On Monday I had my monthly follow up visit with my neurologist. I told them how I was still having problems with concentration and memory since I started taking Vyvanse. I also mentioned how I wake up in the morning feeling like I haven’t slept all night even after sleeping for 8 to 10 hours, and I told her about my cataplexy attacks. My neurologist suggested that I try Xyrem, I had been thinking of asking them about it before, so I was more than happy to try it.
For those of you who don’t know what Xyrem is, it is a liquid medication for narcolepsy that is to be taken at night. It is a legal form of GHB (more commonly known as roofies or the date rape drug). It is supposed to put you into a deep sleep, most people with narcolepsy don’t get a restful night’s sleep, Xyrem is supposed to help you get a more restful sleep. It also treats cataplexy and can help with memory and concentration problems related to narcolepsy. Xyrem comes in what looks like a cough medicine bottle, and it comes with 2 tall prescription bottles and a syringe. It is split up into 2 doses. You measure out your dosage with the syringe then put it into the bottles and mix them with 2 ounces of water. You take the first dose before you go to bed, you are supposed to take it immediately before lying down because it can knock you out almost instantly. You set an alarm for 4 hours after you take your first dose, then you wake up and take the second dose. Then you go back to sleep for another 4 hours. It is split up into 2 doses because it wears off after 2 to 4 hours, and you need to take 2 doses in able to get a full 8 hours of deep sleep.
First my neurologist gave me a packet that described what Xyrem is, how it works and she demonstrated how to take it. Xyrem is only available from one pharmacy in the United States, after the pharmacy receives your prescription they will give you a call within 48 hours. They will mail your Xyrem directly to your house. They called me within 24 hours of my last appointment. They asked me for my insurance details and mailing address as well as a few questions about my diagnosis and the medications I was taking. The pharmacist then called me the next day to ask me a few more questions such as when I would be available to sign for my medication when it comes. They told me that they would Fedex it overnight to me tomorrow and I will receive it on Friday. The whole process was a lot faster than I expected it to be. It will also only cost me $35 a month since my insurance covered most of the cost. I was afraid it was going to be extremely expensive. The pharmacy also has their own nurses who will call you every few weeks to see how your are doing on Xyrem which is pretty cool.
I am very excited to start taking it and will keep you informed on how it is working.