Has anyone experienced an overnight increase of dyskinesia with c/l? Was taking one half pill of 25/100 every 90 minutes through the day and no significant food until dinner. PD symptoms well controlled all day. Was getting dyskinesia only with first and last dose. Then in one day, dyskinesia all day.
Would be very grateful for any words of wisdom.
Consuming sugar, caffeine, or chocolate sometimes trigger dyskinesia for me. Sometimes even watching a tense mystery will too. Hope you find out what causes it.Might want to check out”stacking” too.
Good luck to you.
Thank you CKingPs. I’m not familiar with stacking. Best to you.
My father had an episode on which he had severe dyskinesia all day and doctors thought it was due to fecal loading and constipation. Therefore to much medication build up.
Hi Silvia25,
My sympathies to your dad. That had to be a bad day. Pwp surely do have longer passage time. Take care.
Hi Silvia25,
I meant to ask you if your father’s doctor had any suggestions for him if the problem was from digestion. I very much hope things are going better for him now. Take care.
How long have you been on this dose? Every 90 minutes at this dose seems quite frequent. Have you tried spacing it out a bit further in case you are overdosing?
At 90 minutes the next dose is overlaying the previous tail by quite a bit pushing each peak progressively higher. See my sketch for 3 hour dosing.
Hello LAJ12345,Doc suggested dissolving pills in water to take a small amount very frequently but this is hard to maintain. The reason for not eating was that it brought on the dyskinesia. But looking at your chart, maybe gastric emptying is causing small overdoses. I think you are right about spreading doses out. Thank you and take care.
A sudden onset can be precipitated by excitement or intensity or pleasure that stimulates your INTRINSIC LEVEL OF DOPAMINE
Thank you Tribselyov. Feels like a balancing act. Take care.
It's strange but my dyskinesia gets worse when I'm talking to other people, I'm in a restaurant eating, and when I'm stressed, even a little bit of stress bothers me. laglag 🥊
Did you get more levodopa from what you ate? Fava/hava beans have c/l. Lima beans have levodopa. You're taking enough carbidopa that all you would need is the levodopa,
Thank you pvw2. Didn’t have those beans but maybe something else had extra levodopa. Thank you.
I have a friend getting 25/100 every 2 hours. You would think 25/100 every 90 min. would be less likely to get dyskinesia than the much higher doses pwp are taking 3x a day. However, that frequent of carbidopa dosing probably means any levodopa in food is also absorbed. However, the combination of a dopamine agonists, activates dopamine receptors and helps in managing the disease, Bromocriptine . Pergolide . Pramipexole . Ropinirole, might also encourage dyskinesia.
I deal with dystonia and dyskinesia so I started adding mucuna a year ago And cut down to a quarter tablet which helped
Thank you estubbs79. If you don’t mind me asking, how many years in are you? I am 4.5 years post dx and the dyskinesia has really only been getting bad the last 6 months. Take care.
Hi maple. We’re on a similar timeline. I have also started with dyskinesia. Mine is often in the evening which bears witness to the stacking theory. It’s so frustrating. I keep thinking well it’s burning calories LOL. I always thought it would be interesting to try C/L at lower dosages but more frequent intervals. But my doctor didn’t agree with me. And now I’m on Rytary, which is an extended release.I agree that stress makes it worse and activity in the sense of like running around trying to get something finished which is stressful, that’ll start it up also. It’s a bummer.
Hi Godiv,
There do seem to be many theories on dosing schedules. Does the Rytary help? My doc suggested amantadine but I’m a little nervous about adding in a new med.
Maybe that 126 million gift from the google founder to MJF will fund some breakthroughs!
Hey! Well I’m not sure LOL. I like the Rytary over the CL because it’s really easy to take. I can take it on an empty stomach. Other than adjustment nausea when I first started taking it, I don’t have any problems with it now. And I used to get very nauseated by Sinemet.But sometimes it just feels like it doesn’t work. I don’t know if it’s disease progression or what. But I know other people have said that, but also other people absolutely love it.
I know what you mean about taking additional medications. I don’t like it either. And it feels like there’s a balance and you’re going to upset it. But that’s not necessarily true because you may find an add-on that really helps.
I took Gocovri which is Amandatine.
Different release type I think. I liked it. However I had problems with swollen ankles so I had to stop. But I didn’t want to. 
Yes let’s hope for a big bucksl leading to big breakthroughs!
I’ve heard that the extended release can sometimes not seem to kick in. Then would you be able to use a little IR to tide you over? I had nausea too at the very beginning with sinemet but luckily it passed.Sometimes good sleep ( ha ha) or getting good excercise predicts a good next day. You inspired me to give the amantadine a try. Fingers crossed.
Have a weekend!
Oh darn Maple. I’m so sorry. I did respond but apparently didn’t hit the reply button. I’ll try again later. Thanks so much and sorry about that.
No worries! Hope things are good with you.
Thank you so much. I do that with messaging too. I’ll compose the message and then my brain will say finished! And then I wonder why I don’t get a response ha ha.
Anyway, thank you for your patience. I do have Sinemet also, but my doctors also seem to like me to combine it with rytary. But it’s very difficult because stuck somewhere with dystonia, meaning At least one foot is painfully curled up or I guess I should say under.
My legs get involved with us to and they feel very tight like they’re pulling. Anyway, Sinemet does help. I am going to probably go back to inbrija. We’ll see if that is a safer alternative that actually works.
I hope the Amandatine trial goes well. If that doesn’t work, Gocovri is an ER version. So that might be an option .
Depending what you have and where you are, it can get a little tricky with insurance. Mine did pay it but they sort of dragged their feet first. But I really liked it . Unfortunately I had swelling issues in one foot and ankle. I kept asking if I could keep it despite that ha ha. Because I really liked it. But that was a no go. Anyway let me know how it goes.
And have a good weekend! And I’m going to actually hit reply!🤣
Hi Godiv,
Hope things have been good with you. I was thinking about what you said about feeling as though your legs were pulling. I get a tight, pulling feeling like I want to go up on tip toes. Don’t know if this is similar to what you feel. I have an excercise video called PD Warrior which sometimes helps. It is from an Australian group and is about 30 excercises that target parky issues. Some of them feel like it’s the last way you want to move but if you push through, it really helps. Stay positive friend.
Hey! I’m sorry to hear that. Ugh. I have the pulling sensation in my legs, but my feet are going the other way and turning under. It’s really uncomfortable. It’s dystonia for sure. That’s really good that you’re taking care of whatever it is you’re having early. Just to be safe! And maybe it’s just different versions. Everybody seems to react in different ways. I joined Parkinson’s wellness and recovery for their virtual classes. I’ll have to see if I can find anything online from PD warriors. Thank you so much.!
Are you taking magnesium? You probably are. Mine has gotten very uncomfortable and last night I was longing for Xanax. Which I know it’s not good at all. Just something to relax the muscles. But my doctors don’t seem interested in prescribing anything like that. It’s too bad there’s not some thing more benign out there. And they have better judgment than I do of course.
Did you start the amantadine? If you did, how’s it going? It’s probably too early to really tell.
Thank you so much. It was lovely of you to think of me and you hang in there too! I am wishing all good things for you :-).
Hi Maple-st-tig - I see that you posted the above a year ago and may not even be checking this site anymore but please reply if you do. I have the exact same issue that you had last year- me legs freeze and I have this tight pulling feeling and have to get on my tippy toes for relief. It's driving me crazy and it comes and goes and it's so hard to walk when it comes.
Hi GVee,
So sorry to hear you are going through that. It is really unpleasant. One thing that helps me is to have on very sturdy, structured shoes. Not sure why but it does give some relief. I get the biphasic diskynesia so it’s worse when the sinemet is kicking in in the morning and wearing off at night which is when the leg pulling happens. Standing up with a chair or other furniture to hold onto also helps. I recently got diagnosed with very low sodium(drinking too much water to wash down the sinemet) and I noticed it was worse then. Better now that the sodium level is corrected. I hope you find something that makes it stop. Hang in there.
Thank you so very much for your response!
I talked to my doctor about rytary and he discouraged me from taking it. Why would he do that? I asked if the extended release would be better to take at night. He said I shouldn't take any Carbidopa levodopa at night. So my last dose is at 6:30 I'm a little nervous about not being able to sleep cuz I'm used to taking the CL every night before I go to bed. He changed me the one the CL every 4 hours four times a day. any thoughts? I used to take c/l (25-100) every 6hrs hrs. Now c/l 6-10-2-6.My next dose is the next morning at 6.He told me that rytary had serious side effects. Other people love it.Thanks
Hi Smitty. I’m going to message you in a bit I’m. I’m not quite sensible enough to go public at the moment.
Seven years now
That happened to me too yesterday. Coincidentally, I am following the same pill regimen.
Hi jrg54321,It is so frustrating. I guess we need to look at other stressors or activities that could be at play. Take care.
You too!
High dose c/l caused worsening of symptoms for HwP...he also had an "extreme odor" and we realized it was from these meds...he has since decreased and will stop taking the Sinemet.
Hello fel3k,Sinemet went from being my best friend to a fair weather friend overnight. I’m trying a “tolerance “ break as the young people call it and cutting way back on the dose for a day or two.
Good luck to your husband. I hope you find a good alternative for the sinemet. Both of you take care.
How high was the dose?Thanks
Does your father take any supplements? My dyskinesia was intensified when I am taking vitamin B
Thank you Helfrase50. Will reach out to Parkinsons.org.
Hi! This is my husband's experience....the new neuro changed his antidepressant and over night he developed severe dyskinesia but not on an everyday basis. He has occasional dyskinesia when tired. I put him back on the previous depressant and it kind of went away, but took a long time. Apparently the new antidepressant is a very safe one, but my husband reacted to it. So it could medicine interaction.
More recently he had some psychotic episodes. I had read about 'stacking'. Plus, he is on several other meds for other conditions. Between his neuro and self we started detoxing him and his behavior is much better.
He sleeps a lot though.
Hope this helps.
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