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.

 

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21 thoughts on “All About Xyrem, the Weirdest Drug Ever

  1. I’m glad it worked for you, but it did not work for me. I tried it two different times in my life. Had the same undesirable effects both times. Still looking for my medication miracle. Maybe low dose naltrexone. I haven’t tried it yet though.

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      • Ha, ha! It was crazy. With this last time, after I took the first dose of medicine a few times, I noticed I would pray in tongues somewhat loudly for a while at first. (I had learned to do that in a prayer group I had attended several years ago, but I hadn’t done that in a while). I would try to do that before my husband came up to bed because it creeped him out. (He never was in to that LOL). Then I noticed I started coughing after I took the medicine, then I became nauseated. Then I vomited in the trash can beside my bed. I was actually hopeful the Xyrem was working for me because it reminded me of going through a deliverance of some evil spirit. It had not affected me like this the first time I took it. I threw up only once or twice after taking it and the praying in tongues died down.

        But both times the medicine made me really horney with my husband, but I could not have an orgasm! I really got into it and got a little loud. My husband would have to shush me to not be so loud because of the kids.

        It was a pain to reset my alarm and wake up for the second dose. I had to be to work by 7am and could not get to bed early (wide awake then usually). So I missed doses that way sometimes. And I had to wear a CPAP. That got in the way of lovemaking.

        But basically, I didn’t think it helped to improve my sleep or ability to wake up. That’s my biggie. Always hard to wake up and seem to need 10-12 hrs of sleep at night. I always thought I slept pretty well at night until I got tested in the sleep lab.

        I bet no one else has reported some of the same side effects I had while on Xyrem. LOL!

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      • Wow, I’ve definitely never heard of praying in tongues as a side effect haha. I bet you are the first one there! I’m sorry it didn’t work out for you. If you ever feel like giving it another try, I’d encourage you to stick with it! It’s made such a difference in my life. I still have trouble waking up on Xyrem, too, and I can easily sleep 10-12 hours still, but I just take an Adderall whenever I need to wake up and that solves that problem!

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  2. Heather says:

    Thank you so much for writing this article. It explains so much, not least ‘ the quiet miracle’. How are you – back in the US? I enjoyed your pieces re your time spent on Spain. Best, Heather

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    • Thank you, Heather!! I am back in the US now. I was hoping to go back to Spain this fall but it looks like that’s not in the cards (thanks to bureaucratic incompetence on the Spanish end haha). I’m going to write about it soon!

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  3. Dayna says:

    Hi, I am happy to learn that this medication is giving you some rest….although it seems it will take some time before your body begins to register it in a way that makes you completely comfortable. I have given lessons at several pharmaceutical companies over the years, including their sales staff. Your description of the medicine, its use and effects is something I believe the pharmaceutical company that produces it would be interested in having. Although doctors prescribe medicine they most often can not tell patients what to really expect from its usage and therefore when a patient’s own expectations are not immediately met, they tend to give up on the medication.
    Wishing you well,
    Dayna

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  4. mirjohnson says:

    Thanks for this post, it’s super helpful! Do you mind sharing how slowly you titrated back up. Totally fine if you’d rather not. I’m curious because I’m trying to titrate back up to see if I can tolerate Xyrem…second try, hoping to avoid some unpleasant side effects I had at 3.5 g.

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    • Definitely! I’m still planning on writing more about Xyrem. I went up by .25g per week (so from 2.25g twice a night to 2.5g twice a night, etc). I think that is the absolute quickest anyone should titrate up on Xyrem. I’m at 3.5g twice a night now (lowest effective dose for me) and I’m staying there for a while to help with side effects and to put some weight back on before I keep going up. People who go slow and steady win the race!

      Liked by 1 person

      • mirjohnson says:

        Thank you so much! My first try didn’t work for me and I restarted at 1.0g and have been going up by .25g. I’m only at 2.25 now. Nice to hear from someone else going slow and glad it’s working for you!

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  5. SleepyPeach says:

    I started xyrem end of August. my doc had me go up FAST 2.25 week 1, 3 on week 2, 4.5 week 3. I rarely take both doses bc I’ll sleep atleast 6 hrs bf I just wake up. this started at 3.5. it’s been a rough road. but NEVER in my life have I just woke up without 10 Alarms blazing for 2.5 hrs and hated every minute of it! that’s the best part about this drug. I can actually wake up no problem. There are def side effects like I’m cold all the time. I’m weak. my voice is shakey sometimes and Now sadly my I’m having mega hair loss😷. I’m thinking I’ll just have to wear a wig!
    I’m hoping I’ll continue to overcome side effects. there’s been many that have subsided. My hair is very very long, it’s down to my lower waist line. hopefully it won’t all fall out! I’ll talk to my doc about it next week though. maybe he will take me off then have me go up slowski style. I just wonder why he pushed me up so fast as you’re not the first who’s said to go slow is best. I’ll ask that too! Thanks for a great blog! Yours was the first I found when my doc told me he was 99.9 % sure I had Narcolepsy from just our conversation and my symptoms (Mostly SP and sleep attacks and confusion) I was actually trying to debunk him via research. only to find out there are others whom do the same stuff I do and they are Narcleptic too. I’m 37 it’s been a hard life undiagnosed. I can’t relive my teens, 20’s or most 30’s. but with Xyrem. there’s atleast hope of a somewhat wakeful life. Good luck with your journeys I wish you well!

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    • Professor paregoric says:

      You need to take collagen, hyaluronic acid and biotin supplements for your hair, skin and nails, I also have very long hair, way past my backside.
      I think ghb ( xyrem) strips the body’s nutrients, or the body’s effectiveness at absorption. I haven’t found anything to support that theory, just my own experience, but just getting a dry mouth is enough evidence for me, less salivary amylase, so it makes sense that other amylases in the body will be affected too. You have to go off your own gut feeling at the end of the day.
      I find that taking a chemical every night makes it so I’m definitely going to take care of body as much as I can.

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  6. Professor paregoric says:

    I’m in the uk and xyrem isn’t available on the nhs. It also seems unavailable to buy, totally unaffordable. I have narcolepsy with cataplexy so after having it my whole life. I became pretty desperate, as everyone with Narcolepsy with cataplexy will know, or narcolepsy without cataplexy, it’s progressive, but try telling that to any doctor, it’s like talking to a brick wall. I decided that I was wasting my time trying to get any viable help at all, once I was prescribed Provigil it seemed unbelievable to them that it wasn’t working for me, I was constantly reminded of the expense to the nhs for this drug ( a £1 a tablet apparently!) so it seemed almost ungrateful of me when I said it wasn’t having any effect. I just assumed I had a tolerance to these drugs that were supposedly effective. Amphetamine based drugs didn’t help either. I couldn’t understand it when non narcoleptics were having a great time but I wasn’t. If anything the hypersomnolence was worse. Even cocaine didn’t have an effect on me. Yes, I’ve resorted to illegal drug use in a desperate attempt to help myself. It’s incredibly soul destroying continuously needing to explain that you just cannot get out of bed in the morning, it just makes you look unmotivated and lazy.
    A couple of years ago it became make or break for me as suicidal thoughts were starting to creep in, I didn’t help that my partner of 26 years invalidated my feelings by telling me I needed to stop complaining, feeling exhausted but not feeling able to say it , having cataplexy attacks but having someone take it personally when you’re asked why you’re on the floor but can’t answer, well, because you’re cataplectic, but in his eyes you’re just being horrible by ignoring him. It was when he started to talk about having me put into a care home because my cataplexy attacks were lasting hours not minutes and I was hardly having any awake time, (unfortunately a long cataplexy attack is a prelude to a sleep attack for me) that I couldn’t look after myself properly. I became convinced that the only way out was to take my own life, if I couldn’t control my life I could control my own exit. Then I remembered something from my childhood, (narcolepsy was seen as a psychiatric illness in the uk up until the mid 90s. I was placed in psychiatric wards a couple of times, the hypnagogic hallucinations just confirmed that it was a mental illness to most doctors. Being narcoleptic was something you kept to yourself, like epilepsy in the 50s and 60s, I remember an aunt of mine, put away into an asylum for having epilepsy, her child was taken away and adopted) anyway, as a child, during one of the many times I was sent into hospital to give my parents a break, I saw a neurologist for a short while (an American neurologist) who wanted to trial a chemical called 1,4-butanediol. We were basically used as Guinea pigs, I’d had three lumbar punctures by the time I was seven. (But I have to say I had a very happy childhood, my father was brilliant, I was an embarrassment to my mum even though I didn’t realise that until I was older, I had a great time at school, I was always late though, my friends just accepted that sometimes I would be asleep under the table halfway through maths or that if I laughed too much I might pee my pants and fall down, I laughed so much back then and I laughed all the way through university too)
    Anyway I’ve gone off on a tangent again, I do that a lot.
    I do remember him ( the American neurologist) weighing out a tiny amount of this liquid with a syringe and mixing it with vimto to disguise the taste. He told me that I had a high IQ and I would be wasted without this. He also gave me tyrosine, cushioned with other amino acids to keep me focused during the day, I had no cataplexy attacks or sleepiness and I assumed I’d been cured. For six months it was like I had nothing wrong with me, then he was found out and packed off back to America and I was back at square one again. I did a lot of research to figure out what that chemical was, I even went to medical school in a hope to cure myself and others like me ( I had high hopes back then) it was only when scientific journals became available online and I went to East Berlin to do my PhD that I discovered Russian drugs like phenibut, it worked brilliantly for me, I still couldn’t get out of bed in the mornings but it stopped the hypersomnolence and the regularity of the cataplexy. I’d been taking phenibut nightly for 15 years until I was advised to go down the prescribed medication route. That was a mistake. So anyway, two years ago, I ordered some 1,4-butanediol from a chemical supply company and started taking it at night, 2.5g in juice. I haven’t had a cataplexy attack since, started back on an amino acid routine, l carnitine, l tyrosine, l tryptophan, until I decided that if I started taking phenibut again it would wipe out any need for amino acids, it didn’t but it works for me.
    Now and again I feel disturbed that I’m ingesting a solvent, but I don’t have any other choices. I’m pretty regimented on my vitamin and mineral intake and I drink kefir every morning so I know my gut flora is healthy. When I say morning, I mean morning, no zombified automatic episodes for hours. I’ve never actually realised how long a full day without napping actually lasts. It’s amazing to know that by midday I’ve been awake since 6-7 am…..hours!!!! There are side affects, a dry mouth, I chew xylitol gum regularly, spry is the best one, wear a mouth guard at night and stick a xylimelt to the roof of my mouth before I go to sleep.
    The chemical 1,4-butanediol is a prescribed medication in places like Norway. It converts to ghb in the liver. Is excreted completely in the urine the next morning, I know, I’ve tested it.
    Too little and it doesn’t induce sleep, too much and it causes nausea, the body has its own way of getting rid of things it doesn’t need.
    It seems that 2.5g is the most effective consistent dose, I haven’t needed to raise that amount. A years supply costs £15.

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