Re: To Jacqui - Thank You!

[Guest guest]

Dear Jacqui - No complaints from me - you are very responsive and I'm so

grateful for all the comments. Seeing the Provigil info you sent reminded me of

what I had read before - likely bad news for my mom too - some underlying mental

illness never treated before she got the PD/LBD diagnosis. So if it causes

trouble for healthy people . . .

I wonder if further cutting back on mom's current 50 mg Seroquel would help.

She was comfortably at 75 mg for quite a while - we raised it last summer when

she had lots of infections and was pretty unmanageable - now we are down to 50

and still massive sleeping. So could be worth a try.

Am very interested in the Seroquel apparently addressing your mom's

depression/anxiety (if I understood this right). Mom takes 15 mg Lexapro - has

always had terrible depression and this seemed to help for a long time.

All this being revisited in my head because the fatigue upsets her so much.

Jacqui, thank you again. I'm very grateful for your help, and that of everyone

here.

Peaceful dreams tonight, Lin

jacqui wrote:

l pratt wrote:

> ...My questions were about what others think/feel/do about the

> matter, and if anyone had heard of/tried a med called Provigil, which

> is used for daytime sleepiness in Parkinson's.

My dad was never prescribed anything for his daytime sleepiness with his

Parkinson's and it has never been suggested for Mom, either. I am,

however, familiar with Provigil, and side effects it has include

nervousness, anxiety, agitation, confusion, and emotional lability

(among other things).

A caution for Provigil states, " There have been reports of psychotic

episodes associated with PROVIGIL use. One healthy male volunteer

developed ideas of reference, paranoid delusions, and auditory

hallucinations in association with multiple daily 600 mg doses of

PROVIGIL and sleep deprivation. There was no evidence of psychosis 36

hours after drug discontinuation. Caution should be exercised when

PROVIGIL is given to patients with a history of psychosis. "

Provigil is contraindicated for patients who have or had psychosis - and

I do know that Mom's behavior at times could be characterized as

psychotic. I'm not sure if these folks would consider dementia to fall

under that umbrella.

Patient information for Provigil states: " The most common side effects

of PROVIGIL are headache, nausea, nervousness, stuffy nose, diarrhea,

back pain, anxiety, trouble sleeping, dizziness, and upset stomach.

PROVIGIL may cause the following infrequent serious side effects. Call

your doctor or get emergency help if you have any of these or any other

serious side effects while taking PROVIGIL:

* chest pain.

* mental problems.

* allergic reactions, such as a rash, hives or other allergic

reaction. "

No doubt you already knew all this - but in fact, my personal opinion of

this medication is that it would not be a good choice for my mother.

> I know the sleepiness has to do with my mom's diseases, the meds and

> inactivity. If she did not mind, I would let it go. But worries and

> upsets her, and she asks for help to get over it. Thus my questions.

When Mom's Seroquel went from 25 mg in the evening to 50 mg of Seroquel

(25 in the evening and 25 in the morning) she absolutely could not stay

awake and she was exhausted by any physical exertion. Her dose was cut

back to 37.5 mg at bedtime, and she has far less problem with fatigue

and daytime sleepiness, though it is not completely resolved. 25 mg

helped with the hallucinations but did not eliminate them; the 37.5 mg

dose does that. I don't find her somnolence during the day particularly

worse on this dose than it was before she was taking Seroquel at all.

> For reducing my mom's meds, we have to go very slowly with all

> changes. Even 5 mg change of Seroquel, Lexapro, etc. disrupted her

> system and routine for several weeks.

I find the same thing with Mom. We did discontinue her

antidepressant/anxiolytic (Effexor) when she went on the Seroquel, as it

seems to provide her the benefit that the Effexor did and the dose she

was getting of Effexor was very low.

I know I wasn't answering your original post/questions specifically, but

I was responding to Donna's post. I'm sorry if I didn't seem responsive

to what you wrote.

jacqui (in Puget Sound)

Welcome to LBDcaregivers.