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frances_pierce2026-04-18

Hello everyone, I am the caregiver for my nephew who has Lennox-Gastaut Syndrome. Recently, his doctor prescribed Rufinamide 40mg/ml Suspension 460ml to help manage his seizures. I've been reading about the possible side effects and I'm feeling a bit overwhelmed. Has anyone else dealt with this medication? I'd love to hear about your experiences, especially any side effects you may have encountered or how you managed them. I am particularly concerned about the urgent side effects listed, such as suicidal thoughts or actions, as well as allergic reactions. Any advice or personal stories would be greatly appreciated to help me navigate this journey.

1 min read
last active 4/18/2026
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Comments (5)

T
timothy_thompson4/15/2026

I've heard horror stories about some of the side effects, especially the suicidal thoughts. If you notice anything unusual, don't wait—get help immediately. It's always better to be safe.

J
jonathan_hamilton4/15/2026

This thread is a wake-up call. Have you tried any other treatments? I wonder if there are alternatives out there that might be less intense.

K
kathleen_gray4/15/2026

This medication saved my life, but it came with some serious side effects. I remember having severe muscle weakness and changes in my vision. It was scary, but my doctor was able to manage it. Stay vigilant and don't hesitate to call your doctor if something feels off.

K
kimberly_guzman4/15/2026

We all experience something different with medications, be it good or bad. But Rufinamide did help control the seizures, right? That's a big win.

J
judy_berry4/15/2026

My daughter has been on Rufinamide for a few months now, and while it's helped with her seizures, she did experience some dizziness and drowsiness at first. It was manageable, but we had to adjust the dosage with her doctor's guidance. Keep a close eye on any changes and communicate regularly with your healthcare provider.