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Is Anyone Using Xyrem (Sodium Oxybate) For Narcolepsy With Cataplexy?

Is Anyone Using Xyrem (Sodium Oxybate) For Narcolepsy With Cataplexy?

I have narcolepsy with cataplexy. I’ve been using solriamfetol which I believe is worsening my insomnia and cpap. I hear Xyrem can help with stage four sleep in persons with narcolepsy and sleep apnea. I have both plus insomnia and am interested in your experiences.

posted January 24 (edited)
A MyLupusTeam Member

I'm sure you're seeing a sleep specialist Eileen, right? Please do if not! That medication can have some serious sedating side effects.
And Joyce, please have your guy checked for sleep apnea if he hasn't yet been!!!
Good luck to you both and to all of us.

posted January 25
A MyLupusTeam Member

I am seeing a specialist and not having many daytime episodes, in part probably because I don’t relax but nighttime sleep is awful. My brother takes Xyrem so I am looking into it

posted January 26 (edited)
A MyLupusTeam Member

Prayers and hugs Eileen. That sounds awful….

posted January 25
A MyLupusTeam Member

Omg. It's scary. My guy doesn't have lupus. Most issues w the heart. But as soon as he is on the rd he's nodding. At least they have a med that cab help. Prayers for u. Hope whatever u try helps u. Stay safe

posted January 24
A MyLupusTeam Member

Awe, I’m sorry Eileen.

posted January 27

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