I was diagnosed with PD 2 and a half years ago and since May 2021 have been taking (l-Dopa) sinemet plus 125mg tds (0800, 1300, 1800).
Since Jan/Feb this year I have been experiencing involuntary pursing of my lips, sucking and chewing movements in my cheeks and my tongue pressing against my lower front teeth.
has anyone ever heard of (facial/oro) dyskinesia being induced by only 6 months use of L-Dopa and from such a relatively low dose?
It is very bothersome to me and I am not due to see my movement disorder nurse specialist until May 30 which right now seems like a long way away.
many thanks in advance for reading this.
Written by
Tomkins
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There is 14 hours between your evening dose and your morning dose - by that time levodopa should be out of your system. If your dyskinesia symptoms have subsided at that point and then resume after taking your morning dose that would be pretty good evidence you have levodopa induced dyskinesia.
How would you suggest cutting back the dosage? I take 1 c/l 25-100 mg every 8hrs. Cut the pill in half and take every 4hrs? Or switching the current dosage to er or cr?I don't want the dyskinesia to increase if the c/l is to high. Thanks for your help.
I have some of the same issues and shoulder shrugs. I started c/l in October as the dosage increased I started to have involuntary movements as you described. I think it's too much c/l. The movement specialist wants to add amantadine. The side effects are scary. The other suggestion was to change the dosage from 1 c/l (25-100) every 8hrs to 1/2 pill every 4hrs. I have not tried it yet. About 21/2 hours after I take a pill is when the involuntary movements began. Sometimes alot and sometimes a little. Stress also exacerbates the movements. Then about 11/2 iihours later it stops. Then not again until 21/ 2hrs after the next dose . I will post if I get some help and please do the same. I think I need a lower dose of Carbidopa levodopa. It seems to me a neurologist just want my to give more medications. I'm not sure that's the answer I also find exercise helps. In addition to the involuntary movements sometimes my Tremors increase. I'm afraid to mess with the dosage of the medication. I hope this helps . good luck and God bless you!
Tardive dyskinesia is common whenever dopamine medication or dopamine related diseases, and I do mean parkinson's, are involved. It didn't used to have much solution but these days they do. However, you're going in general to get better understanding of these issues by talking to a psychiatrist, not a neurologist. They have a number of solutions to these days including some of those already suggested here by Park beer, but there are also medications that counter the target dyskinesia. Again, the better experience with using medications to counter tardive dyskinesia are going to be a psychiatrist, not neurologists. It just happens to be something I have observed over 40 years of practice as a psychologist specializing in mental diseases and related medical and medicine treatments (psychiatry). It just comes with the territory I'm afraid. In most countries by the way, board certifications of specialists combined psychiatry and neurology. They really both have similar Spectra of expertise and medical concern, but I think because they're constantly involved in neuroleptics as a large part of their practice, psychiatrists do have better experience in modifying and adjusting or titrating symptoms to balance with those medications and treatments you take for parkinson's. Again they all have to do with dopamine. But as I read the responses here, I think you have good experience from people whose adjustments are worth considering definitely.
I don’t have PD but hubby has had it for 10 years. He has kept his C L low and only takes it at night. He adds Resiguline in the afternoon. I don’t keep track very well but for several months he has had balance problems where he’ll walk backwards when getting into or out of a chair. Tonight he was carrying a plate of food, walked backward and fell. Is that Dyskenises? His tremors get a little worse but not real bad in the pm and only in his hands, mostly left side. We have friends who have movement all the time so he’s lucky I guess but this falling worries me, especially when I’m gone. We’re 79 and 78. We’re in the U.S. His gp retired and he hasn’t gone to the new one nor to his neurologist lately.. I know we should walk more but just haven’t. I have Fibro and diabetes. Oldest son gave us watches that track steps. Hard to even shop. The girls help when they can. Thanks for listening. M.A.
Thanks for your help. If I understand you correctly you're suggesting a psychiatrist is better a prescribing medication than the neurologist for Parkinson's?
Well for sure when it involves tardive dyskinesia. That is, for those micro muscle movements that appear when using those medications that affect dopamine. But you also want to be frank with your neurologist, asking them to be honest with you if they don't really know enough about all the medications or adjusting and ask them whether they think they might know if somebody who might know a little better, including psychiatrist. Psychiatrists are nearly constantly involved and the use of antipsychotics and "neuroleptics" because they're used so often involves these little micro muscle movements in fingers mouth eyes etc. When it comes to the larger trimmers and other dyskinesias then neurologist probably are as good and sometimes even better as long as they maintain quick availability to their patients for ongoing consultations and adjusting, and for PD itself. What I'm saying is psychiatrists are another source of experience with medications used that affect dopamine. At least that has been my experience. Someone else may disagree entirely.
My husband had experience recently here in Australia with Neuropsychiatry. His neurologist put him into hospital with what was later described as delirium, caused we think by an OAB medication. The neurologist and psychiatrist worked together and managed to pull him out of it. A bit different to Tonkins problems though.
Yes I also have gotten dyskinesia after a couple years using levodopa/carbidopa I don’t have it at night or first thing in the morning before I take meds. I tried taking smaller doses more often but that made it worse. What has helped me the most is replacing most of my levodopa carbidopa with Dopaboost and mucuna powder. There’s lots of information for that on this forum.
How do you know how much dopaboost to use? In place of c/l. Who helps you adjust the dosage? How much c/l were you taking, how long did you take it ,what were your symptoms? I was taking dopa plus but it said not to take with Parkinson's medication.
Someone else figured it out for me. Two capsules of dopaboost is equal to normal dosage of levodopa see below
CaseyInsights
1 year ago
“It was yours truly that made the comment.
Do not mix up dosage and the amount per
capsule. The dosage is two capsules.
So here is the math
Mucuna Extract ( per dose - 2 capsules) 425
mg
L-Dopa concentration = 60% = 255 mg as MBA
pointed out
L-Dopa concentration Per capsule = 225/2 =
114 mg
So it does match the amount of LDopa in a
Sinemet 25/100 combo”.
I gradually replaced 2 of my levodopa/carbidopa dosages with two capsules each dose. I do have a little bit more of a tremor than I did while on full time medication but I’d rather have that than that horrible dyskinesia! So now I take a half tablet of levodopa carbidopa first thing in the morning with 1 1/2 teaspoons bio pure whole bean mucuna powder (I can’t handle the extract it made me throw up) . 11 o’clock I take 2 Dopaboost. 230 I take a half tablet so far I haven’t added any more mucuna to this dose but might later on. 445 I take two dopaboost. I can’t take anything in the evening because it affects my sleep. This is all trial and error and learned from others on this forum. Btw I asked my neurologist if I could start taking more mucuna and he just said yes as if he wasn’t surprised. Because dopaboost has B6 etc. in it, I take it at separate times than my l/c pills so it won’t interfere.
Thanks I'll have to find someone to figure out the dosage for me. Where do you get your Dopa boost?I'd like to compare it to the ingredients in my Dopa plus from pure Encapsulation.
Thanks to everyone who has shared their experience. I’m keen to try some adjustments but will wait to see movement disorders team. It is great we have each other to share expertise. It’s great to know I am not alone.
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