Hoping for someone to tell me I have something to look forward to.
I'm about 6 weeks in on taking Xyrem and after about week 3 I started noticing that I was having major sleep attacks--like I've ever had before. The best way to explain it is I feel as if I've taken another dose of xyrem! About 1-3 hours after I wake up and regardless of if I eat breakfast or not, all of the sudden I am so sleepy that I can't stay up. The first time this happened to me, if I would have been driving, I would have wrecked the car. Thank God I was at home and ran to the bed to lay down. Since then I've added a short acting ritalin and an extended release to my day, but it isn't helping at all. I NEVER had sleep attacks like this before Xryem. NEVER. And this is happening anywhere from 6-8 hours after my 2nd dose. So it's supposed to be impossible for the Xyrem to still be in my system.
Anyone have problems like this? And does Xyrem get better???
This is literally my last ditch effort. I have tried every treatment possible over the past 4 years and am desperate for a somewhat normal life. For the past year I didn't use any treatment at all and was suffering in my life, I can't be like this--worse than I was.
I discontinued Xyrem 6 months ago after being on it 7 months. I am still benefiting from having been on it. My EDS is almost 0.
You said these sleep attacks are happening 1-3 hours after waking up. This is also 6-8 hours from dose 2.
The Xyrem safety info says not to drive sooner than 6 hours after dose 2.
It does sound like you titrated on the quick side. Quicker than most anyway.
Starting Xyrem is a process, not an event. It is heavy duty and your brain needs time to adjust.
Relaxation is very important. Be as easy on yourself as possible. Reduce any extra stress until you adjust through it.
That was, I think, one of the snags for me. I started Xyrem during a very stressful year. I would try it again, but would be a whole lot easier on myself. Don't make too many changes at once or too fast.
You are starting to get restorative sleep. Sometimes it is 2 steps forward, 1 step back. My body reacted in some unusual ways. My sinuses drained, my lips stopped cracking, my skin looked shiny. I think my body was just jolted by the contrast of suddenly having deep restorative sleep. Even positive changes were mysterious because I was just not accustomed to positive- miserable had become my normal and I plugged along regardless.
At some point, as I began to get some relief, I began to feel the full weight of my symptoms. When I had no break from them, it almost seemed less noticeable. But as I had windows of feeling well, the contrast of well and miserable was disorienting.
I am currently taking only morning coffee for EDS, since discontinuing Xyrem. I do not know how long that will last but it is a gift.
I hope you get some relief soon.