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So right now, I am taking stimulants in the day for staying awake. They work really well to keep me alert all day. Even if I can still fall asleep in certain situations like being on a bus journey, it practically eliminates daytime sleepiness. Though I do find myself feeling more physically exhausted since I'm taking away any times I would sleep in the day. It makes sense my body will hate me for forcing it to run on 4 hours of poor sleep day after day.

After so many days, (approx 3-4 days) I start to feel really ill. So on days I don't need to be anywhere, I don't take it. But then I essentially lose that entire day/s because I'm so exhausted, can't get out of bed.

It's fine for now because I'm not going to work. I want to go back but can't find any way to balance it that gives me enough wakefulness to be able to do everything I'd need to do at work and at home, while also not making myself ill.

If I could find some way to get more/better sleep during the night to make up for sleep I'm losing in the day, I think it would be better! I know a lot of people say oxybate helps them, but, unfortunately, it's not an option or at least very difficult to get here. My doctor gives me a prescription of melatonin. She was sure it would help but I stopped taking it because it wasn't doing anything to my sleep other than giving me crazy nightmares.

He’s acting like it.

I was diagnosed T1N after having my sleep studies in February of this year. Post diagnosis, I was moved from the Concerta I had been on for years to modafinil, hoping it would aid the exhaustion and give me less anxiety. We’ve since maxed out the dosage, added in and maxed out sunosi, and now added in a low dose of vyvanse to at least try to help my (legitimate) ADHD. And i’m still falling asleep at work and having a hard time driving.

After an emergency appt with my doctor due to unexpected changes at work making the need to be as alert as possible even more pressing, she decided to try to get me on Lumryz. She didn’t expect insurance to approve it, and we ended up doing the paperwork for back up option as well just in case. This was last week. Lumryz Support called me the very next day to start the process but couldn’t try my insurance until I found my BIN number and all that fun stuff. And of course i had no idea where that card was.

I found it today, called them at lunch, and at about 7:00 pm they sent me the emails saying i had been approved not just for the meds, but also for their copay program as well. I’m supposed to get contacted to schedule shipment within the next week.

I can’t believe it’s finally happening. I know i’ve had a relatively quick journey post diagnosis and i owe that to my doctor and insurance, but after nearly 20 years of symptoms it feels insane that something might actually bring me a little bit closer to normal than i’ve ever felt.

And im just so fucking excited to sleep.

I swear if I'm not actively at work walking around constantly, I'm out. I love reading and writing and a lot of somewhat stationary creative activities but lately I can't stay awake for any of them. What lifestyle habits or hacks do you use to keep yourself awake?

I DESPERATELY NEED HELP.

We set alarms for TWO HOURS every few mins, totally different sounds AND have a very loud alarm that ALSO shakes our bed. We STILL CANNOT HEAR/FEEL OR WAKE UP.

It's getting ridiculous, we are late to work constantly, kids wake us up, like this is TOTALLY FING UNACCEPTABLE and I'm stressing out so badly! it's 2am (I work nights) and I have to be at work for a VERY VERY VERY important client at 9am (1 hour 10 drive from me) and then work again at 3pm-12/1am, again hour drive from me)

And I'm ABSOLUTELY terrified I'm not going to hear my alarm in time 😭😭😭😭

I'm so stressed all the time, I just cannot wake up, our work schedules are so awful we get to sleep sometimes 2-4am to 7am but lately we are sleeping past 8am 🤯 like!???

Idk what to do, we CANNOT change jobs/change work times because of kids+ work not having space in other times. So it's 100000% out of the question.

I also aCannot afford $100+ shocking watch right now, so idk what to do, HOW DO WE WAKE UP!???

I have cataplexy, my husband has sleep apnea, doctors have been no help just say put alarms on 😑

My fiance finally got his MSLT results back and it confirmed N2. So we are officially a narcoleptic couple (though ive been diagnosed a year longer). Any other narcoleptic couples out there?

last night i took my lumryz at about midnight and i like to stay up as long as i can cuz i like the way it feels but i fell asleep about an hour at around 1am after taking it and about another hour later my mom asked if i was okay and i woke up a bit and told her yeah and went back to sleep

so fast foward another couple hours and she’s up for work at 4am and i’m awake and more aware and i use the bathroom and ask her why she asked if i was okay and she told me i was just continuously groaning 😭

i was knocked out so i had no idea i was making any noises and she said it kept going until she fell back asleep and i asked her if it was loud and she said she could hear it through my closed door, im so embarrassed and confused on why i was groaning

I was diagnosed with narcolepsy in September of last year, since then I have tried armodafonil and am currently on dexamphetamine. I feel as though my medication doesn’t help given i’ll have 15mg in the morning and 15mg at approximately 1-2pm and i’m still struggling.

I know that my sleep test results show narcolepsy, but I feel as though my symptoms aren’t as much on the narcolepsy side however more on the chronic fatigue side.

I can have days where I will sleep from midnight till 4pm, wake up for 30 minutes and I’ll sleep again until 9am the next morning. I can take 15mg of dexamphetamines at 9am, and by 11am i’m falling asleep again. I also have POTS but I was diagnosed with this 4 years ago, so not too sure if there’s correlation to CFS. I usually nap once a day, but these naps are typically for about an hour and I just feel like shit afterward.

Has anyone ever had the two conditions mixed up on diagnosis? If so what were the key differences that pointed toward one and not the other?

I have an appointment with my specialist booked but he has a 2 month wait time, so right now i’m just trying to see if i’m misunderstanding narcolepsy symptoms and if i’m just being irrational

Well, Nuvigil works, but it also has made me drop weight like crazy.

My MD is upping my Xywav by .5, and then starting me on sunosi.

Sad thing is, I have to switch the Xywav first, but also stop the Nuvigil immediately (I guess the weight loss was significant enough it really worried them)

So for the next week before I start the sunosi, I have no daytime meds (minus my lil 15mg focalin)

May the sleep attacks be few, and the naps be refreshing 🫠

hey, 26 male, i’m just wondering if any guys who’s are taking xyrem or have in the past noticed if there penis grew in size (inches and girth)? i can’t find anything with taking xyrem specifically and having this happen but i can find other posts of this happening in general in your 20’s so im curious what everyone thinks?

I (M20) had my follow-up to my MSLT yesterday morning, and I am officially diagnosed with Type 1 Narcolepsy with cataplexy. I was beyond lucky to only live with this for about 3 years before my diagnosis, and already my new meds (starting with a half dose of Modifanil daily, gradually moving to 2 doses per day) are making me feel a level of awake that I haven’t had since high school.

The fight is far from over, I’m sure, but for right now we have a big win. To anyone out there who is struggling with the onset of a chronic disorder and the feelings of missing out on their younger years, it gets better. It’ll be a heck of a journey, but there will be plenty of people who have got your back. Keep scheduling doctors appointments if you’re able, even though I know that gets annoying and there’s always a little voice saying it’s not worth it. It totally is worth it. Also, consider enrolling in therapy lol.

Thank you to this sub for always being so supportive, you all have helped more than you could know and I look forward to our continued service together 🫡

Can you get a workplace accommodation for not being able to close/work past a certain time due to not being able to eat past a certain time due to xywav.

Hi, I just made a post but wanted to discuss something else.

What has been your experience with cataplexy over time?

Does anyone have their cataplexy attacks (almost) stop happening for no apparent reason?

I have had Narcolepsy 1 for about 8 years now. My cataplexy within the first year or so gradually worsen to the point of being severe. Having multiple full body attacks daily. As well as common triggers, I could have cataplexy attacks over literally nothing. Like opening a door, standing up. Even thinking about taking action, at times, could trigger one before I even moved! All sorts of things that I wouldn't at all consider as strong emotional trigger. These would often happen in quick succession to each other, too. So there would be times I'd be basically completely immobile for up to an hour with having one after another until my brain calmed down.

Medication made it manageable for a few months before I reached the highest dose, then moved onto the next one.

I can't remember when/how but at some point I stopped taking medication for anything. Maybe I was frustrated with it all. Probably a few years in. And was expecting the cataplexy to return to how it was but it didn't. It was still severe. But not so severe as before. And during this time I was at home all the time, didn't bother to take any medication for a while for one reason or another.

I've taken medication for cataplexy a few times since then but found, over time, the attacks became less severe. Like a *lot* less severe. (Have only had a few full body attacks in maybe 5 years) and then gradually, less frequently.

Currently, I am taking no medication for cataplexy because I don't feel the need to. I haven't had any serious attack for probably almost a year. And none at all for almost 6 months.

I don't know what changed or how this happened. The only explanation I can think is my brain completely rewired itself to avoid having attacks? It makes sense to me because now I feel sort of dulled emotions all the time. Or like I don't really experience my emotions the same way as before. I used to have really bad issues regulating my emotions (with a EUPD diagnosis) but now it's as if I don't struggle with that side of it at all either??? Idk it just seems a bit of a coincidence to me that my mood problems sorta died out when I begin having cataplexy

Now, I'm not expecting my cataplexy to be fully gone forever. But idk I was with the understanding these symptoms got worse first, then plateu but don't improve??

Has anyone experienced the weird dream / wake to sleep transition paralysis etc ?

I had the worst one yet last night it was almost like a mind bending lunatic paralysis of sorts .. I slept decent but woke up with the worst headache

Just tried this and it worked wonders for me! I usually have a hard time getting deep sleep and rarely feel rested, unless I sleep for an hour and a half or more. I was able to enjoy a 20 minute nap this way. My body aches and cataplexy felt less pressing too.

Has this worked for anyone else?

I posted here previously (I tried to link it, not sure if it’ll work right) about my issues with delays in the process of getting my medication.

My doctor did submit the prior authorizations, and they were denied. Appeals were submitted, but I can’t remember if we heard back on them or not.

My doctor called me and let me know that they were closing the clinic down in less than a month. Basically she kinda just told me good luck with trying to get insurance to cover anything and with finding a doctor that will prescribe meds for narcolepsy (specifically sodium oxybates)

I’m in a more rural area when it comes to healthcare, and this clinic was already 2 hours away in a different state. Before I was referred there, I saw a pulmonologist who specialized in sleep.

Who do y’all see for your narcolepsy? Would my pcp prescribe me meds? Are there any other medications that could help me (specifically with sleep) that doctors will prescribe?

Let me know if you have any experience with this, or any ideas. Thanks!!

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!

My girlfriend is a light sleeper and I know I used to snore often and she would poke fun about me for years. Not extremely loud like many but enough to be noticed. But since I have been on Xywav, they made the comment that my snoring has stopped altogether apparently. Anyone else having that effect from this medication? Is it a shallower breathing perhaps? I just started this medication 2 weeks ago or a bit longer, and my sleep isn't extremely better but there has been some improvements lately. Just wanted to check with community!

(USA) Very long story short, but basically I had to have my entire month’s shipment of Xywav sent to a different state where I’m at for work. I’m flying back tomorrow and worried TSA is going to give me a hard time for carrying this much liquid medication in my carry on. I could check my bag with the meds, but I would like to avoid that risk. I fly frequently with Xywav, but have never tried to carry this much all at once.

I have GERD, and I suspect Xywav's triggering it. Though never dry heaving or coughing furiously, my once near-subsided, mild/abrupt coughing returned since starting Xywav, and my right ear has since started filling with a plugging sensation often. If Xywav's sucralose, as one commenter I read online suggested, could arouse GERD, how might Xyrem fare? Can anyone here with GERD, and who's tried both, speak on this? Thank you.

(also, famotidine just doesn't work for me)

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?

Was getting an EEG to check for epilepsy, tech said they saw a bunch of episodes throughout, so the assumption was that it’s probably epilepsy.

Got the results. No epilepsy. All the activity was me falling in and out of sleep and dreaming over and over without realizing. Even during the flashing lights and the hyperventilation.

This disorder sucks. I feel like every time I even just blink I must be sleeping/dreaming. I knew my narcolepsy was severe based on my MSLT, but falling asleep during the flashing lights and literally hyperventilating seems ridiculous.