My List of Grievances (AKA Why Xyrem is the Worst)

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Ok, full disclosure. Xyrem has given me my life back and I feel amazing, and for that it’s the best. However, Xyrem has also given me a ton of side effects and it’s annoying to take and it tastes bad, and I’m about fed up with these inconveniences, so in this post I am going to list all the reasons why Xyrem is the worst.

10 Things I Hate About Xyrem

1. Xyrem made me lose 10 pounds that I couldn’t afford to lose and now I look like an actual stick.

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A selfie I took recently.

2. Xyrem took away my appetite worse than Adderall ever did. Everything tastes like sand and I never feel hungry — unless I’ve taken my first dose of Xyrem! Then I get the biggest munchies and binge-eat like crazy! What the heck, Xyrem?!

3. Xyrem has given me anxiety and panic attacks for no good reason. I’ve always been pretty chill, and maybe that’s just because I was too sleepy to care about anything, but let me tell you, my chill is gone now! (Lexapro is bringing my chill back though, shout out to SSRIs!)

4. Xyrem makes me puke in the mornings! This just started in the past couple weeks. I was on Xyrem for 6 months with nausea but no puking, and now… bam! Puke city! So that definitely throws a wrench into my already-difficult morning routine (waking up is still super hard for me, even on Xyrem).

5. Xyrem made my acne worse! Like, much worse! I went to the dermatologist and she gave me a cream and now my skin is great (if you ignore the acne scars), but that’s no thanks to Xyrem!

6. Xyrem tastes bad, it’s like drinking the ocean! I’m literally getting half my daily  recommended sodium intake from two doses of Xyrem. It is SALTY.

7. Xyrem is weird, and that’s annoying. It’s a liquid, but it’s measured in grams. There’s two doses and one dose is in the middle of the night. It’s also literally just GHB. That is all very weird. The fact that GHB is a narcolepsy wonder cure is even weirder!

8. I can’t eat for two hours before I take Xyrem, and those just happen to be the two hours I feel most like eating! Thanks a lot, Xyrem!

9. I hate the monthly calls from Jazz Pharma. They are not looking out for my best interest. I do appreciate them giving me Xyrem, though.

10. I hate the new syringes with the curved plunger. They’re ugly and hard to use and it makes me sad to look at them. Fellow Xyrem-takers, you know exactly what I’m talking about.

Whew! That was cathartic. Despite this love-hate relationship I have with Xyrem, it works so well that I think I’ll be taking it till I’m eighty. The side effects have to go away eventually, right?

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Straight-Up Good

Reason #1383509 why Xyrem is worth all the hassle: 

Pre-Xyrem, I was taking 150mg of Nuvigil (armodofinil) and 40-60mg of Adderall a day, plus coffee, and I was still a zombie, sleeping all the time and low, low functioning. I might as well have been taking sugar pills for all the good those stimulants did — they certainly didn’t keep me awake!

I have been on Xyrem for a total of four months now, titrating up slooowly. About a month ago I got up to 3.5g twice a night, which is the lowest dose that works for me (I start feeling better during the day on this dose). I’ve stayed at 3.5g since then.

I now take 10mg of Adderall to wake up in the morning and that’s it. That’s it! I sleep for about 8 hours a night and take one 20-minute nap in the afternoon, if at all. I don’t even drink coffee anymore!

And here’s the kicker: I feel pretty decent throughout the day, and it’s my own energy, not fake-feeling stimulant energy. It feels so natural, it’s amazing. Soon I hope to go from “pretty decent” to straight-up “good”. 🙂

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.

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.

Elaine and the Terrible, Horrible, No-Good, Very Bad First Day

Yesterday I had my first day of work as an auxiliar de conversación at the Spanish secondary school I was assigned to. I was so excited to finally start working, to get to know the kids and the teachers and experience the Spanish public school system. What an incredible experience, right?

The night before, I made sure to set myself up for first-day success — I skipped my last two doses of stimulants to ensure that I could go to sleep on time, put a glass of water and my morning stimulants on my bedside table, laid out my clothes and makeup, and packed my bag so it would be ready for me to grab as I headed out the door. I set six alarms and switched on the timer to my super-bright, blue-light lamp, which I also keep on my nightstand. Then I dragged the nightstand as close to my bed as physically possible so that I would wake with the light from this freaking lamp right in my face, impossible to ignore.

What I’m trying to say is that it was so important to me to be on time for my first day of classes, and I did everything right.

Unfortunately, narcolepsy doesn’t care about your plans because it is a stupid spiteful disease.

The morning of my first day, I slept through the light of my blue-light lamp and all six of my alarms. The alarm clock app on my phone shows that I turned off each one of the alarms as they rang, but I don’t remember that at all.

I woke up five minutes after I was supposed to have left — it’s a twenty minute walk from my piso to the school.

I desperately needed a shower, I needed a lot of makeup to conceal the blotchy red scars on my face, I needed to eat something, I needed my meds.

I took my meds, I put on my makeup while lying in bed (maybe this is ridiculously lazy, I don’t know. It’s hard to be vain and too exhausted to sit upright at the same time). I skipped the shower and breakfast — non-essentials, it turns out. 

In the end, I was half an hour late for my first class. To put it another way, I missed a full half of the class period. I cried a little bit, angry tears, on the way to school. How hard is it to wake up when the damn alarm goes off?Everyone else in the world does it. Why are you too weak to handle this simple life skill? What is wrong with you? 

When I finally reached the classroom, I stood outside the door for a few minutes, unsure if it was even worth making a disruption this late in the period, anxiously pulling on the fine little hairs that grew at the nape of my neck in an effort to concentrate. What was I going to tell my teacher? I certainly couldn’t tell her the truth, that I had overslept. I couldn’t bring up narcolepsy, because no matter how I framed the matter, it would sound like an excuse, and my coworkers would think that I was unreliable. 

I heard an old friend yelling my name, and I knew it wasn’t real, he wasn’t here, but I turned around and scanned the empty hall, just in case. Finally, I unlocked the classroom door (everything in Spain has a lock) and stepped inside.

The teacher looked surprised to see me. “Did you have problems getting here?” she asked, and I lied and said yes, sorry, and she told me coolly that she had nothing planned for me this period, and could I please just meet her in the staff room after class for our planning period.

I said of course and apologized for disrupting the class and went to the teacher’s bathroom and locked myself in a stall and cried until the bell rang. Then I pulled out my little compact and covered up the dark bruised circles under my eyes — my crying had washed away the layers of concealer I had applied while still in bed.

The rest of the day went by fairly uneventfully. I had two coffees and two more doses of stimulants, but within three hours of arriving at school I needed to sneak off to the bathroom to take a nap, resting my head on the hard claw-shaped thing that holds the toilet paper in Spain. When the end-of-class bell woke me, up, there was a yellow banded snake in the dirt by my feet, and I thought it might bite me, but then I blinked and there was no snake and no dirt, just the immaculate white tiles of the bathroom floor.

FullSizeRender (7)I took a selfie in the bathroom after waking up so that we could share this moment together. How sweet!

It’s not good to hate yourself, but it’s also pathetic to be twenty-two years old and late for your first real job because you overslept. Sleeping in is caused by a lack of willpower, not by a medical problem. It’s generally indicative of a major character flaw, of being irresponsible, rude, uncommitted, lazy, self-indulgent, all of the above. Right? I mean, it’s sleeping. Everybody does it every day. The solution is to just wake up.

But I swear, I wanted to wake up on time. I did everything I could, and that wasn’t enough. It doesn’t make sense — how can I be incapable of something so simple and so essential to independent living? How can I be young and smart and pretty and competent by all the usual measures, and yet maybe I can’t wake myself up. And maybe there are days when I have to choose between taking a shower and eating because I’m too tired to do both. And maybe sometimes I can’t walk from my bedroom to the bathroom and back without needing to lie down on the floor for a minute to rest.

I got home that night and cried for hours. I don’t know if I’ve ever cried so much in one day before. Life in Spain is wonderful, but life with narcolepsy is very, very hard, and it’s harder than you think it is. It’s hard to be just out of college and to realize that a twenty-hour work week as an assistant teacher is so easy it’s a joke your friends, but it’s exhausting to you. 

It’s nearly unbearable to feel like you’re wasting your young years and squandering your time in foreign country. Hopefully tomorrow goes better.

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.