Doose syndrome isnt just seizures

Health & Wellness Neurologic
1

i’ve been reading about doose syndrome and it’s crazy how many people think it’s just about seizures. my nephew has it and it’s so much more than that. he gets these crazy fatigue episodes and brain fog that lasts for days after a seizure.

has anyone else experienced this with doose syndrome? i’m trying to understand how to help him pace himself and not trigger another seizure. i’ve heard some people talk about using pacing techniques to manage their energy levels, but i’m not sure what that looks like in practice.

anyone have any tips or resources to share?

dunno.

2

i hear you on that, it’s so frustrating when the deeper impacts of a condition get overlooked. with long covid and me/cfs, people often only see the “fatigue” and miss the brain fog and the crashes that

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that ‘lasts for days after a seizure’ for your nephew sounds exactly like post-exertional malaise to me, the kind with a real lag window. tracking his specific triggers and when that brain fog hits is probably the only way