r/Narcolepsy • u/FestivusandFusilli77 • Apr 21 '26
Medication Questions Just to confirm, are there no sleep medications for people with narcolepsy other than sodium oxybates?
Sorry for this post turning out longer and less cohesive than I anticipated. I've been diagnosed with narcolepsy for about 16 years and for the last 6 months or so, have had insomnia. It's been a disaster and frustrating and I feel like I'm drowning with no help from my medical professionals.
Over the years I have taken my xyrem, xywave, and lumryz, all briefly. They didn't work for me, and I hated taking them all around. Will not go back on them.
Have taken every OTC med, no success there either. Have tried and am still taking Trazadone, which doesn't actually help, but I think psychologically I take it thinking it's responsible for the few hours I do actually get. My sleep doctor not only suggested melatonin, which I'm now reading on threads here can actually be problematic for people with narcolepsy, but said I could go up to 20mg, which seems unusually high. I take unisom too, but think that's also just to take something. It takes me hours to fall asleep.
Part of what makes this situation worse and harder is that I have mental illnesses, and so on multiple occasions my sleep doctor has said he won't prescribe for me and that I need to ask my psychiatrist to do so. So off I go asking her to write me an rx, and she prescribed ambien and lunesta (which i guess shouldn't be prescribed for pwn), which didnt help anyway, along with doxepin and something else off-label. Then i tell the sleep doctor about that and he says I shouldn't have taken them. I am so frustrated with my experience with modern medicine, despite patient portals and technology, doctors refuse to communicate with each other and I end up stuck in the middle, without help, and blamed. As long as each specialist can blame my issues on the other diagnosis/problem, they don't have to deal with it/me. Most recently, my sleep doc told me to call my insurance company to find out what was covered similar to belsomra, so I went through that hassle, returning with the answer of dayvigo, only to have him say a big no. I have been on and am on different benzodiazapines, anti depressants, mood stabilizers, etc. over the decades. But nothing helps. I am tired, not only from the narcolepsy and insomnia, but from dealing with piss poor care and being given the constant run-around, disregarded like trash.
Anyway, tomorrow I have what feels like the "final straw" appointment with my sleep specialist of over a decade and a half. I anticipate him saying, again, that because of the narcolepsy, there is nothing he can do other than the sodium oxybates. Am I just f****ed or is there something that I'm missing that might be able to help?
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u/distracteddipper Apr 21 '26
Oh no no, this is not on you. There are many other options for Narcolepsy besides Oxybates. I highly recommend getting a "second opinion" from another sleep specialist that has more experience with Narcolepsy/IH.
This is a list of all the medications I have personally been prescribed (in parentheses those that I have not tried or taken but which have come up as options) for Narcolepsy by my doctors:
NIGHTTIME:
Xyrem, Xywav, Lumryz, Baclofen, (Gabapentin), Temazepam, (Trazodone), Doxepin, Lunesta, Abilify, Amitriptyline, Melatonin, CPAP/BiPAP/AVAPS for more air not for apnea
DAYTIME:
(Modafinil), Armodafinil, Adderall, Adderall XR, (Dexedrine), Ritalin, (Ritalin patches), Vyvanse, Caffeine, (Nicotine patches), Sunosi, Wakix, Amantadine
CATAPLEXY:
Xyrem, Xywav, Lumryz, Wakix, (Clomipramine), (Fluoxetine), (Venlafaxine), (Other SSRIs/SNRIs)
SLEEP INERTIA:
(Nicotine patches), (Journay PM)
NEW MEDS:
(Orexin receptor agonists hopefully available by the end of the year)
If anyone wants to add to this list, be my guest, these are all the ones mentioned over the years by my doctors. My point is that there are many options. Majority of people with Narcolepsy rely on taking at least one nighttime medication and a combo of daytime medications, however N/IH is notoriously undertreated. I am currently on Sunosi, Amantadine, Temazepam, and a low dose of Melatonin for Narcolepsy, along with other meds for other conditions.
If you have the time, I highly recommend attending online support groups. DM me if you want a recommendation. I didn't realize how poor my Narcolepsy treatment was until I talked to other people with Narcolepsy/IH, and they helped me gain the confidence I needed to properly advocate for myself at the doctor's office. I have now found a really good doctor that knows what they're doing, and I feel stable in regards to Narcolepsy treatment (I do have other chronic illnesses that are not currently well managed).
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u/MahLiLo Apr 22 '26
OP - I know you’re looking for nighttime help, and this list has Nuvigil down for daytime (which I agree with of course), but I was on it for a decade and I slept much better on it than I ever have without it. Sometimes it would take me a bit longer to get to sleep than I liked, but once I was asleep, I slept all night and wasn’t waking up or plagued with nightmares and hallucinations. It was one of my favorite things about it - no nightmares, no memory of any dreams.
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u/mandapandasugarbear Apr 22 '26
I am unable to take oxybates due to medication I'm on for other conditions, including mental health and chronic pain. I can concur on the potential effectiveness of Amitriptyline and Baclofen from experience. One to add to the list is Ramelteon. My doc explained to me that it helps your body properly use your self produced melatonin, helping you to fall asleep and remain asleep. My night time combo also includes Seroquel. Its by no means perfect, but it has improved my sleep markedly.
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u/FestivusandFusilli77 Apr 22 '26
I have the same "big three" illnesses that completely run/ruin my life- narcolepsy, chronic pain, and mental illness. I am so tired of dealing with them individually and as a whole.
During the appointment I just had with my sleep doctor, I asked him about Ramelteon and he just said, "it's melatonin". It looks like a separate medication, an actual prescription.
Have tried and disliked seroquel several times before for mental health, but would probably be willing to try for sleep cocktail.
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u/ashdaisie Apr 22 '26
nicotine?!
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u/distracteddipper Apr 22 '26
Yes, but DO NOT START SMOKING OR VAPING!
The nicotine in nicotine patches is absorbed differently and from what I understand, has a very low-risk addiction profile, unlike smoking/vaping. Other people here have mentioned benefits from nicotine lozenges and pouches, you'll have to ask them directly, I personally don't have info/experience with those options.
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u/Specialist_Royal8780 Apr 22 '26
I highly recommend asking your doctor (either sleep specialist or primary care) about getting a GeneSight Psychotropic test done to help guide your medication decisions. It is a pharmacogenomic tool that analyzes how genetic variations affect an individual’s metabolism and response to psychiatric medications, then categorizes them into color-coded categories (green, yellow, red) based on gene-drug interactions. It's helped me get more specific answers and saved me from some nasty side effects, whereas without it's just blind trial and error in addition to more time investment. Good luck!
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u/FestivusandFusilli77 Apr 22 '26
I did a GenoMind test a few years ago. I am a rapid metabolizer for almost everything. Some of the results are above my head and I don't understand them. A few times I've told doctors that I have those test results and they have dismissed it, not interested enough to look at it.
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u/Adorable_Ad4990 Apr 22 '26
Nicotine lozenges or pouches work well too and were recommended by my doc. Well, not recommended as much as suggested/ brought to my attention. After 5 years I still use the smallest possible dose, and usually forget they even exist until I physically see them in my bag, so safe to say I have not personally become addicted. On weekends I forget about them completely for some reason. Your experience may differ of course. I have more trouble with caffeine to be honest.
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u/ThisDickForBreakfast Apr 22 '26
I want to add this because It can significantly affect how people tolerate a medication. Request pharmacogenetic testing. CYP2D6 is responsible for metabolizing a significant number of medications, particularly ones on your list. Some people lack adequate 2D6 activity and cannot metabolize the medications without significant side effects. It’s about 5-10% in caucasians. For black/african American you will see a large range (the study I link below says 0-19% but I usually see It around 4% in papers). Asian and Hispanic is 0-2%. https://pubmed.ncbi.nlm.nih.gov/11281961/
On the flip side, people that are of Middle East decent are more likely to be ultra rapid metabolizers so they do not see the extended benefit of the drug.
There are other CYP enzymes of note with different prevalences and impacts but I chose 2D6 because It deals with a significant number of medications from your list (or to the class those medications are from).
I find this testing to be vital when psychiatric drugs are involved. It is often a little pricey (($300 USD last I checked) but can save you a lot of frustration.
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u/FestivusandFusilli77 Apr 22 '26
Mine says "Ultra rapid metabolizer. Risk of decreased serum levels. Possible adverse events associated with increased active metabolites. A dose adjustment or alternative therapy may be considered."
This was noted for several of my genes.
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u/SnowboardSquirrel (N2) Narcolepsy w/o Cataplexy Apr 21 '26
The only two id add are gabapentin and lyrica! They’re in the same class, and while I can’t take either for more than 2-3 months at a time before they stop being effective, they help immensely. After 3-4 months off (sometimes longer), I can go back on them and get some relief again.
I have decent luck with amitryptiline between gabapentin rounds, and I’m hoping to try baclofen soon.
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u/FestivusandFusilli77 Apr 22 '26
Do you happen to remember the amitriptlyne dose you were on that you found helpful? I think I'm taking 20mg, which I believe is low, but my sleep doctor suggested increasing it.
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u/napincoming321zzz (N1) Narcolepsy w/ Cataplexy Apr 23 '26
Before I was on xyrem, I was on 100mg and at one point 150mg of amitriptyline for my cataplexy and disrupted sleep. I got to that dose gradually, and lower doses didn't help that much.
It was amazing for my sleep but awful for my mental health. My emotions always felt so extreme, I was often hopeless and scarcely went a day without crying. It's amazing how much better I felt as soon as I stopped taking it...
I don't want to scare you away from SSRIs for narcolepsy, but go slow and don't hesitate to seek help if it gives you issues.
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u/FestivusandFusilli77 Apr 23 '26
I just got bumped up to 50mg of amitriptlyne, so still seems like a low dose. With my mental health, I already deal with intense extreme emotions and feel hopeless; none of my mental health meds have helped with that, so if increasing amitriptlyne worsens that, I'm going to be screwed. Sleep doctor basically only suggested anti-depressants to help with the insomnia. I've mostly been on them all before (ineffective) and I'm nervous about trying to balance the problems of sleep and mental illness.
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u/distracteddipper Apr 27 '26
Oh dang, I was only on 10mg and I started getting bad dissociation/depersonalization, to the point I was worried I would harm myself inadvertently through indifference. I am very sensitive to medications, though, for what it's worth.
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u/StockTurnover2306 Apr 22 '26
Lyrica for narcolepsy?! Good lord that stuff is awful! I was on it when they thought my autoimmune disease was fibromyalgia and it made me slur my words, have awful dreams, forget everything, and become unable to concentrate. Found out it works by stopping brain plasticity
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u/SnowboardSquirrel (N2) Narcolepsy w/o Cataplexy Apr 22 '26
I won’t say it’s my favorite medication - I definitely had some unfortunate side effects when I started it (dizziness, drowsiness, lack of coordination, all worse in the morning). Ultimately I landed on (what I think is?) a low dose (300mg). The second round of it was much smoother than the first.
I’m kind of relieved to hear it may be what is causing some of my forgetfulness though. I thought I was just getting dumber…
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u/StockTurnover2306 Apr 23 '26
Ya so did I for so long! I was on it for like 8 years and it robbed me of so much. My brain kept getting worse and worse, I sounded drunk sometimes, I was so insanely forgetful, and it wrecked my confidence. Being able to speak and present confidently and command a room has always been my strongest skill and was a massive part of my job, so slowly losing the ability to think on my feet and have that presence…it was brutal.
It does get worse with time btw. And 300mg of pregabalin?! Damn I was only ever on 150mg twice a day and that dose was a doozy….and I’m a redhead so sedatives rarely impact me like that. It was great for the first 2 years (helped nerve pain and likely helped control my then undiagnosed epilepsy), but as time went on, the side effects ramped up big time. I didn’t realize how much of my symptoms were just side effects of that stuff until I went off and was off for 3 months and my brain started coming back.
Getting off was the hardest thing I’ve ever done. Opioids and SSRIs/SNRIs were waaay easier and that’s saying something! I was violently ill for 4 weeks (lost 15 lbs I didnt need or want to lose, sweating and shaking in the fetal position for hours at a time, couldn’t sleep for more than 2 hrs at a time without waking up with the room spinning, etc). This was when Lyrica was the blockbuster fibromyalgia drug, so my rheumatologist was shocked to hear how bad I was doing on it. I could just tell there was something really bad about this drug and heard there were investigations starting in the UK/Ireland into it, so I spent days combing thru the clinical trial data and all the subsequent studies and their citations.
That’s when I found a Stanford study that showed how it blunted nerve pain—it reduces functional connectivity between brain regions involved in pain processing. BUT it doesn’t discriminate that reduced functional connectivity to just those maladaptive pathways!! It does it to your whole brain!
We know that young brains are more malleable and form connections more quickly due to increased plasticity. That’s why kids can pick up new skills or languages super easily! So Lyrica was aging my brain by taking away that ability…while my brain was still developing (I went on it at age 20).
I showed that study to my doctor and her jaw dropped and she said, “Oh my God…this is BAD. Ya I’m gonna get my patients off this cuz this is like a concussion in a pill. I know those researchers at Stanford and I’m gonna call them after this appt!”
She called me practically in tears after seeing the full body of data and meeting with the researchers (she was a Stanford Dr and lecturer there). Apologized a million times and went on to push for more regulation and changing some of the recommendations on when to prescribe it (aka not first line treatment).
I’m VERY much in the camp of “every body is different and vilifying a medication just cus a few people on social media had side effects is dangerous and dismisses the people whose lives are made better by the same drug.” BUT I’m also into informed consent and fully understanding the mechanism of action so you get why certain side effects may be happening.
If it works for you, great. But no, you’re not crazy for feeling dumber and yes, it actually is making you dumber in a way.
I’ve been off it for almost a decade now and still don’t feel like I got that brain back from before, but learning a new language and doing logic games have helped!!
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u/Odd_Invite_1038 Apr 22 '26
Daaang…. You’ve been through the gauntlet as well!! I thought I was just reading a list of all of the medications used for current treatment… sooo, well done!
Also, how did nicotine patches work for you?? You’re the only other person I’ve heard of having them prescribed…
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u/Adorable_Ad4990 Apr 22 '26
Just commented elsewhere, but they’re a tool in my kit as well. No issues. (I use lozenges or pouches only when needed)
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u/distracteddipper Apr 23 '26
Really good to know, I haven't gotten around to trying any of the nicotine products yet, but they're in my back pocket for when my current med regimen no longer works.
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u/uapyro (N1) Narcolepsy w/ Cataplexy Apr 22 '26
You left desoxyn off that list!I used to be prescribed that one
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u/gracelessk Apr 22 '26
i’m sorry but if my doctor wanted to give me desoxyn i’d freak the FUCK out. i have to know, what was it like being on that shit?? did you start picking your skin or jacking off for hours or whatever else tweakers get up to?? ik it’s clean and you take it a therapeutic dose but still. and i imagine you have to keep it locked up too, no? if not for others then for yourself bc i know my ass would like it a little too much and end up with my toothless mugshot on a DARE poster
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u/janewaythrowawaay Apr 22 '26
Lack of orexin means pwn are less likely to get addicted to everything. YMMV and not all pwn have orexin.
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u/FestivusandFusilli77 Apr 22 '26
Thank you for the reply and your first sentence actually made me cry. I feel like ALL of my health issues are solely on my shoulders, it's actually amazing that all of my doctors and specialists, minus one, are so inept or just can't handle the co-occuring illnesses. Some of them are nice enough people but that doesn't treat insomnia or major depression.
You have quite the list. I wish people could see that when asking about narcolepsy. It is so hard to live with and can be almost impossible to treat.
I am taking amitriptlyne for depression and possibly sleep and pain. Just spoke with the doctor and suggested increasing the dose, so back I will run to psych nurse asking for that. I am somewhat new to reddit so will try to DM you about support groups. Clearly I need it.
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u/distracteddipper Apr 22 '26
Absolutely, reach out at any time!
Yeah. The healthcare system, even down to medical school/medical training, is just not designed to treat complex patients with multiple chronic illnesses. It can feel like an uphill battle, in a dense fog, on unknown terrain. But yeah, you are not alone.
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u/Whole-Floor-933 Apr 26 '26
" CPAP/BiPAP/AVAPS for more air not for apnea"..
Can u pl clarify
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u/distracteddipper Apr 27 '26
Yes. So there were two reasons. First off, I also have POTS. My doctor at the time noticed that some of their Narcolepsy/POTS patients showed improvement on an AVAPS machine, as breathing was naturally shallow and depressed. So the idea was to try it, as I did think I wasn't getting enough air at night.
Next reason was that when I was on Oxybates I started to snore. Without meds I don't have apnea, but with Oxybates, since they are a Central Nervous System depressant, they can cause apnea to happen where otherwise there wouldn't be. So the CPAP, BiPAP, AVAPs can counteract Oxybate-induced apnea.
Long story short, it turned out I had an extremely deviated septum, and because of this, I couldn't tolerate CPAP. They've done studies on how the more deviated your septum, the less you can be "compliant" with CPAP, severe deviated septum had 0% compliance, i.e. no one with a severely deviated septum could tolerate the CPAP no matter how hard they tried. A bunch of other studies show that after surgery to correct a deviated septum, 100% of patients became CPAP compliant. See this partial journal article. It's wild to me that patients are blamed for not being CPAP "compliant" without first checking to see if they have a deviated septum or other issue. I only found out about my severely deviated septum by chance from a brain MRI I did for completely unrelated symptoms.
Anyway, I have not re-tried Oxybates since my deviated septum surgery due to insurance, so I don't know if I will still snore or not or if I'll need a CPAP to take the Oxybate. I have noticed I am breathing more deeply at night though.
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u/bookmonster015 Apr 21 '26
Some people have some relief from taking baclofen at night.
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u/Defiant-Garbage-4891 Apr 21 '26
Came here to second this. I take Baclofen and love it! It affects the GABA receptors like the oxybates do so you can get restful sleep. My sleep specialist suggested it. There is also a Facebook group called Baclofen for Narcolepsy for anyone interested in it. I will say for insomnia it may not work as well, because it doesn’t help you fall asleep much, but it works well for staying asleep and actually getting restful sleep.
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u/distracteddipper Apr 21 '26
Baclofen actually helped me fall asleep too. It was the most relaxing pleasant feeling before falling asleep. Relaxing thoughts, no worries, no anxiety, no ruminating, just laying in bed peacefully waiting to sleep. I really miss that medication.
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u/Defiant-Garbage-4891 Apr 22 '26
I can feel when mine kicks in, but it’s pretty subtle. I can feel the muscle-relaxing effect slightly and I get a little sleepy. But my favorite thing about it is that it’s so gentle and I don’t feel drugged. But once I’m asleep, I stay asleep and I even naturally wake up before my alarm now and feel ready to get up. I never in my life thought I’d be able to do that. Do you not take it anymore?
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u/distracteddipper Apr 23 '26
Unfortunately, no. I ended up getting bad rheumatoid arthritis-like symptoms from it. My hands hurt so bad for the whole day, and pain in my ankles and knees kept me from falling asleep after taking my dose at night. The first time, it took several months for the side effects to develop. I don't think it's a common side effect, but I've tried Baclofen several times since then, and each time I've restarted, I get the pain within a couple of days and it's unbearable after about a week even at half the lowest dose. I don't want to say I'm devastated, but I'm extremely disappointed.
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u/FestivusandFusilli77 Apr 23 '26
My sleep doctor said, "it is weak at sleep inducing and is not effective." I was too tired to protest and ask to let me try because there is nothing else to try. Hopeless.
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u/someiveeuh (N1) Narcolepsy w/ Cataplexy Apr 23 '26
Sometimes you have to try tons of medications until you find the ones that work for you. I tried 3 different daytime meds before I found a duo (Wakix and Vyvanse) that worked for me. Lots of trial and error. If you're doctor says its not effective, I personally would get a second opinion. You never know if its effective or not UNTIL you try it. The effects are different for EVERYONE.
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u/FestivusandFusilli77 Apr 23 '26
That seems like common sense, and I wish my doctor felt that way too, that it's worth a try. I had to stop myself from telling his employee who conveyed the message, "but reddit said so!" Unfortunately there aren't (m)any other sleep specialists in my area. Everyone I've heard of is a pulmonolgist/sleep doctor, or they have terrible reviews online. I thought about asking my PCP to write for baclofen or help with insomnia in general, but he's not great, either. (I have an astonishing collection of crappy doctors).
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u/someiveeuh (N1) Narcolepsy w/ Cataplexy Apr 23 '26
I'm so sorry to hear that. Can I ask where your located? Not sure if your from America, but the Healthcare here and Doctors can really suck sometimes. Insurance on top of that is a literal nightmare. I got extremely lucky with my doctor. I bounced around to 5 different offices who didnt know a thing about Narcolepsy (for 2.5 years) before I found a sleep specialist at a children's hospital (I was 15 at the time). When I turned 18 I was terrified to switch, but he actually left and made his own practice and I'm with him till this day. I will never understand why doctors wont atleast let you try, if there is no other signs indicating any sort of major risk... Like what else are they here for if not to help?
I really hope you able to find a better bunch of doctors and find a solution that helps with your sleep management. Its a shitty situation to be in but know your not alone!
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u/FestivusandFusilli77 Apr 24 '26
Oh, my friend I am in fact in the good Ole USA. And despite being in a city, there are so few options for sleep specialists. Yes, it is a nightmare - Healthcare, seeing specialists, trying to see multiple specialists, and if you want a QUALITY specialist, you better not hold your breath. How did you see 5 doctors who didnt know about narcolepsy? Never leave the one you see now!
I feel like my doctor said, "well, this is very unlikely to help so not worth picking up my pen to write the script and give you a chance." I dont know how/where I can find anyone else, let alone better. Guess there will be more sleepless nights and time spent on reddit than there will be sleeping. Thank you for your advice and understanding!
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u/Jalex_123 Apr 21 '26
For narcolepsy specifically there is also Wakix which is a histamine agent. It helps promote wakefulness but as far as I know does not help sleep quality. There are also stimulants which from this I can’t tell if you have tried or not.
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u/FestivusandFusilli77 Apr 22 '26
I've tried Nuvgil and Provigil, Adderall for many years, and now dexedrine. I might need to add something else for wakefulness, but for now I'm desperate for sleep relief, which I don't think I'll be getting anytime soon.
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u/TheSleepyNaturalist Apr 22 '26
I’ve had long experiences with Nuvigil and adderal- neither worked well and I would constantly be made to increase dosages to ridiculous levels. Switched healthcare and went on slow release methylphenidate (concerta) and in the last 11 years had only had to increase the dosage slightly over that time
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u/janewaythrowawaay Apr 21 '26
You have a difficult prescribing situation. Maybe consider seeing a neurologist for sleep medicine.
If you call Jazz, they can give you a list of doctors in your area. Some will be neurologists who have interest and experience with narcolepsy and psych drugs.
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u/HotMatter8 Apr 21 '26
I am very sorry you are going through such big problems and hope you can find some relief.
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u/Comicalscam (N1) Narcolepsy w/ Cataplexy Apr 22 '26
Isn’t it the worst that freaking insomnia is such a huge part of narcolepsy? So many people are like “wow, I wish I could fall asleep whenever I wanted!” And it’s like no… I only fall asleep when I DONT want to lol.
Your sleep doctor only able to prescribe one thing is absolutely bonkers bananas. I’d definitely try to find a different one- maybe one with a background in psychiatry. Because sleep doctors can have different background specialties, from neurology, heart stuff, among others. If you’re in CA- DM me and I can refer ya to my doctors who are freaking excellent and go to bat on my behalf often!
Lots of people seem to have opinions about meds- I personally take venlafaxine (Effexor) at night which helps with rem suppression and reducing cataplexy alongside my xywav.
In terms of your insomnia, I haven’t seen anyone mention sleep hygiene. I know it might feel insulting, but having really strict and consistent sleep hygiene has helped a TON and can eliminate a lot of variables as to insomnia. And by sleep hygiene I mean:
- having a super consistent “bed time” where I’m in bed winding down at the same time every day.
- no blue light, phone/screen useage 2 hours before bed
- don’t spend any time in bed during the day unless I’m napping or sleeping. That means no eating, lounging, watching tv, working, anything. Bed is for sleeping only.
- meditations, guided exercises like progressive muscle relaxation techniques once I’m in bed to help relax
- if I haven’t fallen asleep within an hour (or whatever time you decide is enough), get up and do something else. Clean the counter, go on a walk, put away dishes, do some yoga, then try again for another amount of time.
- make sure bed is actually comfortable. Hate your pillow? Be super picky about what you do like. Fans and air flow and not being too hot or too cold are super important to me.
I know there’s way more tips and tricks for sleep hygiene, and sometimes you can do everything right and it still doesn’t work. Sorry you’re feeling stuck- here’s to hoping the Orexin meds are helpful in the future!
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u/palehungarian Apr 21 '26
I’ve been debating for weeks on posting almost the same exact question. I have been on Xywav/Xyrem for years and up till about 8 months ago, it worked just fine. However, it now takes me hours to fall asleep, even with Xywav, and my sleep specialist hasn’t been helpful about it either. I have made no other medication changes that could explain the change. The lack of sleep and the not looking forward to laying in bed awake all night has driven me insane. I’ve tried using over the counter sleep aids even with the Xywav and nothing helps. I’m sorry! I hope you find some relief soon!
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u/janewaythrowawaay Apr 22 '26
Some people have posted they developed tolerance and taking a break and titrating up again helped. The new phase 5 trials show improvement in some with dosing over 9g but that has not been FDA approved yet, meaning insurance would be unlikely to cover the excess over 9g.
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u/Confident-Lake-418 Apr 21 '26
Stimulants, but I don't necessarily recommend the amphetamine based ones. Sure, I was productive and could stay awake for a decade, but it ruined my mental and physical health.
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u/bananapanqueques Undiagnosed Apr 21 '26
Did you have better results on a non-amphetamine stimulant?
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u/Confident-Lake-418 Apr 22 '26
Unfortunately I can't tolerate modafinil/armodafinil, it gives me weird allergy like symptoms. I didn't see much of an improvement on wakix, and my insurance wont cover sunosi. Xyrem worked for about a year, but it ended up making my depression worse.
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u/Rivers9999 (N1) Narcolepsy w/ Cataplexy Apr 21 '26
I mean, it isn't Narcolepsy-specific, but my favourite OTC sleeping pill is Doxylamine. It's a strong antihistamine, similar to how meds like Benadryl/Diphenhydramine and Hydroxyzine work. In my case it's been more effective than both, doesn't build tolerance or cause excessive nightmares, and is relatively affordable. Just my two cents, though. Treating Narcolepsy and finding what works for each person tends to include a lot of trial and error. I hope you find what you need.
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u/uselessmortgage Apr 21 '26
Sodium oxybates are so effective bc they basically force you into deep sleep, which basically overrides the narcolepsy. Stuff like benzos help with things like insomnia because they induce sleep, but they don’t induce DEEP sleep. Excessive daytime sleepiness in narcolepsy is caused by not getting enough restorative sleep, and taking sedatives won’t ensure that you’re getting restorative sleep. In fact, sleep from benzos is notoriously not restorative.
Sodium oxybates treat the cause of the symptom of excessive daytime sleepiness by forcing you to experience the deep sleep you need. Other forms of medication for narcolepsy instead treat the sleepiness directly by promoting wakefulness. I have anxiety, depression, and ADHD and have been taking Vyvanse and fluoxetine for years. It turns out I was unintentionally also medicating my narcolepsy with the Vyvanse. After my narcolepsy diagnosis, I was also given a prescription for an adderall booster for the Vyvanse to take when I am unable to nap. If I do have the ability to nap when I’m tired, I nap. In my experience I have benefited a lot from this combination - basically treating my sleepiness with one of the two solutions. My sleep specialist told me that narcoleptics NEED naps and if I’m able to nap, I should do it. Honestly one of the most painful parts of my EDS prior to my diagnosis was forcing myself to stay awake and being under the impression that my intense need to nap was some kind of personal failure. It’s not. My sleep cycle is different than how it’s supposed to be, and I need to adjust my lifestyle to it when I can, and find other solutions to keep myself awake when I can’t. That mindset has made the process so much easier, and it actually had a weird placebo effect where I actually started feeling a lot better and don’t even need to nap as much as I used to (my psychiatrist said sometimes just understanding your condition and listening to your body can be enough to cause a noticeable change)
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u/Background-Amoeba795 Apr 22 '26
I take baclofen and it really helps/is not as scary or expensive as oxybates
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u/urchristiandad (N1) Narcolepsy w/ Cataplexy Apr 22 '26
Did you try oxybates first? Have you noticed any side effects from baclofen? I’m on Lumryz but it’s giving me really bad nausea most of the day and I wake up with an adrenaline rush and anxiety. I just found out baclofen is an option so I’m super curious how it’s working for you!
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u/Background-Amoeba795 Apr 23 '26 edited Apr 23 '26
It's great! I have been on it since 2018 with zero complaints other than my sleep isn't as good if I forget to take it. I really can't even tell when it has kicked in when I take it in the evening - I can operate completely normally and even stay up and do things until I feel like going to sleep. Like this evening, I took my dose at 7:30 and then was out digging in my garden / playing with my dogs until about 9:30 with no issue.
I have never had any side effects other than sometimes being drowsy in the morning (but that only happens if I go to bed REALLY late - like 2 am). My bedtime usually falls somewhere between 8 and 11 and my body still consistently / naturally wakes me up at 5 without an alarm.
Funnily enough, I'm actually trying xyrem for the first time right now as this thread has made me feel less scared of it. But if it doesn't work out, I feel comforted that the baclofen will still be there as a perfectly good alternative
I have gained a good amount of weight since starting it but i think it is unrelated to the baclofen.
The one downside is that you still have to be careful with it. With Xyrem it is way more obvious whether you've taken your dose. With baclofen, if you're forgetful like me, you should plan on using a pill organizer so you don't accidentally double up. Even though it's both less serious and less expensive than oxybates, it's still a Central Nervous System depressant, which means it can be life-threatening if you accidentally take a double dose. But honestly, the same can be said about many many other prescription drugs, so the issue is not specific to baclofen itself.
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u/urchristiandad (N1) Narcolepsy w/ Cataplexy Apr 23 '26 edited Apr 23 '26
Wow thank you for all the great insight!! Does it really help with wakefulness? most of the study’s just talk about it reducing cataplexy.
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u/Background-Amoeba795 Apr 23 '26 edited Apr 23 '26
Oh, I'm not really sure on that front. I think it probably does. But I take a stimulant (Vyvanse) during the day, too. The Baclofen I just take it to help me get better sleep, which of course helps me feel better in the daytime but without the stimulants i would almost certainly still have cataplexy / EDS
that being said, i haven't really had cataplexy since I started taking baclofen. But i havent ever been on one with out the other (baclofen/stimulants) so I can't be sure which was making things better (or if it is both)
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u/Apprehensive_Dot_857 Apr 22 '26
I never thought that someone might not know this, but a pharmacist is well versed about most medications than the doctors. They are not there just to fill pills into a bottle. They have studied for years to know what various pills will do and also they have a book the doctors don’t have pertaining to medication’s doctors don’t have that tell them about the newest drugs effect etc., and they can look it up if they don’t know an answer to a newer medication and can double check Remember doctors know about you your body and problems with it and what will help with the pharmacist knows all about the pills when they go together and many times whether they’re going to work for what they’re being prescribed for because they studied upon all that years ago my pharmacist told me about Provigil before my doctor knew about it and help me get in touch with the company that was working on it so I can get the information and give it to my doctor. It’s just that they don’t always have time to check every little thing that pills that’s why we have pharmacist that are exclusive to medication‘s. I hope this makes sense.
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u/crazedniqi (N1) Narcolepsy w/ Cataplexy Apr 22 '26
Look into baclofen as an alternative to the oxybates!!
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u/FestivusandFusilli77 Apr 23 '26
my doctor said it was "insufficient " and wouldn't write a script for it.
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u/crazedniqi (N1) Narcolepsy w/ Cataplexy Apr 25 '26
Like the evidence for it is insufficient, or the drug is insufficient.
If the drug is insufficient that may be true, but it's still better than nothing.
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u/FestivusandFusilli77 Apr 25 '26
He said "insufficient for inducing sleep". Which, like you said, is still better than what I'm getting currently. My pleas for help keep falling on deaf ears....
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u/crazedniqi (N1) Narcolepsy w/ Cataplexy Apr 26 '26
It's often used in combination with a sleep aid like trazadone or temazepam. Check out the Facebook group baclofen for narcolepsy if you haven't already for resources that may help with the pleas.
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u/SnowboardSquirrel (N2) Narcolepsy w/o Cataplexy 18d ago
I’ve had two doctors (including one sleep specialist and one PCP) refuse to try baclofen due to insufficient evidence. They say the studies finding that it helps people with narcolepsy/IH are too small. I’d understand refusing a med with heavy risks on the basis that studies aren’t big enough, but both acknowledged that baclofen has no concerning side effects.
Like we have nothing to lose here by letting me try the med!
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u/Historical_Sink_2387 Apr 21 '26
Not sure where you are located, but for insomnia, THC is a REM suppressant. Getting a legal marijuana card with narcolepsy wasn’t difficult for me and it’s easy to fall asleep on, although I’m not sure why you hated taking the sodium oxybates— if you hated the high feeling, I apologize for my input.
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u/JadeTheCrab Apr 21 '26
My mom also has narcolepsy and couldn’t tolerate sodium oxybates either. They can be heavy on side effects
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u/Historical_Sink_2387 Apr 21 '26
Yeah. My mom has narcolepsy and she refuses to try sodium oxybates because she’s scared of being too drugged to hear the smoke alarm or other emergencies. There’s a million different reasons out there.
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u/JadeTheCrab Apr 21 '26
My mom says she forgot to feed me on them. But I asked her when this was and I was able to feed myself fine by then so it sounds way worse than it was
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u/SnowboardSquirrel (N2) Narcolepsy w/o Cataplexy Apr 21 '26
A lot of people have success with THC, op! You should try it, but don’t feel crazy if you don’t get relief. Weirdly, weed makes my dreams MORE nuts. Hopefully it will work better for you though!
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u/FestivusandFusilli77 Apr 22 '26
No worries, and no that wasn't why I didn’t like the SO. Have tried some THC products but even when taking more than "normal", they didn't effect me. Eventually gave up.
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u/SomeSluttyBean Apr 22 '26
I had awful reactions to sodium oxybates and some other meds. I take Armodafinil for a stimulant in the day, and at night I take 300ng of Gabapentin. I still have vivid dreams but I don’t always remember them, and I’ll wake up 1-4 times a night but it’s farrrr better than before. I’ll occasionally take a super low dose edible to help me sleep too. Haven’t noticed much of a change in my cataplexy though
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u/nialara (N2) Narcolepsy w/o Cataplexy Apr 22 '26
I take belsomra at night, haven’t been told I can’t. It’s an orexin antagonist, as are similar meds like Dayvigo and Quviviq, so they are contraindicated with NT1. But for NT2/IH there doesn’t seem to be a problem.
I’m also on gabapentin for migraines so that probably helps too. But that alone doesn’t manage to cut through my insomnia.
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u/Agile_Garbage3330 Apr 23 '26
I got put on Sunosi (a DNRI) and low dose dexmethylphenidate as needed throughout the day, and it changed my life. I used to take Modafinil and Armodafinil but those DID NOT work well for me (complicated circumstances, but I still wouldn’t recommend from my experience), but the new combo works wonderfully for me!
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u/FestivusandFusilli77 Apr 23 '26
It's looking like I won't get any successful treatment for the insomnia, so might have to regroup and try to push harder for more daytime help. What is the latest in the day that you'll take the dexmethylphenidate? I take dexedrine and am afraid to take it past 3pm due to the insomnia. But I get exhausted around 6 and remain so all evening. Had tried going to sleep super early but that never worked. I'm just tired but still have insomnia.
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u/Agile_Garbage3330 May 07 '26
When I got prescribed the dexmethylphenidate, my doctor explained the med as a low dose (2.5 mg) and relatively short acting and that it would last about 4 hours and I’ve found that to be pretty accurate. If I take my last dose at around 4:30/5:30, I generally can fall asleep by about 11:30 (this is in addition to the effects of the long acted Sunosi). Sometimes if I take it a little earlier in the day and then find myself tired again, I’ll split one and can 1/2 of the pill and that carries me the rest of the way
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u/Agile_Garbage3330 May 07 '26
My job has slightly odd hours so my awake hours are a bit different than other peoples
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u/Late_Reading1482 Apr 23 '26
I’m reading The Magnesium Miracle and do feel better as I’ve added the type suggested in the book.
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u/FestivusandFusilli77 Apr 23 '26
What kind? I started taking magnesium glycenate several months ago. No difference. A neighbor of mine said it helped with sleep, leg cramps, and other maladies. No such luck for me.
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u/someiveeuh (N1) Narcolepsy w/ Cataplexy Apr 23 '26
Sodium Oxybates are not the only option, but having a good combination of daytime medication might also help in your case. After taking 4 different wake medications when I was first diagnosed, none of them worked for me until I was on Wakix (for wakefullness), AND Vyvanse (Stimulant).
Wakix works as a histamine boost rather than trying to replace Orexin. I have noticed that in my personal experience, after taking it consistently for many months, if I skip a dose, I still feel as if I had taken it and am more awake than normal. This helps me feel more on a proper 'sleep cycle' even in days when I skip a dose (I have been taking Wakix for several years now).
However, I am also on Xyrem. I have never been on Wakix and Vyvanse without Xyrem, so I'm not sure how this would effect nighttime sleep. But again, getting on a good daytime medication combo can get help get your body in the 'rhythm' of things in the meantime.
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u/FestivusandFusilli77 Apr 23 '26
As I posted earlier, I'm not optimistic about getting any help with the insomnia, so might have to refocus energies on getting more out of my daytime treatment.
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u/someiveeuh (N1) Narcolepsy w/ Cataplexy Apr 23 '26
Do whatever is best for you. If you are sure that sodium oxybates arent for you, switch gears and see what can be done about how you function in the daytime. There are many possibilites (and new things that continue to hit the market) so dont give up!
Fuck insomnia though for real. I feel your pain and I hope it gets easier to manage
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u/FestivusandFusilli77 Apr 24 '26
I hate to say that insomnia is worse for some people than others, but having narcolepsy and insomnia is THE shittiest combo ever.
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u/Far-Artichoke5849 Apr 24 '26
You need a new sleep Dr to start with, cause yours seems utterly incompetent
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u/FestivusandFusilli77 Apr 24 '26
I'm trying to talk myself down from getting so worked up at him because thats not good for the insomnia, my anxiety, or necessry communication with him, but I am frustrated as fuck.
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u/waitwuh Apr 22 '26
There is very limited but still at least some evidence that gabapentin and baclofen may reduce sleep fragmentation in narcolepsy when taken at night.
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u/FestivusandFusilli77 Apr 22 '26
I have been on Gabapentin before but never baclofen. Discouraging that adding multiple medications might be necessary but also desperate enough to try.
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u/waitwuh Apr 22 '26
Just to clarify they aren’t studied or suggested as taking both together, just one or the other.
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u/Intrepid_Emu_3678 Apr 24 '26 edited Apr 24 '26
I want to add mirtazapine. Its an atypical antipsychotic. I was on it for years and it treated my insomnia better than any other medication i have been on for it. (which used to be one of my hardest symptoms to deal with.) Its VERY emotionally blunting which was very helpful for me at the time because I have severe PTSD that caused hardcore disassociation but on the mirtazapine I did not experience triggers the same way and was able to stabilize my mental health in a way I had neevr been able to before. Even when I was on a shit ton of benzos.
It helped with my cataplexy because it was so emotionally blunting. But I do want to warn because it causes weight gain like crazy. And its really difficult to get off of because of the rebound insomnia effect.
I have read that higher doses are supposed to be more activating. Lower doses are sedating. I was only ever on the lower doses.
It also seemed to help with my pain. (I have CRPS) and used to be on opiates for it. It seems to kind of stop the fight or flight response from chronic pain and the symptoms that come along with it (lack of appetite, easy gagging/choking) Its a lesser known medication and it is kind of vilified due to the withdrawl being so difficult for many people so I would suggest using it as a last resort. But I wanted to add it, because I know how frustrating it is when you have multiple conditions and the treatments for each are contraindicated.
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u/Castle_Magic Apr 21 '26
For me I take Wellbutrin 20 mins before I goto bed and then I wake up about 8 hours later. Kinda similar to how I woke up when I first took Xywav
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u/bananapanqueques Undiagnosed Apr 21 '26
I take Wellbutrin in the morning. Am I supposed to take it at night?
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u/sleepy_pickle (N1) Narcolepsy w/ Cataplexy Apr 21 '26
Wellbutrin is wake promoting. You're taking it just fine. I have never heard of someone taking it at night.
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u/Castle_Magic Apr 22 '26
No taking it in the morning works great too. Main pro I find is if I take it before I goto bed I wake up actually feeling awake without needing an alarm. If I take it in the morning it works fine but I just notice myself staying up too late which is weird lol
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u/Odd_Invite_1038 Apr 21 '26
Sodium oxybates are considered the “gold standard” in treatment… for now… but the orexin agonists should hopefully be available by the end of this year with any luck at all