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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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.