After months of doctors and no answers, the appointment in which I got diagnosed with Narcolepsy was a bit of a non-event. All the build-up, but the payoff was a foregone conclusion. I had so much time to read about it that I wasn’t surprised by the diagnosis.
I was surprised by my sleep test results. As you may recall, the test involves sleeping 8 hours overnight and then being left in a dark room every 2 hours to see if you nap and how long it takes to fall asleep. A normal person might not fall asleep at all if they got enough sleep the night before. I fell asleep in every nap – it took me an average of 4.5 minutes to fall asleep in each – 8 minutes or less is the general consensus on what is pathological sleepiness and I was half that.
The other surprising thing was that, although I entered REM early in my overnight study, I didn’t enter REM at all during the naps. I remembered dreaming. At the point I saw my results I assumed that would mean “idiopathic hypersomnia” rather than Narcolepsy (idiopathic hypersomnia: we have no idea why you’re really tired, but we’ve got test results that prove you are.)
It turns out that my antidepressant, Wellbutrin, sort of treats Narcolepsy by making your REM more cohesive and less random. According to my doctor, it is likely the Wellbutrin that prevented SOREM (sleep onset REM) in my naps, even though I had it in my overnight. She came to that conclusion after interrogating me on my cataplexy symptoms, which she said were textbook. She said that we could do another sleep study without the Wellbutrin, but there was no need with the cataplexy, which is sufficient for diagnosis even without a sleep test. She recommended I start Xyrem.
I was scared of trying Xyrem, especially because, despite her conclusion, the lack of SOREM made me doubt the diagnosis. I was still half-convinced that my “cataplexy” was just poor coordination and vasovagal syncope. Xyrem is specifically for Narcolepsy with Cataplexy, so if I didn’t have that, it wouldn’t do anything for me but give me side effects. On the other hand, if I did have it, Xyrem was the best treatment available.
Xyrem itself is scary. It is GHB, aka the date rape drug that is used to spike drinks and knock women out. People who take it report constant nausea, vomiting, extreme weight loss, wetting the bed, defecating in bed, sleepwalking… and so on. And you have to set an alarm to wake yourself up in the middle of sleep to take a second dose. And it is completely non-intuitive that someone who sleeps too much need to take a drug to make them sleep. I didn’t like the sound of it at all. But, if it stopped my “cataplexy” maybe I could be certain about my diagnosis
With great trepidation, and after quizzing my poor doctor, I agreed to try Xyrem.
They handed me a packet for the Xyrem and got my out-of-pocket payment, because my insurance doesn’t cover sleep specialist in SC. My mother was upbeat about it, “Now you know what’s wrong and can treat it.” I was less happy.
I was happy to have an answer that didn’t point to something terminal and confirmed that it wasn’t all in my head, but it’s hard to feel joy after being told that you’re permanently brain-damaged. It’s hard to feel joy when you’ve agreed to take a drug that can kill you in your sleep and prevent you from being able to wake up even if your house is on fire. It’s hard to feel joy when you get this information a day after being told you’re being laid off.
I felt a lot of things – devastated, relieved, scared, angry, curious, exhausted. Of course I felt exhausted, I have Narcolepsy.
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