Guest guest Posted June 14, 2012 Report Share Posted June 14, 2012 Seroquel has worked very well for my husband's paranoia and hallucinations. He takes it at bedtime so the he sleeps during the worse of the fuzzy time.   ________________________________ To: LBDcaregivers Sent: Thursday, June 14, 2012 5:53 PM Subject: Rx for Lewy Body  Hi folks-- I come here from time to time with questions re: my mom and lewy body. You all have been a good resource for me. I was wondering if there is anything new I should know about in the world of rx for the disease. Right now she is on Seroquel (Quetiapine Fumarate generic), Aricept(Donepezil generic) and Namenda. She wants to get off the Seroquel since it makes her so sleepy and " loopy " but we are not thinking of doing that since it helps with the hallucinations. Anyway, is anyone out there having good success with anything else? She has had a couple of pretty good years with flare ups when she gets an infection, but other than that, it has been pretty good. Now she is beginning to have hallucinations and delusions again and it doesn't look like there is really anything else out there that might help, that it is just going to be the way it is for her. Thanks for you input! F Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2012 Report Share Posted June 16, 2012 Hi , My Mom has never been on seroquel, but I do remember that when we added Namenda to the Aricept, that she became much sleepier. Is it possible that it is the namenda, and not the seroquel that is affecting her this way? Helene in NY > > Hi folks-- > I come here from time to time with questions re: my mom and lewy body. You all have been a good resource for me. I was wondering if there is anything new I should know about in the world of rx for the disease. Right now she is on Seroquel (Quetiapine Fumarate generic), Aricept(Donepezil generic) and Namenda. She wants to get off the Seroquel since it makes her so sleepy and " loopy " but we are not thinking of doing that since it helps with the hallucinations. Anyway, is anyone out there having good success with anything else? She has had a couple of pretty good years with flare ups when she gets an infection, but other than that, it has been pretty good. Now she is beginning to have hallucinations and delusions again and it doesn't look like there is really anything else out there that might help, that it is just going to be the way it is for her. > Thanks for you input! > F > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2012 Report Share Posted June 17, 2012 Thanks for your input and ideas. We have tried reducing her Seroquel, but that has not been with good results. She does struggle with the violent, unpleasant hallucinations and delusions. If they were just benign, we wouldn't try so hard to find a better solution and just let it be I think. Thanks! F Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2012 Report Share Posted June 19, 2012 The decline in her walking makes me think of another possibility. My mother was diagnosed with Normal Pressure Hydrocephalus (NPH) when she was 75. I'd taken her for a geriatric assessment because of her memory going downhill and repeating herself a lot, but the doctors were more concerned about her gait, which was kind of shuffling. Turns out that this is frequently mistaken for Parkinson's. I didn't even know that seniors got this, it's something associated with newborn babies. It's just extra fluid that builds up around the brain and puts pressure on the brain, affecting cognitive ability and walking. Anyhow, she had a shunt put into her head that drains the extra fluid into her abdomen. The idea was to prevent further damage, not to fix what damage was already done. She was doing fine after this, until a random fall in March resulted in a hip fracture. She was not the same since the surgery, she is very confused now. It may have something to do with her brain being in a more fragile state when the surgery happened (due to her prior surgery on her head). Whatever the reason, she's not the independent lady she was before her hip fracture. > > > Hello !! I am new . I honestly believe my beautiful Mother has this disease. I printed infomation for her neurologist and highlighted every single system that I have witness. Her Doctor said he has never seen anyone who has this and its not as common as I am to believe. He order a pep-test ..Waiting for the results .. I am noticing a decline in her walking and she is hallunating more. > How do I find a Doctor who acknowledges this disease.?..I hope I make sense as the days seem longer . > My husband and I have POA .She lives with us . Been adjustment since we also have guardianship of 2 of our beautiful granddaughters. > Right now we have care givers . Not for sure how long . I am checking into nursing homes . Want to be prepare. > Thanks to all who share and for all the infomation that is posted. > ...Mother has been diagnosed with PA > Gods will be done !! > > T-Mobile, America's First Nationwide 4G Network > > --- Re: Rx for Lewy Body > > To: " LBDcaregivers " <LBDcaregivers > > CC: > > Thanks for your input and ideas.  We have tried reducing her Seroquel, but that has not been with good results.  She does struggle with the violent, unpleasant hallucinations and delusions.  If they were just benign, we wouldn't try so hard to find a better solution and just let it be I think. > Thanks! > F > > Quote Link to comment Share on other sites More sharing options...
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