Re:Advice Requested on Excessive Sleepiness/Thirst/Meds From Lin

[Guest guest]

Hello Everyone

My mom also complains of only wanting to sleep. Her constant sleepiness was

one of the symptoms that led me to take her to the Dr last spring which

ultimately led to her LBD dx. At that time she kept saying that she felt

drugged. The

drugged feeling added to her paranoia thinking people were coming into her

apt. and spiking her food. Then she actually complained of SEEING people in her

apt at night.

She was put on Aricept once her dx was made. This seemed to alleviate the

drugged feeling and the hallucinations subsided. But she is still sleepy much of

the time and lately she has become delusional and hallucinating again. Last

week I was gone all day and got home at about 8 pm to find the police at my

house. My mom had called them to go and check on me because she said she

received

a call from someone telling her that my life was in danger. She insisted over

several days that this person kept calling her to tell her this. this week she

thinks someone from her apt complex has been coming to her apt, she lets

them in because she thinks the management sent them and she saw this person

steal

her radio. She also accused me of stealing her kitchen flatware!

All of this hallucinating/delusions are very stressful to her. She gets

extremely agitated and angry with me for not doing anything about these problems

she is experiencing. Months ago when she was going through this I didn't think

either one of us was going to get through it. It is bad! Her Dr mentioned

adding Namenda which we haven't done yet. Seems like it is another drug to aid

the

memory. Has anyone had luck with this alleviating hallucinations? I read

mention of seroquel for hallucinations. Then I read that seroquel is bad for LBD

patients. Since mom lives on her own I am so worried about adding additional

meds as it is a struggle to keep her on tract with just the aricept. When she

gets like this my stress level starts going through the roof. Help!

The good news is she finally got to the top of the list for a senior housing

complex close to me. There is an opening and our paperwork is submitted. Cross

you fingers for us. It will be such a relief to have her right down the

street from me instead of 15 miles away.

Thanks for listening

& mom ginny 83, dx summer 2006

[Guest guest]

,

My heart goes out to you. Your mom has probably reached the point of needing

24 hour companionship. Even with a reliable backup caregiver, the constant

duty will wear you down.

About the stage you describe that your mom is; my mom and my sister were both

taking much needed naps, while I got some outside time.

Mom got up, and sneeked out of the house. She was intent on taking a sack of

apples to our horses. ( The horses were fat as butter balls, but that didn't

matter ) . When I spotted her tottering across the lawn with her walker, I

ran to her , and got within a yard of her before she fell.

While we were getting ready to go to the emergency ward, I had to awaken

sister, as she was exhausted from the eratic- troubled night that she and mom

shared the previous night.

That was mom's first broken hip, and mom's last horse feeding episode. It

was the last time she ever walked by herself, unassisted. By the time that mom

got home from the hip replacement, LBD / Lewy had robbed her of her balance.

After that, even with a walker, mom poor balance would cause her start to fall

backwards.

Dann

wtheri1022@... wrote:

Hello Everyone

My mom also complains of only wanting to sleep. Her constant sleepiness was

one of the symptoms that led me to take her to the Dr last spring which

ultimately led to her LBD dx. At that time she kept saying that she felt

drugged. The

drugged feeling added to her paranoia thinking people were coming into her

apt. and spiking her food. Then she actually complained of SEEING people in her

apt at night.

She was put on Aricept once her dx was made. This seemed to alleviate the

drugged feeling and the hallucinations subsided. But she is still sleepy much of

the time and lately she has become delusional and hallucinating again. Last

week I was gone all day and got home at about 8 pm to find the police at my

house. My mom had called them to go and check on me because she said she

received

a call from someone telling her that my life was in danger. She insisted over

several days that this person kept calling her to tell her this. this week she

thinks someone from her apt complex has been coming to her apt, she lets

them in because she thinks the management sent them and she saw this person

steal

her radio. She also accused me of stealing her kitchen flatware!

All of this hallucinating/delusions are very stressful to her. She gets

extremely agitated and angry with me for not doing anything about these problems

she is experiencing. Months ago when she was going through this I didn't think

either one of us was going to get through it. It is bad! Her Dr mentioned

adding Namenda which we haven't done yet. Seems like it is another drug to aid

the

memory. Has anyone had luck with this alleviating hallucinations? I read

mention of seroquel for hallucinations. Then I read that seroquel is bad for LBD

patients. Since mom lives on her own I am so worried about adding additional

meds as it is a struggle to keep her on tract with just the aricept. When she

gets like this my stress level starts going through the roof. Help!

The good news is she finally got to the top of the list for a senior housing

complex close to me. There is an opening and our paperwork is submitted. Cross

you fingers for us. It will be such a relief to have her right down the

street from me instead of 15 miles away.

Thanks for listening

& mom ginny 83, dx summer 2006

[Guest guest]

wtheri1022@... wrote:

> My mom also complains of only wanting to sleep. Her constant

> sleepiness was one of the symptoms that led me to take her to the Dr

> last spring which ultimately led to her LBD dx.

Prior to Mom's fall and her later diagnosis of LBD, she had been

experiencing increased fatigue and sleepiness, which she found terribly

frustrating. She would tell me that if she sat down for any length of

time, she found herself falling asleep. She did/does have sleep

deprivation due, at that time, to sleep disturbances (something she had

for many years) and I now find those are precursors to dementia in later

years. At that time I wrote off her daytime sleepiness to that.

> She was put on Aricept once her dx was made. This seemed to alleviate

> the drugged feeling and the hallucinations subsided. But she is still

> sleepy much of the time and lately she has become delusional and

> hallucinating again.

Mom was started on Seroquel and then later on, Exelon. The Seroquel at

her low dose (37.5 mg), as I've mentioned before, has been wonderful in

quelling her paranoia and hallucinations, and she is aware that the

hallucinations have subsided. The Exelon has profoundly improved her

word finding and short term memory, including remembering names, for

which she is very grateful. The down side of these improvements is that

she is aware that she's " stuck " in the nursing home and the huge

personal bubble Mom has doesn't take kindly to sharing a room or relying

on rotating shifts of aides going through her drawers and closet (as

they get things out that she needs).

> All of this hallucinating/delusions are very stressful to her. She

> gets extremely agitated and angry with me for not doing anything

> about these problems she is experiencing.

Mom found her hallucinations and delusions very anxiety-provoking, and

was tremendously disappointed that I had no magic with which to solve

the problems she was encountering. It's a very hard place for you to

be, but I did find that Mom was sufficiently aware that I could

sometimes say that it was, unfortunately, her LBD giving her

hallucinations that made it seem that these things were taking place.

She actually got to the point of teling me, sometimes, after relating an

event, that it was " probably another one of those hallucinations. "

> Her Dr mentioned adding Namenda which we haven't done yet. Seems

like it is

> another drug to aid the memory. Has anyone had luck with this

> alleviating hallucinations? I read mention of seroquel for

> hallucinations. Then I read that seroquel is bad for LBD patients.

Starting at the minimun dose with the Seroquel (25 mg) worked well for

us, and we are not planning to increase past the 37.5 mg dose because

more than that leaves her too groggy. We are not adding Namenda at this

time and might choose never to do so.

As for the issue of diabetes and Seroquel, here is some information

about Seroquel from http://www.adrugrecall.com/seroquel/seroquel.html:

" [seroquel is a] drug developed for the treatment of schizophrenia,

Seroquel (quetiapine fumarate), is an oral medication that was cleared

by the FDA in 1997. Seroquel is manufactured by Zeneca Pharmaceuticals

and is a member of a new chemical class called dibenzothiazepine

derivatives. Like other new " atypical " antipsychotics, Seroquel carries

a decreased risk of side effects related to loss of motor control, a

major problem with older " typical " antipsychotics. Seroquel is taken

orally in pill form, usually two to three times per day.

Extensive clinical trials show that Seroquel is effective in the

treatment of all manner of symptoms of schizophrenia, from delusions to

apathy. Seroquel affects a range of neurotransmitter receptors,

including serotonin receptors. Users of Seroquel have found the drug to

be as effective as traditional antipsychotic medications, including

Thorazine (chlorpromazine) and Haldol (haloperidol). Until recently, it

appeared that Seroquel was a new miracle drug, effectively controlling

symptoms of schizophrenia, while avoiding the side effects that many

patients found irritating or embarrassing.

In 2004, four medical societies named Seroquel as one of six

anti-psychotic drugs that promote diabetes, obesity or high cholesterol.

In February's issue of the journal, Diabetes Care , the American

Diabetes Association, the American Psychiatric Association, the North

American Association for the Study of Obesity, and the American

Association of Clinical Endocrinologists warned that Seroquel users

should be watched carefully to ensure that they are not developing

diabetes. Additionally, doctors prescribing Seroquel should screen

patients carefully for a history of obesity and diabetes in the patient

and family, as well as the patient's weight, blood pressure, and

cholesterol levels.

Seroquel manufacturers AstraZeneca have been requested by US regulators

to include warnings about the risk of elevated blood sugar and diabetes.

The Japanese Seroquel label includes a prominent warning, specifically

stating that there is a link between diabetes and the use of Seroquel.

The United States label, however, does not reflect this known problem,

meaning that Seroquel users and their physicians may be unaware of the

need to monitor for signs of diabetes. "

The warnings and precautions for use of Seroquel can be found at my

favorite prescription drug on line resource (remember, I am a medical

transcriptionist!), RxList, at

http://www.rxlist.com/cgi/generic2/quetiap_wcp.htm. Do remember that

nearly all prescription medications have long lists of warnings and

possible side effects which are frightening to read. On this site you

can read about the medication in detail to help in deciding whether to

use it or not. Mom and I dscussed the risks, benefits and alternatives

and decided that reducing the hallucinations was worth the risks,

especially since the NH staff and I keep a close eye on her physical

condition.

Mom is 78 years old with blood pressure which is generally on the low

end of normal, blood glucose which runs 90 or so (very normal). She has

gained weight in the nursing home and we are doing regular testing of

her urine and blood to keep track of possible renal problems or onset of

hyperglycemia.

> The good news is she finally got to the top of the list for a senior

> housing complex close to me. There is an opening and our paperwork is

> submitted. Cross you fingers for us. It will be such a relief to have

> her right down the street from me instead of 15 miles away.

Fingers are crossed!

I have been down this road with my dad already, though at that time I

had no clue whatsoever that LBD was a part of what was going on with

him. He was diagnosed with Parkinson's which became progressively worse

and then went into what was called Parkinson's dementia. It was very,

very much like what I see in Mom, though her symptoms of Parkinson's

were subtle and the forgetfulness and dementia-type symptoms were more

evident early on.

It is a difficult thing to live through, for them and for us. This list

has been invaluable in helping me make it more manageable for Mom and in

feeling less like I am groping in the dark.

By the way, I hope any of the other list members who are here in Western

Washington and Oregon are okay. We had the mother of all windstorms for

this area last Thursday, power has been out for me since 4:15 pm

Thursday afternoon, and just came back on early this afternoon. Cold,

cold, cold (41 degrees in my house) and food spoiled and all the stuff

that goes with power outage (finally found a generator to purchase to be

able to get warm yesterday), but we survived and are fine with no damage

to property or to us. I hope everyone else is, too. (It's been quite

an interesting year for me...)

jacqui (in Puget Sound)