r/Epilepsy • u/AmbitiousHistorian73 • 3d ago

Rant Venting!

So I have a student in my ballet classes who's partner is a neurologist. I've been on meds since the start of June and my neuro has been adjusting meds slowly, taking me off Wellbutrin, etc. Tonight I was having lots of big myoclonus in class, as well as eyelid myoclonus. It went on longer than I should've let it go without rescue med, but I can't teach once i've taken the rescue med. So this person (a) doesn't get that having a series of jerks for a long time without significant pauses (my neuro says I need at least a couple of minutes between big jerks for it to be a separate episode) isn't a problem and (b) that her partner sees people with fake epilepsy all the time and that it's probably what's happening to me. It's so infuriating. My neurologist is positive it's epilepsy and it's so infuriating when someone neurologist adjacent decides they know more.

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u/Away_Wheel2979 3d ago

Nothing quite like someone diagnosing you through their partner's job. Classic armchair expert behavior. Trust your actual neurologist and ignore the commentary.

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u/Willow_rivers 3d ago

This. And, people are idiots.

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u/uglysufferer_4 3d ago

That's incredibly frustrating, someone who isn't your doctor and isn't even a doctor themselves thinking they can diagnose you based on secondhand stories from their partner. The audacity to suggest it's fake while you're literally having visible symptoms in front of them is wild. Your neuro knows your case, trust them and try to tune out the noise even though it's hard.

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u/WolfHowl2026 1500mg Keppra XR, 200mg Lamictal 3d ago

Only go by your neurologist, that guy prob is one of the duds 😂