Guest guest Posted June 30, 2002 Report Share Posted June 30, 2002 Dave, I put this on all my husband's med lists - it's from a study that someone i= n our group posted. ~lula ************************************ Diagnosis: Lewy Body Disease with Parkinsonism SEVERE NEUROLEPTIC SENSITIVITY REACTIONS CAN PRECIPITATE IRREVERSIBLE PARKI= NSONISM, FURTHER IMPAIR CONSCIOUSNESS LEVEL, AND INDUCE AUTONOMIC DISTURBANC= ES REMINISCENT OF NEUROLEPTIC MALIGNANT SYNDROME IN DLB. THEY OCCUR IN 40% T= O 50% OF NEUROLEPTIC-TREATED PATIENTS AND ARE ASSOCIATED WITH A 2- TO 3-FOLD= INCREASED MORTALITY. Neurologic Clinics Volume 18 . Number 4 . November 2000 Copyright © 2000 W. B. Saunders Company SPECTRUM OF PARKINSON'S DISEASE, PARKINSON'S DEMENTIA, AND LEWY BODY DEMENT= IA Ian G. Mc 1 MD, FRCPsych Burn 2 MD, FRCP Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 I used benedryl to help my Mom sleep. We started off at a child's dose of 12.5mg and then I increased it to 25mg. An adult dosage is 50mg. The one thing you have to watch for, as with children, it could also have the opposite affect. Instead of being sedating they could be come hyperactive. Mariea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 To all who have used Exelon or have info on the medication. Thanks to all who have emailed medication information. This is extremely helpful. I have some medication questions. From my reading here and from other sources, I am going to try Exelon for my mom. She currently is not on any medication. She is starting out with 1.5mg twice a day which I believe is half of the recommended dose. 1) Could people tell me their experience with this med? 2) Did it reduce agitation? 3) Side effects? Please include the dosage used and if any other drugs were also being used. Thanks...Dave For Dave Dave, I put this on all my husband's med lists - it's from a study that someone i= n our group posted. ~lula ************************************ Diagnosis: Lewy Body Disease with Parkinsonism SEVERE NEUROLEPTIC SENSITIVITY REACTIONS CAN PRECIPITATE IRREVERSIBLE PARKI= NSONISM, FURTHER IMPAIR CONSCIOUSNESS LEVEL, AND INDUCE AUTONOMIC DISTURBANC= ES REMINISCENT OF NEUROLEPTIC MALIGNANT SYNDROME IN DLB. THEY OCCUR IN 40% T= O 50% OF NEUROLEPTIC-TREATED PATIENTS AND ARE ASSOCIATED WITH A 2- TO 3-FOLD= INCREASED MORTALITY. Neurologic Clinics Volume 18 . Number 4 . November 2000 Copyright © 2000 W. B. Saunders Company SPECTRUM OF PARKINSON'S DISEASE, PARKINSON'S DEMENTIA, AND LEWY BODY DEMENT= IA Ian G. Mc 1 MD, FRCPsych Burn 2 MD, FRCP Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 To all who have used Exelon or have info on the medication. Thanks to all who have emailed medication information. This is extremely helpful. I have some medication questions. From my reading here and from other sources, I am going to try Exelon for my mom. She currently is not on any medication. She is starting out with 1.5mg twice a day which I believe is half of the recommended dose. 1) Could people tell me their experience with this med? 2) Did it reduce agitation? 3) Side effects? Please include the dosage used and if any other drugs were also being used. Thanks...Dave For Dave Dave, I put this on all my husband's med lists - it's from a study that someone i= n our group posted. ~lula ************************************ Diagnosis: Lewy Body Disease with Parkinsonism SEVERE NEUROLEPTIC SENSITIVITY REACTIONS CAN PRECIPITATE IRREVERSIBLE PARKI= NSONISM, FURTHER IMPAIR CONSCIOUSNESS LEVEL, AND INDUCE AUTONOMIC DISTURBANC= ES REMINISCENT OF NEUROLEPTIC MALIGNANT SYNDROME IN DLB. THEY OCCUR IN 40% T= O 50% OF NEUROLEPTIC-TREATED PATIENTS AND ARE ASSOCIATED WITH A 2- TO 3-FOLD= INCREASED MORTALITY. Neurologic Clinics Volume 18 . Number 4 . November 2000 Copyright © 2000 W. B. Saunders Company SPECTRUM OF PARKINSON'S DISEASE, PARKINSON'S DEMENTIA, AND LEWY BODY DEMENT= IA Ian G. Mc 1 MD, FRCPsych Burn 2 MD, FRCP Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 In a message dated 7/1/02 2:10:09 PM Central Daylight Time, sanclown@... writes: > Is there a difference between Neuroleptic Meds., and Atypical Neuroleptic > Meds Sandie, I once heard the atypicals referred to as " newer generation. " Am sure there's more to it, but that's all I remember. I think the hope was that they would be better for everyone. However, my husband, who did so well on the old Mellaril for several years, was really tipped around on Risperdol within a week. Then there was Hez' mother, who didn't respond to anything BUT Risperdol . . . Someone else will give you more complete info. :-) Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 Dave, I don't recall the particulars, but do remember that someone's LO had a bad enough experience with Benadryl that I don't want my husband to try it except as a last resort. Yet others have had no problem . . . It seems we really have to do trial and error before we know for sure for any individual. Good luck with your decisions! Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 Dave My dad started Exelon March 10, 2002. Dosage started at 1.5 mg. It will be increased to 1.5 mg 2 x daily (3.0 total daily) for 30 days. Total dosage will not exceed 6.0 mg. Initially I and the staff noticed a remarkable improvement in my dad....he walked taller, not stooping, he talked more and clearly, his memory of visits he and I had came out in conversation....big positive change. Well, I think my dad may be more advanced in this horrible disease than your mom as he has had a strange progression the past 2 or 3 weeks. He sleeps nearly all day and night, yet when he is awake he stays in his room at the nursing home. In answer to your other questions, I had not noticed any side affects, but it is hard to get information from my dad as he just doesn't talk much. It seemed to reduce the agitation at the time, yet again, with his progression, he seems somewhat agitated again. He seems to be affected by the depression characteristic of LBD and it tends to manifest itself in sadness and agitation. My dad also takes Zoloft 75 mg to help treat the depression and sadness. I hope some of this is helpful for you, and please keep posting and asking questions. Best of luck to you and I will be praying for you. Sandie Des Moines, IA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 Dave My dad started Exelon March 10, 2002. Dosage started at 1.5 mg. It will be increased to 1.5 mg 2 x daily (3.0 total daily) for 30 days. Total dosage will not exceed 6.0 mg. Initially I and the staff noticed a remarkable improvement in my dad....he walked taller, not stooping, he talked more and clearly, his memory of visits he and I had came out in conversation....big positive change. Well, I think my dad may be more advanced in this horrible disease than your mom as he has had a strange progression the past 2 or 3 weeks. He sleeps nearly all day and night, yet when he is awake he stays in his room at the nursing home. In answer to your other questions, I had not noticed any side affects, but it is hard to get information from my dad as he just doesn't talk much. It seemed to reduce the agitation at the time, yet again, with his progression, he seems somewhat agitated again. He seems to be affected by the depression characteristic of LBD and it tends to manifest itself in sadness and agitation. My dad also takes Zoloft 75 mg to help treat the depression and sadness. I hope some of this is helpful for you, and please keep posting and asking questions. Best of luck to you and I will be praying for you. Sandie Des Moines, IA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 Thanks for the input Sandie. My moms agitation is just constant talking, some underdstandable but most not. She is also constantly moving in her chair. So I am hoping that Exelon will calm her down. I also meant to ask about benadryl? A nurse recommended this because one of it's side effects was drowsiness. It does help my mom sleep which stops the agitation and gives us a temporary respit. Any experience with this? I also now know that it's an anticholinergic which could be bad for DLB people. Any other suggestions for calming? RE: For Dave Dave My dad started Exelon March 10, 2002. Dosage started at 1.5 mg. It will be increased to 1.5 mg 2 x daily (3.0 total daily) for 30 days. Total dosage will not exceed 6.0 mg. Initially I and the staff noticed a remarkable improvement in my dad....he walked taller, not stooping, he talked more and clearly, his memory of visits he and I had came out in conversation....big positive change. Well, I think my dad may be more advanced in this horrible disease than your mom as he has had a strange progression the past 2 or 3 weeks. He sleeps nearly all day and night, yet when he is awake he stays in his room at the nursing home. In answer to your other questions, I had not noticed any side affects, but it is hard to get information from my dad as he just doesn't talk much. It seemed to reduce the agitation at the time, yet again, with his progression, he seems somewhat agitated again. He seems to be affected by the depression characteristic of LBD and it tends to manifest itself in sadness and agitation. My dad also takes Zoloft 75 mg to help treat the depression and sadness. I hope some of this is helpful for you, and please keep posting and asking questions. Best of luck to you and I will be praying for you. Sandie Des Moines, IA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 Dave You are very welcome. I am sorry I have no other suggestions for calming. My dad, early in his diagnosis was very " busy " and didn't stay still for very long. Now, as I mentioned, he sleeps most of the day away. Also, when I do get him awake he is in somewhat of a blur, cloudy state. With the many fluctuations I am hoping this passes and I will be able to have my dad back to his normal. Don't know anything about Benadryl, only my effects toward it. I could take it now, and in 15 minutes be asleep until tomorrow....kind of a light weight where meds. are concerned. :-) Keep us posted as to how your mom reacts to the Exelon, and remember that most LBD patients can take the same med. and have different reactions. This disease is so unpredictable Sandie Des Moines, IA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 In a message dated 7/1/02 4:53:06 PM Central Daylight Time, sanclown@... writes: > Standard Neuroleptics and Atypical Neuroleptics.... Sandie, Do they say anything about standard neuroleptics being older generation, vs atypicals being newer? I know Haldol and Mellaril are older generation, Resperdol " new. " Anyone out there who can help us with this? Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 Dave, my husband used to be extremely 'hyper' and anxious. 20mg. of Paxil has made a huge difference! I, personally, would not give anything over-the-counter other than Ibuprofen. ( Even cough syrup without codeine produced hallucinations.) Mai-Liis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 --We started on Exelon in Oct 2000 and went up to the 4.5 mg dosage - it caused some problems with leg edema going from 3 mg to 4.5. My husband has major heart problems so we didn't try the 6 mg. We also had a low dose of seroquel (for hallucinations and agitation) that eventually was discontinued over time, I think because of the exelon. ~lula Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 Dave and Group: I have a question.....Is there a difference between Neuroleptic Meds., and Atypical Neuroleptic Meds.? My understanding is Neuroleptics consist of the Haldhol (sp) and Ativan type meds. Atypical Neuroleptics are the Zyprexa and Risperdal type meds. Please help with any information on this. Also, Dave a wonderful website containing information on meds. is eDruginfo.com. I think the proper website address is http://www.edruginfo.com/dud Hope this goes through and if not, go in under your search engine and type in eDruginfo.com. I researched Exelon, before my dad was put on it and it gave me Drug Updates | New Drugs. Talks about how it is supplied, indications, route, and dosage etc. I hope this is helpful for you. Sandie Des Moines, IA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 Cheryl Thank you for replying and giving the information from your experiences. My dad is taking Zyprexa as one of his meds., and I seem to think he has maxed out on it. I know Dave has said this is a neuroleptic, however, my papers show there are Standard Neuroleptics and Atypical Neuroleptics....both having their own meds. listed in each catagory......arggghhh sometimes this gets so confusing!! Sandie Des Moines, IA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 Cheryl No, unfortunately all that is stated is Standard Neuroleptics and Atypical Neuroleptics.....sure wish I could distinguish the difference. I do appreciate your help and replies!! :-) Sandie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2002 Report Share Posted July 2, 2002 I have been reading the updates and I appreciate everyones response. We just strated yesterday on Exelon. The doctor (or his nurse) says it may take at least 2 weeks to see any improvement. We will have to deal with my mom's extreme agitation. After 6 days of progressively more and more iritation, she is at the point where she is basically yelling all day long with periods of crying mixed in. We are all completely frazzled. Before I talk with the doctor, I wanted to ask the group a few questions: Has anyone had a LO who was irritated/agitated basically all day? Was there any medication, other than neuroleptics or Benzodiapines, that would calm them? Since we are at the point where we just think her agitation is too much for her and us, we are looking for a medication(or side effect) that will sedate her for most of the day until we can see if Exelon is working. Is there such a medication that is not harmful to DLB people? Thanks...Dave RE: For Dave Dave My dad started Exelon March 10, 2002. Dosage started at 1.5 mg. It will be increased to 1.5 mg 2 x daily (3.0 total daily) for 30 days. Total dosage will not exceed 6.0 mg. Initially I and the staff noticed a remarkable improvement in my dad....he walked taller, not stooping, he talked more and clearly, his memory of visits he and I had came out in conversation....big positive change. Well, I think my dad may be more advanced in this horrible disease than your mom as he has had a strange progression the past 2 or 3 weeks. He sleeps nearly all day and night, yet when he is awake he stays in his room at the nursing home. In answer to your other questions, I had not noticed any side affects, but it is hard to get information from my dad as he just doesn't talk much. It seemed to reduce the agitation at the time, yet again, with his progression, he seems somewhat agitated again. He seems to be affected by the depression characteristic of LBD and it tends to manifest itself in sadness and agitation. My dad also takes Zoloft 75 mg to help treat the depression and sadness. I hope some of this is helpful for you, and please keep posting and asking questions. Best of luck to you and I will be praying for you. Sandie Des Moines, IA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2002 Report Share Posted July 2, 2002 Dave I can actually say I know what you are going through. From what I understand, depression is what is bringing out the agitation. Depression will manifest itself in many different forms. My dad is and has been agitate/agressive for months now.....most of the day. Some of his agression is due to pain from DLB, and some from being approached by the staff. Either way he is usually either angry, agitated, and/or crying. I had tried him on Paxil, however, a neuropsychiatrist recently told me studies have shown geriatric patients are having reverse affects....making them more agitated instead of calming them. So she took him off the Paxil and started Zoloft. Started him on 25 mg for three days, 50 mg for 3 days and 75 mg for now.....but recently bumped that up to 100 mg. My dad doesn't talk much, just growls a lot. Best explanation I can give is he will growl a " NO " at the staff if he doesn't want to be bothered. Even when he says my name, of which I have to ask him what it is, it doesn't come out plain....kind of a muffled, growl. Anyway, back to the meds. As with the Exelon, Zoloft will take about 2 weeks to fully get in the system and to notice any type of change. Oh, I have noticed that when we give my dad 2 extra strength Tylenol for pain, he gets a little drousy...maybe this will help get your mom through. I understand the feeling of wanting to sedate them as the life they are living with the extreme agitation and tears sure has no quality. Best of luck with this and I hope this is somewhat helpful. Please keep me posted! Saying a prayer for you right now..... Sandie Des Moines, IA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2002 Report Share Posted July 2, 2002 I also wanted to ask one other question: I know that Benzodiapines are bad for DLB. However, what about using it on a temporary basis (2 weeks) to try and calm my mom? We have used it in the past a few times. Sometimes it puts her to sleep and sometimes it has no effect. I am thinking of a dose in the morning and one at night. Any suggestions/comments? RE: For Dave Dave My dad started Exelon March 10, 2002. Dosage started at 1.5 mg. It will be increased to 1.5 mg 2 x daily (3.0 total daily) for 30 days. Total dosage will not exceed 6.0 mg. Initially I and the staff noticed a remarkable improvement in my dad....he walked taller, not stooping, he talked more and clearly, his memory of visits he and I had came out in conversation....big positive change. Well, I think my dad may be more advanced in this horrible disease than your mom as he has had a strange progression the past 2 or 3 weeks. He sleeps nearly all day and night, yet when he is awake he stays in his room at the nursing home. In answer to your other questions, I had not noticed any side affects, but it is hard to get information from my dad as he just doesn't talk much. It seemed to reduce the agitation at the time, yet again, with his progression, he seems somewhat agitated again. He seems to be affected by the depression characteristic of LBD and it tends to manifest itself in sadness and agitation. My dad also takes Zoloft 75 mg to help treat the depression and sadness. I hope some of this is helpful for you, and please keep posting and asking questions. Best of luck to you and I will be praying for you. Sandie Des Moines, IA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2002 Report Share Posted July 2, 2002 I meant to say the Benzodiapine I am thinking of is Adivan(Lorazepam). I know everyone talkes negatively about this drug for DLB so I was just wondering about short term use. RE: For Dave Dave My dad started Exelon March 10, 2002. Dosage started at 1.5 mg. It will be increased to 1.5 mg 2 x daily (3.0 total daily) for 30 days. Total dosage will not exceed 6.0 mg. Initially I and the staff noticed a remarkable improvement in my dad....he walked taller, not stooping, he talked more and clearly, his memory of visits he and I had came out in conversation....big positive change. Well, I think my dad may be more advanced in this horrible disease than your mom as he has had a strange progression the past 2 or 3 weeks. He sleeps nearly all day and night, yet when he is awake he stays in his room at the nursing home. In answer to your other questions, I had not noticed any side affects, but it is hard to get information from my dad as he just doesn't talk much. It seemed to reduce the agitation at the time, yet again, with his progression, he seems somewhat agitated again. He seems to be affected by the depression characteristic of LBD and it tends to manifest itself in sadness and agitation. My dad also takes Zoloft 75 mg to help treat the depression and sadness. I hope some of this is helpful for you, and please keep posting and asking questions. Best of luck to you and I will be praying for you. Sandie Des Moines, IA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2002 Report Share Posted July 2, 2002 Sorry, I have no experience with Benzopiadines. I do know that with the neuroleptics, any doses or intake can be harmful. Wish I had some knowledge to help you out with this one. Sandie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2002 Report Share Posted July 2, 2002 Dave Just read your other email, and I would strongly urge you not to give your mom Ativan.....can be very harmful and some suggest even fatal. It can possible help with the agitation, yet the parkinsons side of this disease is adversly affected and they can never recover. Of course, everyone is different, however, I wouldn't suggest it. Sandie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2002 Report Share Posted July 2, 2002 Dave May I ask if your mom is over-stimulated? My knowledge has been that if a T.V. is on, or if there is a lot of noise, my dad does worse. Also, if there are new faces.....he just doesn't cope well. I guess reasoning behind the T.V. is the LBD person can't always tell reality from delusions, therefore it agitates them. Same with noise.....if a radio is on a calming station, dad usually does ok....but if it is on some type of rock station....he is very uneasy and agitated. Hoping maybe this helps. Sandie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2002 Report Share Posted July 2, 2002 Sandie, We try and do everything we can with the environment. We haven't watched too much TV since my mom has been home. We might turn it on but we don't turn up the volume. We also try and position my mom so she can't see it. We have taken pictures down and removed some furniture to give us more room. Music works sometimes but not consistently. She just seems to be constantly agitated no matter what we try. Prayer is the one thing I consistently rely on. I have several people in my Bible study that also pray so that helps us but it's difficult none the less. Thanks for the encouragement and suggestions...Dave RE: For Dave Dave May I ask if your mom is over-stimulated? My knowledge has been that if a T.V. is on, or if there is a lot of noise, my dad does worse. Also, if there are new faces.....he just doesn't cope well. I guess reasoning behind the T.V. is the LBD person can't always tell reality from delusions, therefore it agitates them. Same with noise.....if a radio is on a calming station, dad usually does ok....but if it is on some type of rock station....he is very uneasy and agitated. Hoping maybe this helps. Sandie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2002 Report Share Posted July 2, 2002 Dave You are welcome, just wish I could do more. One of the issues with this disease is there seems to be so little all of us can do. Sounds like you are on the right track doing research, checking on meds., and helping your mom to have the best quality of life possible. Keep your chin up, you will get answers. Luckily with this disease it fluctuates so hopefully this agitation stage will pass and you will have some peace. God Bless! Sandie Quote Link to comment Share on other sites More sharing options...
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