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 Sleep issues 
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Joined: Sat Feb 27, 2010 10:19 am
Posts: 5
Post Sleep issues
Hello everyone. My dad has Lewy body that seems to be getting worse. He wakes 1-2 times a night yelling at the top of his lungs and is agitated, awake during a nightmare. Doctors are reluctant to give meds other than Trazadone and Xanex. Has anyone had a better experience with other meds?? We are in the New York area and thinking of changing doctors. Any recommendations? Thanks! :?


Wed Mar 03, 2010 10:39 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
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Diane,
Welcome to the LBDA forums, See below the link, its will help manage treatment for your loved loved.
Good Luck!


http://www.lbda.org/feature/2126/lbd-re ... proach.htm

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Irene Selak


Wed Mar 03, 2010 11:27 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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dianemin -

Please consider reading the Boeve "Continuum" paper for suggested treatment of all the various LBD symptoms, written by an LBD expert. You can find it on lbda.org.

Are you looking for a neurologist/psychiatrist in NYC or what part of NY?

Robin

PS. You might post your questions in the Symptoms/Diagnosis area as they'll get more traffic there.


Wed Mar 03, 2010 1:17 pm
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Joined: Sat Feb 27, 2010 10:19 am
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Thank you Irene & Robin for your help...I willl look at the article you mentioned. I would prefer a doctor in Westchester County, NY as my dad is unable to travel far.


Thu Mar 04, 2010 8:09 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
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Diane,
Check your PM box I sent you a listing for that area!
I hope it helps!

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Irene Selak


Thu Mar 04, 2010 8:48 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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dianemin:

Helene (who lives in Westchester County, I believe), on the LBDcaregivers Yahoo!Group, recommends the following:

"I wonder if the Burke Institute in Westchester might have a referral for a neurologist. Here is their website: http://www.burke.org/
I had a friend who was there after he'd had a stroke due to complications during surgery. It is a great place.

I like the geriatric psychiatrist we use for my LBD Mom. He is not in Westchester, but in the Bronx at Montefiore Hospital. His name is Gary Kennedy. He is great about emailing, too, whenever we've had questions.

Another LBD caregiver on Yahoo!Groups recommended a neurologist she loved - at Beth Israel in NYC. His name is Dr. William Severt and his number is 212-844-6926 She said that he is a specialist in movement disorders."


Thu Mar 04, 2010 5:15 pm
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Joined: Thu Jan 14, 2010 2:40 pm
Posts: 95
Location: California
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Hi Diane ~ My husband had those awful nightmares for many years prior to being dx'd with Lewy Body disease. Since he has been on Exelon and Namenda, his sleep is not as disturbed. He has also taken Prozac and Buspar for depression and anxiety for many years. Hope this helps...
Best of wishes to you and your family,
Roxanne


Thu Mar 04, 2010 8:01 pm
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Joined: Sat Feb 27, 2010 10:19 am
Posts: 5
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Thanks Robin, will follow up on Burke should we decide to switch drs., thanks again for doing the research. Roxanne, my dad was on the patch (Exelon) and seemed to get worse, he is very sensitive to medications, so we discontinued that. He slept through the past two nights...the Xanax increase seems finally to be kicking in. We'll see. Ugh...it's like being on a rollercoaster! Thank you for your well wishes and all your help, I so appreciate it. Best to you as well. Diane


Sat Mar 06, 2010 8:52 pm
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Joined: Thu Jan 14, 2010 2:40 pm
Posts: 95
Location: California
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Diane ~ The Exelon patch was recommended for my husband, however, it was too much for him. So he went back to the low dose 1.5mg capsule twice/day. He is also very sensitive to meds. I think the Exelon and Namenda have helped tremendously with his sleep issues. Not too sure about the Prozac & Buspar helping the depression and anxiety but he is afraid to stop them. Sometimes I wonder if the Prozac and/or Buspar have not made him more drowsy during the day or if it is just the LBD. He recently tried Nuvigil to "wake up" during the day, but it seems to be disagreeing with him as well. Yes, at times, life sure can be a roller coaster...from dark valleys to mountain tops!
Blessings,
Roxanne


Sun Mar 07, 2010 1:47 pm
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