I know i sound like a broken record :)

[RS313]

I really could use everyones advice here. I know i have written a few times about my meds and dyskenesia but i am still having problems and my Movement dis specialist said for me to just play around with my meds to find what works.This may sound easy but for me n=being fairly new still to the parkinsons it is a real struggle! I take 25/100 C/L CR i take it at 6am am/11am am/330-4pm. It is really strange but i feel the best in the morning when i wake up before i take any meds I am a bit stiff but no dyskenesia at all. Within an hour or so after i take my med here comes the jerking of my right arm and twisting foot. My question to everyone is what would be some suggestions on how and when to take my meds that may eleviate the dyskenesia? Like different times? different amounts of times between doses?

larger or smaller doses? i also want to add that i cant take IR at all even in the smallest doses due to the pain i suffer from the dyskenesia it is very painful if i take the IR. any ideas???

[MBAnderson]

You didn't say when you are diagnosed, i.e., how long have you been taking Sinemet? It seems your choice is to either reduce your dose of Sinemet or add a drug like amantadine to deal with the dyskinesia. Were it me, I'd start on Mucuna Pruriens and after I felt I understood how it was working, I would try to slowly phase down Sinemet. Increasing the dose of Sinemet is likely to increase the dyskinesia, so I don't see why that's an option.

[RS313 in reply to MBAnderson]

1 year ago and if i reduce it then my symptoms come back IE rigidity pain gait slowness ect

[JANVAN in reply to MBAnderson]

That's my same experience >>> after taking Sinemet (IR) I really don't feel immediate effect..........now I 'm taking Mucuna >>>>> not so brain fog, clearer thinking and better movements. Notice : I haven't stopped my Sinemet, only reduced with one 100/25 Tablet.

IN Europe it is now 00.39, still not in Bed, why today I've forgotten my bag on the train, do some trainstations to check if someone has delivered him there. So, a lot of walking, stress, and no medication from 8.00 till about16.00...........

"realistisizing" day : I need the Sinemet and the Mucuna definitely on a regularly (daily) basis...........

(I also take Thiamine HCL)

[Hidden]

4g thiamine HCL day, divided two doses, am and pm

[park_bear]

What happens when you reduce or delay your dosage?

[RS313 in reply to park_bear]

symptoms come back like pain stiffness gait problems and i was only diagnosed 1 year ago so i am wondering why i have dyskenesia so soon?

[park_bear in reply to RS313]

Yes the dyskinesia certainly is cause for wonder. You are not taking that large a dose of C/L. That says to me your brain is not reducing its own production of dopamine to compensate for the extra you are taking. But why you should be different in that regard I have no idea.

I would say it is definitely in order to consider alternative approaches. High-dose thiamine, vitamin B1 that is, seems to be helping me. There are number of other ideas that have some evidence to support them that have been mentioned on this site. An exercise program is a must.

[RS313 in reply to park_bear]

and BTW i feel the best in the AM when i get up and have no meds yet go figure? but i am sure if i didnt take them i would be in trouble after a bit

[JosieDubbel in reply to RS313]

The only thing I can say, is I follow the same pattern: best in the morning. The sinemet also gives me dyskinesia. So I donot want to take too much.

It is very unpredictable when my park or my dyskinesia is bothering me

[Cbgs in reply to RS313]

You feel best in the morning bc your body rests & still does create dopamine

Amantadine has helped me

By the end of the day, after taking c/l all day , the dyskinesia is worse so I started taking one at night...Then added one in the afternoon.

It needs to be taken regularly to stay in ur system

It's not a "take as u need" kind of Med .

I hope this helps

Be well

C!

[Enidah]

When I wake up in the morning I never take a whole sinemet. I always break it in half, so I'm getting half of a 25/100. Then about an hour later I take the other half. I also take amantadine after an hour or so. I'm taking immediate release sinemet so I don't know if this would work for you. I think I play it by ear with my meds a lot more than most people. I certainly feel for you on this issue. Dyskinesia is the pits and is also very painful. I hope you find a solution that helps!

[RS313 in reply to Enidah]

the IR is horrible! i jerk so hard that is is so painful and i cant stand it.thats why i take the CR now but it still happens just not as bad. i wish i could take the IR it works better for the symptoms

[parkie13]

Hi, I really don't know, but a while back somebody mentioned they are taking 10/100 sinemet IR. They said they did better with it, supposedly it was acting differently in their body.

[RS313 in reply to parkie13]

I actually tried 1/2 and it was too much then 1/4 with a whole CR release too much now just on CR and my symptoms arent really controlled and still have some dyskenesia but not near as bad (sigh)

[Juliegrace in reply to RS313]

I'm the one taking 10/100 IR. It is not a fraction of a pill, but a different formulation: 10 carbidopa/100 levodopa. I am doing better on it than I did on 25/100. I still have dyskinesia but it is more manageable and my on time is more predictable. I started dyskinesia after four months on 300 or less mg daily, so it is not unheard of to have it so soon.

[parkie13]

You could also try citicoline. It is supposed to augment sinemet so you can take less. I'm taking citicoline now one pill with my each sinemet, myself had not noticed much of a difference, everybody is different so that's a possibility too. Citicoline is a akin to a B vitamin. Have not had any bad kind of a side effect with it.

[Enidah]

I wonder if a dopamine Agonist would be more effective for you. I can't tolerate them at all, but we're all different.

[RS313 in reply to Enidah]

what is a dopamine agonist Enidah?

[laglag]

Hi Robyn. Read Beckey's reply to the post "Another Newbie". Sounds like she's made improvements in her symptoms by making some changes to her meds.

[Macelott2]

Hi

This may sound unbelievable.

My husband has had pd for 34yrs dx 1984 age 36.

He has this problem,sometimes at night recently,I get him to have a good drink of water,which seems to ease it.

He was bad about an hour ago I gave him water he is now calm and still. May sound to simple but try it.

[RS313 in reply to Macelott2]

wow 34 years? ty for the advice i do drink alot of water daily and a full glass each dose of medication

[daio]

My mother (diagnosed 4 years ago) has replaced half of her Levodopa-based medication with Mucuna Pruriens, and i can definitely see a difference. Taking only medication looks like pressing a button for dyskinesia. Replacing half of Levodopa medication with Mucuna reduces her dyskinesia.

[JANVAN in reply to daio]

Hi, which brand ?? There was a post of somebody about a real study about Mucuna.

Showing more scientifically what a lot of people experienced by trial and error.........