I’ve been taking Xyrem, a popular medication for narcoleptics, since I was about 14. I had tried Ritalin previously under my doctor’s care, but it wasn’t for me. Once I was prescribed Xyrem, it was a bumpy road in the beginning battling with the initial side effects like weight loss, muscle spasms, and anxiety. Eventually, my body acclimated for the most part. I took breaks from it from time to time when I felt like it was giving me a mental fog, and I could never get passed the salty taste. But, it helped me tremendously in high school when I was struggling with staying awake during class.
It wasn’t until late last year that I heard about Xywav, an alternative to Xyrem that had 92 precent less sodium. That was the first thing that caught my eye, as I’ve always had a disdain for Xyrem’s salty flavor, helpful as the medication is. I was a bit apprehensive at first, remembering my first month taking Xyrem and the side effects. I finally met with my doctor, and was prescribed Xywav.
The first thing I noticed about Xywav was it’s neutral – almost sweet – flavor. Instead of assaulting my taste buds before bed, it was like a soothing lullaby. As I was taking a small dose to start with, I didn’t fall asleep as quickly that first week I was taking the medication. As I slowly increased my dosage, as directed by my doctor, I started feeling the benefits. Like with Xyrem, I felt more well rested and able to wake up in the morning. Since starting Xywav a couple months ago, I’ve only had one episode of sleep paralysis (as opposed to my weekly episodes when I’m not medicated), and my mild Cataplexy is obsolete. I’ve also noticed that Xywav doesn’t give me that mental fog feeling that I used to get every once in a while with Xyrem. All in all, I think I finally found the best fit for my Narcolepsy in terms of medication.
Everyone is different, and it’s worth it to experiment with different treatment methods and medications. My (totally unprofessional) opinion is that holistic methods (exercise, healthy diet, and a focus on mental health) working in combination with medication is the best way to go for treating Narcolepsy. You may have to kiss a few metaphorical frogs along the way, but it’s worth it once you find the perfect fit.