Xyrem, Revisited (or, “You want me to take WHAT?!”)

It’s ironic that one of the two “good” medications used to treat Narcolepsy should elicit such a negative response when people first hear about it (“You want me to take WHAT?!). 

That’s right, I’m talking about our good old friend Xyrem, one of the newer kids on the Narcolepsy medication block.  I’m also talking about GHB, better known to some as “the date rape drug,” which happens to be the main ingredient in Xyrem.

Below you can see how I imagine such a first conversation about Xyrem (between a Narcoleptic and their sleep doctor) might go, based on my own first response upon hearing about Xyrem.

Sleep doctor (white doctor coat, notepad and all): “There is this drug called Xyrem that I think might help your EDS and cataplexy.  You take it at night in two doses, and it should give you a good night’s sleep; in fact you may be able to sleep for 3-4 hours straight with this.  Unlike stimulants, it doesn’t have the problem of highs and lows and you shouldn’t have problems with tolerance or withdrawal.  Some Narcoleptics even find they lose weight on it without any effort.  I want to prescribe it for you.  I think it will be great for you.”

You (Narcolepsy patient): “So it’s not a stimulant… it’s a sleeping pill?”

Sleep doctor: “Actually, it’s a liquid.  It’s the legalized form of GHB, which you might know better as “the date rape drug.”  When it was banned by Congress it was legalized only for Narcolepsy, first for only Narcolepsy with Cataplexy and now Narcolepsy in general.  I’ll explain everything to you.”

You (freaking out): “You want me to take GHB?!  You want me to… I’m sorry, can you repeat that please, because for a second there I thought you were trying to prescribe me “the date rape drug.”  (You laugh nervously and look at your hands.)  I mean… seriously?”

Sleep doctor: “I know it sounds bad, but it’s actually quite safe.  Really.”

And so on and so forth.

I know how it sounds, really.  I’ve been there myself.   

I remember the first time my doctor told me about Xyrem, back when it was only used to treat cataplexy.  He mentioned that if I ever felt my cataplexy was a problem, I could try this drug called Xyrem.  My cataplexy wasn’t a problem, so he didn’t recommend it and I wasn’t interested in it anyways, but when I found out what this drug was I immediately decided that this was not something I wanted to take.  I immediately reassured him that my cataplexy wasn’t a big issue for me, already convinced that I would NEVER take “legalized GHB”. 

Who would actually take GHB voluntarily, right?  It sounds… unsafe.  It sounds… crazy.

Which brings me to the second part of the story.  This part takes place a few years later, when Xyrem had proven to be helpful for people struggling with EDS (although it was still in the process of being approved for that purpose). 

You remember that I asked myself, “Who would ever be crazy enough or desperate enough to try Xyrem?” 

Well, it turns out, that person was me.  lol.

Sure, I was bit scared to try it because I’d never taken anything like it before and because of what it was, but when I learned that it could help my daytime sleepiness (which was really bad), I was psyched about trying it.  I asked a ton of questions and was finally comfortable with trying it, especially since my sleep doctor strongly recommended it. 

I had said, “I’m really sleepy these days, what can I do?”  He said, “Let’s put you on Xyrem.”  And after a long conversation, I finally said, “Okay.”

Which brings me to the topic of this post, “Xyrem, Revisited.”  I thought that I owed it to all of you to talk a bit more about Xyrem, especially considering that all I have talked about in this regard up until now has been all the problems I had with it and that I eventually stopped it because of these problems.

I thought that I owed it to all of you to give you a more balanced view of Xyrem because I know that it works well for some Narcoleptics and I wouldn’t want you to add my story to any fears you might have about Xyrem in case you might be thinking about trying it. 

I thought that I owed it to anyone who might be interested in the drug to write a follow-up post dealing with the positive aspects of Xyrem and why I don’t think it’s a bad drug.  I know that a lot of people are eager to learn more about Xyrem, so I thought that it was an important topic.

Yes, Xyrem didn’t work for me, at least not in the way I wanted it to.  It did help my Narcolepsy tremendously (my EDS was much reduced, my cataplexy was non-existent, I had the energy to stay up until midnight, and I slept for two periods of 3 hours each every night, which was a miracle to say the least), however it also did a lot of other things in the way of side effects.  In the end, the depression and anxiety I got with the Xyrem led me to stop it.  That is the story I talked about early on in one of “my story” posts.

However, having said that, I have to add that I hope that my story doesn’t deter anyone from trying Xyrem (provided that your doctor recommends it to you).  Xyrem is not a “bad drug,” in fact it is rather “good” when you compare it with traditional stimulants or anti-depressants, neither of which deals directly with the root causes of EDS and cataplexy (in addition to having other things going against them). 

As I have mentioned in previous posts, Xyrem and Provigil are “the good guys” when it comes to Narcolepsy medications.  . 

Yes, Xyrem doesn’t work for everyone.  It’s very expensive (even if you have insurance), it’s difficult to get, and for some people it might not be possible to do what you need to do to take it (for example, if you were living alone with young children, being dead asleep for 3 or 4 hours at a time might be a problem if there was an emergency).  Also, as with all drugs, it may not be recommended that you try it if you have certain health issues, like a history of depression.  Again, as with most drugs, some people find that Xyrem doesn’t help them or that they get bad side effects. 

However, Xyrem does work for many people, and I think that this is important to remember if you are considering whether or not to take it.  Just because it didn’t work for me or other Narcoleptics you hear about doesn’t mean that it won’t be a miracle for you. 

I have heard about a number of Narcoleptics who take Xyrem and have had a good experience on Talk About Sleep.  I have also personally met two Narcoleptics for whom Xyrem worked well, including a sleep research coordinator who didn’t need daytime naps with Xyrem (in combination with eating most of her food at the end of the day). 

If other medications like Provigil or other stimulants don’t work for you, Xyrem might be a good option.  It sounds crazy, I know, but it is actually quite safe as long as you use it as instructed and use it under a doctor’s care. 

For some people it is “just what the doctor ordered.”

As is the case with all Narcolepsy medications, there is only one proven method for finding out if any one drug will help you, and unfortunately that is trial and error. 

My philosophy for this blog has always been that what works or doesn’t work for one Narcoleptic isn’t necessarily true for other Narcoleptics (the corollary being that what works or doesn’t work for me isn’t necessarily true for any of you).  This is part of the challenge of having Narcolepsy (or most any medical problem, I suppose): each of us has to figure out for ourselves what works and doesn’t work for us.  Like I said before, we only have trial and error, in addition to the advice of our doctor. 

As far as Narcolepsy medications go, I don’t recommend any one medication over the other, and I certainly am not suggesting that anyone run to their doctor and demand Xyrem.  lol.

Rather, if you take one thing from this post, I would want it to be that it pays to try to be open-minded when it comes to Narcolepsy medications.  Although I will never suggest that everyone try this or that medication, I have personally found that it is a good idea to be open to trying new medications if your doctor thinks that is a good idea (provided you think your doctor knows what they are talking about… I know it isn’t something we should have to worry about, but the sad truth is that not all doctors know a whole lot about Narcolepsy).

It’s always your call in the end, but this is after all why we pay to see our sleep doctors, right?  It’s their job to help us navigate the difficult world of Narcolepsy medications. 

Sometimes it might not be a bad idea to trust them.

Thoughts?  Comments?

P.S.  And a Happy Saturday to you, dear readers.  :-)