Could we please stop with daylight savings time? Forcing me into unnecessary sleep disruptions seems cruel. I have enough sleep struggles at the moment.
I am no longer cautiously optimistic my sleep medicine is working. I know it is. I’m finally getting into deep sleep. But it’s coming at a high price in terms of other effects.
Because the medicine is a central nervous system depressant it can cause breathing issues. Not only do I now snore, but the snoring is LOUD; I have both earwitness testimony from Heath and my newly downloaded SnoreLab app. The app literally calls my snoring “epic.” I sound like an angry swarm of bees attacking an equally angry dragon.
There have even been a few times when I stopped breathing. The medicine I take has been shown to trigger sleep apnea, so now I have a sleep study scheduled in mid-May to see how dangerous a problem I have.
I’m also back to waking up drenched in sweat every night. I had a brief reprieve when I made the switch from Xywav (the newer formula of the medicine) to Xyrem (the older formula). I had to switch because the Xywav includes an artificial sweetener as an added ingredient and I was having all kinds of GI issues as a result. I then had a few wonderful nights of absolutely no sweat. It felt glorious to wake up warm and dry! Now I wake up feeling cold, clammy, and uncomfortable. Sometimes I even have to change my shirt in the middle of the night when I take my second dose because I’m soaked with sweat.
These effects are not what I signed up for to treat narcolepsy. All I want is a good night’s sleep. And then we had to throw out a perfectly good hour this morning. I was a shaky, anxious mess this morning.
Here’s what’s keeping me going:
Thank goodness for this little guy. I’ve had the privilege of taking care of Fergus since Tuesday. We sit on the couch together for hours. He watches out the window; I read a book. He chases his ball and I laugh. These moments are pure joy. How lucky I am to be with Fergus. He reminds me that there are still good things in life. I know because he’s one of them.
So is Heath. He’s been super supportive. He knows the snoring and the challenges with taking Xyrem aren’t my fault. Still. I love Heath more than any other person in this world. I hate that my quest for good sleep is negatively affecting his.
Thankfully, Heath has travel plans taking him to Illinois in about a week and a half. He’ll be gone over a month. Even though I’ll miss him terribly, there’s relief in knowing that I won’t be affecting his sleep.
I don’t know if I’m going to be able to continue taking this medicine. I feel terror and relief at the thought. There has got to be a better way. I just wish I knew what it was.