Reply To: Coming off of Xyrem severe rebound insomnia HELP

Index Support Center Forums Treating Narcolepsy Coming off of Xyrem severe rebound insomnia HELP Reply To: Coming off of Xyrem severe rebound insomnia HELP

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Avatarmobilealguy
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@mobilealguy

I can’t offer much help, but you might try checking the threads on non-RX treatment strategies. There are others that might chime in as well.

This thread is of interest to me because I’m almost in the same boat. I’m still currently on Xyrem but do not love it. I’ve had side effects that I’m trying to work through, though mine do not seem as debilitating as yours. I was at 4.5g twice nightly for a year and a half and would get on average around 5 hours of sleep. It was good sleep so while it wasn’t a lot I would feel refreshed. After researching yet another side effect in mid-September, I found a website that noted that side effect usually presented at the highest dose. That triggered my memory because I remember telling my doctor I didn’t like the way Xyrem made me feel when I first went to 4.5g, but he told me my body would adjust and I’d get used to it. That night I reduced my dose to 3.75g twice nightly and woke up the next day and could feel a difference. So I kept taking this dose. I counted 7 side effects I had at 4.5g that completely went away at 3.75g for 2 months. Recently a couple of them have come back at times but isn’t constant. I’m not getting as much sleep (but it’s a trade off I’m willing to take). I’m now back to taking adderall during the day when needed. I am going to play around and see which dose works the best for me. I might try 3.5g for a bit.

I did want to say before Xyrem I tried Lunesta, Ambien, Klonopin, and Doxepin (hopefully I’ve spelled those correctly) but NOTHING put me to sleep. So that might not be Xyrem’s fault. I’m afraid if/when I come off Xyrem I’m going to be in your boat and miserable with insomnia. Please keep us updated!