As far as episodes go, they've been WAY down, minor, and short.
I still have been having a few, especially at night, but mostly limited to a little weakness and brain fog, not full body.
We heard back from Stanford about my hypocretin levels, finally. So, they're within normal limits. While this isn't the news we were hoping for, it's not a lost cause. They said that there are a few things to keep in mind:
1) I'm the youngest person they have a sample on. While parents bring their children in to be diagnosed, few go so far as to have a spinal tap done, and few need it. The average age of samples is like, 28. These people have had the disorder since they were teens, but 10-12 years for the hypocretin in their body to break down. It may be that in 10-12 years my levels would be that low, but there is no way to know.
2)There is somewhere around a 10% rate of atypical patients. They may have the symptoms, but normal hypocretin. They may have decreased hypocretin + symptoms, but normal sleep study. And, they may have the HLA markers, symptoms, and response to treatment, but WNL sleep study and hypocretin. <--That's me.
3) Regardless of what this is, it's responding to treatment. So we keep treating.
I stayed home yesterday, and almost every Thursday in over a month. It's not me trying to get out of assignments, or tests, it's something wonky with my sleep pattern.
Sometime right before this all started happening, I stayed up too late on a Wednesday night. When this happens, it can be VERY hard to wake me up in the morning. This must have coincided with me not feeling well one morning, and mom deciding I could stay home. Thus, I was able to sleep in.
Things like this can majorly screw up my sleep schedule and take weeks or months to correct.
Case in point, for the last month, I've been getting home from school on Wednesday, struggling to stay awake long enough to get some homework done, going to bed at 5, waking up at 9-10-ish for dinner, then going straight back to bed. Even with all this extra sleep, come the next morning I'm impossible to wake up, and no matter how hard I try to drag myself out of bed, I just keep drifting back to dreamland, rather quickly. Then, I need to stay home, and the cycle continues.
The easy thing would be to try and break the cycle, but that would require me to mess with my (current, albeit bad) sleep schedule, which could create a whole separate issue.I don't even want to think about it.
Part of the reason this is so hard is because the stimulants are working- too well. Yes, I said it, the meds that keep me awake during the day and help my floppiness are not quite welcome in my body. We were told to expect some issues sleeping, and I'm having them. Dr. H did say at my last appointment in January that if at by my next appointment in March I'm still not sleeping well, we can discuss sleep aids. This would help me reset my internal schedule over a weekend, and that plus a strict bedtime/wake time (even on weekends) should get me out of this mess.
On to school!