I had another good night. Only woke up once (4.30am) and then slept until about 8am. I lie there awake, and feel my tremor starting up – slowly at first, then stronger and stronger until I can feel that I am actually shaking the bed. I do a mental symptom check. Tremor (hell, yeah!), dystonia (um…. yes, but bearable), dyskinesia – right arm (yes, but only slight), dyskinesia – neck (perhaps, but really mild). I switch on my neurostimulator, and blessed calm ensues.
Downstairs, my head is moving excessively again, and my neck feels very sore. I sit for a couple of hours, waiting to see if this dyskinesia will subside. It doesn’t. It gets worse. Much worse. My resolve to stick to each setting on my device for at least 24 hours goes straight out of the window, and I reduce the voltage on my left hand side to its minimum (1.1v). Almost immediately the dyskinesia in my neck is virtually gone. It’s an incredible relief, and I spend the rest of the day in a much happier frame of mind.
I haven’t been able to provoke the impulsive behaviour that I encountered previously, although I didn’t get to increase the stimulation on my right side beyond 1.6v because of the severity of dyskinesia in my right arm (I could have increased it to a maximum of 1.9v), and although I did get to the maximum voltage on my left side, I had to reduce it after a couple of hours because of my neck. It’s very difficult to know if I would get the same results from the same level of stimulation on two different days. Presumably my brain is still healing from the surgery (I have read it takes up to 3 or 4 months, and certainly Joseph told me I would probably feel very tired for about 3 months), and so is reacting differently to stimulation as it does so. All I can do is log the results as they happen, and then hope that we can make some sense of it all when we next visit Joseph for a re-tune.
My wife and I are out for the afternoon – she has a soft furnishings business, and is going to a boatyard in Brundall to measure up for replacement seat covers for a boat. I am just tagging along for the ride. Even though I have reduced my left hand voltage, tremor on my left side doesn’t return with a vengeance, it just lets me know that it is there. It’s manageable! I get through the afternoon without feeling quite so self-conscious (the dyskinesia in my neck had been quite pronounced and very noticeable) and tremor is definitely well managed.
We are going to have dinner with my wife’s youngest son and his girlfriend this evening, and I self-medicate with cannabis in the car on the way there (tremor in my left leg becoming more persistent, tremor in my right arm a little worse, too – probably because I’m getting tired). Everything becomes a little calmer on the tremor front! We eat Chinese takeaway, drink a little Hobgoblin (well, I do), and return home in time to collapse into bed.