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Hello Wendy, travel has generally always been a trial for me, and has waxed and waned as my condition has been better or worse.
I can really relate to the face holding and pushing against the chair as methods that help, although it can be very wearing.
Over the years I would say for me it has just been a case of doing what the dystonia needs at the time. For a period I found a v-shaped large pillow with the seat back lowered was more comfortable.
Taking travel breaks to stretch and move helps me to break up the pain that creeps up.
Going on the smoothest roads where possible helps, taking bends slowly, gentle braking and acceleration. Limousine driving style is particularly good! 😊
Sitting in the back seat can help me as it reduces the view so reduces my dystonia reacting to what I see. There’s a tendency for dystonia to react in advance of something you can see is about to happen, e.g. you can see you may be about to brake suddenly so the dystonia switches on in anticipation. In the back seat at least that anticipation is reduced.
I’ve found having my seat back lowered is more comfortable but that will be different for everyone I’m sure.
Having my head not touching anything at the back can be more comfortable for me as the touch sets off my dystonia.
Hope you find some methods that are as comfortable as possible. And thank you for participating in the trial that hopefully will lead to more treatment options in the future 😊
