substitute in an otherwise equivalent

medication for another to provide more morning activation or more

nighttime sleepiness. Sleep medications like benzodiazepines can

cause confusion, and should be avoided.

An antidepressant that provides a little sleepiness, however, may be

worthwhile. "

From: http://www.lewybodydementia.org/docs/gomperts_transcript.pdf

And while I'm at it... Calming music before bedtime is something that

can help:

Trouble sleeping?

Bedtime Beats® was inspired by a study conducted and authored by a

nursing team from Case Western Reserve University. The study found

that listening to classical or soft jazz music that cycles at 60-80

beats per minute prior to bedtime led to a more restful and

satisfying night's sleep.

http://bedtimebeats.com/

Here's additional links re: Melatonin:

[Melatonin] Double-barreled Weapon Against Alzheimer's as Near as the

Bathroom Cabinet (press release)

.... " It can also ease sleep-disruption and sundowning in Alzheimer's

victims, according to recently published studies. " Originally

published July 27 2006

http://www.newstarget.com/z019794.html

2005, August -- The use of memantine in dementia with Lewy bodies.

Memantine can be used safely in patients with DLB, but its

symptomatic effects may be variable.

http://www.ncbi.nlm.nih.gov/pubmed/16131729

; loving daughter of Maureen of Boston, MA; dx'd with LBD in

2/2006 (confirmed via brain biopsy;) fell victim to rapid decline

from Risperidone; Mom fell into the 50% category of those who could

not handle antipsychotics; Was successful on Celexa, Exelon, ALA &

B1; Mom became my Guardian Angel on Sept. 30th, 2006.

>

> I watched the YouTube video and noted the doctor's comments

> about " benign neglect " as a way to handle hallucinations. Not sure

I

> can understand this approach.

>

> My mom was diagnosed over two years ago with LBD. Started on all

> the " bad " drugs, taken off of them and then put on Exelon, with no

> sucess, continued her Ativan until recently, and also recently

> discontinued her antidepressant. She has been so much better of

late

> that her neurologist said he didn't think she ever had LBD - the

> hallucinations were from the meds she was on (prescribed, BTW, by

his

> wife, mom's internist!).

>

> Anyway, now she is hallucinating again. There were five of us with

her

> on Sunday. No way to distract her from seeing the face in the arm

of

> the couch and her getting up constantly to move the arm cover and

> check. My 4 yo and 6 yo were there too - her grandchildren.

Didn't

> matter. Tried to get her watch the Belmont Triple Crown.

Nothing. So

> this idea of socializing does not work for her. She was never a

social

> person - never calls anyone, not even her twin sisters who just

turned

> 90 last month!

>

> The neurologist thinks it is because she is not sleeping enough - a

new

> occurrence for the past month. Could some one tell me the laymen's

> names of the drugs for insomnia that Dr. Boeve talks about on page

17

> of his article: Diagnostic Review & Medicine Management

> by Bradley F. Boeve, MD (October 2004) Physicians guide to

diagnosing

> and treating DLB/LBD. Includes recommended dosages.

> http://www.lewybodydementia.org/Boevelink.php?

>

> The neurologist gave her Ambien, of all things, last month. She

took

> it one or two nights without any success. Now I see on this group

that

> it is not recommended for LBD! I suggested again that they check

for a

> UTI.

>

> BTW, I am not my mother's caregiver. My brother and sister who

live

> near her oversee her care, along with 24/7 aides. I am just trying

to

> find info for them. Thanks for listening.

>

> Margaret

> NJ

>