I want to report first hat I have reduced my dose of B1 from 2.1g a day to 1,2 and I really feel that it is working now. It is early days but my tremor seems mildly better. I am not struggling to get food into my mouth, and I feel hopeful and energetic. No depression.
When I was diagnosed in January 2017 I was told to take cl 25/100 three times a day. I put that off for about 9 months because I felt I didn't need it. At that time I had none of the uncomfortable jerking which often comes now. After I obeyed orders and started 25/100 three times a day I began to get the jerking again. When I reduced my dose to half a 25/100 every 8 hours or so, it went off again.
When I told Dr Costantini that I was feeling much better on 2,1g a day, but that my tremor was worse, he advised me to increase the cl. to two whole tablets at morning and lunch and half in the evening.
I did that and the jerking got worse again, considerably worse.
Also I seem to get no advantage from Carbilev. It doesn't stop my tremor at all and I certainly don't experience on and off times. The question I have is this: does that jerking come from cl? Or is it pd?
What advice would you all give me? What if I gave up on cl? I would be grateful for any comments.