Guest guest Posted October 6, 2011 Report Share Posted October 6, 2011 Tania,  That might be the Doctor that you email before you see him again. And I would caution him that it affects your Dad like it does and ask him to only give that kind of news to you after your Dad has left. Many of our group use email for just that reason.  Hugs,  Donna R New drug / Dad's mood  Well, we met with Dad's neurologist yesterday for the first time since he diagnosed Dad with LBD early this year and although it was interesting, it was also a pretty awful day. Dad had an MRI yesterday morning and we took the images on disc to the neuro. He said it was worse than would be expected in someone Dad's age (77) but about right for someone with LBD. He also said that the small 'white spots' could indicate a couple of small strokes at some time in the past. Dad watched and listened to everything and seemed to take it all in (he was tired but quite cognisant). The neuro (who is one of Australia's Parkinson's experts but who also has LBD patients) wrote a prescription for my father for his delusions, as well as his mood - which has been very irritable and frustrated but not aggressive physically. The drug is (SEROQUEL or QUETIAPINE). For the first time in a long time, Dad slept the whole night through. He didn't even get up to go to the bathroom as he usually does several times a night. But today, his mood was even worse. He was looking at people in the street and saying negative things about them for seemingly no reason and almost every time my mother spoke, he told her to " Shhh " . Has anyone had experience with Quetiapine? We found while speaking with Dad's neuro that Dad's general practitioner had not followed his (the neuro's) instructions from earlier this year to take Dad off Sinemet (Carbidopa-Levodopa) which he was prescribed last year for Parkinson's so we have to keep him on that for the time being. In the process of asking the neuro some questions, including how we could improve Dad's heart fitness without putting him at risk due to the LBD (very poor balance, frequent falls, etc), he said that we shouldn't expect Dad to get better. This was said in front of Dad and from the moment we left the clinic, Dad was noticeably down mood-wise and has been since. I felt quite bad that this was said in front of Dad and wish I could go back in time. He struggles so much with staying positive so this was a real sledgehammer blow kind of thing to hear. Even if it's true, we didn't want him to hear that. The good/better news is that we saw Dad's cardiologist today as well and asked him about exercise and he has suggested hydrotherapy so we are currently looking into that. Has anyone had experience with a LO with LBD having done hydrotherapy? He has also reduced and eliminated some of Dad's blood pressure drugs as Dad has had terrible dizziness and it was the Professor's opinion that these drugs were making Dad's BP way too low, so we're hoping that will help with Dad's movement. He also said he will write to Dad's neuro to let him know more about Dad's heart condition and treatment which I think is great. So, some good news, some not so good but the thing I'm concerned about the most is Dad's depression. He was hoping that the neuro was going to have good news for him and help him feel better so it was so sad to see his face from that appointment onwards. I had terrible nightmares about it all last night. Thanks so much for your posts. The ones I read this morning (Australian time) were so helpful. We had Dad in a wheelchair yesterday for the first time to get him around the hospital and it made life so much easier but it's good to know that using it too much is not good for keeping Dad mobile. Also, knowing about providing 'cues' is priceless and something I won't be forgetting any time soon. Peace to all. Tania. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2011 Report Share Posted October 6, 2011 Seroquel caused my husband Bob to have horrible paranoid delusions that increased and got worse the more he took of it. He thought I was poisoning him and started refusing to eat or drink. He had to be hospitalized for weeks to get him off it and back to his baseline. Watch out for Seroquel as it is not well tolerated by some people with Lewy Body Dementia. Pat 58, wife caregiver of Bob, 75 DX PD 2003, LBD 2009 > > > > > Well, we met with Dad's neurologist yesterday for the first time since > he diagnosed Dad with LBD early this year and although it was > interesting, it was also a pretty awful day. > > Dad had an MRI yesterday morning and we took the images on disc to the > neuro. He said it was worse than would be expected in someone Dad's age > (77) but about right for someone with LBD. He also said that the small > 'white spots' could indicate a couple of small strokes at some time in > the past. Dad watched and listened to everything and seemed to take it > all in (he was tired but quite cognisant). > > The neuro (who is one of Australia's Parkinson's experts but who also > has LBD patients) wrote a prescription for my father for his delusions, > as well as his mood - which has been very irritable and frustrated but > not aggressive physically. The drug is (SEROQUEL or QUETIAPINE). For the > first time in a long time, Dad slept the whole night through. He didn't > even get up to go to the bathroom as he usually does several times a > night. But today, his mood was even worse. He was looking at people in > the street and saying negative things about them for seemingly no reason > and almost every time my mother spoke, he told her to " Shhh " . Has anyone > had experience with Quetiapine? > > We found while speaking with Dad's neuro that Dad's general practitioner > had not followed his (the neuro's) instructions from earlier this year > to take Dad off Sinemet (Carbidopa-Levodopa) which he was prescribed > last year for Parkinson's so we have to keep him on that for the time > being. > > In the process of asking the neuro some questions, including how we > could improve Dad's heart fitness without putting him at risk due to the > LBD (very poor balance, frequent falls, etc), he said that we shouldn't > expect Dad to get better. This was said in front of Dad and from the > moment we left the clinic, Dad was noticeably down mood-wise and has > been since. I felt quite bad that this was said in front of Dad and wish > I could go back in time. He struggles so much with staying positive so > this was a real sledgehammer blow kind of thing to hear. Even if it's > true, we didn't want him to hear that. > > The good/better news is that we saw Dad's cardiologist today as well and > asked him about exercise and he has suggested hydrotherapy so we are > currently looking into that. Has anyone had experience with a LO with > LBD having done hydrotherapy? He has also reduced and eliminated some > of Dad's blood pressure drugs as Dad has had terrible dizziness and it > was the Professor's opinion that these drugs were making Dad's BP way > too low, so we're hoping that will help with Dad's movement. He also > said he will write to Dad's neuro to let him know more about Dad's heart > condition and treatment which I think is great. > > So, some good news, some not so good but the thing I'm concerned about > the most is Dad's depression. He was hoping that the neuro was going to > have good news for him and help him feel better so it was so sad to see > his face from that appointment onwards. I had terrible nightmares about > it all last night. > > Thanks so much for your posts. The ones I read this morning (Australian > time) were so helpful. We had Dad in a wheelchair yesterday for the > first time to get him around the hospital and it made life so much > easier but it's good to know that using it too much is not good for > keeping Dad mobile. Also, knowing about providing 'cues' is priceless > and something I won't be forgetting any time soon. > > Peace to all. > > Tania. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2011 Report Share Posted October 6, 2011 Thanks Pat. Turns out Dad's been up most of the night with chest pain but refused to let Mum (I live a couple of mins away) call an ambulance. He had stents put in recently and only told the cardiologist yesterday that he hasn't had chest pain since. I'm worried now. Not sure whether to take him off Seroquel (he's only had it for two days and they've been two bad days) or concentrate on the chest pain. Tania... > > > > > > > > > > > Well, we met with Dad's neurologist yesterday for the first time since > > he diagnosed Dad with LBD early this year and although it was > > interesting, it was also a pretty awful day. > > > > Dad had an MRI yesterday morning and we took the images on disc to the > > neuro. He said it was worse than would be expected in someone Dad's age > > (77) but about right for someone with LBD. He also said that the small > > 'white spots' could indicate a couple of small strokes at some time in > > the past. Dad watched and listened to everything and seemed to take it > > all in (he was tired but quite cognisant). > > > > The neuro (who is one of Australia's Parkinson's experts but who also > > has LBD patients) wrote a prescription for my father for his delusions, > > as well as his mood - which has been very irritable and frustrated but > > not aggressive physically. The drug is (SEROQUEL or QUETIAPINE). For the > > first time in a long time, Dad slept the whole night through. He didn't > > even get up to go to the bathroom as he usually does several times a > > night. But today, his mood was even worse. He was looking at people in > > the street and saying negative things about them for seemingly no reason > > and almost every time my mother spoke, he told her to " Shhh " . Has anyone > > had experience with Quetiapine? > > > > We found while speaking with Dad's neuro that Dad's general practitioner > > had not followed his (the neuro's) instructions from earlier this year > > to take Dad off Sinemet (Carbidopa-Levodopa) which he was prescribed > > last year for Parkinson's so we have to keep him on that for the time > > being. > > > > In the process of asking the neuro some questions, including how we > > could improve Dad's heart fitness without putting him at risk due to the > > LBD (very poor balance, frequent falls, etc), he said that we shouldn't > > expect Dad to get better. This was said in front of Dad and from the > > moment we left the clinic, Dad was noticeably down mood-wise and has > > been since. I felt quite bad that this was said in front of Dad and wish > > I could go back in time. He struggles so much with staying positive so > > this was a real sledgehammer blow kind of thing to hear. Even if it's > > true, we didn't want him to hear that. > > > > The good/better news is that we saw Dad's cardiologist today as well and > > asked him about exercise and he has suggested hydrotherapy so we are > > currently looking into that. Has anyone had experience with a LO with > > LBD having done hydrotherapy? He has also reduced and eliminated some > > of Dad's blood pressure drugs as Dad has had terrible dizziness and it > > was the Professor's opinion that these drugs were making Dad's BP way > > too low, so we're hoping that will help with Dad's movement. He also > > said he will write to Dad's neuro to let him know more about Dad's heart > > condition and treatment which I think is great. > > > > So, some good news, some not so good but the thing I'm concerned about > > the most is Dad's depression. He was hoping that the neuro was going to > > have good news for him and help him feel better so it was so sad to see > > his face from that appointment onwards. I had terrible nightmares about > > it all last night. > > > > Thanks so much for your posts. The ones I read this morning (Australian > > time) were so helpful. We had Dad in a wheelchair yesterday for the > > first time to get him around the hospital and it made life so much > > easier but it's good to know that using it too much is not good for > > keeping Dad mobile. Also, knowing about providing 'cues' is priceless > > and something I won't be forgetting any time soon. > > > > Peace to all. > > > > Tania. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2011 Report Share Posted October 6, 2011 I just read on another sight that that drug can affect some people with lbd badly. They become angry and attack people. This was some one who was on that drug before and had no problems but suddenly reacted to it. I would tell your neurologist what is going on and maybe they will give him a lower dose. That seemed to help this guy. My dad got depressed when he was diagnosed too but then he forgot about it within a few days anyway. To me doing something as long as it doesn't hurt is a good idea. Just the act of doing something can bring up your mood even if what you do does not help much. I don't think I would like being told that nothing will help either. Someone I know has picks and Medicare questioned some treatment she got because she was going to die anyway. That seems pretty stupid to me. Sharon Dowling punkersad@.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2011 Report Share Posted October 6, 2011 Tania, I want to say I'm sorry about your father's neuro visit. I felt quite defeated reading what happened. There are some things that can help with quality of life but it doesn't always come in the form of a pill. I'm not sure what kind of physical condition your father is in but for many people with lbd, even advanced, movement of some kind is very helpful for many reasons. Seroquel is a very risky drug with LBD and should be started out on an extremely low dose - I'm talking about getting the smallest size tablet and breaking it in quarters and trying one quarter at a time - this is what was recommended by the clinical pharmacist at University California San Francisco Medical Center Memory and Aging Clinic. I am so glad we followed this advice too because as the dose was slowly increased we began to see the agitation, stress, angry outbursts and panic attacks and know without a doubt what was causing it. The panic attacks were quite extreme and she became out of breath, hyperventilating, afraid she couldn't breath with chest pain because she was having such anxiety. I hope your Mum will just all the ambulance and then they can see what's going on. I wanted to share this with you because with my mother in law at least, Seroquel caused more problems including such anxiety that she was experiencing chest pain. Hang in there Dorothy From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of aussiebin Sent: Thursday, October 06, 2011 4:06 PM To: LBDcaregivers Subject: Re: New drug / Dad's mood Thanks Pat. Turns out Dad's been up most of the night with chest pain but refused to let Mum (I live a couple of mins away) call an ambulance. He had stents put in recently and only told the cardiologist yesterday that he hasn't had chest pain since. I'm worried now. Not sure whether to take him off Seroquel (he's only had it for two days and they've been two bad days) or concentrate on the chest pain. Tania... > > > > > > > > > > > Well, we met with Dad's neurologist yesterday for the first time since > > he diagnosed Dad with LBD early this year and although it was > > interesting, it was also a pretty awful day. > > > > Dad had an MRI yesterday morning and we took the images on disc to the > > neuro. He said it was worse than would be expected in someone Dad's age > > (77) but about right for someone with LBD. He also said that the small > > 'white spots' could indicate a couple of small strokes at some time in > > the past. Dad watched and listened to everything and seemed to take it > > all in (he was tired but quite cognisant). > > > > The neuro (who is one of Australia's Parkinson's experts but who also > > has LBD patients) wrote a prescription for my father for his delusions, > > as well as his mood - which has been very irritable and frustrated but > > not aggressive physically. The drug is (SEROQUEL or QUETIAPINE). For the > > first time in a long time, Dad slept the whole night through. He didn't > > even get up to go to the bathroom as he usually does several times a > > night. But today, his mood was even worse. He was looking at people in > > the street and saying negative things about them for seemingly no reason > > and almost every time my mother spoke, he told her to " Shhh " . Has anyone > > had experience with Quetiapine? > > > > We found while speaking with Dad's neuro that Dad's general practitioner > > had not followed his (the neuro's) instructions from earlier this year > > to take Dad off Sinemet (Carbidopa-Levodopa) which he was prescribed > > last year for Parkinson's so we have to keep him on that for the time > > being. > > > > In the process of asking the neuro some questions, including how we > > could improve Dad's heart fitness without putting him at risk due to the > > LBD (very poor balance, frequent falls, etc), he said that we shouldn't > > expect Dad to get better. This was said in front of Dad and from the > > moment we left the clinic, Dad was noticeably down mood-wise and has > > been since. I felt quite bad that this was said in front of Dad and wish > > I could go back in time. He struggles so much with staying positive so > > this was a real sledgehammer blow kind of thing to hear. Even if it's > > true, we didn't want him to hear that. > > > > The good/better news is that we saw Dad's cardiologist today as well and > > asked him about exercise and he has suggested hydrotherapy so we are > > currently looking into that. Has anyone had experience with a LO with > > LBD having done hydrotherapy? He has also reduced and eliminated some > > of Dad's blood pressure drugs as Dad has had terrible dizziness and it > > was the Professor's opinion that these drugs were making Dad's BP way > > too low, so we're hoping that will help with Dad's movement. He also > > said he will write to Dad's neuro to let him know more about Dad's heart > > condition and treatment which I think is great. > > > > So, some good news, some not so good but the thing I'm concerned about > > the most is Dad's depression. He was hoping that the neuro was going to > > have good news for him and help him feel better so it was so sad to see > > his face from that appointment onwards. I had terrible nightmares about > > it all last night. > > > > Thanks so much for your posts. The ones I read this morning (Australian > > time) were so helpful. We had Dad in a wheelchair yesterday for the > > first time to get him around the hospital and it made life so much > > easier but it's good to know that using it too much is not good for > > keeping Dad mobile. Also, knowing about providing 'cues' is priceless > > and something I won't be forgetting any time soon. > > > > Peace to all. > > > > Tania. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2011 Report Share Posted October 6, 2011 Thanks so much Dorothy. At the moment, I'm listening more to people on here than the doctors. I spoke to Dad's neuro just a short while ago and he believes that the reaction Dad is having is psychological because the news that day wasn't what Dad had hoped for. He's suggested taking Dad off the Seroquel over the weekend to see if it makes a difference and then said it may be that we need to INCREASE the dosage! He's currently on the lowest dosage (a full pill of 25mg). At this moment in time, I'm thinking noooooo, we won't be increasing the dosage. Hearing that your MIL had chest pain after taking this med is really helpful. Dad has sworn that he's had no chest pain since having his stents put in so to hear him suddenly having them now was such a worry. I too think it may be severe anxiety but because both his heart and LBD meds both changed in a 48 hour period, we're not 100% sure what's causing what. I told Mum that next time we'll see the specialists well apart so there's no confusion with meds. Dad wouldn't let Mum call an ambulance last night. He said he would refuse to see them. I told Mum to call me next time and I will handle it. I'm the youngest of four kids and the only girl (Daddy's girl) so he tends to listen to me more than anyone. I'm so glad to have you all! Hugs, Tania. > > > > > > > > > > > > > > > > > Well, we met with Dad's neurologist yesterday for the first time since > > > he diagnosed Dad with LBD early this year and although it was > > > interesting, it was also a pretty awful day. > > > > > > Dad had an MRI yesterday morning and we took the images on disc to the > > > neuro. He said it was worse than would be expected in someone Dad's age > > > (77) but about right for someone with LBD. He also said that the small > > > 'white spots' could indicate a couple of small strokes at some time in > > > the past. Dad watched and listened to everything and seemed to take it > > > all in (he was tired but quite cognisant). > > > > > > The neuro (who is one of Australia's Parkinson's experts but who also > > > has LBD patients) wrote a prescription for my father for his delusions, > > > as well as his mood - which has been very irritable and frustrated but > > > not aggressive physically. The drug is (SEROQUEL or QUETIAPINE). For the > > > first time in a long time, Dad slept the whole night through. He didn't > > > even get up to go to the bathroom as he usually does several times a > > > night. But today, his mood was even worse. He was looking at people in > > > the street and saying negative things about them for seemingly no reason > > > and almost every time my mother spoke, he told her to " Shhh " . Has anyone > > > had experience with Quetiapine? > > > > > > We found while speaking with Dad's neuro that Dad's general practitioner > > > had not followed his (the neuro's) instructions from earlier this year > > > to take Dad off Sinemet (Carbidopa-Levodopa) which he was prescribed > > > last year for Parkinson's so we have to keep him on that for the time > > > being. > > > > > > In the process of asking the neuro some questions, including how we > > > could improve Dad's heart fitness without putting him at risk due to the > > > LBD (very poor balance, frequent falls, etc), he said that we shouldn't > > > expect Dad to get better. This was said in front of Dad and from the > > > moment we left the clinic, Dad was noticeably down mood-wise and has > > > been since. I felt quite bad that this was said in front of Dad and wish > > > I could go back in time. He struggles so much with staying positive so > > > this was a real sledgehammer blow kind of thing to hear. Even if it's > > > true, we didn't want him to hear that. > > > > > > The good/better news is that we saw Dad's cardiologist today as well and > > > asked him about exercise and he has suggested hydrotherapy so we are > > > currently looking into that. Has anyone had experience with a LO with > > > LBD having done hydrotherapy? He has also reduced and eliminated some > > > of Dad's blood pressure drugs as Dad has had terrible dizziness and it > > > was the Professor's opinion that these drugs were making Dad's BP way > > > too low, so we're hoping that will help with Dad's movement. He also > > > said he will write to Dad's neuro to let him know more about Dad's heart > > > condition and treatment which I think is great. > > > > > > So, some good news, some not so good but the thing I'm concerned about > > > the most is Dad's depression. He was hoping that the neuro was going to > > > have good news for him and help him feel better so it was so sad to see > > > his face from that appointment onwards. I had terrible nightmares about > > > it all last night. > > > > > > Thanks so much for your posts. The ones I read this morning (Australian > > > time) were so helpful. We had Dad in a wheelchair yesterday for the > > > first time to get him around the hospital and it made life so much > > > easier but it's good to know that using it too much is not good for > > > keeping Dad mobile. Also, knowing about providing 'cues' is priceless > > > and something I won't be forgetting any time soon. > > > > > > Peace to all. > > > > > > Tania. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2011 Report Share Posted October 7, 2011 Thanks Sharon. We're going to cut the drug over the weekend and if Dad improves, we'll either keep him off it or signifcantly reduce the dose. Here's hoping it helps. Tania > > I just read on another sight that that drug can affect some people with lbd > badly. They become angry and attack people. This was some one who was on > that drug before and had no problems but suddenly reacted to it. I would > tell your neurologist what is going on and maybe they will give him a lower > dose. That seemed to help this guy. My dad got depressed when he was > diagnosed too but then he forgot about it within a few days anyway. To me > doing something as long as it doesn't hurt is a good idea. Just the act of > doing something can bring up your mood even if what you do does not help > much. I don't think I would like being told that nothing will help either. > Someone I know has picks and Medicare questioned some treatment she got > because she was going to die anyway. That seems pretty stupid to me. > > > > Sharon Dowling > > punkersad@... > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2011 Report Share Posted October 7, 2011 While I am hearing negative posts about Seroquel, I have to speak up and say that it has been wonderful for my father. He takes it only at nigh and it allows him to sleep without acting out and having the horrible dreams that were bothering him before. He is on 50mg a night. > > > > Well, we met with Dad's neurologist yesterday for the first time since > he diagnosed Dad with LBD early this year and although it was > interesting, it was also a pretty awful day. > > Dad had an MRI yesterday morning and we took the images on disc to the > neuro. He said it was worse than would be expected in someone Dad's age > (77) but about right for someone with LBD. He also said that the small > 'white spots' could indicate a couple of small strokes at some time in > the past. Dad watched and listened to everything and seemed to take it > all in (he was tired but quite cognisant). > > The neuro (who is one of Australia's Parkinson's experts but who also > has LBD patients) wrote a prescription for my father for his delusions, > as well as his mood - which has been very irritable and frustrated but > not aggressive physically. The drug is (SEROQUEL or QUETIAPINE). For the > first time in a long time, Dad slept the whole night through. He didn't > even get up to go to the bathroom as he usually does several times a > night. But today, his mood was even worse. He was looking at people in > the street and saying negative things about them for seemingly no reason > and almost every time my mother spoke, he told her to " Shhh " . Has anyone > had experience with Quetiapine? > > We found while speaking with Dad's neuro that Dad's general practitioner > had not followed his (the neuro's) instructions from earlier this year > to take Dad off Sinemet (Carbidopa-Levodopa) which he was prescribed > last year for Parkinson's so we have to keep him on that for the time > being. > > In the process of asking the neuro some questions, including how we > could improve Dad's heart fitness without putting him at risk due to the > LBD (very poor balance, frequent falls, etc), he said that we shouldn't > expect Dad to get better. This was said in front of Dad and from the > moment we left the clinic, Dad was noticeably down mood-wise and has > been since. I felt quite bad that this was said in front of Dad and wish > I could go back in time. He struggles so much with staying positive so > this was a real sledgehammer blow kind of thing to hear. Even if it's > true, we didn't want him to hear that. > > The good/better news is that we saw Dad's cardiologist today as well and > asked him about exercise and he has suggested hydrotherapy so we are > currently looking into that. Has anyone had experience with a LO with > LBD having done hydrotherapy? He has also reduced and eliminated some > of Dad's blood pressure drugs as Dad has had terrible dizziness and it > was the Professor's opinion that these drugs were making Dad's BP way > too low, so we're hoping that will help with Dad's movement. He also > said he will write to Dad's neuro to let him know more about Dad's heart > condition and treatment which I think is great. > > So, some good news, some not so good but the thing I'm concerned about > the most is Dad's depression. He was hoping that the neuro was going to > have good news for him and help him feel better so it was so sad to see > his face from that appointment onwards. I had terrible nightmares about > it all last night. > > Thanks so much for your posts. The ones I read this morning (Australian > time) were so helpful. We had Dad in a wheelchair yesterday for the > first time to get him around the hospital and it made life so much > easier but it's good to know that using it too much is not good for > keeping Dad mobile. Also, knowing about providing 'cues' is priceless > and something I won't be forgetting any time soon. > > Peace to all. > > Tania. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2011 Report Share Posted October 7, 2011 Seroquel made my mother's life not only bearable, but enjoyable again. Before that she only wanted to kill herself because of her hallucinations and paranoid delusions, inability to sleep, etc. Seroquel gave her her life back, and gave me my mom back. > While I am hearing negative posts about Seroquel, I have to speak up and say that it has been wonderful for my father. He takes it only at nigh and it allows him to sleep without acting out and having the horrible dreams that were bothering him before. He is on 50mg a night. -- His, Sherry daughter/guardian of , dx 4/09 with LBD, living in a nearby NH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2011 Report Share Posted October 7, 2011 I have to chime in that we will likely be starting my mom on seroquel for sleep and anti depressant effects and after doing out research and consulting with our NYC docs have been told that when used at night and in small and gradually increasing has been very successful with LBD ! Judy R. Strauss LMSW PhD Lead Faculty University of Phoenix Jersey City Campus 100 Town Square Place |Jersey City, NJ 07310 Cell- Email- Jrstr@... > Seroquel made my mother's life not only bearable, but enjoyable again. > Before that she only wanted to kill herself because of her > hallucinations and paranoid delusions, inability to sleep, etc. Seroquel > gave her her life back, and gave me my mom back. > > > > While I am hearing negative posts about Seroquel, I have to speak up and say that it has been wonderful for my father. He takes it only at nigh and it allows him to sleep without acting out and having the horrible dreams that were bothering him before. He is on 50mg a night. > > -- > His, > Sherry > daughter/guardian of , dx 4/09 with LBD, living in a nearby NH > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2011 Report Share Posted October 7, 2011 Tania, I hope your father is feeling better. Sometimes drugs can CAUSE anxiety, especially with LBD patients, so it's something to watch for even with antibiotics. There was a time that Seroquel seemed like a miracle for my mil - a different stage in her disease. She took half a 25 mg tablet for a few weeks and was sleeping. It just didn't last long. Panic/Anxiety attacks are pretty common with this illness. It could come on from delusions or hallucinations - or from realizing it's a terminal illness - whole other issue. For my mil, as her disease progresses and she wonders what's wrong with her I am pretty straight with her to a point. I'll tell her it's " parkinson's " but I don't say " dementia " . I explain that the illness is very hard and that it takes a little each day, each week. I tell her how strong she is and how well she's doing. Occasionally she asks if she's dying and that's a tough one because when she gets it in her head, again, that she has a terminal disease she goes through the shock and grief and fear etc. all over again. That's something that also brings on the panic attacks and chest pain. She hates to be left alone even for a moment and will start yelling for help - or if she sees her son walking through the house and he doesn't stop to see her or come and stay in her room she will get agitated and that will lead to a lot of anxiety as well, and the chest pain. It's psychological but it's due to the damage that LBD is doing on the brain. The anxiety/panic was happening with my mil enough that we have an Rx for liquid form Ativan (which is VERY RISKY with LBD!) and if she has a bad attack - feels she can't breath, chest pain,etc. we give her a very tiny amount and it helps. If she has a regular dose of this stuff it's not terrible - she has terrible hallucinations and screams etc. It was really against my feeling to even try minute doses but the anxiety/panic got so bad we had to try something. So we go very low with it - really like a few drops of it and it actually is enough to help calm her - along with a lot of talking with her. The one thing she can tolerate fairly well is Trazadone and it helps her sleep at night. But everyone is different so there's no telling what will work in another person until it's tried, carefully. It could be Seroquel will help and god knows it does help some. Just take it low to start with and slow and watch carefully. It's a real good idea to space starting/stopping drugs a couple weeks apart if possible so you can be on top of that - as you are thinking. I'd say that's a very good strategy! J It's a very good thing you're there for your mom and dad both and that he'll listen to you. I am the only one my mil will listen to at this point. She listens to her son (my husband) sometimes but she will definitely listen to me. I am the one that decides to go to the hospital and overcomes the protests and such. or take the medicine etc. I just hope I can keep that slight edge! Hope your father is feeling better, Dorothy From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of aussiebin Sent: Thursday, October 06, 2011 7:52 PM To: LBDcaregivers Subject: Re: New drug / Dad's mood Thanks so much Dorothy. At the moment, I'm listening more to people on here than the doctors. I spoke to Dad's neuro just a short while ago and he believes that the reaction Dad is having is psychological because the news that day wasn't what Dad had hoped for. He's suggested taking Dad off the Seroquel over the weekend to see if it makes a difference and then said it may be that we need to INCREASE the dosage! He's currently on the lowest dosage (a full pill of 25mg). At this moment in time, I'm thinking noooooo, we won't be increasing the dosage. Hearing that your MIL had chest pain after taking this med is really helpful. Dad has sworn that he's had no chest pain since having his stents put in so to hear him suddenly having them now was such a worry. I too think it may be severe anxiety but because both his heart and LBD meds both changed in a 48 hour period, we're not 100% sure what's causing what. I told Mum that next time we'll see the specialists well apart so there's no confusion with meds. Dad wouldn't let Mum call an ambulance last night. He said he would refuse to see them. I told Mum to call me next time and I will handle it. I'm the youngest of four kids and the only girl (Daddy's girl) so he tends to listen to me more than anyone. I'm so glad to have you all! Hugs, Tania. > > > > > > > > > > > > > > > > > Well, we met with Dad's neurologist yesterday for the first time since > > > he diagnosed Dad with LBD early this year and although it was > > > interesting, it was also a pretty awful day. > > > > > > Dad had an MRI yesterday morning and we took the images on disc to the > > > neuro. He said it was worse than would be expected in someone Dad's age > > > (77) but about right for someone with LBD. He also said that the small > > > 'white spots' could indicate a couple of small strokes at some time in > > > the past. Dad watched and listened to everything and seemed to take it > > > all in (he was tired but quite cognisant). > > > > > > The neuro (who is one of Australia's Parkinson's experts but who also > > > has LBD patients) wrote a prescription for my father for his delusions, > > > as well as his mood - which has been very irritable and frustrated but > > > not aggressive physically. The drug is (SEROQUEL or QUETIAPINE). For the > > > first time in a long time, Dad slept the whole night through. He didn't > > > even get up to go to the bathroom as he usually does several times a > > > night. But today, his mood was even worse. He was looking at people in > > > the street and saying negative things about them for seemingly no reason > > > and almost every time my mother spoke, he told her to " Shhh " . Has anyone > > > had experience with Quetiapine? > > > > > > We found while speaking with Dad's neuro that Dad's general practitioner > > > had not followed his (the neuro's) instructions from earlier this year > > > to take Dad off Sinemet (Carbidopa-Levodopa) which he was prescribed > > > last year for Parkinson's so we have to keep him on that for the time > > > being. > > > > > > In the process of asking the neuro some questions, including how we > > > could improve Dad's heart fitness without putting him at risk due to the > > > LBD (very poor balance, frequent falls, etc), he said that we shouldn't > > > expect Dad to get better. This was said in front of Dad and from the > > > moment we left the clinic, Dad was noticeably down mood-wise and has > > > been since. I felt quite bad that this was said in front of Dad and wish > > > I could go back in time. He struggles so much with staying positive so > > > this was a real sledgehammer blow kind of thing to hear. Even if it's > > > true, we didn't want him to hear that. > > > > > > The good/better news is that we saw Dad's cardiologist today as well and > > > asked him about exercise and he has suggested hydrotherapy so we are > > > currently looking into that. Has anyone had experience with a LO with > > > LBD having done hydrotherapy? He has also reduced and eliminated some > > > of Dad's blood pressure drugs as Dad has had terrible dizziness and it > > > was the Professor's opinion that these drugs were making Dad's BP way > > > too low, so we're hoping that will help with Dad's movement. He also > > > said he will write to Dad's neuro to let him know more about Dad's heart > > > condition and treatment which I think is great. > > > > > > So, some good news, some not so good but the thing I'm concerned about > > > the most is Dad's depression. He was hoping that the neuro was going to > > > have good news for him and help him feel better so it was so sad to see > > > his face from that appointment onwards. I had terrible nightmares about > > > it all last night. > > > > > > Thanks so much for your posts. The ones I read this morning (Australian > > > time) were so helpful. We had Dad in a wheelchair yesterday for the > > > first time to get him around the hospital and it made life so much > > > easier but it's good to know that using it too much is not good for > > > keeping Dad mobile. Also, knowing about providing 'cues' is priceless > > > and something I won't be forgetting any time soon. > > > > > > Peace to all. > > > > > > Tania. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2011 Report Share Posted October 7, 2011 It's good to hear that this drug does work for some people with LBD. But I'm pleased to say, after not taking Seroquel last night, Dad slept well and woke up so much better today. He looks and seems so much better. The reaction he had was so awful and scary I doubt we'll try it again but if we ever do, it will be as was suggested (taken in quarters instead of whole). I was talking to Mum this morning and we realised that Dad has only ever had one hallucination (he thought the roses on a greeting card on the mantel were real) and one delusion (he recently thought Mum had been out of bed all night watching TV but she was next to him the whole time) so I'm wondering why he was put on Seroquel to begin with. I think he needs help to stop the tremors overnight and get more restful sleep, without the nasty side-effects he had with Seroquel. Tania.... > > > While I am hearing negative posts about Seroquel, I have to speak up and say that it has been wonderful for my father. He takes it only at nigh and it allows him to sleep without acting out and having the horrible dreams that were bothering him before. He is on 50mg a night. > > > > -- > > His, > > Sherry > > daughter/guardian of , dx 4/09 with LBD, living in a nearby NH > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2011 Report Share Posted October 8, 2011 Hi Judy, I tried to call and email you without actually reaching you! Cheers, anyway... That's the derndest thing about LEWY!! One medication may do wonders for some, and horrors for others. was one of the ones who had very negative effects with seroquel: he became even more agitated than he had been, and went without sleep for the short time I kept him on it. One good thing, if there IS good thing: there certainly are many medications to try, and, if we are lucky, will hit the jackpot! Marcia C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2011 Report Share Posted October 8, 2011 Marcia I was wondering what happened to u?? Call me at if u have time !! Would love to talk !! Judy Judy R. Strauss LMSW PhD Lead Faculty University of Phoenix Jersey City Campus 100 Town Square Place |Jersey City, NJ 07310 Cell- Email- Jrstr@... > Hi Judy, > > I tried to call and email you without actually reaching you! Cheers, > anyway... > > That's the derndest thing about LEWY!! One medication may do wonders for > some, and horrors for others. was one of the ones who had very > negative effects with seroquel: he became even more agitated than he had been, > and went without sleep for the short time I kept him on it. One good > thing, if there IS good thing: there certainly are many medications to try, > and, if we are lucky, will hit the jackpot! > Marcia C. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2011 Report Share Posted October 8, 2011 Marcia, you may want to ask your dr. about Clozapine (clozaril). my wife (age 59 w/ possible LBD) presented her 1st noticeable symptom with delusion and some acting out. we tried seroquel with some success. she sleeps all thru the night now and has very little delusion. Any she has, she kind of laughs about them now and i work hard to keep her laughing. arguing with LBD with just tire out the caregiver. Her dr. told me Clozapine ( an a-typical anti-psychotic) is the gold standard for delusion/hallucination. It is on the ok list of this website. But , you need to consider this: it requires a blood test every week for 6 months, then every 2 weeks. it can destroy the white blood cells leaving you open to less infection protection. you only get the pills week by week after the pharmicist gets that blood lab result and it reads ok on the white blood cell count. and not every pharmacy will monitor that blood test. i found a small pharmacy ( independent ) that does, and takes my insurance. you have to have your lab send the blood result to the pharmacy. we are finally on every 2 weeks. Yes, it is a pain in the butt for a while, but the drug is still working. My wife Kay still hates going. she can't walk well or get out of the car without my help- so i can't blame her. these are all things you need to consider.  You should follow your doctor " s advise and then decide. Good Luck....... (husband to Kay) Subject: Re: New drug / Dad's mood To: LBDcaregivers Date: Saturday, October 8, 2011, 11:03 AM  Hi Judy, I tried to call and email you without actually reaching you! Cheers, anyway... That's the derndest thing about LEWY!! One medication may do wonders for some, and horrors for others. was one of the ones who had very negative effects with seroquel: he became even more agitated than he had been, and went without sleep for the short time I kept him on it. One good thing, if there IS good thing: there certainly are many medications to try, and, if we are lucky, will hit the jackpot! Marcia C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2011 Report Share Posted October 9, 2011 It's been great for my father-in-law, who is mid-stage Alzheimers. He gets 50 mg in the morning, and 50 at night. It helps with the aggression. Regards, Helene in NY > > > > > > > > Well, we met with Dad's neurologist yesterday for the first time since > > he diagnosed Dad with LBD early this year and although it was > > interesting, it was also a pretty awful day. > > > > Dad had an MRI yesterday morning and we took the images on disc to the > > neuro. He said it was worse than would be expected in someone Dad's age > > (77) but about right for someone with LBD. He also said that the small > > 'white spots' could indicate a couple of small strokes at some time in > > the past. Dad watched and listened to everything and seemed to take it > > all in (he was tired but quite cognisant). > > > > The neuro (who is one of Australia's Parkinson's experts but who also > > has LBD patients) wrote a prescription for my father for his delusions, > > as well as his mood - which has been very irritable and frustrated but > > not aggressive physically. The drug is (SEROQUEL or QUETIAPINE). For the > > first time in a long time, Dad slept the whole night through. He didn't > > even get up to go to the bathroom as he usually does several times a > > night. But today, his mood was even worse. He was looking at people in > > the street and saying negative things about them for seemingly no reason > > and almost every time my mother spoke, he told her to " Shhh " . Has anyone > > had experience with Quetiapine? > > > > We found while speaking with Dad's neuro that Dad's general practitioner > > had not followed his (the neuro's) instructions from earlier this year > > to take Dad off Sinemet (Carbidopa-Levodopa) which he was prescribed > > last year for Parkinson's so we have to keep him on that for the time > > being. > > > > In the process of asking the neuro some questions, including how we > > could improve Dad's heart fitness without putting him at risk due to the > > LBD (very poor balance, frequent falls, etc), he said that we shouldn't > > expect Dad to get better. This was said in front of Dad and from the > > moment we left the clinic, Dad was noticeably down mood-wise and has > > been since. I felt quite bad that this was said in front of Dad and wish > > I could go back in time. He struggles so much with staying positive so > > this was a real sledgehammer blow kind of thing to hear. Even if it's > > true, we didn't want him to hear that. > > > > The good/better news is that we saw Dad's cardiologist today as well and > > asked him about exercise and he has suggested hydrotherapy so we are > > currently looking into that. Has anyone had experience with a LO with > > LBD having done hydrotherapy? He has also reduced and eliminated some > > of Dad's blood pressure drugs as Dad has had terrible dizziness and it > > was the Professor's opinion that these drugs were making Dad's BP way > > too low, so we're hoping that will help with Dad's movement. He also > > said he will write to Dad's neuro to let him know more about Dad's heart > > condition and treatment which I think is great. > > > > So, some good news, some not so good but the thing I'm concerned about > > the most is Dad's depression. He was hoping that the neuro was going to > > have good news for him and help him feel better so it was so sad to see > > his face from that appointment onwards. I had terrible nightmares about > > it all last night. > > > > Thanks so much for your posts. The ones I read this morning (Australian > > time) were so helpful. We had Dad in a wheelchair yesterday for the > > first time to get him around the hospital and it made life so much > > easier but it's good to know that using it too much is not good for > > keeping Dad mobile. Also, knowing about providing 'cues' is priceless > > and something I won't be forgetting any time soon. > > > > Peace to all. > > > > Tania. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2011 Report Share Posted October 9, 2011 Please report the chest pain to his doctors immediately, and you really should take him to the emergency room to see if there is a problem with the placement of the stents or if it has closed itself off at least partially. We might be able to live with bad side effects of meds, when the heart fails that is final. Best Wishes, Pat M. > > > > Thanks Pat. > > Turns out Dad's been up most of the night with chest pain but refused to > let Mum (I live a couple of mins away) call an ambulance. He had stents put > in recently and only told the cardiologist yesterday that he hasn't had > chest pain since. I'm worried now. Not sure whether to take him off Seroquel > (he's only had it for two days and they've been two bad days) or concentrate > on the chest pain. > > Tania... > > > > > > > > > > > > > > > > > > > > Well, we met with Dad's neurologist yesterday for the first time since > > > he diagnosed Dad with LBD early this year and although it was > > > interesting, it was also a pretty awful day. > > > > > > Dad had an MRI yesterday morning and we took the images on disc to the > > > neuro. He said it was worse than would be expected in someone Dad's age > > > (77) but about right for someone with LBD. He also said that the small > > > 'white spots' could indicate a couple of small strokes at some time in > > > the past. Dad watched and listened to everything and seemed to take it > > > all in (he was tired but quite cognisant). > > > > > > The neuro (who is one of Australia's Parkinson's experts but who also > > > has LBD patients) wrote a prescription for my father for his delusions, > > > as well as his mood - which has been very irritable and frustrated but > > > not aggressive physically. The drug is (SEROQUEL or QUETIAPINE). For > the > > > first time in a long time, Dad slept the whole night through. He didn't > > > even get up to go to the bathroom as he usually does several times a > > > night. But today, his mood was even worse. He was looking at people in > > > the street and saying negative things about them for seemingly no > reason > > > and almost every time my mother spoke, he told her to " Shhh " . Has > anyone > > > had experience with Quetiapine? > > > > > > We found while speaking with Dad's neuro that Dad's general > practitioner > > > had not followed his (the neuro's) instructions from earlier this year > > > to take Dad off Sinemet (Carbidopa-Levodopa) which he was prescribed > > > last year for Parkinson's so we have to keep him on that for the time > > > being. > > > > > > In the process of asking the neuro some questions, including how we > > > could improve Dad's heart fitness without putting him at risk due to > the > > > LBD (very poor balance, frequent falls, etc), he said that we shouldn't > > > expect Dad to get better. This was said in front of Dad and from the > > > moment we left the clinic, Dad was noticeably down mood-wise and has > > > been since. I felt quite bad that this was said in front of Dad and > wish > > > I could go back in time. He struggles so much with staying positive so > > > this was a real sledgehammer blow kind of thing to hear. Even if it's > > > true, we didn't want him to hear that. > > > > > > The good/better news is that we saw Dad's cardiologist today as well > and > > > asked him about exercise and he has suggested hydrotherapy so we are > > > currently looking into that. Has anyone had experience with a LO with > > > LBD having done hydrotherapy? He has also reduced and eliminated some > > > of Dad's blood pressure drugs as Dad has had terrible dizziness and it > > > was the Professor's opinion that these drugs were making Dad's BP way > > > too low, so we're hoping that will help with Dad's movement. He also > > > said he will write to Dad's neuro to let him know more about Dad's > heart > > > condition and treatment which I think is great. > > > > > > So, some good news, some not so good but the thing I'm concerned about > > > the most is Dad's depression. He was hoping that the neuro was going to > > > have good news for him and help him feel better so it was so sad to see > > > his face from that appointment onwards. I had terrible nightmares about > > > it all last night. > > > > > > Thanks so much for your posts. The ones I read this morning (Australian > > > time) were so helpful. We had Dad in a wheelchair yesterday for the > > > first time to get him around the hospital and it made life so much > > > easier but it's good to know that using it too much is not good for > > > keeping Dad mobile. Also, knowing about providing 'cues' is priceless > > > and something I won't be forgetting any time soon. > > > > > > Peace to all. > > > > > > Tania. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2011 Report Share Posted October 9, 2011 Dear Tania My mom moved into a care facility just about a year ago. Within a month they were saying they wanted to try something to calm her agitation. Mom had been living with us for three years prior to this move to the care facility. I had always been afraid to try an antipsychotic med with all that I had read about their use with LBD patients. Reluctantly I gave permission and they started her on seroquel 50mg XR (extended release). It made her way to sleepy so they changed the dose to 25mg in morning and 25mg at night. This seems to work although she does still have periodic outbursts. Now that I see it working for her I wish I had tried it while she was living with us. Could have made life a bit easier for all of us. I think the warnings on this med are worth noting but I also think it is worth trying in low dose to see how it works. Mom also takes an antidepressant. It seemed to help in the beginning but who knows if it really does much now. It is all so worrisome and frustrating until you find something that alleviates some symptoms. I remember how terrible this was. Good luck to you and your family. & mom Ginny age 88 seroquel 50mg aricept 10mg zoloft Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2011 Report Share Posted October 9, 2011 Hi , Thanks for the suggestion. However; I did not make myself clear. After dropping seroquel, and a number of other tries, we did hit the formula which has been working wonderfully insofar as a feeling of well being goes. You all must be tired of hearing about the combination that is doing such good things for us. Namenda, Zoloft, and Gabapentin have kept hallucination free...as far as I can tell, since he is just about 99% mute now, and when he does " say " something, we can't hear him, except for that rare occasion. He is also calm, and, with few exceptions, sleeps through the night. Complications, at the moment, include seizure-like episodes during sleep, a newly found sore on his bottom, and choking and coughing during the night, serve to continue to make our lives exist on the brink. I do have morphine and ativan to use in an emergency type occurrence....have never had to try either, yet. The loss of walking, and incontinence, also add to the mix. However....life goes on, and I live for the times when some sense of recognition, and " that old sparkle " shines through the curtains. Marcia C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2011 Report Share Posted October 9, 2011 Thanks again everyone. Everything that's been said and advised is definitely being taken on board. To be honest, I'm questioning why Dad's neuro put him on Seroquel at all. He had one small hallucination months ago, one small delusion and although he can be quite irritable, he always has been and the only time he's been really aggressive is when he was on the Seroquel. Does this sound like someone who needs to be on an anti-psychotic med? The three key things we believe Dad needs help with right now are: 1) His ability to move and walk better/less falls; 2) Energy - he is always tired (and cold), and; 3) His memory. He often forgets what he was saying mid-sentence even though he can recall people/facts that even my mother (who's as sharp as a knife) can. It was great to read someone else's question about what actually causes an LBD patient to die. These are the sorts of questions that go through my head but rarely think to ask as I'm so focused on day-to-day treatment/quality of life. Tania > > Dear Tania > > My mom moved into a care facility just about a year ago. Within a month they were saying they wanted to try something to calm her agitation. Mom had been living with us for three years prior to this move to the care facility. I had always been afraid to try an antipsychotic med with all that I had read about their use with LBD patients. Reluctantly I gave permission and they started her on seroquel 50mg XR (extended release). It made her way to sleepy so they changed the dose to 25mg in morning and 25mg at night. This seems to work although she does still have periodic outbursts. Now that I see it working for her I wish I had tried it while she was living with us. Could have made life a bit easier for all of us. > > I think the warnings on this med are worth noting but I also think it is worth trying in low dose to see how it works. Mom also takes an antidepressant. It seemed to help in the beginning but who knows if it really does much now. It is all so worrisome and frustrating until you find something that alleviates some symptoms. I remember how terrible this was. Good luck to you and your family. > > & mom Ginny age 88 > seroquel 50mg > aricept 10mg > zoloft > Quote Link to comment Share on other sites More sharing options...
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