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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6 thoughts on “My List of Grievances (AKA Why Xyrem is the Worst)

  1. Elizabeth Kotyk says:

    awesome write! So sorry you’re still experiencing side effects. I too had to go on Lexapro while taking xyrem….to get my “chill” back, lol. I love xyrem despite this though. It’s not perfect, but it’s the best available treatment out of all of them as far as having some kind of symptom control goes. 🙂

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  2. Also experienced the totally not-needed weight and appetite loss (plus a side of constant reminding of said weight from a family member), but am unfortunately (maybe fortunately?) never hungry. On the plus side, the thought of eating doesn’t make me nauseous, it’s just more inconvenient now and I have to remind myself to do it.
    I, luckily, did not lose my chill from xyrem. That’s been completely environmental and unrelated, and getting some good sleep probably lessened what it would have been otherwise! I’d already been on prozac for my cataplexy long before xyrem was in the picture, so maybe that had something to do with it?

    I completely agree about “drinking the ocean” and the stupid little syringes, although I think I was a bit late to the game and missed the nice ones 😦 Another grievance to add – having to do mental time math determining if I’m going to bed early enough to get x hours for dose 1 and dose 2, and if I have something the next day, making sure there’s enough hours after dose 2 before I do any driving.

    One thing to consider if it’s relevant to you at all, is if you’re on oral birth control. If you’re not, then disregard haha. But if you are… I’m convinced it was a contributor to a whole lot of crappy narcolepsy-related things I dealt with for a majority of this year that slowed my progress waaaaay down. Thankfully, that has since changed, and after a couple other tweaks, I’m finally starting to get the full benefits of my ocean drink. Hope the side effects decide to let the benefits outweigh them soon for you!

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  3. Laurie says:

    Yes! All of this! My experience has been very similar… definitely a love hate relationship after almost 2 years on xyrem. My appetite came back eventually (especially when I got off Nuvigil) and the nausea definitely got better over time. I still throw up in the mornings once in a while. The more I can just make myself eat, the better it all works. Smoothies with protein powder have saved my mornings.
    I do tend to ignore the part about not eating for a couple hours before. Unless it’s a huge meal the xyrem still works fine for me. If I’m super hungry I’ll just prepare my food, take the xyrem, and then eat quickly and go to bed.
    I also mix my xyrem with diet 7-up or regular 7-up. It masks the saltiness really well. I also got pretty containers so I don’t have to look at the ugly orange plastic every night. It’s the little things…

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  4. Jeff Sweeney says:

    Hi – I was hoping to connect directly with you about your amazing blog and helping people living with narcolepsy to get better access to critical information. We are a network of bloggers who are committed to helping get important information to people who need it the most. Would you be interested in participating with us? You can be compensated for your help. My email is jeff.sweeney@rareexpertise.com

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  5. I took xyrem for over 10 years and didn’t have half of these symptoms! So sorry to hear about all the un-funness you have to deal with. I absolutely hated the tasted and probably wouldn’t have stayed on it so long as I did if it weren’t for crystal lite. Crystal Lite is calorie-free so it can be used instead of water to dilute each dose. I would make it a little extra strong to help cover up the saltiness of the xyrem and it worked like a charm! Hope this helps!

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