Involuntary movements

[Smittybear7]

I noticed some involuntary movements after c/l was increased by a half pill in the morning. I spoke with my neurologist and I cut that 1/2 pill. I am still experiencing some lip tremors and tightening of my shoulder almost like a shoulder shrug. At the same time my stomach muscles contract. Not sure what's going on. Could it be too much c/l? How long would it. take for that to go away

? Is there a medication for that? I started on c/l October 15 and increased to 11/2 am 1 afternoon I before bed. The extra 1/2 pill was cut 2 weeks ago. (25-100) .Any advice will be appreciated. Thanks

[park_bear]

Dyskinesia due to high peak plasma levels of levodopa. See here for the difference between immediate release and controlled-release:

healthunlocked.com/cure-par...

[Smittybear7 in reply to park_bear]

Is there any other cause of dyskinesia. Could it be as simple as cutting the dose of the Carbidopa levodopa?

[park_bear in reply to Smittybear7]

Excess levodopa is the only cause I know of. So cutting the dosage should solve the problem.

Also, doctors often prescribe the immediate release version of C/L by default without informing the patient timed release versions are available. If cutting your dosage leaves you undermedicated you can switch to a time release version which has more even plasma levels over time. That would be Sinemet CR or carbidopa levodopa ER, or the more expensive Rytary.

[humph3 in reply to park_bear]

I have never taken levodopa and have involuntary jerks. I can control it to some degree by altering my B1 dosage

[JohnPepper in reply to humph3]

Involuntary movement is also a symptom of Pd.

[Smittybear7 in reply to JohnPepper]

How is it treated?

[JohnPepper in reply to Smittybear7]

I a,m able to concentrate hard on keeping my hand still, mwhen writing. It is very slow but it gets there. When I got a lot fitter as a younger person, th etremors were very minor but you are not talking about tremor you are talking about dyskinesia, which is the resiukt of taking too much leveodopa. THe only way to get out of that is to reduce your levodopa meds, but then you cann't function. That is a catch 22 situation

[Smittybear7 in reply to humph3]

How much do you want are you on? How are you adjusting the dosage? Thanks for your help

[Smittybear7 in reply to park_bear]

Thank you I'll discuss it with my neurologist on Monday.

[Juliegrace]

I have dyskinesia pretty much all the time when I am taking my c/l during the day, with it being worse when I am wearing off, which happens accidentally when I don’t take a dose on time or at the end of the day when I purposely go off because I don’t take meds at night. Dyskinesia is not only due to too much levodopa, but that is the most common cause. I don’t have dyskinesia once I have gone through the wearing off period, but that is just my experience.

[Smittybear7 in reply to Juliegrace]

Thanks I will have to see if there is a pattern as to when it occurs. My husband and my daughter have seen the shrugging of my shoulder and twisted and twitching of my lips.

[JohnPepper in reply to Juliegrace]

I have no experience of dyskinesia due to too much levodopa. If I were on levodopa and got dyskinesia I would try to get away from levodopa medication, but that is just my thinking!

[Smittybear7 in reply to JohnPepper]

Thank you. I wish I wasn't on any medication Purge

[RBan in reply to Juliegrace]

This is exactly me. I’ve tried cutting back my C/L dose but it’s still a work in progress

[Smittybear7 in reply to RBan]

How long have you had the problem? How long should you wait to see results? Thanks for your help

[RBan in reply to Smittybear7]

Started levodopa carbidopa in 2017. Had a honeymoon period. Dyskinesia has been a problem for the last two years. So I’m trying to reduce my levodopa carbidopa and replace some of my dosages with Dopaboost. By pure formula. The dyskinesia is definitely improved but is not a hundred percent

[Smittybear7 in reply to RBan]

What's in the dopa boost? Do you take it with your other medication? Thank you for your help

[RBan in reply to Smittybear7]

pureformulas.com/dopaboost-... contains Tyrosine, mucuna, green tea extract, others smarter than me figured it out that the dosage (2 capsules) is the exact replacement of a levodopa carbidopa dosage of 125 mg/25 mg. What I am taking is one capsule with a half tablet of levodopa carbidopa.

[Smittybear7 in reply to RBan]

I used 2 take a product called dopa Plus by pure encapsulations. I'm having a difficult time finding somebody to tell me the right dosage of that to replace one pill of Carbidopa levodopa. Who helped you figure out what dosage is equal to Carbidopa levodopa? Thanks for your help

[RBan in reply to Smittybear7]

healthunlocked.com/cure-par...

[kevowpd]

Myoclonus does occur in PD. Mentioned in literature though not an awful lot as it's not the most troubling of symptoms and perhaps not super common. It definitely occurred for me pre PD meds, but not consistently or very often.

Very difficult to comment on whether it's that or LID though if the pattern is that the involuntary movements only occur whilst medicated then that would steer towards LID. If it's predicable or of sufficient duration, take a video and either post it here, excluding your face, or show your neurologist.

[Smittybear7 in reply to kevowpd]

What are myoclonus and lid? Thanks so much for your help

[kevowpd in reply to Smittybear7]

Lid is Levodopa-induced Dyskinesia, I.e what park bear is referring to.

Myoclonus refers to sudden, brief involuntary twitching or jerking of a muscle or group of muscles. In other words, it's a separate issue to tremor or dyskinesia. In PD it probably isn't a big source of disability or bother and might not be indicative of meaningful disease progression. Of course if it's coursing you lots of grief, that's different.

[Smittybear7 in reply to kevowpd]

Thanks for the information.

[Smittybear7 in reply to kevowpd]

It's all so embarrassing. I am taking a lot of supplements. I was using B1 but stopped because I was having jittering and wasn't sure whether it was the B1 or the carbidopa-levodopa. Not sure how to reintroduce B1 since they're still adjusting the carbidopa-levodopa and Baclofen thanks again for your information

[RBan in reply to Smittybear7]

Sounds like you’re just like me! Dyskinesia as well as not responding well to B1 at all. I got really jittery and my heart was throbbing.

[Smittybear7 in reply to kevowpd]

Hopping to find a way to stop it.

[rescuema]

Be sure to rule out mineral and vitamin deficiencies, especially if you've been trying HDT.

healthline.com/nutrition/po...

livestrong.com/article/5118...

[Smittybear7 in reply to rescuema]

Does HDT deplete minerals? Thanks for your help.

[rescuema in reply to Smittybear7]

Yes it can.

youtube.com/watch?v=-DxvSUE...(Not working as expected?)

[Smittybear7 in reply to rescuema]

How do you know what to do? This is so frustrating. I hate to take medication. The c/l has helped with muscle rigidity. When it was increased the involuntary movements began. Any suggestions how to figure it out? I haven't started back on the b1 even though my nutritionist said I needed 500mg twice a day. And do to help blood work done Monday or Tuesday which will include B1 levels. Is a blood work reliable? Thanks so much for your help

[rescuema in reply to Smittybear7]

Blood work is not reliable but if you're on a lower range then you may want to try supplementing magnesium and/or potassium citrate/chloride and see if it helps. Next is to try hair mineral analysis or see a naturopath. I find HMA very useful and get it done periodically.

evenbetternow.com/proddetai...

[Despe in reply to rescuema]

Good to "see" you!

[rescuema in reply to Despe]

Ditto Tina!

[MarionP]

You need to look into this immediately. Dyskinesias and tardive dyskinesia has a nasty habit of becoming permanent if left too long. It's really a very serious thing and you have very little time to play around with it. You really do not have time to play around with amateur or casual suggestions, that will be for later. Right now the appropriate posture is as an emergency.

[Smittybear7 in reply to MarionP]

Thanks I see a neurologist on Monday. I will ask. I think mine may be related did too much Carbidopa levodopa. I notice it pretty soon after an extra half pill have been added. We cut back that half fill I'm just not sure how long I should wait for results. Thanks for your information

[Jebbie12]

Amantadine can help

[Smittybear7 in reply to Jebbie12]

Do you take that? Are you on any other medication? Any side effects?

[Smittybear7 in reply to Smittybear7]

Thanks for your help

[Jebbie12 in reply to Smittybear7]

I take 2 amantadine a day and it helps a little. I’m 13 years into this disease. Still doing very well! I exercise nearly every day, in addition to walking a mile. My daily medicine includes 4 25/100 c/l, the 2 amantadine, 1 entacapone, 1. Mirapex and 2 selegiline. It’s working well for me. Oh, and I had DBS 2 years ago. Good outcome from that. Good luck in your journey!

[Smittybear7 in reply to Jebbie12]

Thanks for your help

[Kelrjd]

I'm not on any medication. I eat a half a cup of fava beans every morning with green tea for my dopamine, plus a lot of exercise. I noticed when I do too much, I get the dyskinesia. It happens maybe like once every week and a half

[Smittybear7 in reply to Kelrjd]

Thanks for your help. I have the issues 3 or 4 times a day. I'm hoping that they don't want me to add another drug.

[Kelrjd in reply to Smittybear7]

Hi, sorry it's taking a while to respond back, it was a bad week. I have torn cartilage on my left rib, and frozen shoulder on my right shoulder. Oh the joys of getting older LOL. Hope you got your situation under control 😊

[jeffreyn]

"I noticed some involuntary movements after c/l was increased by a half pill in the morning."

I think there is a good chance that the two are related.

If the involuntary movements are still occurring when you next see the neurologist (tomorrow?), he/she can advise you on what to do.

If it was me, and a neurologist was unavailable, I would try temporarily changing from one pill three times a day, to half a pill six times a day.

Edit: I have modified this reply to correct an error, and to alter my advice regarding what I would do if I was in a similar situation.

[Smittybear7 in reply to jeffreyn]

Thanks that's what the neurologist set might be in Avenue to explore. She also thinks I'm grossly under medicated I disagree thanks for your advice. She also was interested in adding another medication. I believe I can't remember the name but I know it began with the letter a and ended in then i n e. When you cut your pills in half and took it six times a day instead of four did it end your problem?

[jeffreyn in reply to Smittybear7]

If this were a crossword, the answer would probably be "Amantadine"!

I was prescribed Amantadine, but I didn't use the script. Instead, I got rid of the dyskinesia by reducing the c/l dose size and taking a dose more often (i.e. the daily amount of c/l didn't change).

[Smittybear7 in reply to jeffreyn]

Good to know. Hopefully it will work for me .This medication stuff is all knew to me. You are also right about the drug amantadine. I don't want to start another mmedication. Thanks so much for your help. For the few days I have been journaling about the involuntary movements it seems to occur at 4hrs after the am and PM doses.Not sure how it will effect my sleep.

[Smittybear7 in reply to jeffreyn]

Good luck to you!