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I developed Neuroleptic malignant syndrome in sept 08 and was in a coma for 2 months on total life support. I was taking my meds on time andthey are not sure how it trigeered. I had dbs in 2004 and it may have had something to do with it. No one is sure. Be careful with all your meds. Research them and aask questions. I wish you alll the best. Beverly Forte ----- Original Message ----- From: "Maureen Potts" <[log in to unmask]> To: <[log in to unmask]> Sent: Sunday, January 11, 2009 5:37 AM Subject: Re: question re dosage > 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 ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn