Unfortunately Familiar

And the Xyrem Not Really Working Anymore Saga continues.

Four years ago I got diagnosed with Narcolepsy and put on Xyrem, and it fixed pretty much everything for me. It did what it's supposed to and knocked me out every night, and I got more and more awake as the dose was slowly raised. I felt like I got to experience life again for the first time in six years- colors were brighter, I could see in 3D again, my sense of taste was back. It seemed like a miracle, which it was really. And it continued to work for three years, with the occasional dose changes and eventually adding Remeron. But I guess my body is finally saying no. About a year ago I started a steady drop in energy level that resulted in serious life changes for me. And as that's been happening, once-familiar symptoms are putting in an appearance. My dreams are getting steadily more disturbing. I keep waking up in the night more and more and not being able to go back to sleep, despite feeling extremely drugged from the Xyrem. Random hallucinations have been punctuating my dreams; it was happening maybe a few times a year, and now it's multiple times a month. My mind's eye is getting much busier during the day, distracting me with full-fledged dreams when I'm trying to do something else, like form coherent sentences when talking to people. Meanwhile, my stomach is getting more annoyed with the Xyrem again- I've been nauseated and anxious in the mornings, and that used to just happen on higher doses of Xyrem.

Even so, I've been reluctant to get off of it. I know it's still working a little bit and honestly, I'm afraid. I remember what life was like the summer before I was diagnosed. In a lot of ways my living situation is vastly improved- I have really supportive people who I'm living with who want to help me and respect my desire to be distant from doctors. No one is expecting me to be the next amazing careerperson. I'm sleeping next to someone else now, which also helps- waking up in pure terror with no one there was horrible. But on the other hand, I know what my brain can throw at me, and I'm not sure I'm ready. But maybe I never will be, and at least my blog will get more interesting, lol.

So I've decided it's time to get off of Xyrem. My girlfriend's mom helped me out by finding a sleep neurologist in the area and I've got an appointment for August. She and my girlfriend are planning on coming with me as moral support and backup. So we'll see how it goes. At least, once I'm off of it, I'll be quite a bit less worried about paying for it. So in a way, the timing is nice. And my stomach will be doing a victory dance, I'm sure. We'll see how this plays out, and if I have to get on something else. I'm hoping to at least test life without drugs and see if I can do it. It's time to give my stomach a break.