Guest guest Posted June 16, 2012 Report Share Posted June 16, 2012 We have added seroquel with great success in small doses; it does NOT stop all hallucinations but it has stopped the vivid, violent ones. Seroquel can be given in 12.5 mg doses (the smallest possible, it is half a tablet); could you consider lowering her dosage a baby step like that if it makes her feel that way? As Dad adjusts to any new additions of seroquel, he definitely does get more sleepy. Luckily, after an adjustment period of about ten days total, he adapts well. He is on two meds that could bring this on, both the Seroquel and the Ativan, but he has never experienced any problems with Namenda. Is your Mom perhaps on a dosage of Seroquel that is too high? Like I say, if the hallucinations are not violent of offensive in nature, we have found that they are something Dad has to live with, but when they become objectionable, it is time for a med adjustment. Lori in Wisconsin Re: Rx for Lewy Body 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 > It came to me that every time I lose a dog they take a piece of my heart with them, and every new dog that comes into my life gifts me with a piece of their heart. If I live long enough all of the components of my heart will be dog, and I will become as generous and loving as they are. ~Anonymous~ www.aldf.org www.ifaw.org www.fundforanimals.org www.oceanconservancy.org www.aspca.org www.ddal.org www.greenpeace.org www.nrdc.org www.pcrm.org www.edf.org www.ncpa.org www.audobon.org www.bestfriends.org www.nwf.org www.wwf.org www.defenders.org www.nature.org www.nhes.org www.wolf.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2012 Report Share Posted June 16, 2012 has anyone started reducing Rx for delusions/hallucianations ? my caregiver says after awhile the patients don't care enough to be delusional anymore. maybe the drugs (anti-pschotics and the like) turn our LO into zombies? Kay is still on 2 anti-depressants and an anti-pschotic as well as 5mg aricept. she seems dumbed-down to me. anyone tried reducing the drugs after say 4 years? i see the treating dr. next month. they seem to have pills for everything/ just look at the tv commercials . gary  (wife Kay,age 60) Subject: Re: Re: Rx for Lewy Body To: LBDcaregivers Date: Saturday, June 16, 2012, 3:21 PM  We have added seroquel with great success in small doses; it does NOT stop all hallucinations but it has stopped the vivid, violent ones. Seroquel can be given in 12.5 mg doses (the smallest possible, it is half a tablet); could you consider lowering her dosage a baby step like that if it makes her feel that way? As Dad adjusts to any new additions of seroquel, he definitely does get more sleepy. Luckily, after an adjustment period of about ten days total, he adapts well. He is on two meds that could bring this on, both the Seroquel and the Ativan, but he has never experienced any problems with Namenda. Is your Mom perhaps on a dosage of Seroquel that is too high? Like I say, if the hallucinations are not violent of offensive in nature, we have found that they are something Dad has to live with, but when they become objectionable, it is time for a med adjustment. Lori in Wisconsin Re: Rx for Lewy Body 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 > It came to me that every time I lose a dog they take a piece of my heart with them, and every new dog that comes into my life gifts me with a piece of their heart. If I live long enough all of the components of my heart will be dog, and I will become as generous and loving as they are. ~Anonymous~ www.aldf.org www.ifaw.org www.fundforanimals.org www.oceanconservancy.org www.aspca.org www.ddal.org www.greenpeace.org www.nrdc.org www.pcrm.org www.edf.org www.ncpa.org www.audobon.org www.bestfriends.org www.nwf.org www.wwf.org www.defenders.org www.nature.org www.nhes.org www.wolf.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2012 Report Share Posted June 18, 2012 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...
Guest guest Posted June 18, 2012 Report Share Posted June 18, 2012 Is her doctor a neurologist? If not, get her to one. Or Google movement disorders in your area and see if there is a clinic that specializes in these kinds of things to take her to for evaluation. Others on the list know of care facilities near to you. We went through several doctors, and although my husband is still involved in his own care (to his determent) you mother sounds like she is not. 57, Husband Len diagnosed PD 12/2010, LBE 1/2012, FTD 4/2012 From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of Sent: Monday, June 18, 2012 4:30 AM To: lbdcaregivers Subject: Re: Re: Rx for Lewy Body 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 From: mary fassbender <outrunranch@... <mailto:outrunranch%40yahoo.com> > To: " LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> " <LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> > 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...
Guest guest Posted June 18, 2012 Report Share Posted June 18, 2012 Hello: Look for a neurologist ASAP! Another doctor asap! We had to go through 2 neurologists to get to the right one on the 3rd try. Although neurologist #2 did treat husband with PD, he did not get better and family doctor referred us to the Cleveland Clinic. Vivian > ** > > > Is her doctor a neurologist? If not, get her to one. Or Google movement > disorders in your area and see if there is a clinic that specializes in > these kinds of things to take her to for evaluation. Others on the list > know of care facilities near to you. We went through several doctors, and > although my husband is still involved in his own care (to his determent) > you mother sounds like she is not. > > 57, Husband Len diagnosed PD 12/2010, LBE 1/2012, FTD 4/2012 > > From: LBDcaregivers [mailto:LBDcaregivers ] > On Behalf Of > Sent: Monday, June 18, 2012 4:30 AM > To: lbdcaregivers > Subject: Re: Re: Rx for Lewy Body > > > 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 > From: mary fassbender <outrunranch@... <mailto: > outrunranch%40yahoo.com> > > To: " LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> > " <LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> > > > 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...
Guest guest Posted June 18, 2012 Report Share Posted June 18, 2012 Hello: Look for a neurologist ASAP! Another doctor asap! We had to go through 2 neurologists to get to the right one on the 3rd try. Although neurologist #2 did treat husband with PD, he did not get better and family doctor referred us to the Cleveland Clinic. Vivian > ** > > > Is her doctor a neurologist? If not, get her to one. Or Google movement > disorders in your area and see if there is a clinic that specializes in > these kinds of things to take her to for evaluation. Others on the list > know of care facilities near to you. We went through several doctors, and > although my husband is still involved in his own care (to his determent) > you mother sounds like she is not. > > 57, Husband Len diagnosed PD 12/2010, LBE 1/2012, FTD 4/2012 > > From: LBDcaregivers [mailto:LBDcaregivers ] > On Behalf Of > Sent: Monday, June 18, 2012 4:30 AM > To: lbdcaregivers > Subject: Re: Re: Rx for Lewy Body > > > 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 > From: mary fassbender <outrunranch@... <mailto: > outrunranch%40yahoo.com> > > To: " LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> > " <LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> > > > 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...
Guest guest Posted June 19, 2012 Report Share Posted June 19, 2012 The anesthesia used in surgery (I'd hate to go without and so would the surgeon) can take awhile to wear down when a patient is older. When Mom broke her shoulders, it took weeks to months for her to recover as much as she could. Of course, by then, the hospital doctor had given Mom Haldol, so a true recovery never happened. But give it some time. You might yet see an improvement. Kate > ** > > > 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...
Guest guest Posted June 19, 2012 Report Share Posted June 19, 2012 The anesthesia used in surgery (I'd hate to go without and so would the surgeon) can take awhile to wear down when a patient is older. When Mom broke her shoulders, it took weeks to months for her to recover as much as she could. Of course, by then, the hospital doctor had given Mom Haldol, so a true recovery never happened. But give it some time. You might yet see an improvement. Kate > ** > > > 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...
Guest guest Posted June 19, 2012 Report Share Posted June 19, 2012 The anesthesia used in surgery (I'd hate to go without and so would the surgeon) can take awhile to wear down when a patient is older. When Mom broke her shoulders, it took weeks to months for her to recover as much as she could. Of course, by then, the hospital doctor had given Mom Haldol, so a true recovery never happened. But give it some time. You might yet see an improvement. Kate > ** > > > 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...
Guest guest Posted June 20, 2012 Report Share Posted June 20, 2012 Is she in pain? All chance of uti etc ruled out? - Dorothy from cell phone > 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...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.