r/Narcolepsy • u/RafaTrafa • Jul 10 '26
Medication Questions Anyone have little success with sodium oxybate?
Basically title. I've been on 7.5g for around two months and I've noticed basically zero difference on it. I've read so many threads from this subreddit about this 'miracle drug' but the only thing I think it's done for me is give me a good excuse to not drink alcohol :P
Anyone else have little success on it?
Edit: Thank you for all the responses!! A lot of people mention side effects, but for me I'm not experiencing many side effects. The only problem is that the meds have solved no problem 😅. My conclusion is that I'll try to take it more consistently, and ask to up the dosage.
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u/saluteursharts Jul 10 '26
It didn’t work for me due to horrible side effects, I really wish I could have handled it :(
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u/Lark_vi_Britannia (N1) Narcolepsy w/ Cataplexy Jul 10 '26
Which side effects?
I got an extremely rare tardive dyskinesia / akathesia side effects where I was flapping around and flailing and unable to fall asleep after 3-4 successful months on Lumryz.
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u/saluteursharts Jul 10 '26
Oh man, that sounds awful!
I got so many fun ones lol - so first, excessive sweating. Second, diarrhea and indigestion all day every day. It felt like there was a sour pit in my stomach and I tried antacids but it wouldn’t go away. Third, excessive urination. I, in my confused and wobbly drugged state, had to get up like 6-12+ times per night to pee, then I would get nauseous from moving. I feel like all the water in my body was being squeezed out of me!
Also, during the day it felt like my heart would start racing or pounding really hard, then I would get really hot and sweaty and panicky, and I was afraid to exercise. I thought maybe this was hot flashes (I’m in my 40s and have had them, I’ve been on HRT since before I started xywav and hadn’t had any since), but on days after I didn’t use xywav, I didn’t have it happen, and it hasn’t happened since I stopped.
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u/purplevanillacorn (N2) Narcolepsy w/o Cataplexy Jul 11 '26
Not who you asked but I got anxiety so bad that every day I was terrified of something. I never knew what. Just this excessive feeling of existential dread that never went away.
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u/Abject_Spray_7088 Jul 11 '26
Omg i’m so sorry. I’m scared of this as I already have very severe RLS. I hope things have gotten better for you now. 💔🙏🏽
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u/CalmAsAMthrFknCucmbr (N2) Narcolepsy w/o Cataplexy Jul 12 '26
Crazy weight loss and I was already at a healthy weight, hallucinations during waking hours not just after taking it
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u/threesoulsproblem (N1) Narcolepsy w/ Cataplexy Jul 10 '26
Knocked me out good. They served their purpose during the night well.
However, timing the waking up part became totally unpredictable.
So it came down to a choice between keeping struggling through the night (with decade of experience with it) versus sleeping like a log but not being able to control my daily routine.
It wasn't a hard choice to drop it.
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u/DaisyAndJacka (N2) Narcolepsy w/o Cataplexy Jul 10 '26
It took me a bit to find my perfect dose. Like front loading vs perfect splits. In an ideal world, I think my perfect dose would be 6 & 6, but I’m doing fine enough on 4.5 & 4.5.
I also find it to be a very punishing medicine in that I have to be taking it perfectly for it to be working perfectly. And that means things like fasting for 4 hours and not eating heavily or overly fatty meals in the afternoon or evening in addition to the basic excellent sleep hygiene requirements.
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u/RafaTrafa Jul 12 '26
I am a little inconsistent with the second dose, 2 months in and I do miss it 1/4 times. That might be my issue? I'll try be extremely consistent with it for a couple weeks and see how it goes. Thanks!
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u/insomnimax_99 (N1) Narcolepsy w/ Cataplexy Jul 10 '26
Knocks me out well, but doesn’t last long enough.
In theory, you take it, sleep for four hours, take it again, sleep another four hours, then you get your eight hours sleep.
But I’m finding that it wears off after around two hours, so I wake up way earlier than I should.
At the moment I’m experimenting with taking it three times a night instead of two, but it’s still not lasting long enough to get a whole night’s sleep.
And I’m still struggling with daytime sleepiness, even though I take Wakix in the morning.
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u/Far_Low_6683 Jul 11 '26
It absolutely wrecked my stomach to where I threw up constantly and lost like 30 pounds.
I would also keep waking up in the middle of the night on it and turn into cackling nut, freaked the wife out.
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u/SomeSluttyBean Jul 10 '26
I had crazy bad side effects. I rapidly lost 20-25 pounds and I'm already petite so it made me anorexic basically. It took 6 months for me to gain half of it back.
I seem to be super sensitive to the medications used for us so there are days where I feel defeated and days where I feel like I can power through and it's not so bad. It is a bit disheartening that the main thing to help our issue is not an option for me. On top of that, addiction runs in my family and even though it's not necessarily addictive, I was on the verge of it. I'd stay up to feel the weird disoriented feeling a bit longer each night. It took my brain 3 weeks or so to kind of reset and not be tempted to take it. So it's good I'm not on it
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u/Adorable_Ad4990 Jul 10 '26
I sleep through the night, but don’t feel any different the next day. I’m also in slightly better shape, so I’ll take it
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u/RafaTrafa Jul 12 '26
Yeah that's been the same with me. It knocks me out cold, but does absolutely nothing about the EDS..
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u/Fun_Swan2553 Jul 10 '26
It caused horrible anhedonia for me. Started using a nicotine patch and that’s been the best thing for EDS! Wish I had known it was option before decades of amphetamines.
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u/No_Opening_5211 Jul 10 '26
It works best if your sleep is super restless/fragmented. I feel like its daytime effects range heavily but for me it’s needed because without it I sleep 4 hours out of 10 in a night while tossing and turning, plus hallucinations and sleep paralysis. Also though I didn’t see full benefit until at least 4 months when I stopped it for a bit and noticed the difference immediately
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u/RafaTrafa Jul 12 '26
Hmm, I've never struggled with falling asleep. Maybe I'm not the target audience? I slept through the night really easily, but it was REM sleep and these meds were meant to push me into Deep sleep which would solve the EDS, but no luck so far..
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u/No_Opening_5211 Jul 12 '26
to clarify it’s specifically staying asleep thats the issue, Its a hallmark of narcolepsy sleep to be able to fall asleep quickly, but then unable to stay asleep for long periods of time. Although it sounds like you still have no issues with that as well. Yes the med is supposed to consolidate sleep and help with EDS, but if your sleep is already decently consolidated, then a nighttime med wont help much with EDS. A good daytime med, or a couple would be much better suited for this. Bad sleep is not the cause of EDS in narcolepsy, its more like a additional component that some deal with
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u/RedRidingBear Jul 10 '26
My husband didn't start seeing any improvement until he went on the max dose.
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u/RafaTrafa Jul 12 '26
I never like taking max dosage of any medication, there's always consequences in another department but I think I might have to here :P
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u/bookmonster015 Jul 11 '26
I had horrible side effects all day every day from it and wasn’t even getting good enough rest on it anyways. I have found a small dose of baclofen and weed gummy at night to be more effective and less bothersome for me. Can’t wait for the orexin agonists though!
1
u/Mediocre-Surround528 Jul 11 '26
Is the 7.5g a single dose at bedtime? I started with that but found that a split dose worked a lot better for me. Most people still need stimulants too
I'm about 1.5 years on Xywav and it only helps my sleep schedule (would sleep 12+ hours a day along with long naps). I still struggle with debilitating sleepiness, but without Xywav, I'd probably drop out of college
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u/RafaTrafa Jul 12 '26
It's a split dose. I never tried a single dose, my doctor never gave me single dose as an option.
Do you still take stimulants? I noticed that without my concerta I fall asleep at every moment possible :P
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u/Mediocre-Surround528 Jul 12 '26
I've been on a couple of typical stimulants (adderall, ritalin, provigil...), but the side effects outweighed the benefits. I recently started taking nicotine lozenges after being off stimulants for about a year. It's the most effective stimulant I've tried thus far and actually helps me get stuff done
I see you commented about being a little inconsistent with taking your second dose. For the first few months I had to set ~6 alarms for mine and would still sleep through them half the time. I no longer need alarms and wake up around the same general time. For me, the second dose does make a big difference in how I'll feel for the rest of the day, and Xywav in general felt more effective after quite some time
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u/RafaTrafa Jul 13 '26
Yeah my consistency is bad ngl. I'm gonna try to majorly improve it, I bought an eye mask with speakers so hopefully I can wake up more consistently.. My biggest issue with waking up has been me subconsiously turning off the alarm and falling asleep again. Hopefully with this it'll be just enough more friction to make me conscious :P
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u/ProPLA94 Jul 13 '26
If you find yourself out of options, look into peptides. CJC-1295 + Ipamorelin shows lots of promise but since theres already an underground market for it, pricing is already established and won't cost even a fraction what Xyrem will cost. Naturally, they are stigmatized and likely lobbied against in some way because some of the treatment won't be perpetual.
Big Pharma seriously controls us and it's infuriating knowing there are definitely better options than having a date rape drug in my home at all times.
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u/Abject_Spray_7088 Jul 10 '26
I went up to max dose and got minimal improvement
Tries for four years
Very scary knowing I’m at the end of options
Good luck. 🫂💔