Question for folks with narcolepsy: What is your experience with Xyrem for treatment of cataplexy and EDS?

I have mild narcolepsy with EDS and cataplexy. For a few years I managed it with day time naps. I'm not sleeping well in the last few hours of the night anymore, and the cataplexy and EDS has gotten worse. With two 16 month twins at home, I also find my nap opportunities are diminishing as my kids shun their naps! My doctor has suggested Xyrem. I'm aware of the potential side-effects and treatment methods. I would like to hear any positive or negative comments you may have about your personal experience with it.

Thanks for your time!

I have just recently started Xrem and am still getting use to it. So far I don't feel anymore alert, but the cataplexy is somewhat better.

So far the best thing that I have found for the EDS besides naps is Provigil. It has really helped me. Unlike caffeine it helps keep you from falling alseep but doesn't make you jittery. I would even sleep after two pots of coffee, but not with Provigil.

If you do decide to try the Xrem make sure that you have a few days where you can test it out before being super alert. With two babies I know that will be hard, but maybe their father, or a friend could help pitch in for a little bit until you get use to how the medication works.

Good luck! I will try and check back in once I have been on the Xrem longer myself.

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