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- December 8, 2018 at 11:18 pm #8499
Hello fellow PWN! This is my first post. I’m very happy to find an active narcolepsy forum!
I have been taking Xyrem for a couple years now. I take two doses a night, 4.5 g per dose, 4 hours apart. It plunges me into deep, dreamless sleep (for a while, at least) twice a night, and it has reduced my EDS (before Xyrem, I took at least two 2-hour naps a day; after Xyrem, I take one 45-minute nap a day).
When I started taking Xyrem, I followed the instructions carefully, not eating anything within 2 hours of bedtime, and swallowing the dose (diluted in 60 ml of water) with a small amount of sugar-free fruit flavoring for palatability. It tasted awful, even with the flavoring, and I began to dread taking my bedtime doses more and more.
After I’d been on the same dose for several months and knew how it affected me, I decided to try taking it with food to mask the taste, curious whether that would reduce or delay its effect.
My first attempt was to stir the dose (diluted with water) into about a quarter-cup of hot potato soup that I had made without salt. The Xyrem added just enough saltiness to make a very bland potato soup taste good! My experience was that taking Xyrem with soup did not reduce its effectiveness in any perceptible amount, but it did seem to take longer to take effect.
Later, I changed from soup to oatmeal, which is faster and easier to make. I reheat a quarter cup of unsalted oatmeal in the microwave for about 20 seconds, add a teaspoon of maple syrup, and stir in the Xyrem solution. It tastes yummy, and I have not noticed any reduction in effectiveness, even with the added sugar (maple syrup).
More recently, I threw caution to the wind and even allowed myself to eat other foods within the 2-hour bedtime window. No matter what I eat, no matter how much, the Xyrem still works just as well as it did when I fasted. The only difference is that it takes a little longer to kick in, which is not a problem for me.
It makes me wonder whether anyone else has taken Xyrem with food and had good results. Surely I’m not the only one who hated swallowing salt water and dreaded their twice-nightly dose?
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