jerky movements,jack in the box syndrome
 

Hi
Ive had PD since 2010,In 2014 suddenly I started having myoclonic type jerks mostly when I was sitting or standing still.I was on sinemet,8mg ropinerol, and just added sinemet sr bedtime.

Im a walking jack in the box.lol at times

My doctors seemes clueless thought it might be psycho,lol
I later found out ropinirole could be causing it,stopped and better but not gone.
It seems as long as I'm busy or focused(reading driving computer)they seem to be minimal.I also get a neuropathic type pain before they start often.I dont get them in bed unless I'm restless.
Well I've added comtan and slowly dropping my cl down to 1 tab 4 times with comtan half a pill.
I also found drinking more water and seem to help.
I still get mixed reviews from my doctors so for now sadly it"s mostly up to me.
If you have any help on this Id greatly appreciate it.
Thanks
john

John,

Odd there has been no follow up post. I just do that all the time! Little jerks for me are common.

I had DBS (lead placement) last week. Simulator, aka "battery" next week, initial programming in another week.

Oddest thing post op from DBS Lead, got out of surgery at close to 9 PM. Took my medication, immediate nausea. In the morning, took my 2 * 25/100 Sinemet & 200 mg Comtan. Oh my, nausea city! It was such a shock to have that reaction as I need my meds every three hours. Currently as brain swelling (which somehow increased dopamine - no clue why) goes down I have to slowly ramp sinemet back up. Strange world.

With my shaved head and stitches I look ready to play the part of a Zombie for Trick-o-treaters tonight. (USA, Halloween.... aka all Hallows eve) odd things that came to America from the Irish.

thanks
 

Hi Tom
So gld you replied.I hope you do well with DBS.i do know many others who have no regrets with going ahead.Again best to you.
john

John,
Some months back I was in a consultation with my local Parkinson's nurse.
She is excellent and very well versed in the ways of Parkinson's disease.
During the forty minutes there I was nervous. On several occasions
I went into "involuntary jerk mode". This consists of me throwing my arms wide, sitting up very straight as if in electric shock, kicking out one or both legs and generally being jerky. I made no comment as this happens to me on an irregular basis, maybe once a week or so. After observing this for ten minutes, she looked quite puzzled and asked why I did this. I explained that
I had no control over these actions. What surprised me was that she appeared not to have encountered this in other Parky patients, despite her years of experience. I am therefore pleased to read your account as I now feel I am not the only one with this problem.
I am 65 with five years of PD behind me and currently on Sinemet Plus 25/100
along with Mirapexin 0.088 taking these both five times a day.
Best wishes to you.
Arsene