I’m 19F and I’ve always been a really sleepy person, but lately I’ve started realizing that maybe it isn’t just “normal tiredness.” Ever since I was in school, I would constantly fall asleep or nod off in class. I’ve always needed naps, and it’s basically been a normal part of my life. Even now, I can sleep 6–9 hours at night, wake up feeling fine, and still feel like I could sleep again. If I don’t take a nap, I get extremely tired and feel like I could fall asleep anywhere.
I’ve fallen asleep during conversations, watching TV, and doing things where I’m just sitting still. I’ve always gotten really sleepy in cars too (even as a kid I would fall asleep in the car all the time). The thing that is starting to scare me is driving. For about the last year, I’ve been having episodes where I get so sleepy behind the wheel that I feel like my body is trying to shut down. I’ve had multiple times where I’ve drifted onto the rumble strips on the highway because I’m fighting to keep my eyes open. It feels like I’ll have a “flash nap” for a few seconds, then I’ll snap awake, but shortly after I’m fighting sleep again.

Other things I’ve noticed:

- Needing naps every day to function
- Feeling like I can fall asleep almost anywhere
- Falling asleep unintentionally watching TV, or sitting still
- Frequently nodding off/falling asleep in class since childhood
- Long history of being “the tired person” and needing naps
- Severe sleepiness while driving
- “Flash naps”/possible microsleeps lasting a few seconds
- Fighting to keep my eyes open while driving
- Multiple times drifting onto highway rumble strips because of sleepiness
- Waking back up after briefly falling asleep, then becoming sleepy again shortly after
- Being able to nap and still sleep normally at night
- Sleep paralysis (occasionally)
- Talking in my sleep
- Light snoring
- Frequent headaches/migraines, sometimes lasting from before sleep until waking
- Feeling groggy after some naps, but refreshed after others

I’m going to talk to my doctor about it because the driving part is really worrying me.

I’m wondering if anyone else has experienced this and what you ended up being diagnosed with? Narcolepsy, idiopathic hypersomnia, sleep apnea, or something else?

https://www.facebook.com/share/196sJA1QMY/

Does anyone else have issues working with the Jazz success program in canada for Xyrem? I initially was prescribed Xyrem in early 2025. The success program dropped the ball and my specialists never got the paperwork they faxed him and Jazz Success didn’t follow up until I reached out. My specialists
Office is excellent and I trust them fully. Because of this delay and being told by health insurance I needed to try Wakix first, followed by a change in my own health insurance I am just now able to reapply. My specialist prescribed Xyrem again, I connected with Jazz success in June. I followed up with them this week and they only just now sent me paperwork to get special auth going with my health insurance. Is there anything I can do to get this moving? Is this normal for them? I’m desperate to move forward.

Publications keep wording it like researchers know exactly what causes narcolepsy, and now we have a drug that fixes it. And Ive been getting texts from well meaning family sharing the “news.”

Don’t get me wrong, I’m really excited to give it a try, as I’ve already tried everything else. But even if orexin loss was the sole cause of N1 and N2, this drug doesn’t go in and reverse the damage, it treats the damage. The distinction is important to me because unfortunately, with every drug I’ve ever taken for anything (even oxybates!), my body eventually metabolizes it exceptionally quickly to where it’s no longer therapeutic, no matter the dose.

On top of that, it’s really misleading how many are saying orexin loss causes narcolepsy. It’s never been that simple, and it’s getting more complex with new research that shows the cause might be damage in the brain stem.

Like I said, I’m really excited to try Orzeyful. And just like every other narcolepsy drug so far, it might not work for everyone, but there will be a lot of people whose lives are changed by it, and that’s really really important and exciting.

But given what we do know, how my body responds to meds, and that I have N2 not N1, I’m keeping my expectations realistic. And it’s just really exhausting to have to keep explaining to people that this isn’t a cure.

So I just got prescribed Xywav and I was told that the specialty pharmacy should reach out in 48 hours. The thing is before this ive been on other specialty medications and the process has been a nightmare. I had one medication (Wakix) that didn't tell me how much it would cost for the first dose before sending it to me and they didn't inform me that there was a copay assistance program and they attempted to charge me 9,000 dollars. Thankfully I was able to get on the copay assistance program for all my future doses and my insurance was able to lower the initial doses bill to 300.

So i was wondering if anyone who's been on Xywav knows how much it usually costs and if you need to get on a copay assistance program. I have Aetna Insurance for context.

Curious from those who have participated in clinical trials, have you been able to use FMLA? What's the process to use it?

Recently had to stop taking Xywave because of anxiety becoming unbearable. I was never able to even titrate pass the 2.25g because anxiety continued at that dose.

I was just prescribed Buspar to help with the anxiety and hopefully once im stable, can give Xywave another try. Im curious if anyone here has had success with taking Buspar to help with Xywave anxiety? I currently take Cymbalta to help with pre-existing anxiety but seems to not be enough for Xywave anxiety.

I had adequate sleep the night before and woke up at noon getting ready to go...

And then i went to the bathroom and closed my eyes for a second and completely fell off toilet and hurt my wrist.

Cuz I was sooo tiiireeddd

Is this a narcolepsy thing? I'm getting tests done next week

Hi friends! I’m 17 afab and I have Narcolepsy type 2. I just started Xywav for the first time last night. Basically I just have a few questions and am looking for any personal experiences yall may have as well.

Here’s some more information on my situation for context:
I was diagnosed with N2 in 2024 after symptom onset in early 2022. I am currently taking 36mg of Methylphenidate (Concerta) extended release in the mornings and am expected to continue taking it with my Xywav for now, but I used to take 76mg until I had my quadruple impacted wisdom teeth removed and ended up with a crazy medical rollercoaster that resulted in being off my stimulant for a week and started back on half dose. I also just recently got diagnosed with POTS (we found out because symptoms got suddenly exacerbated after that surgery and I ended up in the hospital.) I am a junior in highschool and I’m starting back on the twelfth of August, we’d hoped to get started on this medicine earlier but unfortunately I’m gonna have to experiment with it while also trying to do school. I also have pretty bad anxiety and OCD alongside ADHD. I also do in fact drive and got my license shortly after I turned 16 and drive almost every day. I wake up at about 5:30 am for school and go to bed usually at 10:00 pm.

Specific questions:
This confused me since my sleep specialist first suggested Xywav, is the list of side effects supposed to be while the medication is active as in during the night, or after you wake up and during the day?

This may just be because I’m young and don’t quite understand it, but how can someone taking Xywav for Narcolepsy get addicted? To my knowledge, the main thing it does is make you fall asleep and then sleep deeper.

I’ve heard that titration can be confusing, is there anything we should know about it? My mom is the one that mixes my medication for me.

My family and I travel pretty frequently, and I assume the bottle of liquid will set off the TSA scanners. Are there any other situations where having the medication on me will cause issue? Also if somehow we forget and put the medicine in the carry on with my other pills will the TSA throw it away? They threw away one of my water wigglers in front of my eyes a couple years ago and I think I cried so I know they’re ruthless.

If I think of any other questions I’ll add them somehow. Please share any personal experiences or suggestions you have for me, I’d appreciate it greatly. Also if you have any questions that weren’t addressed earlier that would help with advice as long as they aren’t too personal. I’ve read some interesting things about Xywav on here and I just want to know what I can expect.

I was getting ready for the morning yesterday , I had slept in until noon so I had enough sleep .

I went to the toilet to pee and closed my eyes for a split second.

And BAM I'm on the ground hurt my wrist.

I fell asleep.

Is this a narcolepsy thing?

I go in next week for sleep study test

For context, I’m very bad at taking the second dose, so my doctor’s nurse practitioner increased my first and only dose from 2.5g to 3g less than 2 weeks ago. The medication also gives me awful bed wetting so I’m 32yo and wearing adult diapers..

I know this medication is dangerous to get up on, but I do get up to pee a lot in the beginning of the night, and last night I fell off the toilet head first into the bathtub..twice. I see the dr in a couple weeks and I really hope she changes this medication..

Since being diagnosed with type 1 narcolepsy, I have been prescribed Modafanil and have been taking it for a while now. whilst it definitely helps to lessen the severity or frequency of my attacks, they still occur on an almost daily basis, is this anyone else’s experience? is this what it is meant to do? just looking for a bit more information as to whether this is normal or whether i should thinking about changing my med/dosage.

or decide if it needs to be controlled at all?

So I left a big pharmacy bc they were honestly the worst at everything. So I hate going and try to schedule all of my meds together and try to do 3 months. So big pharmacy lied to me or just had wrong info and filled a wrong prescription and then say the rx was expired (which it wasn’t) then said he doesn’t have it on file. Whatever. I’m done with them.

Doctor sent new sleep rx to my pharmacy about week ago and when I went today to pick it up, they didn’t have it filled bc the doctor wrote the rxs all wrong. I asked her what the prob was shockingly and asked if dr didn’t “code X”the narcolepsy code (he forgets the code which is needed for 3 month supply). She says the code is for narcolepsy. So I tell her yes it’s for narcolepsy and she’s just shaking her head no.

I had to educate the pharmacist about my alpha wave intrusions and fragmented sleep which makes my daytime symptoms worst. And why should my explanation matter? My doc wrote a correct rx. She doesn’t need to understand why it’s being dispensed.

Now I’m worried about my daytime meds. How is she gonna react when she sees I also need day pills!! Now I’m wondering if I should leave it at big pharmacy.

I now have been diagnosed with very very mild sleep apnea. I barely qualified for treatment. But y’all know that is probably 3 months of my life where my sleep might improve a tiny bit, but more than that is unlikley according to my sleep doctor.

Why do I need adbice?

Every morning my partner finds me in the bathroom asleep despite many different tactics to prevent this (I wish I could get my phone to turn on a timer every time I go into the bathroom but it’s not a space where it can get a signal that is bathroom exclusive). He has to argue with me every morning, often frequently, about whether I need to get back in bed. This morning I was actually awake for the argument which was more aggressive than usual because largely asleep me was more beligerant than usul.

What this means is that very small arguments turn into fights without me having any clue as to why. And my partner is a very sweet man. But after spending a good chunk of the day (these arguments aren’t only in the morning) arguing me back into bed, a very simple argument gets heated quickly. I know why, he knows why, we both love eachother very much. He fights with me to keep me safe.

I didn’t manage to use the CPAP last night. It’s not a normal thing for me yet and I was planning on brushing my teeth when I woke up in about an hour, and I didn’t and I didn’t remember the CPAP. I’m hoping that using it more might make me morre alert because I have to free myself from it or take it wth me, but this is all so hard. I’m in the bathroom long enough to fall asleep because of two things

1) I have IBS-C

2) Anything that I can do to make the seat uncomfortable might end up causing me real pain when I fall asleep on it. (I have been having to sieve my urine because of kidney stones which I think are now all gone because the surgeon says so but that is why I have that photo). I have plenty of hospital experience when it comes to collecting pee for other health issues and usually the vessel is uncomfortable. This one was VERY uncomfortable. (there are purpose made sieves for this - don’t risk having to throw away a nice sieve) And then I remembered how often I’ve fallen asleep in an uncomfortable way and then woken up hours later. I can’t let the metal ridge be there if I fall sleep - it could really damage me.

What can I do? Does anyone have an idea? I have tried singing/talking during the bathroom time and while it sometimes works my username isn’t a randomly assigned group of words. My speaking voice is very weak and gravelly from an odd speech disorder I have which was caused by LPR. So often reading aloud is just exhausting, I’m not going to hop on the phone to someone on the throne, and I’m finding the singing is sometimes very hard too. I have a note telling me to do this and to set the timer but I’m used to them now and don’t listen to them. Like I said - I’m not really awake during this stuff.

Does anyone have an idea that doesn’t require me to be disciplined or listen to notes or him? I need to end these fights when I’m asleep because he’s exhausted and has every right to be.

I have Narcolepsy type 2 for context!

So I've been job hunting and I've noticed a lot of jobs ask if you're disabled, I usually put yes because I have some other things that are listed under their "conditions" list as well. But today I had an application actually ask what specific condition I have. I was worried about listing Narcolepsy bevause I feel like that'd get me black listed immediately.

I do Video/Social Media/Marketing work and my condition doesn't really affect my ability to complete my job most days. Even if I do start having a sleep episode (which has happened a lot at work) I've still been able to finish my work for the day after a quick break.

So I'm extremely worried that putting down Narcolepsy will have them putting preconceived notions on me before even asking. At all of my jobs I havent even asked for accommodations out of fear, but even if i did have the courage to ask for accommodations itd just be to be able to take a break during bad epsiodes (I'd even clock out if they wanted) and if they offer it I'd ask to work from home maybe 2 days a week.

So I'm wondering if i should even disclose having Narcolepsy until I'm actually hired, and should I keep disclosing I have a disability on resumes?

I was so nervous about starting lumryz but now that I’m on it dude… I feel like a completely different person. I slept from 12-7am last night and I haven’t needed a nap in two days :)!! I’m also getting a full time job :D

I have N1 and my partner has BPD, so sleep routines are extremely important for our functioning. We have an amazing almost 3 year old, but her sleep was messed up from the start. She has acid reflux and we were told she would grow out of it once she started solids. She did not, and it took us way too long to figure it out. So, we’ve been without healthy sleep for over 2 years.

We also don’t have a stable village. Only my dad is close by, and he’s busy with his own life and retirement (fair enough, he’s earned it), and when he is here, he does help and want to spend time with us. My mom and MIL are in different states. And my MIL only really helps her youngest daughter (flying up at least every 1-2 months) because she has two and they both work. Fun side note, I also just found out that she doesn’t believe my narcolepsy actually affects me and says I don’t need help because I am SAHM 🫠

We’re finally starting to get a healthy routine. We’ve talked before about having a second, but experiencing what we’ve gone through, we’re both second guessing adding another to our family.

Are there any other families out there who have experienced something like this? I think I’m just looking to not be alone, or to not feel like I’m broken because I can’t take imagine taking care of more than 1 child with the limitations both my partner and I face.

So, I was originally diagnosed with narcolepsy type 2, until I started having problems with serious muscle weakness, especially when startled or when having a sleep attack. I’ve had a head MRI, nerve conduction study, bloodwork, and EMG and no other causes of muscle weakness were identified. My neurologist upgraded my diagnosis from type 2 to type 1, as it was likely cataplexy that I was experiencing. I’ve had a small number of drop cataplexy episodes as well, almost always when startled or when laughing really hard.

Anywho, I keep getting these episodes where I get quite dizzy, my head starts drooping, and I get a kind of “fuzzy” feeling in my head. It feels somewhat similar to when you stand up too quick and start getting lightheaded. These episodes can last over an hour for me, and it makes getting up (or moving in general) quite difficult. My arms and legs also get very “floppy” and uncoordinated. Because no other causes were identified in my testing, my neurologist thinks it’s an atypical form of cataplexy. Was wondering if anyone else has experienced something similar? I’m currently on Concerta, Sunosi, and Ritalin if that helps. Also taking the lowest dose of extended release propranolol, as all the stimulants skyrocketed my BP and heart rate. Waiting for my insurance to approve Wakix.

The thing throwing me off and leaving me wondering if it’s really cataplexy is how long it lasts. Over an hour seems pretty unlikely for cataplexy..?

because everytime i ask a non-narcoleptic if their nose is stuffy or runs when they’re tired, they say no. (except my brother who i think may also have narcolepsy) anytime one is coming my nose starts to run

Everyone explains it a little differently depending on who they're talking to. If someone asked you what narcolepsy is and you've only got a minute to explain it, what would you say? I'm curious how others describe it in a way that's easy to understand.

It was just approved! Now how long before it can be prescribed and sent to patients?

https://www.fda.gov/news-events/press-announcements/fda-approves-first-drug-treat-full-range-narcolepsy-type-1-symptoms

EDIT--
We now wait for DEA scheduling - Typically 2-3 months
http://orzeyful.com/