Xyrem ("oral sodium oxybate" or the sodium salt of gamma-hydroxybutyrate) is used in the treatment of narcolepsy, as well as (sometimes) idiopathic hypersomnia. Even if you don't have narcolepsy or any related conditions, you may find this run-down interesting. Here's why:
Gamma-hydroxybutyrate is roofies. That's right. Date rape drug. Right here.
The drug is so tightly controlled that there is one pharmacy in all of the United States that can fill it. Doctors must be approved and participate in a special program to even prescribe it.
Nobody really knows how it works in the treatment of narcolepsy.
I was prescribed Xyrem quite some time ago - at this point, nearly a year back. It took six-plus months of insurance, doctor's office, and central pharmacy wrangling to get the drug to my door. The whole time, I wondered: what should I expect from Xyrem? How do I know if it's working? How do I know if it's not working? What's it like? Lists of side effects and contraindications are readily available online, but I couldn't find a single detailed testimonial. This bothered me.
I've been on Xyrem for about a month and a half now. Here's what I can tell you about it.
You have to wake up at night to take a drug that's meant to improve your sleep. Everybody I explained this to found it funny. The standard practice is to split your dose in two - to take one half at bed, and the other half two to four hours later. If you're on Jazz Pharmaceuticals brand Xyrem and not the generic, they send you a tiny little alarm clock with a light on it to facilitate this. I have never needed it.
It takes 3 weeks to titrate up to the "full" dose, which is also the maximum dose. From there, you can titrate back down to a lower dose if you're experiencing unpleasant side effects. I'm in the process of doing this myself.
It doesn't necessarily knock you out. From the way the drug is described, one might get the impression that the moment it kicks in, you're going to be unconscious. I didn't find this to be the case. Your mileage may vary; I don't always fall asleep at all on the first dose, but it does at least get me sleepy enough to fall asleep on the second.
You have an unusual amount of agency in how you take Xyrem. This surprised me, especially given how tightly controlled possession of this drug is. For example, I metabolize Xyrem really fast. If I take it in two doses, I will sleep a maximum of 6 hours. I take the same amount of medicine and split it into three doses instead to compensate for how fast I metabolize it. That way, I'm more likely to sleep about 8 hours. This isn't just accepted, it's encouraged. You can even take a bigger dose first and a smaller one second, or vice-versa. The only hard and fast rule is: do not go over the max dose.
If you take it with alcohol, or within 4-6 hours of alcohol, it could kill you. A lot of drugs warn you not to take them with alcohol. I cannot stress enough that if you have ignored that warning in the past: do not ignore it here. Do not. Xyrem is a powerful CNS depressant. Alcohol is a CNS depressant. It really can kill you.
It works(?) Like many drugs that act on the brain, nobody is really sure how Xyrem works. It doesn't affect the most common (known) cause of narcolepsy (a lack of orexin/hypocretin). It's theorized that the drug acts on GABA receptors in a way that "consolidates" the fragmented sleep architecture of narcolepsy.
Narcolepsy can be thought of as an autoimmune disorder of sleep architecture. The sleep architecture of a narcoleptic is irregular, both within itself and from night to night. People with narcolepsy tend to have less of the deep sleep stages than they should. Narcoleptics also have a high percentage of stage 1 (light) and REM sleep. It's theorized that excessive REM occurs because it is of poor quality/does not serve its intended function, so the brain spams REM in an attempt to compensate. A diagnostic trait of narcolepsy is the ability to enter REM within 8 minutes of falling asleep - if sleep architecture is normal, this does not occur. While not all people with narcolepsy have cataplexy, cataplexy itself is actually REM intrusion into waking life. The narcoleptic brain is that screwed up about REM. Xyrem appears to regulate shifts between sleep stages and reduce the nightly percentage of REM sleep. I used to dream nightly. Subjectively, I do not dream at all on Xyrem.
The only difference between Xyrem and Xywav is salt. A full 9g dose of Xyrem contains 1,640mg of sodium. The maximum sodium intake recommended by the American Heart Association is 2,300mg. One of the few things I saw said about Xyrem prior to taking it was that it was disgustingly salty. It is very, very salty. I don't mind it, though. I've seen it said that Xywav tastes much worse, but I can't attest to that.
Subjective experience
Xyrem comes Priority Air Mail in a sizable cardboard box. An adult with ID must be present to sign for it. The first month's prescription comes with a light-up alarm clock. This kit and all subsequent kits come with:
The medicine, in however many bottles are required
A number of syringes, marked with common doses
A number of pill bottles
You put water in the pill bottles. They tell you to put about 60ml, but as far as I can tell, this is to make the saltiness tolerable. I made a little game of this - I try to put the same amount of water in each pill bottle, gauged by nothing but sound. I've gotten pretty good at this. I have my nightly dose split 3 ways. After adding the drug to the water, I close each bottle and swirl it a bit. I don't know if this actually does anything.
Xyrem works best if you're already tired when you take it. Hilariously, I have ADHD in addition to narcolepsy. Nighttime sleepiness isn't a thing I Do naturally. Consequently, the first dose of Xyrem only puts me to sleep about half the time, and it takes a while even when it does. I know myself well enough to know that if I wait until I'm actually "sleep for the night" tired to take it, I might be up until 3 or 4 AM. Instead, I take the first dose at around 11 PM. Even if it doesn't put me to sleep, it DOES make me sleepy enough that the dose I take 2-3 hours later will definitely work.
I was very careful to set alarms the first week or so of taking Xyrem, but I've never needed them. For reasons that are unclear to me, I always wake up when Xyrem is fully metabolized. Without more Xyrem, there is no urge to go back to sleep. When I've run out of doses for the night, I'm up for the rest of the day. There's no napping.
Some people have pretty nasty side effects with Xyrem. Headache and nausea are the most common. I had both of those, once each. The headache lasted all day but was otherwise unremarkable; the nausea was genuinely awful. The only persistent side effect I have, is tremors.
While I was waiting for Xyrem, my sleep specialist put me on Adderall. Nobody would prescribe this for ADHD, but you'll do it for narcolepsy? Sure, whatever I'll take it. I mention this because I thought it was possible that Adderall was causing tremors. I ran a little experiment: I took Xyrem but no Adderall one day and still had tremors. I took Adderall, but no Xyrem the night before, and the tremors subsided. It's definitely the Xyrem. While this is a known possible side effect, I can't find any information on how or why Xyrem, a CNS depressant, would cause something that seems very much the opposite of a depressed central nervous system. I am currently titrating back down from the max dose in an attempt to see if a lower dose will mitigate the tremors. If that doesn't work, I'm not... entirely sure what to do. Xyrem is a weird drug. It's strange not to dream at all; it's strange to wake up twice a night and still get better sleep than I ever have. Executive function has improved considerably, given that both neurological issues that cause executive dysfunction are being treated. Still: the tremors are, I will not lie, distressing. Not as bad as they were on Wellbutrin, which I was forced to discontinue! But - disruptive and distressing, nonetheless. I'm hoping that the tremors will stop eventually, or that dose adjustment will help.
Overall: would recommend if you have narcolepsy. You wouldn't think that a drug that obligates you to wake up multiple times a night could improve your sleep! Well, bucko, if your sleep architecture is already so disordered that you have narcolepsy: it can.
OK, so Xywav does help with the IH. I haven't been having sleep attacks or sleeping entire days away. My brain fog is much better.
However, I am still exhausted most of the time. I'm just awake and exhausted. Which is better. Still not very punk rock, but better than I was before.
Side effects include: more emotional blunting than I already have from the IH, not much appetite during the day, major munchies at night, joint pain, was getting horrible headaches at first, pissed the bed a few times because I was too zooted to wake up and go pee (lol), can't walk straight when I do get up at night to pee so I gotta hold onto the walls, etc.
My sleep doctor has ordered me to get more exercise during the day to help with alertness. Apparently, walking my dog "doesn't count". I don't want to disappoint my dapper old French man sleep doctor, so I joined a gym. It's a pain in the ass, but it does kind of help.
There is no magic cure for this illness. It takes a lot of work to be marginally functional. A lot more work than people realize.
Usually it's The Deer Man who stands at the for of my bed, but a hypnopompic hallucination last night had me staring at this nightmare until I woke up enough to say gtfo
I couldn't quite get the perspective I wanted but c'est la vie!
Bless Xywav, this is the best my brain has worked in 15 years. I'm not cured, but my Idiopathic Hypersomnia is so much more manageable than it used to be. The brain fog was the worst bit. My brain felt broken. The fog is finally clearing.
There are side effects.
I used to get really bad headaches right after taking it, but those have subsided.
I have no appetite during the day and I wake up with the munchies at night.
I feel absolutely shitfaced drunk when it kicks in every night. Lol. I'm not a drinker, so I had never experienced that feeling before.
i saw your post about using mix-ins to make xywav taste better- has anyone tried adding MiO or something like that? does it affect the effectiveness of the meds?
also- i feel like I’m going crazy, but has anyone else on xywav noticed other things tasting bitter/salty? not like from the aftertaste, i mean like after i wake up and eat food and brush my teeth and all that, i go to drink some water and it tastes strangely bitter? at first i thought my water filter needed to be replaced, except my bottled water tasted the same….
I've never tried MiO, so if anyone has, what was your experience?
I haven't noticed anything myself, though I can't really remember if there were changes when I first started.
