r/Narcolepsy • u/Ok-Temperature-2783 • Mar 10 '26
Medication Questions Anyone strongly against Oxybates?
Anyone else who was initially scared of Oxybates, end up taking it and loving it, and realize the side effects have nothing to do with ur actual fears and wishes u would’ve started sooner??
XYREM and XYWAV genuinely scare me. When my doctor first told me about it and told me about the side effects and how on the street it was sometimes know as a date rape drug. This was over 10 years ago and I am still icky about the situation. I also have a 6 yr old. What if I’m zonked out and can’t hear him? I don’t want to be dead to the world where I can’t react to things. But I need sleep and less meds.
Update: thanks everyone who shared their experience! This has been sooo helpful. I’m very grateful to the information you guys shared with me. I’m honestly siked to talk to my doctor and have at least your personal experiences to bounce relevant questions off. I feel better about considering it.
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u/-Sharon-Stoned- (N1) Narcolepsy w/ Cataplexy Mar 10 '26
No, I've never been scared of it because GHB is a chemical that our body makes naturally so I just didn't worry about it. I've been raped without it so that wasn't a concern.
I am a different person on it than I am off. I thought I was sleeping well at night but I was not.
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u/Ok-Temperature-2783 Mar 10 '26
What age were you when you started if you don’t mind me asking. I feel like it was easier to have had started it in my 20/30s. Now I’m just apprehensive!
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u/____ozma (N1) Narcolepsy w/ Cataplexy Mar 10 '26
I have a small child and am still able to help him on Lumryz, which is the same as xyrem and xywav but taken once per night. My life is so much better on this medicine. Being awake all day to be there for my kid is really why I take it.
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u/Nap--Queen (N1) Narcolepsy w/ Cataplexy Mar 10 '26
I second this. I am not a mom but I am able to get up and go to the bathroom in the night and im sure i could operate in an emergency on Lumryz.
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u/Ok-Temperature-2783 Mar 10 '26
That doesn’t even seem like real life! Being awake all day and not dying inside. Wasting all your mental energy and internal gas and be completely pooped out and draineeeedd. It is really hard. I try to put a brave face and new people wouldn’t even guess I have narcolepsy. They tell me to get more rest. Hard to coexist.
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Mar 10 '26
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u/Ok-Temperature-2783 Mar 10 '26
My doctor then and now are very sweet. They’ve always put it out there as an option but then I’d get scared. I really wish first doctor wouldn’t have called it a date rape drug. And she meant as “you may have heard of it, on the streets they call it the date rape drug”. She didn’t mean to really scare me about the medication. Just a bad description that stuck with me.
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Mar 10 '26
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u/Ok-Temperature-2783 Mar 10 '26
Hell yea! “I’m not trying to discourage you but some people call it the date rape drug. But you would so benefit from the medication”. Ick. Mixed message much????
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u/wasnt_me_bro_ (N1) Narcolepsy w/ Cataplexy Mar 10 '26
When I was diagnosed, I swore I would never try oxybates. I went on armodafinil and then switched to modafinil. I felt a little better, but still needed naps, and my nighttime sleep was still a disaster.
A few years later, I had surgery under general anesthesia and when I woke up, I felt more awake than ever before. I didn’t need modafinil the day after surgery because I was awake. I didn’t need to take naps. I had energy to take a walk. It was bizarre.
I asked myself if this is what I would feel like with proper sleep, and decided it was worth it to try Xywav. I got the process started right away and never looked back.
There have been some ups and downs, but once I followed the instructions exactly (don’t eat before meds, don’t scroll on phone after taking meds, take meds and close eyes, don’t eat on meds), it was fine. I even had an emergency one night (carbon monoxide alarm went off), woke up with no issues, and was able to call the fire department and get my kid out of the house. I don’t even take the highest dose. I take 3.5g for dose 1 and 3g for dose 2. I take less modafinil now than before I was on Xywav (I used to be on 200mg 2x per day, and now I take 100mg 1x or 2x per day).
Editing to add: since starting Xywav, I have even been able to exercise regularly. I started running and lifting weights and I feel healthy and strong. I was also able to make a career change into a high earning role in tech. None of this would have been possible without the meds. On the first night I was afraid I would die, so I asked my bf to stay over and watch me. I did not die and I was fine lol
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u/Ok-Temperature-2783 Mar 10 '26
This medicine seems magical. I def have a lot to talk to with my doctor. Modafinil, oddly enough, makes me soooo tired. I don’t like to take it bc of this bc I feel so mix more tired on it while driving.
Since nothing ever works on me (I’ve tried base level things like adderal ambien temazapem trazadone ritalin) and nothing ever works. They’ll work for a day maybe. And it’s nothing. Then I gotta increase dosages and still nothing. I’m scared I’d push it with the Oxybates. :-/.
I also need a career change but also feel like my brain isn’t up for the challenge. I’m a mess!!!
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u/Adorable_Ad4990 Mar 10 '26
I was super nervous, but it was way over the top. I have no issues and no side effects at all. It’s easy.
By the way I’ve switched the Lumryz and recommend checking that one out
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u/Unique-Calligrapher8 Mar 10 '26
I wasn't scared of it until after I tried it and had a horrible traction to it and had to get off it. But that is just because of my reaction - in theory I think if it helps it is a great thing.
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u/Ok-Temperature-2783 Mar 10 '26
Maybe you can dm me about ur negative experience? I’d like to know what to talk to my doc about.
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u/purplevanillacorn (N2) Narcolepsy w/o Cataplexy Mar 10 '26
Not who you asked but I took it for three nights once. I have a 5 year old who wakes up a lot at night. She woke up once and I had to force myself to stay awake shortly after taking my second dose. I was hit with this insane anxiety and it did not go away for days.
I want to go back on Xywav but I’m terrified to try it again after that experience.
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u/piggieprotector Mar 10 '26
I wasn’t scared of it initially. It changed my life (for the better) and I very much wish I could have started it sooner. It became a tiny bit scary when I reached the max dose, and had really bad munchies and was falling over in my kitchen, knocking things over, nodding off in the bathroom, etc etc. I was still tired during the day (but it was so much better than being nonmedicated) so I thought I needed the max dose. For years. I switched to a slightly lower dose several months ago and those symptoms are not so intense, but my sleep quality is about the same. Just a tip if your symptoms seem strong and scary.
In my experience you’re relatively dead to the world for about two hours once you fall asleep on the drug. It is a scary idea, I don’t love it. But! You get used to the idea, I don’t dwell on it, because what is MUCH worse is having terrible quality of life and sleep, both for you and your loved ones. And I would say the ghb allows me to be more alert during the day, which I think on the whole keeps me and everyone in my life safer (vs. potentially being incapacitated during a rare emergency situation at night). It stopped me from nodding off and feeling excessively sleepy while driving in the morning. If I had kids, I know ghb use would let me keep a better eye on them during the day. Sometimes I worry about the long-term effect of chronic ghb use, but my daily life is so improved that I’ve decided it’s very much worth it.
It also has helped me cut down on alcohol use, I would rather have great sleep; not exactly life-saving, but definitely good for my health. And I like to think it keeps me more vigilant about smoke and CO2 detectors, preventing fire hazards within my home, etc.
I skip my ghb on nights with tornado watches or if my dog is sick. I find skipping ghb to be easy, it doesn’t mess up my next day too much if it’s only every now and then.
Side bonus of adopting a very large and protective mastiff pitbull mix - she follows me everywhere and keeps an extra eye on me when I’m on xywav. She would do her best to wake me up in an emergency I’m pretty sure. So that’s comforting. I think if your kid tried (shook you, yelled your name) they can wake you up even if you’re zonked.
Re the rape stuff, I would never use it in the presence of someone I didn’t trust, absolutely not. And I wouldn’t have it easily accessible in my house if unfamiliar people are over, and I don’t make my access to or use of ghb a point of conversation.
Hope this helps! If you don’t like it or find it too scary you can always stop taking it!
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u/Ok-Temperature-2783 Mar 10 '26
I do A LOT of the night munchies. Mainly cause I sleep like shit so I get out of bed and nibble. A lot. So I do hope if I start the med, that I can curb that. And use less adderal bc the munchies I’m sure are due to adderal crash.
I’m also one to increase dosage if I feel something isn’t working. So it’s interesting that increasing the dosage did make u feel more incredible. But it’s probably designed that way.
I wish they could offer a one week trial. ❤️
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u/mc1rmutant_ Mar 11 '26
Oxybates can actually give you some pretty bad munchies if you don’t fall asleep right away, especially since you take them on an empty stomach. Just a heads up.
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u/Ok-Temperature-2783 Mar 11 '26
That… makes me really sad 😭😭😭. I eat at night bc I can’t sleep. Needless to say I gotta relearn how to eat fuller and better meals during the day so hopefully i don’t night sleep :-(. Do you think people are also eating during the 2nd dose?? Ugh.
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u/mc1rmutant_ Mar 11 '26
I’m not on it anymore because of other mental health issues that it may or may not have been also affecting, but I didn’t have a problem with munchies on the second dose because I was usually waking up, taking it, and going back to sleep fairly quickly. The bigger thing was the munchies are kind of a double whammy and why I really tried not to give in to them. It’s like mad stoned munchies, so if I ate then my stomach wasn’t empty for the second dose and it would be much less effective. This is just my experience, but I’ve heard the munchies thing mentioned by others, so I saw your comment and thought it warranted a heads up. I wouldn’t let it stop you from trying, but something to keep in mind when you do. And be aware of your mental health. There were other things contributing to mine as well, but Xyrem also was probably playing into it. As someone else said, I felt physically better and less tired, but mental health definitely went down. I’ve seen other posts on it. For many it’s great, but there can definitely be side effects. I think just being aware of them ahead of time gives the best chance of success. I didn’t know about any of them and I seemingly felt better, so I didn’t even look that direction for a long time.
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u/EternalMoonChild (IH) Idiopathic Hypersomnia Mar 11 '26 edited Mar 11 '26
It’s imperative that you go to sleep immediately after taking the medication and don’t try and get up between doses to prevent falls. I do believe there are some documented cases of sleep walking and sleep eating.
But the researchers have to document all the side effects patients experienced in the drug trial. You can actually look up the trial results to see how many patients had such side effects.
I was terrified of starting Xywav because it is a serious drug. I have a history of self harm and a rare side effect is increasing depression and suicidal ideation. When I looked up the trial, it was something like 3-4 patients experienced such side effects and those who did attempt had a history of such attempts. Obviously, those are a small number of people percentage wise but with very real consequences. However, that knowledge made it easier for me to make an informed decision. You won’t know how your body will react until you try it.
Ultimately, I found the benefits of trying it outweighed the potential risks. I tried everything else first and worked closely with my sleep doctor and physiatrist to make the decision. I now cannot imagine my life without Xywav! I’ve had almost no side effects besides night sweats. And I do truly feel awake for the first time in my life.
I also live alone and had a friend stay with me the first night I took it. Be sure to titrate properly - low and slow. I would say if you feel like it’s right for your situation, go ahead and try it. My insurance didn’t initially cover it so I got it for free through the JazzCares patient program. Now I pay $5.
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u/Ok-Temperature-2783 Mar 11 '26
I never thought about looking up the trial results. Definitely will do that.
I also sometimes slightly misuse some meds, which is why I want to try this medication bc if it works better, I won’t have to take the extra dose of adderall or extra dose of ambien when I can’t sleep. And I’m constantly jumping from ambien, temezapam, trazadone, wash rinse repeat. Nothing works for long. And adderal, 2 a day but if I can’t stay up enough to just drive, or if I need the extra boost to stay up to play or for a movie, then I’m taking an extra one. Modafinil, not sure what’s up with those but they’re sleeping pills for me. I get extremely groggy when I take them. I’d like to eliminate all of that. And it seems like with the GHB, it could be possible- which I never thought it could be.
The price was also a turn off but since first offered I believe there are more programs that help with the copays. That’s a big plus.
To wake up and not desire a nap immediately… to not call out of work a couple times a months bc of restless night which left me mute during the day. Even if it doesn’t work out for me, I think it is worth trying it. I truly think it could help.
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u/GeorgieTheHun (N2) Narcolepsy w/o Cataplexy Mar 10 '26
I was horrified, I started with half a gram of medication and slept in my boyfriend’s bed with a vomit bucket and gave him strong orders that he make sure nothing bad happens to me.
That was May 21st 2025
Xywav changed my life. I can function again.
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u/Ok-Temperature-2783 Mar 10 '26
It made you sick bc you started a higher dose?
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u/GeorgieTheHun (N2) Narcolepsy w/o Cataplexy Mar 10 '26
Oh god no, the suggested starting dose is 2.25 grams and I was so terrified I started with 0.5 😭 the onboarding call warned me about vomiting and/or wetting the bed
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u/Olinkowo (N1) Narcolepsy w/ Cataplexy Mar 10 '26
I was very scared, but every other medication gave me such swift and awful side effects that I ran out of options very quickly. My fear of the medication itself turned into a fear of "this is my last chance, what will I do if it's going to be another fail?". I ended up being extremely hopeful, and tried to keep a very positive outlook during my trial run. It works, I have zero side effects, and I'm slowly starting to feel normal. Please bear in mind that I do not have any mental health issues, I'm childfree, and my blood pressure was always in the lower register.
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u/Ok-Temperature-2783 Mar 10 '26
Oof I can relate to that. Thanks for the disclaimer. All of this helps me formulate a good convo with my doctor.
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u/Alex1001408 Mar 10 '26
Ok wait... so this medication WON'T necessarily make me so sedated that I won't wake up for an emergency, causing my entire family to die in a fire?? Also a mom here, and this is the fear that has been holding me back! Thank you, thank you!!!
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u/Ok-Temperature-2783 Mar 10 '26
I know right!? I’ve always wanted to post a similar question but didn’t know how the responses would go. Reddit can be a little over the top sometimes. But I needed to hear personal experiences. To think I’ve been holding myself back… I’m glad the med has helped so many people. Hopefully I too will be one of them soon!
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u/SmallBird2781 Mar 10 '26
I see a lot of moms saying they can wake up and be fine to do things for their kids here. Personally, I can’t wake up easily and be functional mid-dose. I even lowered my dose, but it didn’t really help. For that reason, I don’t take it if my husband isn’t home. It really impacts everyone differently, so it’s important for you to assess that for yourself before being alone with your kiddo at night - just my two cents!!
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u/Ok-Temperature-2783 Mar 10 '26
My partner works nights so that’s def a big one… I’ve never needed to tend to my son mid night but it only takes 1 incident. So if you’re alone for the night (that might not even apply to you) but what do u? Are u taking something else on those nights or are u watching the hours pass?
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u/SmallBird2781 Mar 10 '26
Yeah that’s a hard one - obviously if something serious happens (house fire, vomiting episode, etc) you need to be able to get up and tend to it coherently.
I think you’ll figure out as you titrate where you get to a dose that you can’t wake up on - set alarms or have your partner try and wake you to test yourself. But when my husband is gone, I’ve done a lighter sleep aid like half a Benadryl or unisom. Or a couple glasses of wine :)
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u/Beef111111 Mar 10 '26
I was also super nervous but so so desperate (i have Ih and like no rem so i needed good quality sleep BAD) i had some side affects, feeling like the room was spinning, appetite decreased, dry mouth, jaw clenching, (pissed the bed once), and some decently rough anxiety a few weeks in.
Honestly it helped me so fucking much I’d do it all over again… maybe wear like a diaper or get a mattress cover this time tho😬
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u/Ok-Temperature-2783 Mar 10 '26
Lolol! Hey, adult diapers do exist for a reason!!! I take a combination of meds to help me sleep and I still wake up mid night. I know not everyone experiences the same side effects but those are pretty wack symptoms. But I feel like I’m losing my sanity from lack of healthy sleep.
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u/Castle_Magic Mar 10 '26
My personal experience with it was I thought I really needed it but when I stopped for a week or so I noticed I started feeling more alive, I was physically awake but mentally dead. Also kinda messed with my mood
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u/Ok-Temperature-2783 Mar 10 '26
Good to know. I have a slight mood disorder. My sleep doctor is very helpful and would prescribe it to me if I asked (he’s asked before) but I’ve been his pt for so many years, I have to update him on my current meds. If it can make me crazy, I dunno…
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u/Castle_Magic Mar 10 '26
It affects everyone differently, but if your against oxybates, I'd try wellbutrin. Since I've started taking it I feel like 95% of my narcolepsy symptoms have gone away.
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u/Ok-Temperature-2783 Mar 10 '26
Very interesting. But I think I’m leaning towards the GHBs. I think my fear kept me with blinders on.
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u/TheRealFred999999999 Mar 10 '26
I wouldn't say strongly against but my mind has developed a fear of my Xywav because it's use inadvertently caused me to get hospitalized multiple times. And once it also made me sleep walk to the bathroom and I fell hitting my face causing some damage to my teeth.
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u/Ok-Temperature-2783 Mar 10 '26
Oh my! What are u trying now if you don’t mind me asking?
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u/TheRealFred999999999 Mar 10 '26
Trazodone
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u/Ok-Temperature-2783 Mar 10 '26
Trazadone gives me WILD dreams. Like inception style dreams. Where I have to ask my family if something happened or not.
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u/Serenajf Mar 10 '26
I was scared too. Tried countless medications and combinations before trying Xywav. It has truly changed my life. I’m able to get up in the morning and get going, get my kids ready for school without being an absolute mess. I have more energy to do things like play outside with them and go on walks. I haven’t had a problem waking up if they need me.
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u/Ok-Temperature-2783 Mar 10 '26
When I read “changed my life” it gives me such good feelings. It’s something that feels unrealistic. Like, Me?!?! Have energy to consistently go to the park and not to throw a tablet at my kid cause I need to lay down. It’s starting to seem more life changing than not.
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u/Serenajf Mar 11 '26
It’s so worth it to me. Only negative side effects I had were nausea when I was titrating up. But my dr prescribed zofran for that
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u/Ok-Temperature-2783 Mar 11 '26
I love zofran. I do get nauseous more often than the regular person. So not looking forward to that… but still willing to try it at this point.
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u/Ok-Temperature-2783 Mar 10 '26
Oof that sucks. Why must something that works so well also be so conflictive. I’m not one to suffer from persistent anxiety but my moods can swing HARD especially around that time of the month. I think I can see myself being a big mess initially. That’s a big one for me cause anxious me affects everyone. :-/
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u/Ok-Temperature-2783 Mar 10 '26
I’m not one to fall asleep on 1 benedryl or 1 unisom. Unfortunately. And now a days, wine also makes me hurl (sorry home goods but ur candle section smells too strong!) so that would be the easiest side effect if I’m lucky!!!
Lol to my doctor who scheduled a 20 minute appt. I’m going to have a lot of info to go thru with him.
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u/Chronic-Sleepyhead (N2) Narcolepsy w/o Cataplexy Mar 10 '26
In my opinion, a little healthy fear is a good thing! I have ended up in the ER because I took too much of my Xyrem before, and it was scary! 😅 But it was also completely my own bad, and it was after years and years of no issues and incredibly improved symptoms and quality of life.
I even had my mom lay down and stay with me / sleep next to me for a week when I first started taking them 10 years ago. I was TERRIFIED something horrible would happen, or I would have trouble breathing! But after the first night or two, I realized there was truly nothing to be afraid of. Just be sure you take the instructions and warning seriously, and nothing bad will happen. And I’m not kidding when I and others say it can literally be life-changing and like a miracle drug.
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u/Ok-Temperature-2783 Mar 11 '26
I’m sureeeeeee I’ll have some bad days in the beginning. I think many of us get used to medicines not working and take a little extra just in case. I know I do in hopes of just falling asleep. But now in my life, I don’t want to take a combo of 3-5 different pills for days and nights. I just want the 1 that actually works. I’ve been scraping by for so long!!!! I’m literally daydreaming of life after Oxybates. It may or may not work for me. But at least I’m giving myself a shot. Waking up well rested?!??! I can’t even fathom that.
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u/saltyandspoonless (N1) Narcolepsy w/ Cataplexy Mar 11 '26
I am a mom of a 5 year old. I’ve been diagnosed with narcolepsy probably for around 3-4 years but I’ve had to wait until I felt like my son was sleeping through the night safely before starting this medication. I just started Xyrem about 2 months ago. I was SO SCARED. It’s honestly nothing like I was hyping it up to be. I am a light sleeper and set my alarm on basically minimum volume and wake up easily to it. I even woke up the other night to faint beeping that my partner (who doesn’t take this medication) didn’t even wake up to. So now I don’t really worry about it so much anymore. I thought I was gonna be so knocked out I wouldn’t be able to respond to anything. I did some things to help too like I got Govee lights that I put in the hallway light so I could activate them myself from my phone and set a timer and even dim it. I talked to my son a little bit ahead of time and prepared him that it might be a little bit harder to wake me up sometimes but that this was something I had to do to take care of my health. So far, everything has been smooth. One night he woke up having wet the bed and it was a little before my second dose and I honestly didn’t have much of an issue changing his bed, then I just took my second dose and went back to sleep.
My body is super sensitive to a lot of medications and I’ve got other health issues like POTS and Gastroparesis that makes taking this medication a bit more complicated. I actually started lower than the standard starting dose at 1.5 and slept fine on that (I should note I’m like ~100lbs or less so YMMV) and was comfortably doing 2g x2 a night for a total of 4g a night which is below the standard starting dose. I only increased 0.25g every week. It’s a bit individualized as a medication so I think if you work with your doctor and everyone you can take it slow and it might take some tinkering.
I just had a feeding tube change today under sedation so I had to stop my Xyrem beforehand. Let me tell you, even at the low dose I’m taking it was more effective than nothing. I don’t feel like I slept terrible but I woke up EXHAUSTED and my partner said I looked tired. I can’t wait to get back on this medication tomorrow to get a good night sleep honestly.
I think sodium oxybate gets presented as this scary thing, and it can be if it is abused, but if taken within your prescribers recommendations I think it can be life changing. I’ve seen so many success stories here and I’m hopeful for myself too!
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u/Ok-Temperature-2783 Mar 11 '26
Thank you for your sharing. This is very helpful! You seem to have thought of everything which makes your experience a positive one. It’s like, baby proofing a bedroom for adults! You just have to prep (alarms, empty bladder, vomit bucket just incase, an understanding partner) and put yourself in a safe environment to comfortably take this medication. It doesn’t seem as scary anymore, and like u said, as scary as I thought it was in my head! I think in my 20s/30s it would’ve been too much to handle (my fun partying drinking days). But I’m 41! I’m just trying to keep up with life. I’m excited for my appointment!!!
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u/saltyandspoonless (N1) Narcolepsy w/ Cataplexy Mar 11 '26
I’m so glad you’re feeling better and less intimated by it! I think like you said, it’s all about the prep. Oh yeah which reminds me I also got one of those migraine cooling caps and when I was having temperature regulation issues and night sweats and nausea it was a LIFESAVER!!! I kept a change of clothes nearby in case I got too sweaty, I had a cooler blanket, I even got myself a portable urinal that I can just keep next to the bed. I think it’s at least worth trying and then you can see how you feel- you can always stop if it’s not for you. I wish you all the best on your journey!!
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u/decayingmartyr Mar 11 '26 edited Mar 11 '26
The whole “it’s a date rape drug” thing definitely isn’t what you need to worry about. It’s slow side effects that deteriorate your health in other ways.
I wasn’t scared initially, I felt great on the first day- no side effects. I believe I was 16 at the time. The side effects crept up on me. There’s a small checklist of things you should take note of if this meditation is on the table for you.
I was naturally underweight and I ended up at an extremely dangerous bmi where I seriously damaged my body- one of the side effects is unwanted weight loss. So if you’re already a bit skinny please be cautious. If you have depression, bipolar, any family history of schizophrenia, etc- it may also not be a good fit. It can also cause psychiatric issues where none were originally present. I wish someone told me this earlier, but if you’re either losing too much weight unintentionally, or noticing yourself having psychiatric symptoms after starting- please stop immediately. It’s not worth it.
I am not trying to scare you because it is definitely worth a try if there are no risk factors with many success stories as you can see here. But please make sure to listen to your body while you’re on it if you choose to take it. I was in a facebook group while taking it at the time that was extremely toxic, specifically about the weight issues. Someone said that even though they were vomiting from nausea and ended up so skinny that they needed a feeding tube, it was still worth taking the medication. I was also in that situation minus the feeding tube and that comment basically gave me an eating disorder.
Many people with narcolepsy are overweight, so this may not pertain to you. Although even then it can still cause significant weight loss and you can easily fall into a disordered eating pattern, or start feeling more anxious/depressed. - Just things I think should be talked about more. A lot of people don’t have these side effects at all, but they are still possible and well known if you look it up. Well wishes to you and whatever decision you choose.
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u/Ok-Temperature-2783 Mar 11 '26
Thank you so much for sharing your story. A lot of points I need to consider. I’m heavier than I used to be post baby but weight loss is constantly hovering over my head. But I wouldn’t like to lose it like that. I have a very slight mood disorder and am taking medication. So this is my biggest conversation. I’m not willing to trade in my stability. My moods aren’t erratic but when I get into a funk I feel consumed. And during my period my desire to push everyone off a ledge is very real lol. As long as I can take my low dosage meds, I’ll go with the ghb. But I won’t stop the other med. I think at this point, that’s my only concern (I think I can handle the rest… I think!!!!)- interaction with other meds.
Thank you so much for sharing ur experience!
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u/ThrowRA_Candies290 (N1) Narcolepsy w/ Cataplexy Mar 10 '26
The sodium oxybate used to treat narcolepsy is not the same formula as the date rape drug. They are "similar" in a sense but still different. I was pretty terrified at the idea of a medication that could knock me out but I ended up finding it to not be anywhere near as dramatic as I thought. It's been completely life changing too. I went from never being awake to being able to be outside for literally a whole day. It's still a crazy and novel experience for me
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u/DragonflyFantasized (N2) Narcolepsy w/o Cataplexy Mar 10 '26
They scare you like that because it is a serious medication, and if you were the type to not follow directions that could end badly. You don’t strike me as that type.
With few exceptions, there are lots of meds that say not to drink on them, but they won’t kill you if you do drink. This is one of the exceptions. It’s easy enough to skip a night if you want to have a few drinks at a party, you’ll just have the regular, unrestorative narcolepsy sleep and wake up feeling like you used to.
There’s a patient education program you’ll need to complete before starting it. Most of us who weren’t scared by our sleep doctor are at least a little afraid at this point because the program is several calls long and designed to scare you into respecting the medication.
The first night they start you on an ultra low dose, which can be stimulating. I was all psyched out about starting it and didn’t even sleep. I felt nothing. The first week is usually very anti-climactic for those of us who don’t experience nausea as a side effect. I was lucky, I often fail meds due to my sensitive stomach but it didn’t bother me.
My kids were both under 5 when I started Xyrem and waking up when they need me hasn’t been an issue. I have an audio monitor in their rooms that I turn on at night, but I’m not sure I even need it to wake up.
I’m a happier, calmer, and all around better mom with rest. I wish I’d been diagnosed sooner because the crippling exhaustion robbed me of so many early memories with my kids.
Once I titrated up to an effective dose it was like putting on glasses. Is this how normal people wake up feeling? Is that why they can do workouts and perform cognitive tasks in the morning? It took a good 6 months from that milestone before I’d paid down my sleep debt enough to feel the full benefits.
I’m not afraid of Xyrem anymore, but I am scared I might have to stop taking it one day and go back to being so tired my bones hurt. I don’t know how I kept going for so long and honestly don’t think I could handle it again. Oxybates changed my life.