Guest guest Posted March 6, 2008 Report Share Posted March 6, 2008 It seems to me I read somewhere these are not good drugs to use with LBD. But I don't know where. I haven't seen anyone here use them either. Have you checked the " good drug/bad drug list in the " Lists " or Links " below? It just seems like the anticonvulsive drugs are a no-no. Someone who knows drugs better may come up with an answer. Mom couldn't take any drugs. Sorry, Hugs, Donna R Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in a nh. She was almost 89 when she died in '02. No dx other than mine. Tranxene for sleep My sister's neurolgist has suggested a low dosage of Tranxene for her sleep disruption. Tranxene is an anticonvulsive used for epilepsy. She has previously been on Ambien CR and Clonazepam and has had reactions/side effects to both. Does anyone have any experience with this drug and it's effectiveness or side effects? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2008 Report Share Posted March 6, 2008 Helen - I've just searched Tranxene on this message board and there have been no posts (good or bad) about this medication and that's going back to 2000. I checked Dr. Boeve's document - and it's also not listed. I googled Tranxense and it reads: " Tranxene belongs to a class of drugs known as benzodiazepines. " Benzodiazepines are not good for the elderly - read here: Benzodiazepine Website Older people more sensitive - problem possibly due to less cortical reserve http://benzo.org.uk Dementia With Lewy Bodies: A Review Of Clinical Benzodiazepines may negatively affect cognition and produce sedation, paradoxic agitation and increased risk of falls in the elderly http://tinyurl.com/yq5hcq Why such strong feelings about benzos? Message by http://health.groups.yahoo.com/group/LBDcaregivers/message/61849 --- With the above said Dr. Boeve recommends the following meds for sleep. Clonazepam and Melatonin - since Clonazepam didn't work, try Melatonin. Dosage info from Dr. Boeve: Melatonin Starting Dose: 3 mg qhs Suggested Titrating Schedule: Increase in 3-mg increments q3 to 5 days up to 12 mg if necessary Typical Therapeutic Range: 3 mg/night to 12 mg/night http://www.lewybodydementia.org/docs/DLB-BoeveContinuum04.pdf (page 17) --- REM Sleep Behavior Disorder in Parkinson's Disease and Dementia with Lewy Bodies From the treatment perspective, if hypersomnolence, visual hallucinations, and conceivably cataplexy-like spells represent narcoleptic-like phenomena, then the principles of management in patients with narcolepsy may have applicability to patients with PD and DLB. There may be a general reluctance to use psychostimulants in those who are already experiencing hallucinations and delusions, but if hallucinations and delusions represent features of REM sleep invading into wakefulness, psychostimulants may actually improve " psychotic " symptoms. We have already observed improvements in cognition, hypersomnolence,hallucinations, and delusions in some PD and DLB patients with modafinil or methylphenidate. When visual hallucinations occur primarily at night, drugs used for RBD such as clonazepam and melatonin may theoretically be helpful, and we have observed exactly this in some patients. Characterization of the sleep/wake abnormalities in patients with PD and DLB may therefore lead to more effective treatments for challenging clinical problems. http://jgp.sagepub.com/cgi/reprint/17/3/146.pdf --- Dr. Gomperts wrote the following regarding sleep: " Another good (and hard) question. Sleep problems are common in LBD. Patients often sleep during the day (many for more than 2 hours total), and that can lead to nighttime wakefulness. This can even lead to full-blown sleep-wake reversal. This can be hard to treat. One thing to do is to try to minimize daytime naps, as possible, to help the patient return to a nighttime sleep pattern. It is also important to have your loved one's doctor review his medications, to check whether some of his night-time dosed medications may in fact be activating him, and if some of his morning/day time medications may be contributing to daytime somnolence. If that's the case, it may be possible to move the activating medications to morning, and the sleep-enhancing medications to night. Another approach would be to substitute in an otherwise equivalent medication for another to provide more morning activation or more nighttime sleepiness. Sleep medications like benzodiazepines can cause confusion, and should be avoided. An antidepressant that provides a little sleepiness, however, may be worthwhile. " http://www.lewybodydementia.org/docs/gomperts_transcript.pdf > > My sister's neurolgist has suggested a low dosage of Tranxene for her > sleep disruption. Tranxene is an anticonvulsive used for epilepsy. She > has previously been on Ambien CR and Clonazepam and has had > reactions/side effects to both. > > Does anyone have any experience with this drug and it's effectiveness > or side effects? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2008 Report Share Posted March 6, 2008 Helen, and Friends, While meds for sleeping may indeed be needed, could I add my reminder that it's important to determine the reason(s) for the problem. Then the doc can figure out how to address it. Sometimes just the timing or combination of meds creates the problem. Helen, you might ask the MD to review the doses and administration time of your sister's meds. We see this a lot where I work (senior care organization): otherwise good doctors give stimulating meds too close to bedtime, or meds that in combination produce more alertness. And, of course, there are all the symptoms that go along with LBD which can produce sleep issues. My personal and professional experience bears out Dr. Boeve's (and others') recommendations against benzos for our loved ones - or any elderly or otherwise compromised person. Best wishes. Will be thinking of you and your sister. Lin wrote: Helen - I've just searched Tranxene on this message board and there have been no posts (good or bad) about this medication and that's going back to 2000. I checked Dr. Boeve's document - and it's also not listed. I googled Tranxense and it reads: " Tranxene belongs to a class of drugs known as benzodiazepines. " Benzodiazepines are not good for the elderly - read here: Benzodiazepine Website Older people more sensitive - problem possibly due to less cortical reserve http://benzo.org.uk Dementia With Lewy Bodies: A Review Of Clinical Benzodiazepines may negatively affect cognition and produce sedation, paradoxic agitation and increased risk of falls in the elderly http://tinyurl.com/yq5hcq Why such strong feelings about benzos? Message by http://health.groups.yahoo.com/group/LBDcaregivers/message/61849 --- With the above said Dr. Boeve recommends the following meds for sleep. Clonazepam and Melatonin - since Clonazepam didn't work, try Melatonin. Dosage info from Dr. Boeve: Melatonin Starting Dose: 3 mg qhs Suggested Titrating Schedule: Increase in 3-mg increments q3 to 5 days up to 12 mg if necessary Typical Therapeutic Range: 3 mg/night to 12 mg/night http://www.lewybodydementia.org/docs/DLB-BoeveContinuum04.pdf (page 17) --- REM Sleep Behavior Disorder in Parkinson's Disease and Dementia with Lewy Bodies From the treatment perspective, if hypersomnolence, visual hallucinations, and conceivably cataplexy-like spells represent narcoleptic-like phenomena, then the principles of management in patients with narcolepsy may have applicability to patients with PD and DLB. There may be a general reluctance to use psychostimulants in those who are already experiencing hallucinations and delusions, but if hallucinations and delusions represent features of REM sleep invading into wakefulness, psychostimulants may actually improve " psychotic " symptoms. We have already observed improvements in cognition, hypersomnolence,hallucinations, and delusions in some PD and DLB patients with modafinil or methylphenidate. When visual hallucinations occur primarily at night, drugs used for RBD such as clonazepam and melatonin may theoretically be helpful, and we have observed exactly this in some patients. Characterization of the sleep/wake abnormalities in patients with PD and DLB may therefore lead to more effective treatments for challenging clinical problems. http://jgp.sagepub.com/cgi/reprint/17/3/146.pdf --- Dr. Gomperts wrote the following regarding sleep: " Another good (and hard) question. Sleep problems are common in LBD. Patients often sleep during the day (many for more than 2 hours total), and that can lead to nighttime wakefulness. This can even lead to full-blown sleep-wake reversal. This can be hard to treat. One thing to do is to try to minimize daytime naps, as possible, to help the patient return to a nighttime sleep pattern. It is also important to have your loved one's doctor review his medications, to check whether some of his night-time dosed medications may in fact be activating him, and if some of his morning/day time medications may be contributing to daytime somnolence. If that's the case, it may be possible to move the activating medications to morning, and the sleep-enhancing medications to night. Another approach would be to substitute in an otherwise equivalent medication for another to provide more morning activation or more nighttime sleepiness. Sleep medications like benzodiazepines can cause confusion, and should be avoided. An antidepressant that provides a little sleepiness, however, may be worthwhile. " http://www.lewybodydementia.org/docs/gomperts_transcript.pdf > > My sister's neurolgist has suggested a low dosage of Tranxene for her > sleep disruption. Tranxene is an anticonvulsive used for epilepsy. She > has previously been on Ambien CR and Clonazepam and has had > reactions/side effects to both. > > Does anyone have any experience with this drug and it's effectiveness > or side effects? > Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2008 Report Share Posted March 7, 2008 Yes - I agree. And Dr. Gomperts mentions moving meds around too, not adding. http://www.lewybodydementia.org/docs/gomperts_transcript.pdf Also think about this for a sleep aide: Trouble sleeping? Bedtime Beats® was inspired by a study conducted and authored by a nursing team from Case Western Reserve University. The study found that listening to classical or soft jazz music that cycles at 60-80 beats per minute prior to bedtime led to a more restful and satisfying night's sleep. http://bedtimebeats.com/ And I've purchased this CD Trouble sleeping? 2 Another CD option http://health.groups.yahoo.com/group/LBDcaregivers/message/62568 Maybe it's that simple! > > Helen, and Friends, > While meds for sleeping may indeed be needed, could I add my reminder that it's important to determine the reason(s) for the problem. Then the doc can figure out how to address it. Sometimes just the timing or combination of meds creates the problem. Helen, you might ask the MD to review the doses and administration time of your sister's meds. We see this a lot where I work (senior care organization): otherwise good doctors give stimulating meds too close to bedtime, or meds that in combination produce more alertness. And, of course, there are all the symptoms that go along with LBD which can produce sleep issues. > > My personal and professional experience bears out Dr. Boeve's (and others') recommendations against benzos for our loved ones - or any elderly or otherwise compromised person. > > Best wishes. Will be thinking of you and your sister. > > Lin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2008 Report Share Posted March 9, 2008 Thank you for the info, especially . I will share this information with my sister and I'm certain that she will decline the Dr's offer of an RX. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2008 Report Share Posted March 10, 2008 I sincerely appreciate everyones suggestions. My sister is being seen by two neurologists; one at the University of California,San Francisco, the second at her local Kaiser Permanente. It's the local doc that we have to constantly be checking up on due to his obvious lack of current knowledge on LBD. Unfortunately, since that is her primary health insurance we are stuck with him. She has not had a full sleep study, however, after careful evaluation by the UCSF specialist he felt she had RBD. We have already switched her Aricept to morning administration and just recently are trying Dr. Boeve's " Sleep Hygiene " . We'll see how that goes. Quote Link to comment Share on other sites More sharing options...
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