2016-05-21 – Careful consideration?

Didn’t wake until 4.30am, and then just before 6am, so definitely sleeping better without DBS being switched on.  No thrashing around either, so I conclude that that was due to dyskinesia caused by the neurostimulator.  I have a moderate tremor throughout my body, and dystonia is returning to my right foot, but it isn’t too bad – it’s been much worse!  I stay in bed snoozing intermittently until 9am.

Downstairs.  I load the dishwasher, take the rubbish out to the bin, and have a sit down before tackling the pans and making a brew.  I was going to try to determine which of my settings was giving me the best relief whilst also causing the least side effects.  I sit for a few minutes trying to review what I have written in this blog, and find that the intensity of tremor in my right arm prevents me from using the trackpad or keyboard.  Careful consideration?  Sod that!  Just switch the bloody thing on!  So I’m still on the same settings as last night (Group A, 1.6v left, 2.1v right).  Tremor is instantly moderated, but still quite evident on both sides.  When I start to wash the pans a few minutes later, I feel the dyskinesia returning to my right arm.  At least is is only in my right arm!  The dystonia in my right foot is still there to a degree, but definitely manageable.

My wife and I go out food shopping – we have visitors for 3 days next week, so have to get supplies in.  We are only out for about an hour and a half, but it tires me out.

My wife and I decide to analyse my neurostimulator settings and resulting effects and side effects.  After about an hour of discussion and copious notes, we decide to go back to the most recent settings (from my re-programming on 12th May), and then reduce the voltage on both sides to the permitted minimum.  When Joseph did my programming, he allowed me to increase or decrease the voltages on each side by 0.4v in 0.1v steps.  Now my device is giving me 1.1v on the left side and 1.6v on the right.  I have fairly detailed information on my device settings when I was discharged from hospital, but absolutely no information at all on what they were changed to on 12th May.  I really need to know more.

I notice that my tremor is a little more, my dystonia also, but my dyskinesia seems slightly less.  We have agreed to leave the settings as they are for 24 hours, so I am medicating mildly with alcohol and cannabis.  I decide to leave my device switched on tonight to see if the “thrashing around” occurs again.

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