Week Two of Xyrem

My first week at the starter dose on Xyrem provided better, more restorative sleep than I’ve had in a very long time. I think I slept like that the last time I had the flu. When you’re so sleep-deprived that you’re wishing for the flu, something needs to change.

A couple months ago, my therapist recommended I check out an app for my phone that would track my sleep quality. It’s called Sleep Cycle, and it’s promoted as an alarm clock that wakes you gently when you’re not in deep sleep, but the best part for me is that it shows how well I was sleeping based on how still my body was. At least that’s what I assume their metric is–you turn it on, and put it under your sheet so it’s snug against your mattress. Then it gives you a chart in the morning to show how well you slept. You can also make little notes when you go to sleep. I use this to track my pain levels and what’s going on in my body (sexytime sleepatizer is exactly what you think it is: letting sex be like an appetizer for sleep).

Here’s a night from July, before the Xyrem. Note there’s a lot of up & down, bouncing around. That equates to sleep that’s not very restful. For me, that sleep usually comes with nightmares. Not great.


Here’s my second night on Xyrem. (I was up rambling till the wee hours the first night. Drugs are weird, man.) Already reaching more deep sleep–the 4 AM waking was to take my second dose.


And here’s last night, my 2nd night of a slightly larger dose of Xyrem (my dose will increase slightly two more times in the next few weeks–this titration helps reduce side effects). I’ve gotten so good at taking my second dose that it doesn’t even register as “awake” movement now. And just LOOK at all that deep sleep! AND I slept till after 9 AM! I can’t think of the last time I slept in like that.

image(Ignore the little awake wobbles at the start of the night. I was up talking for a bit again. Seems like if I don’t let myself wind down, I end up just really looped rambling about my childhood. Very lucky to have a partner that entertains my rambling, but also reminds me to sleep.)

It’s really exciting to have something that confirms I’m sleeping better. Daily life is definitely getting a little easier, too. I’m not  as sleepy through the middle of the day–I thought everyone got sleepy after lunch, but now I’m not so sure… So strange to keep finding things I’ve always thought were normal are actually quite abnormal. And these are things I’ve been talking about with doctors since my teens.

It’s scary how easy it is to miss this diagnosis! Gives me serious feels for people still looking for their answer. Just a month ago, I was in that group. The freedom I feel now, simply knowing that it’s not all in my head, as the docs have been attempting to convince me since I was 15.

Now I’m off to enjoy a Saturday. This time with energy! WHEE!

Cheers to deep sleep! -=Dee=-

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