thanks for the warning. i have one question. Did you go off all medication after you had the dbs?
hilary blue
--- On Thu, 6/3/10, Beverly Forte <[log in to unmask]> wrote:
From: Beverly Forte <[log in to unmask]>
Subject: Re: question re dosage
To: [log in to unmask]
Date: Thursday, June 3, 2010, 9:48 AM
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
>>
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