Xyrem, a.k.a. sodium oxybate, is a funky little beastie. The body converts sodium oxybate into gamma-Hydroxybutyric acid, also known as GHB, which is also unfortunately known as the “date rape drug.” Narcolepsy is one of the only illnesses approved for treatment with Xyrem–apparently GHB has kind of a bad rap thanks to the douches who think it’s cute to slip chemicals into unsuspecting people’s systems in order to bend them to their will. Go figure.
When my sleep doctor first suggested I might have narcolepsy, he set up an overnight sleep study and an MSLT (multiple sleep latency test). He said that if I do have narcolepsy, taking GHB twice a night will help me reach deep sleep rather than hanging out in REMville all night. I was floored. GHB? I’ve had the great pleasure of receiving a spiked beverage in my past. Not sure what substance (kinda felt like strong Ambien), but that was a very rough night. I know others who have had similar experiences (sometimes the club scene can get a little … predatory toward pretty ladies with big personalities like myself), and it never ends well. So of course I was a little freaked out that my future may hold such a treatment.
But my thoughts at the time on having narcolepsy were easily summed up by “pshhh, nope.” Like, how is that possible–I have insomnia and can’t sleep, so that can’t be narcolepsy, right? I mean…yeah, I’m utterly exhausted to my core and really sleepy during the day (often at inappropriate times like quiet meetings and the like), and sure, sometimes the right side of my face or neck will just totally freeze in paralysis for three or four seconds, but it passes almost as quickly as it comes on… So after mentioning it to my physician and getting the “raised eyebrow of that’s-not-a-thing,” I just decided it was another of my body’s little quirks and didn’t give it much thought. And yeah, when I’m super emotional, I have learned to sit down because my knees might give out and land me square on my butt (if I’m lucky!). But they always say, “I’ve got big news–are you sitting down?” so doesn’t everyone need to sit down when having difficult or emotional conversations? What about sexy-time? Is it not common to get weak in the knees when super-aroused? No? Really? Well shizz. Also, how the hell do people have stand-up sex? (No vertical mambo for this gal.)
So I have been reporting narcolepsy symptoms since childhood, but it was my pain therapist (talk therapy) who suggested the sleep study. Turns out the sleep clinic he praises most highly is the same one a physician sent me to over a decade ago. Trouble is, the old physician thought he was a smarty-smart and wanted to interpret the sleep study results himself. So guess who didn’t see narcolepsy? Yeah. I could have had this answer over a decade ago. But instead, I hopped onto his opiate train and spiraled downward for several years. (Jerk.)
Gah. I digress. So back to Xyrem!
So the stuff is weird. Of course the dose is titrated, so my first week is the super-low dose. But it still has a kick. As in, do NOT attempt to stand up without first making sure you’re fully on this plane of existence. Because I was not. I was in a new world of swirly body sensations and excessive rambling. It did not put me to sleep, but did offer a profound relaxation that honestly left me feeling more rested and peaceful than my standard tossing and turning (thought I talked my face off, keeping my partner up till 4 AM!). I was content with that result, chattiness notwithstanding. But then it was time to take dose #2. (Xyrem is metabolized pretty quickly, so it wears off in 2.5 to 4 hours, at which point a second dose is taken to make it through the rest of the night.) So I took the second dose, and was still pretty chatty for a bit, but soon fell asleep. And I think I slept without dreaming (which is extremely uncommon for me), as I recall thinking something along the lines of “hey, where are all my brain pictures?” (because thinking clearly is not a strong suit when on this stuff). Even better, when I woke up, I had my typical “ugh, it’s probably only 5 AM or so, time to lie here and think about how nice it would be to go back to sleep until my body pain requires I get up” moment, but I picked up the clock and was pretty shocked to see it was 8:48 AM! WHAT? But…but I don’t sleep in–I’ve always been incapable of sleeping in. Happy birthday, indeed!
Waking from deep sleep for the first time on my 41st birthday has been the best gift I could possibly give myself. I’m proud of myself for persevering through all of the incorrect diagnoses and treatment paths, simply refusing to back down when things just weren’t right. This has been a tough road to walk, especially while remaining friendly to the outside world. But it’s proof that there ARE answers out there. If your body is not treating you with kindness, go learn about it and find out why! Our bodies are amazing, complicated, beautiful machines, but sometimes the parts or wiring can be a bit defective. Find you body fixer. Be honest with them and with yourself. And hang in there. There ARE answers.
I’m so glad to start my 41st year this way. I have a sense of calm that trumps the hell out of my standard anxious state. [contented sigh]
Cheers to Xyrem! -=Dee=-