bkdo Hello and thank you!!
First, I have had AMAZING relief from the work I do with the occupational therapist - AMAZING! And, it only took five sessions to start feeling better!!! Now, I have to start by saying she is pretty special - she is the senior OT at MGH and specializes in FND. Boy does she know her stuff! Her main messages were that what I experience is REAL and that it is important to take care of myself on a schedule (so my body can anticipated what's next - weird, but it works). This should include physical exercise that I enjoy, meditation or quiet, somewhat self-centered activities I enjoy, good food and planned, short breaks away from stress and/or LEDs. She also taught me a number of strategies to trick my brain away from focusing on LEDs and onto something else. Examples of this would be popping a strong flavor into my mouth (sour and strong cinnamon candies are my go tos), turning on enjoyable, interactive (sing, clap to the beat...) music, rubbing something very cold or rough, and/or snapping an elastic positioned around my wrist.
I went from out of work, having seizures and on the sofa with week long migraines to being out and about again, headache free. I still don't drive far or at night, if fact I don't t really go out at night anymore. I use to be a cyclist and now I ride in the woods so to avoid headlights and bike lights that have taken me down before. I don't night hike anymore, but I still day hike.
Thank you so much for your suggestion. I have a Moto G Play 4 (my second), which is AWESOME, but must be replaced. My partner has an iphone 11 and I am good with it except for the camera flash, flashlight (OUCH!), and night mod, but I have a feeling that I can adjust some of the settings so that the night viewing is more comfortable.
Again, thank you!