Guest guest Posted May 30, 2002 Report Share Posted May 30, 2002 Sue, My Mother had Parkinson's and had a lot of problems with hallucinations. Working with her neurologist, we found that we had to constantly modify her dosage of sinement. When the hallucinations starting getting bad, we would reduce the daily dosage. After a few days (sometimes weeks) she would start getting stiff and have trouble moving and we would go back to the previous daily dosage of sinement. We were never able to find one dosage that would find a balance between the hallucinations and the stiffness. The neurologist described it as trying to chase a rollercoaster. However, she did have Parkinson's and not MSA so I am not sure if the same situation would apply to your husband. In my mother's case the hallucinations were definitely caused by the sinement, but it was something she could not do without. Maybe your neurologist can work with you to try adjusting the dosage on the sinement. I hope this helps. Jim Parsons in Arlington TX Hallucinations Hi, I am Sue, I have not been very active with the group but have been a member for sometime. My husband, has Parkinson Plus, SDS. He has for sometime now been seeing things, people, critters as he calls them. My question is has anyone had hallucinations taking Sinemet and Selegiline or in connection with SDS. He was taking mirapex when they first started but he has not had any for several months. He also has arthritis and takes Embrel and Methotrexate both as injections and Prednisone which he was off of for 9 days and it did not make any difference with the hallucinations. Has anyone taken a drug holiday? If so did it help or would you recommend that this be tried as a solution to the hallucinations. We are ready to try anything. Thanks for all your help. Sue and If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2002 Report Share Posted May 30, 2002 Sue, My Mother had Parkinson's and had a lot of problems with hallucinations. Working with her neurologist, we found that we had to constantly modify her dosage of sinement. When the hallucinations starting getting bad, we would reduce the daily dosage. After a few days (sometimes weeks) she would start getting stiff and have trouble moving and we would go back to the previous daily dosage of sinement. We were never able to find one dosage that would find a balance between the hallucinations and the stiffness. The neurologist described it as trying to chase a rollercoaster. However, she did have Parkinson's and not MSA so I am not sure if the same situation would apply to your husband. In my mother's case the hallucinations were definitely caused by the sinement, but it was something she could not do without. Maybe your neurologist can work with you to try adjusting the dosage on the sinement. I hope this helps. Jim Parsons in Arlington TX Hallucinations Hi, I am Sue, I have not been very active with the group but have been a member for sometime. My husband, has Parkinson Plus, SDS. He has for sometime now been seeing things, people, critters as he calls them. My question is has anyone had hallucinations taking Sinemet and Selegiline or in connection with SDS. He was taking mirapex when they first started but he has not had any for several months. He also has arthritis and takes Embrel and Methotrexate both as injections and Prednisone which he was off of for 9 days and it did not make any difference with the hallucinations. Has anyone taken a drug holiday? If so did it help or would you recommend that this be tried as a solution to the hallucinations. We are ready to try anything. Thanks for all your help. Sue and If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2002 Report Share Posted May 30, 2002 Sue, My Mother had Parkinson's and had a lot of problems with hallucinations. Working with her neurologist, we found that we had to constantly modify her dosage of sinement. When the hallucinations starting getting bad, we would reduce the daily dosage. After a few days (sometimes weeks) she would start getting stiff and have trouble moving and we would go back to the previous daily dosage of sinement. We were never able to find one dosage that would find a balance between the hallucinations and the stiffness. The neurologist described it as trying to chase a rollercoaster. However, she did have Parkinson's and not MSA so I am not sure if the same situation would apply to your husband. In my mother's case the hallucinations were definitely caused by the sinement, but it was something she could not do without. Maybe your neurologist can work with you to try adjusting the dosage on the sinement. I hope this helps. Jim Parsons in Arlington TX Hallucinations Hi, I am Sue, I have not been very active with the group but have been a member for sometime. My husband, has Parkinson Plus, SDS. He has for sometime now been seeing things, people, critters as he calls them. My question is has anyone had hallucinations taking Sinemet and Selegiline or in connection with SDS. He was taking mirapex when they first started but he has not had any for several months. He also has arthritis and takes Embrel and Methotrexate both as injections and Prednisone which he was off of for 9 days and it did not make any difference with the hallucinations. Has anyone taken a drug holiday? If so did it help or would you recommend that this be tried as a solution to the hallucinations. We are ready to try anything. Thanks for all your help. Sue and If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2002 Report Share Posted May 30, 2002 Sue, Jim Parsons gave you good advice on Sinemet. An overdose of Sinemet can cause hallucinations and you have to carefully balance movement against dyskinesia and hallucinations. Note when he starts into an OFF period and allow a half hour or so of OFF time before giving another pill - this also changes with time of day and stress levels. Days where he is active and it is hot out, you may have to have an extra Sinemet, but days that it is cold and you are not active, you can probably use less. I am not sure about the arthritis meds, you can look them up to see if they contribute to this type of thing. The Selegiline is sort of iffy as to helping with MSA. They decided early on that it was not helping my wife and took her off it. A few people have reported some help with it and MSA, ask you doctor if they feel it is helping as it should. To me that would be the more likely med to cut back, but one sinemet per day cut may help. How many and what strength Sinemet is he taking? Comtan seems to work better than selegiline for at least some MSA patients including my wife who lived more than 8 years after stopping selegiline. Take care, Bill Werre --------------------------------------------------------------------- sue_keadle wrote: > Hi, I am Sue, I have not been very active with the group but have > been a member for sometime. My husband, has Parkinson Plus, > SDS. He has for sometime now been seeing things, people, critters as > he calls them. My question is has anyone had hallucinations taking > Sinemet and Selegiline or in connection with SDS. He was taking > mirapex when they first started but he has not had any for several > months. > > He also has arthritis and takes Embrel and Methotrexate both as > injections and Prednisone which he was off of for 9 days and it did > not make any difference with the hallucinations. > > Has anyone taken a drug holiday? If so did it help or would you > recommend that this be tried as a solution to the hallucinations. We > are ready to try anything. > > Thanks for all your help. > > Sue and > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2002 Report Share Posted May 30, 2002 is taking 25/100 sinemet 1/2 tablet every 2 hours during the day. Sometimes it is longer than 2 hours between the dose. The Selegiline he takes 2 times a day both in the morning. We stopped the second dose for a few days and his shaking was much worse so he went back to 2 per day. I think that we will try to wait longer between dose and see if it does help. Thanks for your information. Sue dx PD/SDS 3/98 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2002 Report Share Posted May 30, 2002 Sue, I don't like the half pill idea as that was never enough to help Charlotte. Talk to your doctor about changing the timing. You may want to try a full Sinemet on awakening and a meal about 45 minutes later. Then another full Sinemet four hours after the first with a meal about 45 minutes later. Then watch for when he goes " OFF " hopefully this one can get 5 hours, have him take a rest or nap during this Off period then another full Sinemet and a meal 45 minutes later. Is he taking a CR at bedtime? What is his total L-dopa intake per day? The combination of selegiline and Sinemet timing may need adjusting also. Sounds as if they may help each other too much at times. He NEEDS an OFF period of a short time to make sure you are not overdosing him. Keep a schedule and a list of what you try to show the doctor. Is he only hallucinating at night? Take care, Bill Werre ============================================== sue_keadle wrote: > is taking 25/100 sinemet 1/2 tablet every 2 hours during the > day. Sometimes it is longer than 2 hours between the dose. The > Selegiline he takes 2 times a day both in the morning. We stopped > the second dose for a few days and his shaking was much worse so he > went back to 2 per day. > > I think that we will try to wait longer between dose and see if it > does help. > > Thanks for your information. Sue > > dx PD/SDS 3/98 > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2002 Report Share Posted May 30, 2002 He sees things all times of the day. Sometimes at night he sees things when he wakes up, or seems to have a dream and wakes looking for people or things in the house. Mostly it is during the day. He was taking a whole Sinemet every 3 hours but that did not seem to work to good. That is why the doctor said 1/2 every 2 hours. I have been reading some of the emails and have some questions about the Lewy Body Dementia that I want to ask the doctor about. I wonder how they decide that a person has Lewy Body Dementia? Is there a test? Thanks, Sue > > > is taking 25/100 sinemet 1/2 tablet every 2 hours during the > > day. Sometimes it is longer than 2 hours between the dose. The > > Selegiline he takes 2 times a day both in the morning. We stopped > > the second dose for a few days and his shaking was much worse so he > > went back to 2 per day. > > > > I think that we will try to wait longer between dose and see if it > > does help. > > > > Thanks for your information. Sue > > > > dx PD/SDS 3/98 > > > > If you do not wish to belong to shydrager, you may > > unsubscribe by sending a blank email to > > > > shydrager-unsubscribe@y... > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2002 Report Share Posted May 30, 2002 He sees things all times of the day. Sometimes at night he sees things when he wakes up, or seems to have a dream and wakes looking for people or things in the house. Mostly it is during the day. He was taking a whole Sinemet every 3 hours but that did not seem to work to good. That is why the doctor said 1/2 every 2 hours. I have been reading some of the emails and have some questions about the Lewy Body Dementia that I want to ask the doctor about. I wonder how they decide that a person has Lewy Body Dementia? Is there a test? Thanks, Sue > > > is taking 25/100 sinemet 1/2 tablet every 2 hours during the > > day. Sometimes it is longer than 2 hours between the dose. The > > Selegiline he takes 2 times a day both in the morning. We stopped > > the second dose for a few days and his shaking was much worse so he > > went back to 2 per day. > > > > I think that we will try to wait longer between dose and see if it > > does help. > > > > Thanks for your information. Sue > > > > dx PD/SDS 3/98 > > > > If you do not wish to belong to shydrager, you may > > unsubscribe by sending a blank email to > > > > shydrager-unsubscribe@y... > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2002 Report Share Posted May 30, 2002 He sees things all times of the day. Sometimes at night he sees things when he wakes up, or seems to have a dream and wakes looking for people or things in the house. Mostly it is during the day. He was taking a whole Sinemet every 3 hours but that did not seem to work to good. That is why the doctor said 1/2 every 2 hours. I have been reading some of the emails and have some questions about the Lewy Body Dementia that I want to ask the doctor about. I wonder how they decide that a person has Lewy Body Dementia? Is there a test? Thanks, Sue > > > is taking 25/100 sinemet 1/2 tablet every 2 hours during the > > day. Sometimes it is longer than 2 hours between the dose. The > > Selegiline he takes 2 times a day both in the morning. We stopped > > the second dose for a few days and his shaking was much worse so he > > went back to 2 per day. > > > > I think that we will try to wait longer between dose and see if it > > does help. > > > > Thanks for your information. Sue > > > > dx PD/SDS 3/98 > > > > If you do not wish to belong to shydrager, you may > > unsubscribe by sending a blank email to > > > > shydrager-unsubscribe@y... > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2002 Report Share Posted May 31, 2002 Are they spiders??A nurse was once telling me that some see spiders. nancy sue_keadle wrote: > > Hi, I am Sue, I have not been very active with the group but have > been a member for sometime. My husband, has Parkinson Plus, > SDS. He has for sometime now been seeing things, people, critters as > he calls them. My question is has anyone had hallucinations taking > Sinemet and Selegiline or in connection with SDS. He was taking > mirapex when they first started but he has not had any for several > months. > > He also has arthritis and takes Embrel and Methotrexate both as > injections and Prednisone which he was off of for 9 days and it did > not make any difference with the hallucinations. > > Has anyone taken a drug holiday? If so did it help or would you > recommend that this be tried as a solution to the hallucinations. We > are ready to try anything. > > Thanks for all your help. > > Sue and > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2002 Report Share Posted May 31, 2002 There have been so many messages lately I'm having a hard time keeping up. Just wanted to join in the discussion about hallucinations. Hallucinations can be brought on by large doses of sinemet. One way to reduce sinemet is to combine that with sinemet cr. Another way is to use a dopamine agonist such as comtan. That allows you to reduce the dopamine. Another recommended dopamine agonist is mirapex. However there seems to be some anecdotal evidence that mirapex can cause problems with some MSA patients. Another approach to reducing hallucinations and related symptoms is to use seroquel. You would have to work up over a period of weeks to a dosage of 100 mg morning and evening. Finally there is some evidence that SRI based anti depressants (ie paxil, zoloft, celexa etc.) can cause problems, especially for those diagnosed with lewy body problems. That may also be true of some straight MSA patients. Peg appears to have been helped by switching from celexa to wellbutrin (generic name is bupropion). Be sure that you discuss any such adjustments in medicine with a knowledgeable doctor. If what you are currently doing is working for you, that is the best indication there is no need for a change. Some of the approaches also depend on where a particular patient is in the progress of the disease and how responsive the patient is to sinemet. The information here is based on long term experience with one patient, discussion with doctors, reading about the experiences of those on this list, and reading some (but not all) of the articles posted with this list. If someone would need more specific details on what we have done, let us know. The comments below about time of day and stress levels and the use of sinemet are also very valid, especially in patients who have had MSA for some years. Peg and Jim from Guam >Subject: Re: Hallucinations > >Sue, > >Jim Parsons gave you good advice on Sinemet. An overdose of Sinemet can >cause hallucinations and you have to carefully balance movement against >dyskinesia and hallucinations. Note when he starts into an OFF period and >allow a half hour or so of OFF time before giving another pill - this also >changes with time of day and stress levels. Days where he is active and it >is hot out, you may have to have an extra Sinemet, but days that it is cold >and you are not active, you can probably use less. > ******************************** *** Peg & Jim *** # 29 Cruz Heights *** Ipan-Talofofo, Guam 96930-4736 *** USA *** *** Note: Guam is 15 hours ahead of *** Eastern Standard Time (EST). *** 14 ahead of EDT. ******************************** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2002 Report Share Posted May 31, 2002 Deborah, Wow! Thanks for the info. I know that we all have our own symptoms and we aren't all going to have the same ones but if I am ever told to go off my medicines I will think about it alot more about doing it. If I do decide to do it I will tell my husband to lock me in the closet until I get over any hallucinations it may cause. God bless, Belinda > Quote Link to comment Share on other sites More sharing options...
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