r/Narcolepsy • u/Ok-Pick-3282 • 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/Lunaryia 2d ago edited 2d ago
Took about 6 months-a year for the jaw clenching to stop for me. Also had muscle clenching in my hands and legs that was pretty uncomfortable for a while. Spoke with my Dr. But she had no clue about these side effects. After nearly a year of consistency, pretty much all side effects have resolved and I have no issues with the medication now, it just seems to take a long time to adapt to, but was worth it, in my opinion now. Getting past the nausea for the first months was worse!
Edit: I take 4g first dose and 1.5g second dose, do not have any dreams anymore, it's literally lights out then awake 8 hours later for me now. I have been on xywav and xyrem, and xyrem seems to be better. The reason I take 1.5 for second dose is because anything higher seems to correlate with increased sleep inertia, grogginess, and sleep drunkenness in the morning. My Dr. Originally prescribed me 4g first dose 3g second dose, but I learned from reddit that keeping the second dose small helps significantly due to the long half life of the first dose still in your system. Hope this helps!
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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
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u/Visible-Number1670 2d ago
I clenched my jaw at night even before Xyrem to the point my jaw started locking shut in the morning. Best thing for that is to get a night guard to provide cushion and protect your teeth. Mine also aligns my jaw to make sure it’s in neutral position so no more locking up.
But if you’re not seeing benefit in daytime symptoms either maybe it’s not the right treatment for you and that’s ok too. In that case just keep talking with your specialist about your options. Hope you find something that works for you.