I have dystonia and am trying to understand the context of my condition. In the mornings, it usually subsides or eases just over an hour after taking my medication (Stalevo every three hours). But in the afternoons, the timing of the symptoms varies. It is not uncommon for it to be at its worst just over an hour after taking the medication. I read on Swemodis: “Dystonia usually responds well to dopamine-agonist treatment. In later stages of the disease, dystonia may be triggered by levodopa treatment.” Is the outcome dose-dependent – so the right amount helps, but too much does more harm than good? Or how does it work?

Dystonia is sometimes a tricky phenomenon, as it can occur both in the ‘off’ state (Parkinson’s state) and in the ‘on’ state (when the medication is working), and quite often somewhere in between these two states. Usually, the dystonia disappears when hyperkinesia sets in, and in that case it’s not a matter of ‘too much being counterproductive’ – but you can still experience elements of dystonia even whilst experiencing hyperkinesia. From your description, it sounds as though the dystonia subsides when you reach the peak effect of your Stalevo after 1–2 hours, but it may well be that the dystonia occurs somewhere between the ‘off’ and ‘on’ states. You could try treating the dystonic muscles with botulinum toxin, but otherwise DBS or a pump may be an option if your symptoms fluctuate throughout the day. /Dag Nyholm