Dyskinesia question

[1LittleWillow]

Is peak-dose dyskinesia essentially the same as wearing-off dyskinesia? In other words, are they both just a response to fluctuations in dopamine levels, and whether you experience one or the other (or both?) is just by chance, or is the difference in timing related to other factors? I'm sorry if that's a dumb question. It's something I've only experienced a few times with an inadvertent overdose of mucuna. I don't really know much about dyskinesia (yet).

[Bunny622023]

Hi LittleWillow,

No questions are dumb. I would have to answer from our experience with my husband, who takes Sinemet, high doses, that fluctuation of the Dopamine absolutely, in the system. Both peak and off times to us are the same. Side to side head movements only.

His Dyskinesia (which are very well controlled), normally happen when he may have taken a 1/2 dose too much at any time in his dose schedule. Whether at peak dose or wearing off, or totally off. If he goes to the gym or for a run or cycle, he will pre-emptively, sometimes med a bit early, or take an extra 1/2 Sinemet CR 200/50 or Sinemet 100/25. Sometimes - that is too much so he will get dyskinesia (side to side head movement, fairly slow). But he can also be very off, having not caught the dose time on time, OR we were out somewhere and didn't realise the time. So he is totally OFF, and he will be trying to concentrate on talking to eg: a waiter to order something or talking to me intently and the dyskinesia would start up - from WE FEEL, the concentration and attention. This has been going on for many years. He's 61 yrs had PD for 25+ years..... Hopefully that is of some help.

[1LittleWillow in reply to Bunny622023]

Thanks so much for your reply! It helps to hear the experiences of others and compare.

[trishtheteacher in reply to 1LittleWillow]

I had DBS surgery two years ago. That helped with dyskinesia more than anything before DBS. However, I found that controlling my breathing, really helped calm down dyskinesia.,. But to answer your initial question, I never notice any difference in dyskinesia. It’s equally horrible whenever it strikes

[Juliegrace]

My wearing off dyskinesia is much worse than my peak dyskinesia.

[1LittleWillow in reply to Juliegrace]

Thank you for the reply, that's interesting!

[Juliegrace in reply to 1LittleWillow]

It’s only been that way for the past year or so. Prior to that my wearing off dyskinesia was not too bad, relatively speaking, this past year it’s gotten horrible with the onset of dystonia added to make it nearly intolerable at times, whereas my peak dyskinesia is mild in comparison.

[1LittleWillow in reply to Juliegrace]

I'm so sorry to hear that. ☹️I was diagnosed over 5 years ago, and I still regularly think, "I can't believe I have Parkinson's!" It's new challenges all the time.

[Smittybear7]

I’m not sure if what I get is dyskinesia or not. I sometimes get quivering of my lips, sometimes leg spasms or cramps, increased hand tremors within 30 to 45 minutes after taking a dose and or close to the next dose. It usually subsides on its own with in minutes unless I am stressed then it continues. I also am having trouble with constipation. I get bloated and have lots of gas and aches in my right side. That is the biggest trigger. Once that is resolved no problem. It’s uncomfortable but tolerable at this point. I take 1 (25-100) c/l at 6am,10am,2pm,6pm , I’m not ready to go on additional medication at this point because I’m afraid of side effects. most consistent times with the lip quivering, hand tremor, leg cramps,spasms seems to be rt. side discomfort from constipation. What is really weird is that I can go all day without a problem.Then other days that are stressful become an issue. I’ll be interested in other people’s responses.

[1LittleWillow in reply to Smittybear7]

When I have experienced dyskinesia, there has been a distinct difference compared to tremors (I'm tremor dominant, left side). I just discussed it with my MDS the other day, and he confirmed that it's definitely dyskinesia. For me, it's either a rhythmic rolling-inward sensation/movement in my left foot, or my left arm repeatedly swings behind my back. My tremor is very much affected by my mental state (stress or excitement), but the dyskinesia isn't. FYI, I use mucuna plus carbidopa instead of Sinemet, and the dyskinesia occurs when I take too much.

The dyskinesia hasn't been painful so far (hasn't happened very much though), but I sometimes get dystonia in my left arm/hand that hurts quite a bit. It's a cramping sensation, as if I'm clenching my muscles really hard and can't relax them.

The thing that works for me to prevent constipation is taking magnesium (lately I've been taking glycinate and citrate at bedtime, and I take malate in the morning, and threonate in the afternoon--average of about 400 mg daily) and vitamin C. I try to drink plenty of water and eat lots of fiber, but without the magnesium and C, it isn't enough.

[Smittybear7]

Thanks. Ill try that. Good luck to you!