All About Xyrem, the Weirdest Drug Ever

Xyrem is a really weird drug, so I figured I’d write a post about it. Even among narcoleptics, Xyrem gets mixed reviews — it’s a miracle drug for some, for others it causes unbearable side effects, and many (if not most) narcoleptics are afraid to take it at first! Because it’s a scary, weird medicine!

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          PLUS it's a liquid! How weird is that?

Xyrem is sodium oxybate, aka GHB, aka the “date-rape drug”. There’s a lot of clickbait-y shock value when it’s introduced that way — “You’ll NEVER Believe Why THIS Girl Takes the Date-Rape Drug EVERY NIGHT” — which is annoying because Xyrem isn’t a date-rape drug, it’s medicine. But the shock value is useful, I guess? All awareness is good awareness?

Anyway. The way it works is you mix Xyrem with water (it’s a liquid), you drink it (it’s disgusting), it puts you to sleep and you stay asleep until it wears off. Because the body metabolizes Xyrem so quickly, it’s necessary to take a dose at bedtime and a second dose 2½ to 4 hours later, and Xyrem works best if you take it at the same time every night. This generally requires a strict sleep schedule and an alarm clock.

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Note that alarm 1 is set for 2:30am. 
Also note that my alarm clock tells me the phases of the moon.

 

“But WAIT,” I hear you saying. “Narcoleptics take this drug to go to SLEEP? Everybody knows that narcolepsy is when you sleep way too much all the time! What’s the point of Xyrem, then?!”

Let me educate you. Narcoleptics sleep all the time because they are incredibly sleep-deprived. Having narcolepsy means that you can’t get enough restful, deep Stage 3 sleep because your brain is too messed up. Xyrem allows narcoleptics to reach that restorative Stage 3 sleep and stay there. Getting deep sleep at night relieves the daytime symptoms of narcolepsy — it reduces daytime sleepiness, cataplexy, hallucinations and sleep paralysis. Many narcoleptics who take Xyrem say it’s given  them their life back.

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                     Thanks, Xyrem!

 

But Xyrem is a real commitment. It’s not a medication you can take casually, because it requires some major lifestyle changes.

Here are some of the things you have to do on Xyrem:

  1. Take it twice a night every night for the rest of your life or go right back to narcoleptic square one.
  2. No drinking alcohol, ever, to avoid a certain undesirable side effect called death.
  3. No eating for at least two hours before taking Xyrem.
  4. Titrate up slooowly or you’ll regret it!
  5. Pick up a new shipment of Xyrem every month. The pharmacy that makes Xyrem ships your month’s supply overnight directly to your house or another secure, approved location and you have to sign for it.

And last but not least,

      6. Endure months of weird side effects and strict lifestyle changes coupled with the fact that everyone expects you to be feeling better but you don’t really feel that much better. In fact, you might actually feel worse.

I knew I had been sleeping way too much pre-Xyrem, but it seemed like as soon as I started taking Xyrem I could feel just how tired my body really was. I couldn’t sleep the day away anymore thanks to Xyrem, so my mind was more awake,  but my body felt like it was made of lead. I felt like a zombie — technically awake, but without the energy required to actually get up and do stuff. Is that an improvement? It’s hard to say.

It was only once I titrated up to taking 3.5 grams twice a night (a process that took me 6 weeks) that I started feeling better. And I still don’t feel “normal”, but I do feel okay. And I think that with time (and patience!) I’ll get closer and closer to “normal”.

So, is Xyrem a miracle drug?

I’d say yes. But it’s not a flashy, instantaneous miracle. It’s a quiet miracle, full of little moments where you stop and say, “I couldn’t do this a year ago,” and “I can’t remember the last time this happened,” and “I’ve never been able to do this before”. Your life comes back slowly, piece by piece, and then you keep going.

 

Sorry!!!

Wow, I’m the worst. I haven’t written at all since I came home from Spain three months ago. I’m sorry!

In my defense, it’s been a weird three months. To summarize, I came home, was a pathetic slug on the couch for quite a while, started a free trial of Xyrem, loved it, everything was awesome, had to stop my trial of Xyrem to do a sleep study for insurance, went back to being a couch slug for weeks, did the sleep study (spoiler alert: I have narcolepsy), went back on the trial of Xyrem, had a SUPER RARE AND WEIRD reaction to Xyrem because I didn’t titrate back up, spent a week in the hospital, left the hospital and am now taking a little bit of time off from all meds to reset my body while I wait for my insurance to pay for my first real, non-trial shipment of Xyrem. Once they pay up (which will happen very soon, I hope!), I’ll get my first month of my very own Xyrem and will be good to go.

Even being hospitalized is not going to scare me away from Xyrem. It’s amazing. It’s a miracle drug, I’m telling you. It might be an actual miracle. I’m going to write a lot more about it because I think every narcoleptic should be on Xyrem, it’s THAT GOOD.

Case in point: when I was on Xyrem, there were days when I had to seriously ask myself whether I felt normal or not.  It was like,”What is this weird feeling of nothing being wrong with me? Is this how everybody feels all the time?” That’s how close to ‘normal’ I was!

It was like having a second chance at life, I felt better than I have in years and it was like my future was unlimited. The huge divide that I felt between myself and everybody else vanished because, for the first time, I had one foot in the land of the awake. My other foot will probably always be in Dreamland, but at least with Xyrem I can exist in both worlds.

I’ll write at length about Xyrem soon because if there’s one thing I’m good at, it’s talking a lot about the things that interest me. And when I feel good, it’s FUN to write and I WANT to write, which is amazing too. Everything comes so easily when you’re not exhausted.

Thanks for sticking with me. I am seeing the light at the end of the tunnel and I can’t wait to tell you about how great life is right now.

You Are Brave.

I have a confession to make.

So many people have told me that I’m brave for moving to Spain. It’s something I can count on, the part of the conversation where they ask, “¿Estás sola en España?” — Are you alone in Spain? And I say yes, and they say, “Joder. Eres valiente.” — You are brave.

And I never know what to say in response, because here’s my confession: It’s really not that hard.

Having narcolepsy is a thousand times harder than living alone in a foreign country, so much harder that it seems almost stupid to compare the two. Living in Spain isn’t difficult the way having narcolepsy is difficult. Life in Spain is challenging, sure, but it’s the good kind of challenge, it gives you depth. You learn to survive on your own and speak a second language and make friends and navigate a totally foreign culture. That’s challenging, but that’s growth.

You don’t grow from having narcolepsy. Narcolepsy keeps you flat, isolates and humiliates you, keeps you from thinking and laughing and speaking the way you normally would. It consumes you, you spend every moment thinking about it, because you have to. Do I have enough energy to go to the grocery store? Will the next fifteen minutes be good minutes, can I use that time to cook lunch? If I take my medicine now, will I feel okay when I get to school? Careful, don’t laugh, you’ll have cataplexy. Don’t feel frustrated. Don’t get excited.

“You’re shy, aren’t you,” people tell me here, because I don’t talk much, I don’t express much, I’m reserved. But I’m not shy. If emotions gave you seizures, how much would you let yourself feel?

Narcolepsy steals everything it can from you, and there’s nothing you can do about it and no words that make it less painful. There’s nothing redeeming about having narcolepsy.

My mom and dad have both told me, on separate occasions, that if they could be the one with narcolepsy instead of me, they’d do it. I know the proper response is for me to say, “No, I could never do that to you,” but honestly, if I had a choice, I would let them have narcolepsy and I would be the healthy one. It’s horrifically selfish of me, obviously, but having narcolepsy is torture, and I don’t want it, and if I had a choice, I would pass the burden on to someone else. 

How to Wake Up a Narcoleptic

I’ll let you in on a secret: narcoleptics can’t wake up in the morning.

I don’t know why this is, but it’s true — nothing wakes up a narcoleptic.

People with narcolepsy can turn off alarm clocks in their sleep — even the puzzle ones! — and can hold conversations while sleeping. Their eyes might be open, and they might be responsive, but the minute you leave the room, they are going to roll over as if they were never interrupted, because in a way, they weren’t.

Let me tell you, it’s humiliating to be unable to master this very basic life skill. How can you hold down a job if you’re always late because you oversleep? How can you hope to live independently when the only reliable way to wake you up is to have someone force-feed you your medications and drag you out of bed?

Since I’m currently living in Spain, I’ve had to figure out a way to wake up on my own. I’ve established a routine that works a good amount of the time; so, here is what I have to do to wake up in the morning.

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All the gadgets I use to wake up, in one nifty pic!

I have a 1100 lumen, 7000 Kelvin lamp — in regular-people terms, this means the light is “really freaking bright and really freaking harsh” — hooked up to a timer, and before going to bed, I program the timer to turn the light on at 6:30am. I keep the lamp as close to my face as physically possible, and when it turns on in the morning, I usually wake up a little bit from the pain the light causes.

Next, I have my Sonic Boom alarm clock, which is a horrifically loud alarm made for deaf people. It also has a vibrate function, so you can put it under your mattress and it will shake your bed until you wake up. I put it inside my pillow, right under my head, so when it goes off at 7:30, it literally shakes me awake. This is my cue to roll over and take a double dose of my stimulant medication, which I set out the night before next to my lamp on the nightstand.

After I take my meds, the alarm on my phone — which I’ve placed across the room — begins to go off, every five minutes, until the stimulants kick in enough for me to be able to drag myself across the room and turn off the phone alarms. Usually this takes about half an hour, bringing us to 8:00.

At this point, my body feels like it’s been hit by a bus, and I’m usually too sore and heavy-feeling to walk, so I play Candy Crush on my phone for another half hour — I consider it a victory if I can do this while sitting up — until my body wakes up enough that I can go to the kitchen and have a bowl of cereal and three huge glasses of water, at around 8.30. If I don’t eat at this point, the stimulants will burn through my system too quickly, and I will fall back asleep before 9:00.

I give myself a good hour to get ready, because chances are I will need all of that time. I move slooowly in the morning, and will inadvertently fall asleep during my morning routine, ‘waking up’ to find myself staring blankly at nothing.  I need to be at school by 10:00 on most days, and with this routine, I am usually only 5 − 15 minutes late, which in narcolepsy time is not late at all. 

Most days, this routine works pretty well. It’s actually empowering when everything goes right — It feels like, “Yes, I’m in control, I decide what happens and when.”

I occasionally sleep through all my alarms, though, and there have been times when I’ve fallen asleep in the space between turning off the Sonic Boom and reaching for my meds, which is super depressing. It’s a horrible feeling to keep waking up, seeing your meds within arm’s reach, knowing that all you have to do to start living is grab them and swallow them, but you fall asleep again before that can happen. Sometimes, this will happen for hours.

Oversleeping is generally an indicator of laziness, or a lack of discipline, and it can be difficult to understand that for narcoleptics, getting out of bed is not a question of willpower — we have to work much, much harder than everybody else just to wake up.

My New Alarm Clock

After a lot of stress but surprisingly little hassle, I’ve finally found a piso (apartment) in Alcorcón,  It’s small, homey, and right off the main street.

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Main Street! Notice all the old people sitting on the bench and judging the passers-by. This is an essential pastime for the Spanish elderly.

The one problem is that my bedroom faces the inside of the apartment complex, so it only has a small window and not much natural light. This might be a sad but bearable sacrifice for some people, but for my narco body, light is essential to waking up. The first few days in the piso, I slept for hours. And hours. And hours. When I did wake up, it was to near total darkness, and my body was sore and heavy as if I had been running instead of sleeping — residual sleep paralysis, maybe.

I do not blame narcolepsy for this trouble. I blame the lack of light. 

So I bought myself the brightest, bluest, most intense lightbulb that Ikea had to offer and put it inside a trendy Swedish lamp. I attached the lamp to a timer, and set the timer so that the lamp turns on automatically ten minutes before my alarm goes off in the morning.

This has been the best thing ever for waking me up at a reasonable time. It also gives me a wonderful opportunity to try out all the Spanish swear words I’ve been learning, so it’s an educational tool as well.

Logically, I love my lamp because it improves my quality of life. Emotionally, I hate it.

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This freaking thing. Ay cabrón.