To make a long story short, my diagnosis was changed to narcolepsy-cataplexy and I'm starting Xyrem on Tuesday. I was told to start at 2.25g x 2, and that I didn't need anyone to monitor me. I currently live alone. Is this wise? I thought it might be a good idea to take a nap on it first in the middle of the afternoon so somebody can watch me, but the Xyrem people said this was an unnecessary precaution.
I've been very sensitive to meds in the past, hypersensitive you might say, so my doc said I could start at 1.5g x 2 or even 1g x 2 if I was nervous about it.
When I asked the Xyrem nurse if I could go to the bathroom and empty my bladder when I wake up for the 2nd dose, she kinda discouraged it.
I was told I can't drink a glass a water before the 2nd dose if I'm thirsty because that would increase the chance of bedwetting, and that if I had to go to the bathroom -- well, she didn't come out and say it, but the impression I got was that I might be so dizzy that I would have to crawl ... carefully. Wouldn't it be better to empty my bladder? I have an ensuite bathroom so it's not far. Wouldn't my sleep quality be better on an empty bladder and without thirst? All that salt is just bound to make me thirsty.
I have a brand new bed, brand new mattress, and a brand new floor, and I don't want to urinate all over the place. So, I thought maybe I should go out and get some adult diapers? Good grief -- the final indignity. My shipment arrives next week and was looking for any advice from previous users.
This all seems very restrictive. Nothing to eat or drink after 8:30pm. First dose at 11pm, second dose at 3am, and I cannot drive until 9am. My other sleep doc said I should never go to bed hungry, but you can't seem to do that with Xyrem. I would always have a light snack before bedtime, like a greek yogurt or something.
So, my final question is ... is all of this scare mongering? Why don't they test it on us in the hospital under observation if it's this dangerous? Your thoughts?