This is more of a rant than a medication question, just wondering if anyone else ever experienced what I’ve been doing lately.

So I was diagnosed recently and started modafinil. I felt awesome at first I was like having the best time of my life, but then I started to get used to it. Now, I almost feel worse than when I was unmedicated. The meds are great for my work hours, they definitely help me there a lot, but when I get home I’ve been needing to nap every evening whereas before I could push through it better. It’s like now that I’ve experienced truly being awake, my baseline feels so much worse and more impossible to fight.

My doctor has been great at working with me and tweaking things, but we’re just not there yet. I’ve even considered going off it just to get my evenings back, but work was just too hard that way.

I just would like to be awake for like 12 hours at a time is that too much to ask! 😅

Thought I'd show off my setup in hopes it inspires those of us that can still drive. I have N2 and often need a place to nap during my lunch break at work or in between classes or a long drive, so I got a Honda CR-V which has back seats that can fold flush with the trunk of the car, and I put a 4 inch mattress topper in the back with a comforter. If the weather permits, I have dark mesh sleeves that can go over the windows so I can keep them open with little to no visibility (or bugs) and a magnetic mosquito net for the sun roof and back trunk if I'm camping.

Since it's just a mattress topper, I can just fold it in half when I want to flip the seats back up and it takes up very little space.

TLDR: Look for car camping tips for convenient & safe naps

I have NT1 with cataplexy. Recently formally diagnosed due to my dr dying in the process around 10 yrs ago and then a lack of care. Likely it’s been lifelong and it just got worse in waves.

I’m training my service dog now to alert me in a sleepy spell essentially. So I’m asking for a service animal to come to work. Not just for NT1 but other reasons also.

But damn. I struggle to come to work. Every day I’m terrified to drive. Sometimes I’m carpooling or uber. I do drive when I’m confident that I can. Not long drives. But driving is part of my job.

I do case management for homeless veterans and it requires field based visits at times.

I’m afraid to ask for more than the SD as they’ve granted me a standing desk and 3 days a month work from home (that I basically don’t use bc bad timing always) but I want to know what others have done so maybe there’s something I might benefit from. None of my accommodations have been for NT1. I’m afraid if they were to know in HR that I’d be let go due to driving risks.

I don’t think I’ll be able to work much longer. But I’m trying my best to do this and start my own business for long term income as well as finish my BSW and MSW to hopefully be a LCSW before I give up working. Then I’d be able to practice on a very selective basis, around my schedule and needs. But god. I have a few years to go. Part of me thinks I need to find closure that I won’t be able to get there. Primarily my school is entirely online except for clinical hours which I won’t have until next year.

Thoughts appreciated.

There have been a few questions recently about wearable sleep trackers. Here is a post from another sub with research comparing wearable sleep trackers to actual sleep study results. The post itself is about the Google Pixel Watch, but the OP links to his website showing data from all brands.

https://www.reddit.com/r/PixelWatch/s/3KJwt02yhE

Hello :)
I’ve been diagnosed with type 1 narcolepsy and been on medication for a few months now. I started out with the generic version of methylphenidate and went up to 54mg but it did nothing for me. My doctor then recommended me to switch to the original version (Concerta) to see if it would be better. Spoiler alert it wasn’t at all and so he prescribed me to switch over to Vyvanse. He explained to me that there is no true conversion for the dosage of these two medications but prescribed me to start off with 50mg of Vyvanse and to go up
from there if it’s not enough. The thing is that when I went to pick up the pills the pharmacist was very wary and told me that it’s a way too strong dose to start with and that it could cause severe heart palpitations, and tachycardia. Unfortunately I am still in school and to be able to focus throughout all my classes during the day I wanted to take a medicine that would actually keep me awake so I still took the 50mg. Now I’m lowkey very scared to take them and so I wanted to know if anyone else had a similar experience with Vyvanse. Thank u in advance!!

Hey y’all! I’m wondering if anyone else has had this issue with the mouthpiece & are taking Xywav. I am starting Xywav, low dosage and I also have sleep apnea. I use a mouth guard as my current treatment, I’ve had it for just over a month now. The only issue with the mouth guard is if I have any kind of congestion I wake myself up not being able to breathe properly. I’m terrified that I’m going to overdose or having trouble breathing and my partner is going to wake up to me dead. I’m trying to work through my anxiety AND I really want to sleep.

Backstory - My narcolepsy is lack of sleep. During my first appointment with my sleep specialist she asked about sleeping and I said, I wake up 6-15 times a night and yes, I dream all the time. I literally “fall asleep” into a dream. A lot of the night it’s as if I’m daydreaming. But I’ve been like that most of my life (I’m 41 now) so I figured it was normal. At the end of our first appointment she said, “So I’m pretty sure you have narcolepsy.” Ummm…come again? Sleep study showed severe narcolepsy, like 6% was deep & REM while the other 94% was “wakeful sleep” and I have sleep apnea (that’s a whole other thing). Never in a million years would I think I was narcoleptic!!

Any thoughts or advice?

I was on Venlafaxine for years for mental health reasons. I didn’t help with my cataplexy, unfortunately. I had an episode of hypo mania, so I was switched to Seroquel. I’ve been really struggling with sleeping now. I was up for almost 24 hours straight. It doesn’t matter how exhausted I am, I cannot sleep. I asked my psychiatrist today if it was possible for the new meds to do it since I read that a paradoxical effect can sometimes happen. All she said was “no” and that she was upping the dose because it’s a sedative. I don’t know what else it could be. That’s the only thing that’s changed. I’m so tired and overstimulated. I don’t know what to do.

Hi everyone! Currently going through some treatment changes and just looking for some positivity, if it’s out there. A little bit of background:

I have had lifelong narcolepsy symptoms (EDS, sleep inertia, what I now know is cataplexy, brain fog, memory lapses, etc.) but, for a variety of reasons, was never taken to see a doctor or able to get evaluated until I aged out of my family’s health insurance and got on an independent health insurance plan through my job in my 20s.

It’s been kind of a rollercoaster ride getting here—when I got my own health insurance, I was having some ongoing symptoms (some consistent with narcolepsy, some not) and it took 2-3 years of testing and fighting to be taken seriously before I was diagnosed with autoimmune conditions (SLE and Sjögren’s). At the time, we figured the fatigue and sleepiness I was having were just related to that. My PCP chalked the brain fog and inability to focus up to ADHD, and started me on Adderall, which actually did help some—I vividly remember the first time I took it, and how my favorite thing was that my brain felt “awake” for the first time in my life.

After a year or two of autoimmune treatment, some of my overall symptoms improved. However, the EDS, brain fog, sleep inertia, sleep attacks, etc. were still happening—I kept asking “If my autoimmune medications and Adderall are supposed to be solving the issue, why am I still so tired and unfocused and falling asleep all the time?” I actually stumbled across a TikTok of a girl talking about her experience with narcolepsy, and it was like she was describing my exact life. The more I looked into narcolepsy, the more it seemed like something that could apply to me, so I brought it up to my neurologist.

I live in New Mexico, and we’re low on doctors (especially specialists). It’s pretty common to have to wait 10-14 months to get even an initial consult/doctor’s appointment. When I started suspecting narcolepsy, I actually just went to Colorado to see a sleep doctor, because they had openings available, and it was going to take 4-5 years to get the same care in New Mexico, all things considered.

My Colorado doctor was, and has been, excellent. She took me seriously immediately and advocated for all my testing and insurance struggles. I got diagnosed with Narcolepsy Type 1 in February of this year, which was a huge relief, as I’ve always felt like I was just lazy, unmotivated, needed more discipline, etc. I was very relieved to have an answer explaining all of my weird “leftover” symptoms. We ended up keeping me on the Adderall, as I was tolerating it pretty well. We briefly tried substituting it for modafinil, but I had a bad reaction to it, so I got back on Adderall and we added Sunosi into the mix, which has also been good.

My current issue is that my nighttime sleep is awful—it’s so fragmented, I never feel rested, I frequently wake up at night, and the morning sleep inertia is the hardest part of my day, every day. We’ve done a good job finding a medication mix that keeps me awake during the day, and it works about 60% of the time, but the nighttime (and being able to wake up and get to the day in the first place) is an enormous struggle at the moment. I’m sure the autoimmune stuff isn’t helping.

My Colorado sleep doctor has said a couple times that Xywav would probably be the best treatment for me, but they can’t prescribe it across state lines, and they want a New Mexico provider to be the one prescribing it, so I can have someone close by to monitor any potential side effects. I got lucky and got an appointment with a New Mexico sleep doctor at the end of September, so for the last eight months, my Colorado doctor and I have been trying various medications to keep me awake during the day while we wait for the September appointment and transfer of care.

I’m struggling pretty badly—I can’t get up in the mornings, will sleep through alarms, am constantly late to work, need naps throughout the day (sometimes even the Sunosi and Adderall aren’t enough), am progressively falling behind on projects, and my energy levels are pretty nonexistent most of the time. My boss has been semi-understanding so far, but it’s definitely not sustainable.

I’ve looked around this subreddit some, and it seems like a lot of people have bad experiences and side effects with Xywav. My Colorado doctor also did say that it’s a high-risk medication, so I’m not sure what to expect. I know that I won’t really be able to tell until I start taking it, but has anyone had positive experiences with it?

My appointment is on the 24th, and it kind of feels like everything is riding on it—I need to get some genuine sleep and be able to function during the day. I’m worried that if something doesn’t give, I’m going to lose my job, and as a result, my health insurance. I hate having all my eggs in one basket, but if I have a bad reaction to the Xywav, I’m not really sure what’s left.

This is all pretty new to me, so I guess I’m just looking for some reassurance? And maybe some information about what the process is like, how long it takes from prescription to getting the actual medication, etc.? I’ve heard a lot about the Xywav bad, but does anyone have any Xywav good they’d be willing to share? If I’m being completely honest, my dream is that I get the medication prescribed, it helps me get on a more regular sleep schedule, I start to feel better, and then everything on the work and personal front can stabilize a little bit, but I’m not sure if I’m expecting too much. There’s so much in my life being impacted by the fact that I can’t sleep or rest normally.

I’ll definitely talk to my doctor about risks, alternatives, etc., but if there’s anyone out there who has a “Xywav is a wonder drug” story, I would be very grateful to have some hope to hold on to.

I'm actually so upset. I started Xywav in February, my senior year of HS. Everything was fine, I had finally adapted to a routine and I'd wake up for my second dose 3hr later every single time. But ever since moving to college last week, it has been absolute hell. No matter how many alarms I put or how loud, I will not wake up consciously and take it. I end up waking up 5.5 hr after the first dose, and most of the time thats only about 4-5 hours of sleep. I take my first dose at 11pm. It's extremely upsetting to wake at 4:30 every.single.night and debate whether I take any sip of my dose at all. The most I've done is taken half of the dose, but I know I really shouldn't so I didn't do it again. If I choose to go back to sleep, I end up waking up feeling awful, like the whole dose didn't do anything. It's depressing, I hate being ill, I just want to cry 🥲 and I'm writing this at 4:50am, it just won't stop happening. Xywav had been helping me through everything, I was fully functioning, and now I wake up feeling horrible every day. Like as soon as I go to sleep without the second dose, I wake up with an irrepresible need to continue sleeping, and often times I'll just fall asleep again and again all morning... please if you have any advice I'm so open because I'm tired of waking up feeling like I want to die😭

Hi! I have been seeing a drastic uptick in hallucinations due to my REM behavior disorder so my doctor prescribed Wakix. I have not started it yet, however I read on their website that it affects birth control.

Can any women who take Wakix share their experience? Is it worth it?

On Xyrem 7.5. Been on it for a month now, meaning after titration. Last night I woke up to wet bed. Genuinely can't tell if I wet the bed or just sweat a lot. Here are some facts.
1. No smell or color.
I drank a lot (over a gallon because I worked a long physical day)
2. Slept naked, with a singular blanket and singular sheet, no mattress cover because I never have wet the bed
3. I have drank a lot of water before and not wet the bed
Stain is one large area from above kneecap to mouth on mattress, assuming because it could have spread if it is pee.

If anyone have experience or feedback I would love to hear it! :) gonna go put my mattress outside and clean it regardless, may curb it if it does end up smelling

I’m in the preliminary stages for an orexin agonist clinical trial. I need my mslt results from my sleep doctor, I have asked for them initially in an email, a couple days later through the phone when I didn’t get a response and they told me it would be 3-5 days to receive them (and it sure was), and then when they sent me two files, one labeled mslt and one psg and they were both polysomnogram results despite the file names, asked one more time to crickets.

I feel like I’m being stalled and it’s so frustrating. I’m not sure if the orexin antagonist will help me (my sleep doctors never been too concerned with N1 or N2) and I am fully aware that I may end up on a placebo and it might be a shitty couple months but this is a chance for me to maybe feel better for the first time in decades and I feel like I am being shut off from the opportunity.

On top of that, my place of employment is behaving like an absolute toad over return to office right now (new asshole VP over my group). Driving in wipes me out. Riding the metro wipes me out. Ubers I can’t even pretend to stay awake in. The stress of ever expanding demands in the current environment and less time to do it because of the commute time also wipes me out. Having to tell levels of leadership up through corporate to get an accommodation that my employer wants to “work with my doctor on” also stresses me out. I feel stuck and frustrated.

I’m lucky to be able to work and be a high performer. I realize all this could be so much worse. But with the sleep doctor and work stuff, on top of a bunch of personal life crap, I feel like my life is falling apart. I know I need to nag my sleep doctor more, it’s my information and have a right to it, and my jobs probably inviting legal trouble with their approach, and I certainly can deal with the personal stuff better but why can’t anything be easy, ever.

Thanks all, sorry to be so morose.

N2 and suffer from severely fragmented sleep (please check this detailed prior thread for more of my background info if you're not too tired :). 'Maybe sleep 1-3 hours a night tops and wake up a million times even in between those scant hours. Short/ long naps are a no no since I either wake up tired and with a headache after a short one or will never be able to sleep that night at all after a long one since I've already used up my sleep quota for the day. I'll then have to pay for it by having to miserably wait until the next day to get any resemblance of sleep return to my system once again.

'Recently finally tried Lumryz a few months back which took 2 months of battling my prior ins company, CVS Caremark and complete incompetence from my neurologist's office before getting approval through their patient assistance program. Sadly ended up not working for me at all after slowly titrating to the max dosage making me even groggier than normal when waking up after 2-3 hours max and unable to fall back asleep afterwards. This really broke me I won't lie as I was so hopeful after battling to get access to it and end up having it not work out at all in the end.

I have to this point tried Ambien, Melatonin, Lunesta, Trazadone, baclofen/ Doxepin combo, Xywav and most recently Lumryz. I've also tried various types of sleep gummies over the last 2-3 years all to no avail. Xyrem will be my last oxybate that I have yet to try it but I'm just not ready to do so for now until i can get myself mentally in a good place to tackle the arduous journey to get it approved (let alone prepare myself and deal with the outcome if it ends up just like the others). Maybe early next year..

In the mean time I'm scheduled to see my useless sleep neurologist whom at our last encounter would not prescribe Baclofen for me because she had never heard of it & believed that it would never work even after I explained its off label use and citing journals. She ended up doing so after I physically printed out the studies and handed it off to her at a subsequent appointment scheduled just for this. I'm really looking forward to her "I told you so" speech as you can imagine tomorrow... yaaaye :)

Spent some time with the family this past weekend.. There was a tv show playing (don't even know what it was) in the background with everyone talking when I looked up and saw a scene where a patient woke up from a 5 year comma.. I inexplicably randomly blurted out 'Wonder what it feels like sleeping uninterrupted for 5 years? Do you think it was restful for them?' They all turned silent- turned towards the tv and after catching up with the scene looked at me like I had completely lost my mind. Obviously as you can imagine, it turned into a huge blowup where I explained I was just asking a hypothetical and wasn't wishing this on myself and they responded saying that I shouldn't have brought it up let alone think it. As I was starting my day the next morning staring at the mirror, I looked at my relatively for my age young looking 45 year old face with the exception of my deeply and normal at this point 70 year old looking perpetual red sleepless eyes with prolapsed eye bags and overall dark complexion all around it that gets worse every day since I was given this gift approx 20 years ago. F**k ya! I would definitely give anything for a 1 year (not 5 :) uninterrupted deeply restful and restorative sleep whether it's a comma or anything else one wants to call it that's socially acceptable by normal standards by the majority of people who have no clue what we suffer and go through every second every day. That 1 year's worth of delicious restorative sleep would guarantee absolute nirvana and will future proof me for the rest of my life.

My apologies since i didn't mean to turn this into a novel. I'm really reeling right now while I'm writing this. I truly wouldn't wish this condition on my worst enemy... I guess if there's any meds I can ask the doc tomorrow to prescribe that you think I should try- I'm all ears. I've anecdotally heard amitriptyline mentioned once or twice here?? Any others left field or out there fringe meds I can ask about please leave them in the comments. Maybe I can leave with 3 or 4 prescriptions that I can try for the next 4-5 months until I go back for Xywav sometime early next year.

It's been an unimaginably bad couple of days...Thanks for sticking around to the end!

Hello All,

I’ve never posted in here about my journey due to the lack of a formal diagnosis but I thought I would share a bit now that I have my results. About 4 years ago I had a catheter ablation to correct my WPW and immediately upon waking up from surgery have been ultra sleepy. I just figured it was my body adjusting to the heart surgery. Fast forward 6 months and I’m still uber sleepy. Sleeping 15 hours a day. At the time I was in the Army and had complained constantly to no avail. Out of nowhere I began to hallucinate every night. Terrible nightmares and almost every type of hallucination a person can have i.e. visual, auditory and tactile. It really affected me mentally on top of how much I was sleeping. When the medics found out I was hallucinating, I got admitted and down the road was diagnosed with Schizoaffective disorder. I got medically separated and lived a year and a half believing I was psychotic. I was on a plethora of psychotropic medications that were hindering my cognitive state and caused me to sleep more. But I never stopped questioning. Through about a year of on and off self research, I came to the conclusion that I wanted another sleep study. No medications. Back in April of this year I made the decision that I was going to come off of everything. The anti depressant, the mood stabilizer, the anti psychotic etc. I complained to the VA constantly about the hypersomnia and they pushed me off because I had barely qualified for a OSA diagnosis and needed to do CPAP. I told them I wasn’t going to suffer for another year so I got a consultation for community care to the local hospital. Within a month I had an appointment and a month after that I had a PSG and MSLT scheduled. Just obtained my results today and my results are in accordance with N2. 4 nap protocol, 2 Soremps, 1.5 min average sleep latency. I am so relieved. I have lived the last two years under the guise that I had schizoaffective disorder. Thank you for reading, if you have any questions just comment

hello everyone ! i’m writing severely sleep deprived. every. single. night. i sleep alone or forget my melatonin (actually, those two factors don’t even necessarily have to be there .. can just be coincidental, i usually get less nightmares when sleeping with my partner) get these absolutely horrible and terrifying vivid dreams & sleep paralysis.
and quite frankly …

i’m exhausted💤

i wake up 2-3 hours after I go to bed, cold sweating, heart beating out of my chest, adrenaline pumping and being super scared. i feel like my brain is holding me captive.

i’ve tried antidepressants, as requested by my doctor, but it made things worse.
i’m so tired and sick on being traumatised every night, it’s is excruciating.

currently i’m on:

wakix: 36mg
melatonin: 5mg

i’m begging, if anyone has any similar experiences, i would love to hear more. I feel very alone with my fucked up brain, so if anyone relates, feel more than free too.

Thank you 🙏🏻🙏🏻

As in, I know the two overlap in terms of symptoms and tiredness / burnout / fatigue are common in both. For reference, I have adhd but for as long as I can remember I’ve always had issues with sleep. Even when I was born I didn’t open my eyes for two days ! (Probably not sleep related but just find it interesting) I’m not sure if I have n and I know it’s not the place to get a diagnosis, and I’m not looking for one here, but just the symptoms of hallucinations (room closing in at night, seeing glowing images just before I close my eyes more specifically ghost people floating or walking about above my head) and I think it’s why I’ve always been scared of the dark 🙈 I am also ALWAYS tired even on 200mg modafinil and I take quetiapine for sleep. Eventhough the modafinil does keep me awake and not be tempted to nap which is its job I suppose, I don’t feel energized just less sleepy but still have that sluggish drained feeling in the back of my mind and brain fog and need to focus more to even speak or have a conversation with someone properly. I have heard of cataplexy and I do keel over and feel spacey when someone’s being really funny but again, not trying to diagnose myself on here, just observing. I don’t feel like the modafinil or quetiapine is getting to the root of the issue and I still need caffeine/ nicotine/ sugar to get me to be productive but even then I do things almost automatically because my brain is exhausted. I had a psg and they said my results are fine which was unfortunate, would it be worth getting a mslt and seeing a neurologist rather than a respiratory specialist?
Basically I’m just curious to see where adhd symptoms overlap and where they don’t and if anyone has been diagnosed with adhd before a sleep disorder diagnosis.
Much appreciated!

Also does anyone have any “weird” symptoms like fear of the dark or some quirks that made them realize that it was due to a sleep issue ? I’d also be curious to see what other people’s experiences are with hallucinations!

So one of my parents has narcolepsy, and I distinctly remember when it hit hard for them- at about 40 (so I was around 10 at the time) it was insanely bad. Like in bed all day; when they would try to take us anywhere we’d end up on the side of the highway for hours, me and my sibling just playing in the car (we didn’t know it was weird for it to take about 4 hours to get somewhere that was a normal person‘s hour long drive). Eventually they got diagnosed and medicated, and of course still struggled. But now, about 30 years later, although I can still clearly see all the symptoms of narcolepsy in them, it does seem WAY better than when it first hit decades ago. I’m hoping the same proves true for me. Has anyone else seen this? Narcolepsy improving as you enter old age?

My sleep doctor had a fill in NP today. And what she was telling me felt like the complete opposite of all the advice I had been given so far. I left feeling super confused and kinda invalidated given her attitude. I have Narcolepsy Type 2 and I'm a nurse. My appointment was to discuss a possible med change and work accommodations. I've only really recently gotten diagnosed, and I've only tried Modafinil so far.

She immediately came in the room with a strong attitude, "predicting" what I was there for, and kept kinda talking over me.

My issue was that my current med (Modafinil) works okay but it's inconsistent. There are days that when I take it, I'm energetic and great. And there are other days where I take it and am falling asleep within an hour. The doctors instructions were "Take 2 in the morning, and 1 at noon". When I followed this, I was physically unable to stay awake during the afternoon dose. It was ineffective for me. So I tried taking 1 pill, spaced out by 4 hours and it worked a lot better.

The only issue is my inconsistency with times when I take it for on vs off days due to different wake up times.

She asked what time I take my meds and I told her it depends. Work days are consistently the same time (6AM). But there's no way in hell I'm waking up at 6AM on my off days. I sleep until I naturally wake up on those days because I have a physically demanding job and I need to recover. If I sleep til noon, I might only take 2 doses that day since I "missed" the morning dose. And on some off days, I sleep so long I just omit that days dose all together (which my main doctor said was okay to do). Regardless of when I take it though, I have no disruptions in my nightly sleep, and I try to never take it past 4pm.

When asked about my sleep habits, I told her I was sleeping 12+ hours plus a 3 hour nap on my off days. She just kept shaking her head every time I spoke and being dismissive saying "That's too much.." (yeah no shit that's why I'm here)

With my job I work 3 12s and by the first off day, my body is EXHAUSTED and I'm in a severe sleep deficit. Hence why I sleep so much on my off days. I tried to tell her this and she just kept saying I shouldn't be sleeping this much.

She said I need to be getting up at the same time no matter how much I want to sleep, and that what I "want" vs what I "need" isn't the same (True, but am I just supposed to be baseline exhausted and forcing myself to stay awake with meds? Won't that create an insane sleep deficit and create more problems when I can't catch up?) I'm just confused and frustrated. Medication isn't a sleep replacement. So why does that feel like what she's suggesting?

I'm worried that if I follow her advice I will be in an even worse sleep deficit. I try to listen to my body. If i need more sleep, I sleep. That's part of it no? I take my medicine (Modafinil) as a boost but not a sleep replacement, which is what it felt like she's suggesting. I know I sleep "too much". But if I'm getting 50% of the restorative deep sleep that a normal person gets in the same amount of time, IM GONNA NEED TO SLEEP LONGER! It's part of the mf diagnosis!!

Idk I just felt completely dismissed and unheard by her. Maybe I'm misinterpreting things, and I know it's her job, but it felt like she was telling me the complete opposite of all the advice I've been given this far.

I don't know what to do. I have another appointment with my actual doctor tomorrow because in the end, she couldn't actually adjust my meds bc it was out of her scope. So I just had my time wasted essentially and left feeling really confuzzled and honestly angry?? At her lack of understanding and her bedside manner. And her seeming lack of knowledge for her literal specialty.

What are your thoughts on this?

If you don’t want to read all this just skip to the questions!

Looking for some support/advice! I’m going to give my whole oxybate background in hopes that someone here has had a similar experience and can share what worked for them.

I started Xywav back in April. For the first month or so, I was doing pretty well with it, but as time went on I became increasingly nauseous and eventually struggled to eat enough. I quickly went from 120 lbs to 110 lbs (I’m 5’4”), and I was getting scared that I was going to become underweight. Beyond the weight loss, I just felt awful physically from not being able to eat enough.

I wasn’t even on particularly high doses — I was taking 3g + 2g and later 2.25g + 2g. I also never really felt more rested in the morning. The main benefit I noticed was that I could actually wake up around 9–10am instead of sleeping until 1–2pm. Eventually, I decided the benefits weren’t worth the side effects and stopped taking it.

About a month later, my doctor said my ESS was still high and that Sunosi alone didn’t seem to be cutting it. He recommended trying Lumryz. I was definitely hesitant after my experience with Xywav, but I agreed because I was hopeful that the once-nightly formulation might work better for me.

I started Lumryz at 4.5g and pretty quickly noticed some mild nausea and a decrease in my mood. Neither has been anywhere near as severe as what I experienced on Xywav, but it was enough to make me nervous about increasing the dose. I asked my doctor if I could stay at 4.5g longer to give my body more time to adjust, and he agreed. I’ve now been on 4.5g for about three weeks and am supposed to increase to 6g next week.

At this point, I still get some nausea here and there, but thankfully it hasn’t significantly affected my appetite. Maybe a little, but nothing like Xywav. I have also noticed random drops in my mood, which concerns me.

I currently take Lexapro (5–10mg), but I’m also starting to wonder if Lexapro is still the right antidepressant for me. I know it can cause fatigue/sedation for some people, which obviously isn’t ideal when you already have narcolepsy. I also can’t tell whether the mood changes I’m experiencing are from Lumryz or if my Lexapro just isn’t working as well for me anymore.

For anyone who has been on Lumryz for a while:

• If you already had nausea at 4.5g, did it get significantly worse when you increased to 6g? Did it eventually improve as your body adjusted?

• Did you experience any depression or noticeable mood changes when starting Lumryz or increasing your dose? If so, did that eventually level out?

• Is anyone here taking an antidepressant along with Lumryz? If so, which one, and have you found one that works well without making your daytime sleepiness worse?

I really want Lumryz to work because my daytime sleepiness still isn’t well controlled, but after what happened with Xywav, I’m nervous about ignoring early side effects and ending up in the same situation again. I’d really appreciate hearing other people’s experiences, especially anyone who struggled with Xywav but ended up doing well on Lumryz.

Hi! Glad this sub exists. Diagnosed only last July. What are some relevant and credible resources, websites, books, podcasts, etc., to learn more about narcolepsy?