Advice Requested on Excessive Sleepiness/Thirst/Meds From Lin

December 14, 2006

Dear Friends, As always, many thanks for being here. Had a frustrating day with

MDs disagreeing about what to do for mom. The latest: she's become progressively

more tired over last few weeks, although has complained of " fatigue " for at leat

9 months. In last few weeks she can't keep her eyes open for any length of time.

By evening, she is apologizing for being poor company but " must sleep. " She

doesn't sleep when she closes her eyes, just says she can't keep them open. I

have been reading about Sudden Onset Sleepiness and Excessive Daytime Sleeping

as part of PD and LBD, and am trying to research safety of Provigil in LBD. The

PD docs do seem to use it a lot, but I cannot find much re its use in LBD

(except for a brief mention at the LBDAssn site by Dr. Boeve). She does have

another UTI - big time, and we've started antibiotics for that. In the past, the

eye closing was always a symptom of infections, but for several months she

didn't have an infection, yet the closing

kept on. She is just exhausted and very aware of it. And it's getting worse

almost daily. Also in the past few weeks she has become extremely thirsty. This

is a woman we used to have beg to get her to drink. Now she is always thirsty,

especially for cold water.

The MD today shrugged off my concerns about pre-dabetes (she does have

slightly elevated sugar levels), renal trouble (she is pre-renal) and my

questions about medication for the sleepiness. He says I'm just in denial and

that excessive sleepiness and thirst are often symptoms of professing dementia.

Well, I am with her all the time - I know about the dementia. And I do read - I

know these can go along with the disease. But . . . wouldn't a good MD want to

explore a bit and rule out other problems?

Has anyone else had experience with these symptoms in their loved ones? And

what might be the next steps I could take? I realize there's only so much to do

for the dementia, but our LOs deserve the best quality of life possible - and

just ascribing everything to the dementia seems like poor judgement - minimally

- to me.

Thank you for letting me vent and for any suggestions you may have.

Peace, Lin

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