Posted 03 September 2008 - 10:31 AM
My 17 year old daughter has been diagnosed with narcolepsy and was put on Xyrem. She had the following side effects:
Shaking hands, stuttering, and mood swings
They were so disruptive she chose to go off it for a few months.
Now she is up to one or two "involuntary napping" episodes/day and wants to restart the Xyrem.
She doesn't have cataplexy but falls down when she falls asleep and has vivid "dreams".
Also, before she goes out, her vision breaks into a square pattern. She describes it as seeing a "box". Do any of you experience this?
We've only been dealing with this for a year. We will be going off to U Penn this month but would very much appreciate hearing of any of your experiences with Xyrem, alternate drugs, and narcolepsy.
Also, has anyone had any success with any kind of alternative treatments? i.e. herbs, diet, exercise, acupuncture, etc....?
- Very worried mom
My husband often wakes up in the middle of the night to find me in the bathroom sleeping. He claims that because of the Xyrem when I sleep my body temp rises sky high and that my skin is super hot to the touch which apparently gives him the right to have the air conditioner on set at 60 degrees from March through October. 
Another thing I'm not too fond of is the taste, but I find that if I keep my doses in the fridge, the coldness will take the bitterness out of it. But that also gives me an excuse to go into the freezer everynight before I take the second dose to grab for a few bites of moosetracks ice cream. 
