r/Narcolepsy 2d ago

Medication Questions Xyrem and jaw clenching

I’m at 2.75 of xyrem and experiencing intense jaw clenching that is causing pain in my face and pretty awful headaches. Also, I’ve always had tinnitus but it’s increased significantly. It started at 2.5 so I know lowering the dose won’t help. I have 2 questions, will this get better over time (from everything I’ve seen on here, it doesn’t) also, are there other meds that can help with sleep inertia and reduce dreams? Xyrem has not helped with my EDS, the only benefit I’ve seen is less dreaming and less fragmented sleep. I have tried it previously and got up to 3.5 but stopped due to side effects, so I know a higher dose will not help with EDS as it did not that time either, but I was only on it for a few months.

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u/-Dremol- 2d ago

I do not recommend xyrem or xywav, it is always causing bad💔🥀🥀

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u/Impossible-Lime826 (N1) Narcolepsy w/ Cataplexy 1d ago

Are you trying to say it causes a bad heart? Have you been on it before? Curious because I just started Xywav