I’m interested in finding out if others have experienced a MAJOR issue with sugar after starting Levodopa? I’ve been on it for about a year (added to existing Ropinirole/Rasagiline), and noticed from the start that any sugar intake was within about 30 minutes causing a slight increase in my hand tremor and sending my foot into dystonia more often. Both my neurologist and PD nurse dismissed this each time I’ve mentioned it, and said it wasn’t a known reaction.
My Levodopa dose has gradually increased over the year; currently on 5 tablets a day, the latest of which is modified release to try and combat ‘off’ periods, but the sugar reaction has got more extreme as the dose has increased, especially since adding the MR dose. A few weeks ago I had a slice of cake and within 30 mins (and again 4 hrs later), had such bad dystonia that my entire foot turned in at a right angle to where it should be, and my husband said it looked as if it was about to dislocate itself (felt like that too; was agony). I avoided sugar for several weeks, but tested it out a few days ago by having a small piece of chocolate – same reaction.
It’s an obvious answer to say just avoid sugar, but I’m so terrified of the pain that I’m also avoiding walking – if I feel my foot starting to tingle, I’m dropping to the ground to take the pressure off it, resulting in a lot of crawling around the house, which isn’t great with 2 young boys to look after.
I’m seeing a different PD nurse at last next week, and would like to go in armed with some knowledge of whether this is indeed unique to me (a quick google search would suggest not…), and if anyone with similar issues successfully moved off Levodopa to something else?