My normal sleep doctor was out on Maternity leave, so I saw another doctor at the sleep center. He prescribed me Xyrem, which is for narcoleptics. He was worried (as was my normal doctor) about insurance covering it, since I don’t have narcolepsy. But at this point, it’s my only unexplored option.
So my insurance sits on the authorization for 3 weeks, then requests more info from the sleep doctor. He sits on it for another 3 weeks, at which point the insurance company denies it, because they never heard back.
The SDS pharmacy, the centralized pharmacy that distributes Xyrem, calls me to let me know my insurance denied it. They put me in touch with a patient advocate service who helps me navigate the insurance company and doctor to find out that in the end, it was the doctor who dropped the ball.
SDS enrolls me in a coupon program, which reduced the medication costs to just $10 over my normal copay. They schedule the shipment and I work from home so I can sign for it. Only it never arrives because they cancelled the order without telling me.
I call them up to raise hell, which I do, and let them know they need to communicate with me. Apparently insurance is going to pay for the meds now (that shouldn’t have stopped the shipment, but whatever). Only they’re still waiting on something from the doctor.
SDS enrolls me in the coupon program again, I work from home again, and finally the meds show up. I guess insurance will pick up the cost of refills (which they only authorized 2, but that’s fine, since we don’t know if it will work).
I started the Xyrem last Friday night. The first night, I woke several times with hip and shoulder pain. Probably because I slept more deeply and didn’t move during the night. I didn’t feel any better in the morning and I dragged all day. I slept about 7.5 hours and had anxious dreams. I ended up taking a nap during the day.
The second night, I woke several times with hip and shoulder pain. I didn’t feel any better in the morning and I dragged all day. I slept 9.5 hours and had anxious dreams.
The third night, I woke a few times with hip pain and my arm asleep. The pain seemed to be lessening. But I still didn’t feel any better. I slept 8 hours and had relatively normal dreams. I ended up taking a nap when I got home from work.
The fourth night (last night) I only woke twice with shoulder pain and numbness, so it’s still improving. I actually woke feeling better. Not rested, but less tired, in a better mood, and with less sleep drunkenness. I slept 7.75 hours and had normal dreams. I took a Nuvigil to try to stay awake during the day (I ok’ed it with SDS last night) and to ensure that I wouldn’t have any problems if I took one while I’m at NASA* next week.
I don’t know if waking up ok this morning was a fluke or the medicine is starting to work. I hope it’s working. I am sleeping much more deeply. We’ll have to see, since I’m still at the lowest dose and it may take a while for it to change my sleep to where it’s supposed to be. But today, for the first time, I’m hopeful. Granted, I’ll probably build up a tolerance to it at some point (I was told on average it takes about a year), but hopefully it works for a while. Wish me luck!
*That’s a completely different story.