Oral mandibular dystonia?

[Kt088]

I have been experiencing this lately and it is only “active “ when my sinemet kicks in in and for a short period of time after. Very frustrating, it makes my speech difficult to understand and speaking is hard. I don’t want to do Botox, which seems to be one of the treatments to be considered. Anyone else experience this annoying side affects of sinemet?

[park_bear]

It would appear your taking the immediate release form of Sinemet. Sinemet IR - immediate release - is usually prescribed by default. It is not a very good choice unless you are doing very frequent dosing, because the plasma value declines to the one quarter of the peak after 4 hours. The high peak value is prone to causing dyskinesia. Sinemet CR, carbidopa levodopa ER or Rytary are much better choices for many patients because the blood plasma level is much more even over time.

[Kt088 in reply to park_bear]

I am taking the IR form of Sinemet as I have for the past 11 years one pill three times a day has worked fine and I have no dyskinesia to speak of just this new manifestation of dystonia in my jaw but I only when I take my medication. Do you really think a change in medication will work, I am very apprehensive about taking a new medication because I am so sensitive to them thanks

[park_bear in reply to Kt088]

When I get a bit too much levodopa I experience a kind of dystonia in my affected leg. The timing here is strong evidence that your dystonia is being caused by a high peak plasma level of levodopa.

Given your length of time on this regimen you are right to be concerned about making changes. I would make any changes slowly - try initiating a change with a half dose of your current medication, and add a similar dosage of time-released levodopa medication, at one of your three times daily doses.

[Parkie-]

I have the same problem and switching from ir to cr only made the jaw dystonia (and all the other levodopa induced problems) last longer.

[Kt088 in reply to Parkie-]

Thanks for that tip. It last long enough now I can imagine it lasting longer. Maybe I’ll just stick to my regular regimen.

[park_bear in reply to Parkie-]

Did you try reducing your dosage?

[Parkie- in reply to park_bear]

Hi Bear,

Sure did. Went from 700 mg to 600 mg IR a day. Dystonia and all of the other c/l side effects were relieved but came back about a month later.

Lowered again, came back again about one month later, and so on.

Now at 300 mg CR a day, very undermedicamented, lost alot of autonomy and yes, the side effects are back. Waiting for FUS at Sonimodul in Feb.

[park_bear in reply to Parkie-]

Since you are sticking with the CR version, that would imply you believe the side effects are due to progression rather than the CR. Otherwise you would have switched back to IR, yes?

[Bailey_Texas]

yes it is the first sign my meds are waring off not when i am on

[Kdsea]

Sounds to me as if you are having too much and that is the cause of the symptom. Too much medication causes symptoms to increase! Tricky stuff to get right. Especially if your sensitive to medications...like me

[annabellee123]

YES i SOMETIMES EXPERIENCE ORAL MANDIBULAR DYSTONIA WHEN TAKING GENERIC CARBIDOPA/LEVODOPA.

[annegommel]

I find the oral mandibular dystonia the most disturbing sympto(

[annegommel]

i have had a lot of trouble with oral mandibular dystonia. I had DBS surgery in 2010 which eliminated a severe tremor on my left side. I had blepharospasm (dystonia in the eye) for a few years. I tried botox but it depended on who administered it . One neurologist did a lousy job and my eye was worse for six months. The blepharospasm seems to have gone away. I dont bother with botox anymore. The dystonia in my mouth is much worse. I went to Gainesville FL for a consultation with Dr. Michael Okun, a DBS and dystonia expert. He gave me some alternate programming for my DBS but nothing has helped so far. I was sleep deprived for years. I am sleeping much better now and my condition has improved significantly. I hope if I continue to get enough sleep the mouth condition will improve.