[QUOTE stevem53
..."I have been through hell for months..All of a sudden, dreaded offs, leg cramps that make it difficult to walk and function..dyskenisia..dont feel comfortable standing, sitting, or laying down..Dreading having to go to sleep at night because it is so uncomforable..."

Steve - I was about to ask the same question ! Suddenly, a month ago, I started being unable to find any position that is comfortable. And we don't mean "comfy" as in "comfortable chair" - the word "discomfort" conveys none of the stress. Sit down, lie down, roll over, sit up, lie on the floor, crawl, sit down, lie down, roll over.... EVERY position is so impossible to endure, I end up looking like I am being thrown around the room in some kind of a fit; like being possessed. And it won't stop and it won't stop and it won't stop. Until it decides to stop. And then it decides to start again, just as I am about to step out into the world again.
I'm on sinemet, Mirapex, Seligilene and red wine. I know, they say cut out the wine. Yeah, sure, as if.
But I can't tell if I take too many drugs or not nearly enough.

i'm no expert but 9 50/200 CR sure seems like a lot. hard to believe.

from the pkg insert it would seem 6 would be high:
Dosage with SINEMET CR should be substituted at an amount that provides approximately 10% more levodopa per day, although this may need to be increased to a dosage that provides up to 30% more levodopa per day depending on clinical response (see DOSAGE AND ADMINISTRATION: Titration with SINEMET CR). The interval between doses of SINEMET CR should be 4-8 hours during the waking day

http://packageinserts.bms.com/pi/pi_sinemet_cr.pdf

adverse affects of cr in elderly
http://www.parkinsons-information-ex...chive/092.html

Patient education is important in ensuring a smooth transition between standard Sinemet and Sinemet CR. Patients and caregivers should be instructed not to "double up" on their next dose of Sinetnet CR if the previous dose was inadvertently missed.[4] Patients need to know that the effects of Sinemet CR may be increased by administration with food, while those of standard Sinemet may be decreased. Administering Sinemer CR with food may increase the bioavailability of levodopa as much as 50% and elevate peak plasma levels by 25%.[1,26] Conversely, food may delay the response to standard Sinemet by approximately 30 minutes and decrease peak plasma levels by 27%.[27] Patients and caregivers must also be instructed to report adverse reactions promptly.

Clinicians should be aware of the potential for Sinemet CR preparations to cause mental status changes and dyskinesias in elderly, frail patients with preexisting cognitive impairment and should exercise caution in substituting the controlled-release preparation for standard Sinemet.

Bob..Have you had any med changes in the past few months?

Not any planned change - the sinemet looks a bit different when Apotex shut production and i don't know where it comes from now
... but somedays i may take too much drugs because it used to be they told me breakfast lunch and supper so did 8 a.m. noon 6 p.m.
but now seems i don't sleep at all so when i get up at 2 a.m. and take pills at 3 a.m. and then what? again at 8. uh oh seems some days it's 4 times a day; that they gave a 12 hour schedule to a 24 hour guy (I tell people sleep is just another bad habit they should get over)
but the symptoms get bad i reach for a pill and feel better half an hour later but then this thing starts happening where my body does not fit anywhere in the world - no known position is possible ! It would be funny if it were not so stupid.

I wish you and your mother the best with this. My observation is that is a heavy dose of CR, and most opinion now is to keep it as low as possible. Having said that I also have to say that coming down from any powerful drug, but most especially ones like levodopa will need to be done slowly and with the utmost patience.

My personal belief with the 'wearing-off' aspects of sinemet is that often the symptoms of pd are displayed more intensely, and lead to both patients and doctors thinking that more medication is needed. Many doctors now advocate using less and being very cautious about increases, as well as cocktails of medication. Talk to your mothers doctors about this and the best way to go.

I know that might be easier said than done, but it sounds as though you have already helped her through your perseverance. Just take each step slowly and gently, making small changes. And with help where you can get it.

The improvements that have come so far would seem to indicate there is hope that she will regain some quality of life.

Keep posting and let us know how things are going.

Best wishes to you both,

Lindy

Thanks for your input, it sure has been a bad few months. The last part that disturbed me so much was when they increased her dose 2-3 whole pills with-in 4 days and following that was when she had the bad "attack" weekend. The note made in the records I recieved with the meds from my sister, the doctor said after the ninth pill at 3 am following the 8th pill at 12 am 2 days before that, "I don't think it will make a difference because it is her PD just aggressively advancing." Oh yeah and another half pill could be added as needed during the attacks.

Ive been having some of the same problems..I take 5mg Ambien to sleep, but it has not working so well lately..I cant function without atleast 5 hrs of sleep..Last night I only got 2, and was on and off the couch all day, miserable as a result

I take Stalevo 200 mg 3 times daily, and only 3 times..I found that the more I take, the worse the dyskenisia is, and the worst my off time is

People say that we get addicted to Sinemet, and I believe it..Ive noticed that my worse off time is inbetween doses..If I forget to take my meds atleast 3 1/2 hours apart, I have crash and burn off periods, untill the next dose kicks in..It also doesnt matter, whether I take them 3, 3 1/2, or 4 hours apart, at about 8:00 pm, they wear off for the day..From 8:00 pm I begin to go off, there is a half hour of dyskenisia, and my movements slow down, and I shuffle around..At midnight, I come out of it somewhat, and the shuffling gait stops, and I can move better..I found this very strange for a while, untill I sort of connected the dots, and realized that I am probably addicted to Sinemet, and I have come to believe, that this is how my body reacts to it..As a matter of fact, last night, I didnt get to sleep untill about 4:00 am, and I could still move as good as I could at midnight

I believe that my body is dependent on meds at a certain time each day, and when I deviate from that regimen, I have bad off periods..Now that I have stuck to the same regimen for a few months, my pd has been alot more predictable

But then again, we are all different, so who knows?..What works for one, may, or may not, works for another, but this has been my experience

Thank You Lindy!!..I have come to the same conclusion

Steve,

I recently read a post on a UK forum, where a writer from the US talked of varying to time of day you START taking your medication, not the intervals between, to fool the brain into not becoming so dependent on getting it's dose at exactly the right time. I will try and find it and post again. I do this naturally as my sleep is so inconsistent, I am not in work, and can do what I want with my days.

You say you are on stalevo, and I know that this has been great for some people. I was offered this and declined because my optimal dose of levodopa falls in between most tablet sizes. This could be a reason why some people do not do well on this medication, it simply is not as customizable to the individual.

Glad you are more stable now....

Lindy

Maybe we do adjust to expecting meds by the clock. If so, a clock set by when we waken is going to differ from one set by light (sunrise). Light therapy might help,