Welcome to the Xyrem diaries where I share my experience taking the narcolepsy wonder drug Xyrem and subsequently waking up to life for the first time. These posts are a bit more technical and not necessarily meant for people unfamiliar with the medication, unless you’ve been specifically following my Xyrem journey (From AIP Paleo to Crystal Light, Vol. 1, Vol. 2, Vol 3.1).
I’ve been taking 3g x 2 of Xyrem, with the goal of getting up to 4-4.5g x 2 some time in the next 8 months. Getting to 3g was rough and I did it by increasing my first dose to 3g and keeping my second dose at 2.75g for two weeks and then finally increasing the second dose to 3g. The increase to 3g x 2 was slow because I started experiencing side effects: I was waking up with excruciating headaches coupled with sensitivities to light and noise that were keeping me in bed all day. I had no problem when I backed down and increased slowly.
It was time to increase over the weekend so last night I increased my first dose to 3.25g and kept my second dose at 3g. Here’s the blow by blow:
11pm: take dose 1 (3.25g of Xyrem) and set alarm clock for dose 2 at 3am .
11:45pm: fall asleep.
1:51pm: wake up naturally, feeling alert, take dose 2 (3g of Xyrem) and turn off 3am alarm.
4am: wake up feeling pretty good.
4:30am: hear the cat vomit and get out of bed to clean it up.
I stayed awake and alert until about 6am when I conked out again and hallucinated my way to 11am.
What person with narcolepsy wakes up at 4am feeling alert and able to clean up cat vomit? How weird/cool is that?
The best part about 3.25g is that I don’t think I had a SINGLE DREAM on my first dose. Dreams on the second dose are still A MESS and I’m trying to get my hypnopompic hallucinations under control because every morning my brain is REMming wild. (Get it? Like “running wild” but REM? #sleepdisorderhumor #fuckincataplexy.)
I’m going to go another couple of nights at 3.25g + 3g and if everything is copacetic I’ll increase my second dose on Wednesday or Thursday. I already love the feeling of 3.25g and it’s got me excited to keep on this mystery journey / balancing act of wakefulness and side effects. Real life, real world, here I come! Well, maybe not for another 8 months or so but still.
This is us these days. 
“subsequently waking up to life for the first time”…I love that.
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Thank you! ❤️
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Thanks for sharing your amazing journey
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Thank you so much for following along!
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Hello! I have narcolepsy as well and im currently on modafinil. It really isnt working well. Do you know if thats similar??
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Hi Sable! They’re different classes of drugs and work very differently. Modafinil is a stimulant for daytime use. Xyrem is a sedative for nighttime use that helps a person with narcolepsy get restorative sleep, which we are incapable of getting on our own. I highly recommend it and there are some resources that I can hook you up with if you’re interested! It has been a total miracle drug in my experience.
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Ohh ok!! I wasnt sure what it was. Yeah, we definitely dont get the “full sleep” like we should! I have multiple dreams and never feel rested. I will look into it more and see. Thank you so much for responding back!
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Ugh exactly! One of the best things about Xyrem for me has been a reduction in the number of dreams and hallucinations that I have every night. I still have them every now and then but I’m also not at the full dose of Xyrem yet. (Xyrem is also the only FDA approved drug to manage cataplexy.)
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Thank you! ❤️
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