Hi- have been taking increasing Stalevo- both dose and duration-- over teh past 18 years. I've experienced marked worsening over the pst 2 years- a when I left work- ICU physician) -started disability and have had MARKED worsening of anxiety that I attributed to inactivity/social isolation and family discord. I have also had marked worsening of dystonia-foot-neck-face- but when i felt good- i felt good-i really have no tremor or significant dyskinesia, and my "on'"exam is essentially normal. With the increase in anxiety- i have become much more symptomatic- I have more and longer of periods , worsening dystonia, and bad days are worse and now are more than god. I also have an overactive bladder and definite decreased gut motility. My dopa regimen is Stalevo every 2.5 hours/day 6 am-630 pm ( 6x) and 150 of c/l cr at night. i used to think could explain my various states and distinguish between effects of anxiety, excess L-dopa ( if i would forget to take my dose and then catch up by taking the delayed dose and the next one at a shorter than normal interval- i take an average of 2-3mg of clonazapam/day but I never seemed to have any side effects on this benzodiazapine with a long half life.

Now I am confused-I have be terrible over the last 2 weeks- with essentially the same family dynamics. I must say that I would never relax- because i hated sitting and despised lying-- i have a standing desk. Despite that I worked out every day and never woke up after 7am and NEVER felt drowsy or napped or my bed during the day. In bed- I would feel- disoriented--the highest blanked bothered me-and my legs , from the knees down would feel basically stuck. On going to bed I would feel my legs vibrating uncomfortably until i fell asleep- I also would notice would feel my feet to feel my feet plantarflexing at the ankle (soles/toes bending towards the bed), as if pushed by wind. i found that if i would take an extra Sinemet Cr if i woke up at 5 or 6 am- I would not. get dystonia.

For 2 weeks- i have been exhausted- eyes closing at any point-also have been spending increasing time in bed- my posture/gait though at times normal- is increasingly bent forward-with pressure on the front of my feet- unable to take normal strides- for much of the day. My dystonia id\s killing me and can happen with plenty of dopa on board. I find i have he most energy and walk easily if i wake up during the night!--has been for a while. Also, I always felt rapid but short-lived improvement when i used to take a 1/2 tab of Parcopa. I am am big believer that the mind can do nearly everything- but I am believe something else is going on. I noted today and realize that many times recently I am worse -shaky, hot, stiff,(legs especially) after Stalevo. Has anyones had a bad reaction after many years to entacopone ( in Stalevo but not Sinemet or Paropa)- and that I might consider switching to Sinemet or Rytary