Guest guest Posted August 2, 2007 Report Share Posted August 2, 2007 I've heard these mentioned and am thinking my grandma could benefit from some but can't get her doctors to see where I'm coming from. Grandma is getting progressively sleepier and sleepier all the time and I've mentioned it to her senior care doc AND her neurologist and they blow me off every time!!! They just say " Well she's on a lot of meds that will make her sleepy. " THAT ISN'T IT!!! Her meds have not changed in over a year and she is getting more sleepy (in the day time) all the time. If she sits still for more than 5 minutes without someone demanding her attention she's asleep. I can't get her doctors to see how much this is pulling down her quality of life. I mentioned Provigil (or some other stimulant if that interacts with her other meds) and the docs looked at me like I was an idiot. Any advice on how to make them understand? Thanks in advance for the help! Emma ________________________________________________________________________________\ ____ Sick sense of humor? Visit Yahoo! TV's Comedy with an Edge to see what's on, when. http://tv.yahoo.com/collections/222 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2007 Report Share Posted August 2, 2007 Print out the Boeve paper at: http://www.lewybodydementia.org/Boevelink.php and refer them to the section about psychomotor slowing and hypersomnolence. This is not woo-ee; there is increasing evidence that DLB and PD-like disorders damage the part of the brain that makes hypocretin, the chemical that keeps you awake. Additionally, I believe that Dr. Boeve would be willing to consult with the neurologist directly through the Mayo Clinic's professional consult service. There's a paper that is not yet released about this very topic, and it's invaluable in getting buy-in. Five people this week have sent me email that they've tried a stimulant and it was like they got their loved one back. I can't say enough about how well these drugs can work for some people, Cal included. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2007 Report Share Posted August 5, 2007 , Do you have additional information concerning the Mayo Clinic's professional consult service, or where I can obtain the related paper on this topic? Thanks, Ron > , > > Reading your post made me feel sad for my mom. Wish I had known about this class of drugs before but I suppose its too late now for mom. > Courage > > Re: Psychostimulants () > > Print out the Boeve paper at: > > http://www.lewybodydementia.org/Boevelink.php > > and refer them to the section about psychomotor slowing and > hypersomnolence. This is not woo-ee; there is increasing evidence > that DLB and PD-like disorders damage the part of the brain that makes > hypocretin, the chemical that keeps you awake. > > Additionally, I believe that Dr. Boeve would be willing to consult > with the neurologist directly through the Mayo Clinic's professional > consult service. There's a paper that is not yet released about this > very topic, and it's invaluable in getting buy-in. > > Five people this week have sent me email that they've tried a > stimulant and it was like they got their loved one back. I can't say > enough about how well these drugs can work for some people, Cal included. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2007 Report Share Posted August 5, 2007 Hi Dianne, In reading your post about your father's heart condition, please be vigilant in watching for any negative effects of Seroquel. I hope your MD is aware of the heart condition and is monitoring it. My father had a minor heart attack within a month after starting on Seroquel...no conclusive determination that it was caused by the Seroquel, but I suspected it. If you google seroquel & heart conditions, you will see some of the precautions. Prior heart conditions limits many of the antipsychotics that they may otherwise want to use. It's always something. Take care, Daughter of Bill, 92 -- In LBDcaregivers , Dianne wrote: > > , > You mention an unpublished paper about psychostimulants and/or Mayo consultation services--how can we get access to that (or can we?)? My dad's neurologist was not willing to even think about the provigil regimin--said we hadn't given the Seroquel time enough to work. But the geriatric doc working with the NH is willing to consider it. They said that dad's prior heart attack might cause a problem, however, because the psychostimulants impact the heart. We are trying to get an appt with Dr. Graff-Radford at the Mayo in Jax, but don't think we can get in for a few months. > Dianne P > daughter of Bill, 84 > > gaat17 wrote: > , > > Reading your post made me feel sad for my mom. Wish I had known about this class of drugs before but I suppose its too late now for mom. > Courage > > Re: Psychostimulants () > > Print out the Boeve paper at: > > http://www.lewybodydementia.org/Boevelink.php > > and refer them to the section about psychomotor slowing and > hypersomnolence. This is not woo-ee; there is increasing evidence > that DLB and PD-like disorders damage the part of the brain that makes > hypocretin, the chemical that keeps you awake. > > Additionally, I believe that Dr. Boeve would be willing to consult > with the neurologist directly through the Mayo Clinic's professional > consult service. There's a paper that is not yet released about this > very topic, and it's invaluable in getting buy-in. > > Five people this week have sent me email that they've tried a > stimulant and it was like they got their loved one back. I can't say > enough about how well these drugs can work for some people, Cal included. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2007 Report Share Posted August 5, 2007 Yeah, the paper is embargoed for legal clearance, it does exist. The most current published peer-reviewed information on psychostimulants in DLB remains the Continuum paper. The MD referral and consultation page for Mayo Rochester is: http://www.mayoclinic.org/medicalprofs-rst/referring.html There is information there on MD-to-MD consults. The other campuses have similar services. The Boeve _Continuum_ paper doesn't do a great job of discussing cardiac risk from Provigil, or really, the risks of any of the drugs. But if you look a little deeper into the trial data and postmarketing experience, you'll find that Provigil doesn't activate the peripheral nervous system like caffeine or amphetamines, so it doesn't make the heart work harder independent of increased physical activity. Our cardiologist was initially concerned about Cal's heart and these drugs, but we monitored BP and heart rate very closely for a period of time and didn't see a big change. They are potent drugs, and a lot of prescribers are shy about them, because of the Bad Reputation that amphetamines have (abuse, diversion, psychosis), but it just hasn't been borne out with the novel stimulant Provigil, and amphetamine use in the elderly is not exactly new or cutting-edge. E Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2007 Report Share Posted August 5, 2007 Emma, I am not an MD. But when I had a problem, I tried some things. Maybe she needs a different MD? MDs who don't listen, need to be educated and if that means finding someone who does understand, I would try to find one who would work with me. I had a GP who didn't know a lot about LBD, but he knew an trusted me when I talked to him about Mom and that was worth a lot. 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. Psychostimulants () I've heard these mentioned and am thinking my grandma could benefit from some but can't get her doctors to see where I'm coming from. Grandma is getting progressively sleepier and sleepier all the time and I've mentioned it to her senior care doc AND her neurologist and they blow me off every time!!! They just say " Well she's on a lot of meds that will make her sleepy. " THAT ISN'T IT!!! Her meds have not changed in over a year and she is getting more sleepy (in the day time) all the time. If she sits still for more than 5 minutes without someone demanding her attention she's asleep. I can't get her doctors to see how much this is pulling down her quality of life. I mentioned Provigil (or some other stimulant if that interacts with her other meds) and the docs looked at me like I was an idiot. Any advice on how to make them understand? Thanks in advance for the help! Emma ________________________________________________________________________________\ ____ Sick sense of humor? Visit Yahoo! TV's Comedy with an Edge to see what's on, when. http://tv.yahoo.com/collections/222 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2007 Report Share Posted August 6, 2007 Donna, I see you're in Michigan, do you have any recommendations about doctors? We are in MI too in the Brighton/Ann Arbor area. Right now grandma is seeing a doc at the Senior Health Center at St. Joes in Ann Arbor and as I said, we aren't very happy with that doc as she 1) doesn't take what I say into consideration much and 2) she just seems to always be in a hurry and not have time to discuss things. Thanks for your help! Emma ________________________________________________________________________________\ ____ Be a better Globetrotter. Get better travel answers from someone who knows. Yahoo! Answers - Check it out. http://answers.yahoo.com/dir/?link=list & sid=396545469 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2007 Report Share Posted August 8, 2007 Hi Diane, I'm glad you are starting to see some improvements. It is nerve wracking(sp?) while they experiment to get the meds right. Everyone is so different, there is no " standard " ...but the gut just knows when there has to be a better answer. I hope you continue to find what works the best and that you get to enjoy your dad. All the best, Daughter of Bill, 92 > > , > > > > Reading your post made me feel sad for my mom. Wish I had known > about this class of drugs before but I suppose its too late now for > mom. > > Courage > > > > Re: Psychostimulants () > > > > Print out the Boeve paper at: > > > > http://www.lewybodydementia.org/Boevelink.php > > > > and refer them to the section about psychomotor slowing and > > hypersomnolence. This is not woo-ee; there is increasing evidence > > that DLB and PD-like disorders damage the part of the brain that > makes > > hypocretin, the chemical that keeps you awake. > > > > Additionally, I believe that Dr. Boeve would be willing to consult > > with the neurologist directly through the Mayo Clinic's professional > > consult service. There's a paper that is not yet released about this > > very topic, and it's invaluable in getting buy-in. > > > > Five people this week have sent me email that they've tried a > > stimulant and it was like they got their loved one back. I can't say > > enough about how well these drugs can work for some people, Cal > included. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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