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Taking the drugs also risky- I'm on Mirapex & the obsessive thoughts are getting to be a pest, also a bore, plus insomnia - but that may be the menopause (at least hot flushes save haeting0. Quoting Maureen Potts <[log in to unmask]>: > Do not ever, and I mean ever, go off your medications without telling your > doctor. You can develop what they call Neuroleptic Malignant Syndrome, > where your blood pressure goes sky high, you pass out, and worse. Some die. > > Drugs for Parkinsons are pretty strong stuff. You are taking your life in > your hands by not being more disciplied about your medications. You are > tempted to phase out the drugs because you feel better. But it is the drugs > > that are making you feel better. Trust me, the day will come when you will > be infinitely grateful for those drugs. > > My brother bought me one of those big plastic pill boxes with compartments > for every day of the week and for a daily schedule. It helped me remember > and to take my drugs on time. You have to commit to counting and sorting > for an hour or so a week. It is well worth it. > > Please dont stop your meds without medical advice. Just remember, > Neuroleptic Malignant Syndrome. Sounds awful, and it is. > > Maureen Thompson (I have been around, just quiet) > > > > ----- Original Message ----- > From: "Murray Kastner" <[log in to unmask]> > To: <[log in to unmask]> > Sent: Saturday, January 10, 2009 10:24 AM > Subject: Re: question re dosage > > > >I am afraid I am the laggard of the group and the spacing of my dosages > >has been all over the clock. I have been prescribed 25/100 Sinemet three > >times a day along with 75 mg Mirapex and 5 mg Selegilene. I also take > >Flomax CR (1x Day)and Novo oxybutnin (1x day). 1 mg Folic Acid, calcium > >2x daily. i am very erratic in taking the meds, and try to keep to three > >times a day but no fixed times. And I usually forget them altogether one > >to three times a week. > > > > I am sorely tempted to give up the meds completely, or to phase them out. > > > I think I have read that there are cases where the meds contribute to the > > > symptoms rather than alleviate them. I also have osteoporosis for which I > > > have just completed an 18-month program with Eli Lilly's new drug, Forteo > > > wherein I injected myself every morning. This past week I took a > > bone-density scan and Wednesday I am hoping to get the results, expecting > > > 20-25% increase in density. This may allow for spinal surgery. which I am > > > not too crazy about. > > > > My worst symptoms are camptocormia which means I cannot straighten myself > > > when standing or walking. I can lay down perfectly straight and > > semis-straight when sitting. But the camptocormia has brought on > > shortness of breath, especially if I walk without a walker. It has been > > suggested that my bent-over posture has been crushing my lungs and so I > > also now have a 'puffer' 3x a day. > > > > I am growing weary and am tempted to give up all the meds and see what > > happens. Before I do that I will enquire as to the consequences. > > Fr'instance: can the PD and accompanying symptoms get worse with no > > returning to the meds to regain the balance I have now? > > > > I will discuss this with my neuro at my next visit -- scheduled every 4-5 > > > months. since 1998 the only deterioration I have experienced is the > > damned camptocormia, apparently a rare condition which my neuro (one of > > two movement disorder specialists in Montreal) has seen only in 3-4 > > others. He feels it may have been triggered by a fall I took a couple of > > years ago which crushed 1-2 vertebrae when I landed on my coccyx. > > > > Phew! Thank you for bearing with this. I have probably left out even more > > > meds, like the anti-depression pills (150 mg) bupropion SR. > > > > Every once in a while I wonder whether I really have PD or whether it is > > something with similar symptoms. > > > > Anyway I think I have rambled on enough and will appreciate input from > > anyone in a similar situation. > > > > Murray > > > > Ray, I received the pins and they are already being displayed all over > > Montreal. Thanks! > > > > > > > > On 6-Jan-09, at 6:33 PM, rayilynlee wrote: > > > >> I recently got some carbo/levo from my neuro to try once more. When I > >> first tried it it helped but never again even tho I took it for a year. > >> He gave me 25/100 3 times a day and I've forgotten how you space the > >> dosages. Do you take it at night or just daytime? I've forgotten. in > > >> 2003 I had DBS and tried Comtan and Stalevo afterwards but it didn't > >> help. > >> > >> > >> Ray > > > > ---------------------------------------------------------------------- > > To sign-off Parkinsn send a message to: > > mailto:[log in to unmask] > > In the body of the message put: signoff parkinsn > > > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: mailto:[log in to unmask] > In the body of the message put: signoff parkinsn > ---------------------------------------------- This mail sent through http://www.ukonline.net ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn