Ohh yea, this neuro recovery is NOT a straight line of improvement, in fact far, far from it. I still, years later, have a seesaw of symptoms. Some days, everything is fine. Some days, everything is NOT and I never really know what today will present. I have found that if I do too much today, I’ll be paying for it tomorrow, so pacing my activity has become a priority and I hate it. It used to be I had 2 speeds, full tilt and stopped. I could go all day. Now, ohh, I’m lucky to get to 1/2 my former pace and more than 2-3hrs of physical work and I’ll be paying for it in agony.
I also find bright light and flashing light has an impact, noise has an impact, heat has an impact. Some people also report the moon phases and tides having an influence. Also diet and some food additives can affect both frequency and duration. Because all of these are variable trying to pinpoint a cause/effect can be very difficult, so again, patience, lots of patience, is needed. Sometimes (actually LOTS) I do wonder how/why my wife puts up with me as I know I wear at her patience something terrible.
The first 6mths post surgery were awful. I am NOT a nice patient at the best of times, add a BAD headache and I’m simply intolerable. If I’m having a BAD day, the best advice ‘Stay away’. I need a dark, silent bed at these times and medicated to the eyeballs.
I just have to be prepared for whatever ‘Today’ decides to throw at me. If I can feel my symptoms increasing, first I’ll change what I’m doing, change my activity. If that doesn’t help, then I’ll medicate. Give it 1/2hour to an hour for the meds to work. Still no improvement. Laydown in a darkened room. If still I’m bad I’ve got some heavier opiates I can take. If there’s still no improvement, I need medical attention. Now, these are my signs and ‘usually’ I can manage, but there has been occasions when medical attention has been required.
Merl from the Modsupport Team