I’ve been on sinemet for 14 years and my average dose has been 1, sometimes 1 1/2 pills every 3 to 4 hours. I’m on no other medication, just the sinemet. I do use other things though like supplements and cbc and I stick to a strict diet and exercise plan, all geared towards the Parkinson’s and so far, so good. But this year I’ve run into gait freezing episodes and some balance issues and I’ve had some close call falls. Also, new for the past few months I’ve been getting some crazy dyskinesias which is the basis for my question. Now when I take the sinemet, within 30 minutes it begins. They calm down after a bit and because I know that too much levadopa can trigger the dyskinesia I experimented with it taking only 1/2 a pill so see if that helped but it was the same as when I took a whole pill. In doing this reduction experiment I’m finding that less sinemet works just fine for me, as good as a whole pill and I was wondering if anyone else has experienced this weird behavior of the sinemet. I am seeing my doctor next month and I will run this by her as well. Thanks
Sinemet? Too much or not enough? - Cure Parkinson's
Sinemet? Too much or not enough?
When I got dyskinesia - which I got only 1.5 years into meds - it didn't matter what I took 25mg, 150mg it was all the same.
The same thing happened to me. My neuro put me on Amantadine which helped with the dyskinesia. You might inquire with your doc as to changing to Rytary which is an extended form of Carbidopa/levodopa. Good luck ❤️
Amantadine was a nightmare drug for me. I no longer have dyskinesia issues after brain surgery so am good! I am lucky!
what side effects did you have with Amantadine?
100% insomnia and mania
Mimi I'm trying to minimise my intake. I think neurologists seem to have a set levodopa plan from the start which steps up sinemet in set increments.
They started me on one twice a day. A year later they advocated two twice a day.
If I'm not doing much , or just walking I take none. If I'm doing tai chi it might be 1, if a long strenuous activity I might take 1.5.
I guess each person is different and neuros don't have the time for specialised personalised treatments. So you get broadstroke. I'm no medic and your Neuro may have a different view.
Hi Mimi,
My husband is 61 yrs, since 2006, started on 1 pill and over the years is now on 1 x 25/100 and 2.5 x 50/200 - 4 times per day. He has been steady for many years on this higher dose, but he is not nearly as high as some people take. I am not sure what age you are, or if you are Young Onset, but his higher dose may be tolerated because of length of time and age, but I'm not sure. He is on a diet of anything he wants to eat, food does not affect his meds luckily and he is a strong exerciser especially bicycle riding and some gym work.
On Dyskinesia - it's bit of an inigma we find - dyskinesias happening with being "ON" and "OFF". He does find 1/2 a pill can set off some mild dyskinesia if he adds a rescue dose after or before exercising, but overall his dyskinesia are kept in check. He added Comtan (Encapatone) to his regime few years back which helped in extending the Sinemet without taking extra pills... that has worked very well for him.
On Gait - he ran into gait issues quite some time ago, with the odd falls, festering tiny feet movements when stopped to get going again, but the falls started massively in 2021 - up to 20 per day, but this has calmed down since he has been undergoing falls prevention techniques with some Jiu Jitsu specialists, for safety and to try and stop them. All comes down to postural instability for him and he is very tall, which does not help. So we're down to far less falls each day now which is great. Lets hope it lasts.
In the end for your falls, this may help you, we have found it's ABSOLUTELY ESSENTIAL whether sitting to get up or standing to move forward to have your feet stabilised apart before even starting to try and move. The intent in your mind to one foot forward becomes key to engaging a fluid movement forward. Its the hope that this becomes a habit over time so its automatic, but even after 2 months of this training, it's very difficult for him form a habit to do this, but at least there is some improvement. All the best.
Personally, I don't agree that ALL Neuro's give broadstroke care. You just need the right Neuro. Ours certainly does give as much care as possible. Maybe we are just lucky. The whole thing with PD is the Neuro's want you to stay in an "ON" state as much as possible in the day, so that you have a good quality of life. It's actually very difficult to do that, because you don't want to add more meds, but you want enough to stay "ON". Because being "Off" could mean more falls, less clarity, less quality of life.... again just my opinion in what we find. Every day is basically a balancing act....
HI MIMI. I HAVE READ MANY TIMES THAT CO CARELDOPA (SINEMET) CAN CAUSE DISKONESIA. I WOULD LOOK AT CUTTING BACK ON THE SINEMET OR TRY AN MOA-1 INHIBITOR INSTEAD. CONSULT WITH YOUR PD SPECIALIST. GOOD LUCK.
Same thing here.... 1 tab C/L 3x a day until last year when my dyskinesia started in my neck and mouth. I'm down to 1/4 - to 1/2, but only as needed. My Neuro prescribed Ropinirole, at .5mg 3x a day just last week. I'm waiting to see what different results will occur.
I heard a lot of things about Ropinirole, some good and some bad.
Time to dance with the devil I guess... Good luck on your journey!
following
Ropinerole made me feel uneasy and I felt the negative outweighed any gains I may have realized. For me, I felt more comfortable staying on my plan of reduced C/L intake. For the record, I didn't give Ropinerole more than 1 week before I stopped.
Hi Kevin,Any update on your taking Ropinirole?
Can we go back to Ropinirole after coming from Sinemet?
Hello KevinBurns ~ I was wondering if you would share your protocol for reducing your C/L. Also, has the Ropinirole helped with the dyskinesia?
Thank you for your time and have a fabulous day!
Hi Lizzy9,
As I stated in my last post, I no longer take Ropinirole. My DR has me on Amantadine which seems to be working well. As for the C/L protocol, I take 1/2 (25-100) a tablet only when needed, which is typically 3 times a day. It's a very personal regime and not always successful, but my body knows best. I also take 1000mg of B1 daily, which seems to help significantly. I have no set schedule, and for now, that works for me. 
Good luck on your journey!
Thank you!
I am hoping to switch my HwP from C/L, which has NEVER given him any kind of relief to a natural form of dopamine. He stopped his mid day dose a week ago. I think we’ll keep him at that dose 1-2x daily for a bit. I am kind of waiting to see what his naturopathic doctor says.
We tried B1. It seemed to help for a bit after MUCH trial and error, but then seemed to not help. He still is on a VERY low dose of 25 mg 4x weekly just in case he is getting some benefit. He’s also on a ton of other things as well as doing a lot of things!
Have a fabulous day!
Having similar response. I take 1 Ir (25-100) c/l- 6am,10am,2pm,6pm. 1/2 hr to 45min after I take a dose - hand tremor intensifies, leg spasms, then subsides. No consistency with occasional tremors and leg spasms except stressful situations and constipation. Weather triggers symptoms. I've heard horror stories about amantadine so I don't want to go there. It's annoying but if that is all I have to put up with I guess I can deal with it. Interested in other responses .I take a lot of supplements. Don't have a problem during the night but don't sleep for more than 11/2 hrs at a time.I take magnesium b4 I go to bed and sometimes take a pill if it is a bad day.
I take 2. Need 2 for symptom control.
Yes I too have had this same experience. My dyskinesia comes on in the evening. I was taking 1 senimet every 2 to 2.5 hours last senimet at 4pm. Recently experimented taking my last senimet at 2pm but as a half instead of a full. So far this seems to be helping. I get s little bit of dyskinesia but manageable. By 6 to 7pm at night I often have no tremor or dyskinesia!! Had PD for 7 years been taking senimet 4 years. I have also found B1 & L-theanine very helpful
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