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.