This might be a weird question but I really want to know if anyone can relate. I feel like a lot of the times in the morning, my brain feels fairly functional and ready to get up after my Xywav wears off and my Jornay PM kicks in, but my eyes feel SO tired and I end up going back to sleep just based on that. Even now, I feel like I can technically focus, but my eyes feel so heavy, and it's making me want to go back to sleep. Is this weird?

My boyfriend and I were talking about how ADHD gives him hyperfixation on his interests. And he asked what my narcolepsy superpower is...and all I could think was, I sleep a lot? Though, upon reflection, it's a great way to get out of going to events, which sometimes is a good thing. So, community, have you discovered any narcolepsy superpowers? A silver lining to this disability? Let's hear it!

I has always been very hard for me to lose weight since I developed narcolepsy, my blood tests have always been within normal range values but always slowly approaching the limit, I'm obese, I have tried to lose weight during the pandemic and it worked, I went from 92kg to 76kg, however, the cost was just too much to maintain, I was basically dedicating every second of my waking moments exercising or fighting the urge to eat, all my energy went into fighting my weight, it wasn't enough, to reach 76kg (which is still overweight), I had to literally starve myself, eating just about 1400 kcal per day, I felt exhausted and hungry, I also was consulting with a nutritionist so it was controlled, we did try more calories before, we didn't jump straight to that low level, but the relationship was proportional, the more calories I ate, the less I weight I lost, I didn't go lower than 1400 kcal because I would suffer from malnutrition. When my motivation ended after six months of insisting, I gained almost everything back, now I'm at 88kg and I have about a year to do something before my blood tests get out of the healthy limits. Sodium oxybate is not legalized in my country and things like ozempic are extremely expensive and I can't afford them, stimulants like ritalin and modafinil didn't do anything to my weight. I'm hopeless, I'm going to an endocrinologist soon but I don't think there's much he can do for me.

Even when I’m awake, my brain feels foggy and slow. I forget parts of conversations, lose track of tasks, and sometimes stop mid-thing because I can’t remember what I was doing. Trying to focus for more than a few minutes feels exhausting. It’s frustrating because my body is awake, but my mind feels disconnected—like it randomly checks out without warning. This feels different from normal tiredness.

Has anyone else experienced this?
What’s helped you stay more mentally present or improve memory, even a little?

I'm a teenager with N2. I've been on Lumryz for the past 2 years or so, and I feel like I've pretty much peaked with how well my narcolepsy is being treated. I feel rested, I guess, but maybe only 75% of the full capacity a normal person feels rested.

Whenever I complain about being tired while I'm medicated, my parents automatically assume that my medicine isn't working for me and we need to go up a dose or something. I feel like I never get through to them when I say I'm always going to be tired, that's how narcolepsy works. Our medication doesn't make us feel fully rested like a normal person, but we'd rather not be without it because of the amount of rest we do get.

I feel like I finally got my mom to understand when I made an analogy to antidepressants. I said, "You're not always going to feel happy go lucky on antidepressants. You're going to have bad days, okay days, and good days." She told me how she felt so stupid that she didn't realize it sooner. My dad might be harder to get through though lol.

I think there's some kind of misunderstanding of how narcolepsy medications work and how they interact with our narcolepsy. They're not going to make us feel 100% rested. Frankly, I've never seen another narcoleptic say they feel 100% rested on their medication. What do you think?

I was finally approved for treatment about 2 months ago for my narcolepsy. Since then, I have been on 3 different medications. The first, Modafinil, caused severe migraines even on a half dose. I was switched to Dexedrine which works but my doctor was concerned about it being a schedule II med. So they had me try Sunosi instead- I could not believe how incredibly irritable and angry I was while on this med! I was set off by the smallest things- unacceptable. I work with kids, so I need my usual easy going, calm, and patient mood! I went back to Dexedrine and am waiting for guidance from my doctor.

I’m only at the beginning of my journey and I’m incredibly frustrated at how long the road already looks like it’s going to be.

It’s so frustrating that all I want is to wake up in the morning without feeling like I’m fighting for my life, and to stay awake during the day. Why must it be so difficult to do what so many others (healthy) can do without trying? It feels unfair.

Meanwhile it takes me hours to get out of bed, I can’t even open my eyes or move most of the time let alone to “try taking my med an hour before you need to actually wake up”. And then I’m playing musical meds and doing ridiculous things like I always have for the last 10 years - keeping my shoes on and refusing to sit down at all for 8 to 12 hours straight etc. just to make sure that I don’t fall asleep. And even then, sometimes I lose and I fall sleep standing!

Thank you for reading. I don’t have anyone that I can vent to who would understand. Feel free to send additional advice or encouragement my way.

I swear to god I am incapable of sleeping for less than 12 hours on a regular basis. Like, if I have an event I have to go somewhere for, I usually get so anxious I’ll oversleep that I wake up every 2 hours the night before, so I manage to get up on time, but on an everyday basis I always sleep for around 12 hours.

I work from home and my manager is an angel, but it starting to be a problem. I work 8-430. I can’t go to sleep at 730! I need time after work to eat and decompress and take care of my animals. So I’m constantly waking up late and having to work late.

I took Xywav and Wakix before and they were amazing for helping me wake up but I had horrible side effects and had to stop taking them. Now I just take Armodafinil and it helps with EDS for the most part, but this sleep timing is killing me.

Hi all!

I recently started dating someone with narcolepsy & cataplexy. We’ve talked a lot about it, how it impacts him, and also what I can do when he’s having a cataplexy episode but I’m curious what your significant others/family have done to make you feel supported but not treated like you’re fragile and incapable.

Things I’m already doing: - asking clarifying questions to him directly when I have them - doing my own research but remembering he’s the expert in his own experiences and what support is helpful. - writing down how he wants me to handle his cataplexy episodes so I can review it regularly and be less deer in the headlights when it does happen - starting going to the gym again so I know for sure I can hold him up/lower him safely from standing if needed

What little things can I do to help either day to day or just in general? Either when it comes to narcolepsy or cataplexy

(vent/rant)

This product fills me with so much rage. Narcolepsy (what I have) is a real, DEBILITATING neurological condition. "Sleepy grandma animatronic" I don't give a shit about. It's the fact that they decided to use the term "narcoleptic" despite how narcolepsy is HUGELY underdiagnosed in the general population and absolutely ruins lives. There's no cure. We can treat symptoms but there's NOTHING that will give us back the ability to regulate sleep because our immune system destroyed our own orexin in our brain.

https://www.halloweencostumes.com/narcoleptic-nana-the-face-pinching-clown-animatronic.html

I have narcolepsy and sleep apnea and today I'm more confused than normal forgetting which tasks I'm wanting to do and brain fog no signs of stroke. Anyone else have this with lack of sleep?

Itchy red dry skin like hives?

Has anyone stayed on a low dose of Xyrem and found it successful? Every time I try to go above 2.5 I get awful side effects. I’m probably not getting the deepest sleep and honestly don’t feel that much better during the day but I’m thinking it’s better than nothing?

Ever since I started Xywav about 5 months ago, I've been having issues with my teeth, at first I thought it was because I would sometimes get sick from the medication. Than I thought it was in my head! Than I would wake up with sore teeth, than small things like my back tooth was chipped BUT this morning I woke up with a loose tooth!

I looked it up and saw one post on a /narcolepsy subreddit about this happening to others, I'm freaking out I'm mid 30s and it's my bottom tooth. I think it might be from grinding my teeth while sleeping but WTH I'm freaking out!! I have healthy teeth, get my cleaning done every 6 months, I have good oral hygiene.

I'm worried about the cost but mostly the actual loss of the tooth!! It's 6 am, I woke my husband up and he confirmed it is loose and I'll be calling the dentist office as soon as they open?

Has anyone had issues like these so I can let my doctor/dentist know?! What did you do?

And I hate it because Xywav is the only medication that has helped!!

I am on a lower dose (2.75/2.25) because of nausea. When everything lines up just right and I manage to sleep on the first dose I get pretty good results with this (diarrhea and some nausea but its manageable).

However it feels like a game of Russian Roulette every single night because if for some reason I do not fall asleep on the first dose everything goes wrong. I then cannot sleep AT ALL if I miss the window, you know when you feel it kick in, if I wait too long it goes the opposite way and keeps me awake. Even when I take the second dose I still don’t sleep and then I am awake all night and VERY nauseous the next day for most of the day.

It feels incredibly high stakes and dramatic swings because I will get one good day and then one terrible day where that happens and its just 0-60 unpredictably. If it happened like once a month or something I could cope but its pretty frequent and dramatic. Does this happen to anyone else? I don’t want to go off and lose the good days but the bad days are so awful and its so impractical to not know where I will be totally fine or unable to move a muscle with nausea until 3pm. It‘s also so frustrating once I miss that window I know I will be lying there all night unable to sleep and then so sick.

Does this happen to anyone else? Any ideas?

For me at least there really is no nausea like Xywav nausea.

I'm sending a few studies to my doctor as we discussed the use of baclofen for getting better sleep today at my appointment. I know he can probably get a copy of this study for himself to read, but I'd like to read a copy too on my own. Unfortunately, the only versions I can find online are paywalled, and the abstract doesn't say much. If anyone has a pdf, please dm me! Thank you so much :)

Wondering if this happened to anyone else when titrating up on Xywav. I’m at 2.75g 2x nightly about to go up to 3, but I feel like it’s enough that I feel it and it makes me dizzy and tingly but not enough to knock me out and my brain is almost involuntarily fighting the medication and won’t just let me give into it. Do I just need a higher dose? I end up taking it then staying up for another hour to hour and a half which is like half of the medication effectiveness time.

I find that frequently, around like every 1/4-1/3 of my dreams, I will have some nightmarish dreams. And I say “nightmarish” because the main bulk of the dream I wouldn’t consider a nightmare: I’ll be having a totally normal dream until all of a sudden, typically right before waking up, things will turn into a nightmare scenario. I will occasionally have dreams that will be “nightmares” all throughout, but less so than the dreams that suddenly turn into nightmares.

The most recent example I can think of is the other night I was having a dream about the 4th of July and I was messing around with my friends outside. The fireworks start going off and it’s all of a sudden super foggy or like a veil of smoke is now in the surrounding area. I then started hearing something akin to an air raid siren and my parents are there beside me. We exchange glances between the three of us of pure terror and fear as we quickly realize/understand the scenario we are in. Then like 1 or 2 SAM missiles are fired off and disappear into the fog and I remember feeling genuinely terrified at the fact that I was about to have a swift end due to an incoming ICBM or whatever. That’s when it hit me that I was having a dream and I suddenly woke up. Once I realized it was a dream, I was fine but it was so scary before that realization.

I’ll frequently have very vivid dreams that take all sorts of twists and turns. I was just curious if any fellow narcoleptics also have seemingly normal dreams that suddenly take a dark, nightmarish turn right before waking up. I’ve had so many dreams that I feel like other people would consider nightmares, but I’ll usually have a realization that the scenario I find myself is so bizarre that I must be dreaming. And once I realize that, I’ll stop being an active participant in the dream and I become more of a spectator with no control over my actions. I actually kind of enjoy my “nightmares” after realizing it because I like watching the stories my mind creates.

Also, idk if this has anything to do with the narcolepsy or not, but do you guys also have dreams that will have some kind of violent or dark aspect to them? I’m on Lumryz, adderall, and armodafinil currently but idk if my meds have some effect on my dreamscapes.

I had to hangout with my friends yesterday after work and make a long drive to do so. I've cancelled many times from extreme exhaustion and burnout so I had to make it. I knew it would make me tired and mess with my routine, but still. I managed to make it there. We just got dinner and it was so much that I'm deeply wiped out and can't go to work today. I'm so pissed. I'm on xyrem. I just want my life back. I don't understand why I can't do anything at all. I am dealing with an acute mental health crisis so I'm just hoping it's that and I won't be this way forever. I wish I could have fun and do social things after work and live my life the way I always envisioned. I'm only 22 and I feel so upset about this. I want to do so so much more. This seasonal job ends soon and I don't know what I'll do for the rest of my life. Before I was narcoleptic I was pre-med. Those dreams have died.

I have narcolepsy and have you ever heard of it being compared or diagnosed as a mild stroke? the other day when I went to sleep I was very anxious and worried and very angry. I woke up in the middle of the night and I couldn’t recognize a lot on my cell phone. It was difficult for me to speak, which is one of the main symptoms of a mild stroke, but I didn’t have any of the four or five other symptoms just that one and another time five years ago I had the same thing that happened and I went to the ER, they ran tests on me for two days and told me I didn’t have a stroke and they mentioned that it might be narcolepsy. Have you ever any of you ever heard of this type of thing Where the narcolepsy symptoms are compared to a mild stroke or have you ever experienced something like this yourself? thanks in advance

After months of self-advocacy, fighting for copies of documentation, providing endless additional information, and breaking down in front of my doctor, HR, my supervisors; after countless attempts to address my needs myself and being denied, after stating exactly what I need and how I’m struggling…

The most “reasonable” accommodation they can offer me is 2 minutes away, up to 5 times a week, to manage stress-related cataplexy. 10 whopping minutes per week to manage my debilitating narcolepsy. I have to spend part of those 2 minutes notifying my supervisors that I need to step away.

HR processed my FMLA paperwork simultaneously, and didn’t tell me that it wasn’t sufficient. I now have to restart that process, but have burned through all of my PTO and ESTA and cannot afford to take time off to see my doctor (who is booking out several months) again.

I just got back from bereavement leave to an email that I’m getting pulled into a coaching meeting about my attendance. I’ve requested a union rep at the meeting, but they’ve done jack shit for me up to this point. I try not to think this way, but it genuinely feels like they’re making me jump through every possible hoop in hopes that I’ll quit before they have to accommodate me or provide FMLA.

I’m tired of this. I’ve struggled with passive SI my entire life and it’s getting 100x worse because I don’t see another escape from this. I don’t know.

Last year I did an overnight and MSLT. The overnight data presented very strongly as narcolepsy (I also spent 41% of my night in REM and exhibited REM without atonia) but I didn't test as strongly on the day time portion due to excessive noise (I was literally above a loading dock, trucks were in and out and one even hit the corner of the building, on top of the roadwork outside...) so they've withheld a diagnosis and said I needed "more" testing. In 10 years I've had 2 sleep studies, going on 3-, I've had an actigraph for months on top of months, participated in research trials, experimental treatment, etc. and I'm worried I still won't receive a diagnosis.

I have severe panic disorder they treat with Effexor and recently my mom has had a relapse of a very rare kind of lymphoma that has no spread to her brain- so coming off of the meds wasn't going to happen anyway (last time I was having panic attacks every few hours) but now it's definitely out of the question. I keep telling them I have the EDS, vivid dreaming, fragmented sleep at night even while on the Effexor but they insist it's just too hard to tell if I have Narcolepsy based on all the other criteria that screams "SHE HAS NARCOLEPSY!!"

I've got no quality of life, my dreams are so vivid sometimes I can't tell if there real or not as I doze off 3-4x a day, my EDS is so unrelenting that even just a trip to the store feels like an odyssey, and the only thing they'll say is I have "severe ideopathic insomnia." I can't get disability, all my Dr will prescribe me is 200mgs of Modafinil twice a day, and I'm so stressed out that I'll test poorly during the day again due to my heightened anxiety. I haven't worked in 2 years, and my sleep disorder is a very large barrier among others to finding suitable employment- I need a degree of flexibility I don't think exists in this job market.

Has anyone else with chronic/severe anxiety had this issue during their MSLT? I honestly think my doctor (he's very very new- I don't even think he's a sleep neurologist) is chasing 100% perfection, textbook signs and classic presentation before he confirms a diagnosis- and won't look at the symptoms on aggregate and form a conclusion. Having to pay for a 3rd study while out of work is killing me too. I just want this to go right, but I'm off most of my meds, I have my mom's illness and prognosis weighing on me, on top of all the other financial worries, job search, if tomorrow will be a good/bad day, etc.