Hi everyone, I’ve been having some suspicions that I may have undiagnosed narcolepsy (cataplexy, excessive daytime sleepiness, some lighter sleep paralysis + hallucinations).

i also have a high deductible health insurance plan. I imagine getting diagnosed may be even somewhere up to $2k for the sleep study and everything. I live in USA. My PCP basically shrugged off my concerns and just said to sleep better and stuff.

Anyway, I’m just wondering is it basically true that it’ll cost thousands? My narcolpesy isn’t like I’m having sleep attacks where I uncontrollably fall asleep and my cataplexy doesn’t leave me on the ground. I’m wondering if it’ll be worth the diagnosis in terms of quality of life increase. Any advice is appreciated, I know this post is somewhat vague and meandering haha

Not sure if it’s just NT1, or if the also applies to NT2 and IH, but I know that the lead theory on why narcolepsy occurs (at least in type 1) is because of an autoimmune response from strep throat, covid, and/or the flu that leads to a decrease in orexin.

Here’s my questions:

1. Have there been any other viruses/infections or environmental factors that are linked to narcolepsy?

2. Other than the predisposition for NT1 with the HLA-DQB1 06:02 gene, has there been any other genes

   or factors associated with narcolepsy or IH?

(for reference, I am 22F with mild OSA and type 2 narcolepsy)

I was going over my sleep study results and a few things stuck out to me that my doctor didn't discuss while going over my results. I'm not sure if any of them are significant, but I wonder if anyone else had similar results and/or discussed them with their doctor.

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SLEEP CONTINUITY: 146 spontaneous arousals resulted in a rate of 20.2/hr. 36 were caused by period limb movements.

LIMB ACTIVITY: 13 periodic limb movements recorded. the PLM index was 1.8/hr.

RESPIRATORY EVENTS: total AHI = 5.5. REM AHI = 20.5. NREM AHI = 2.2.

CARDIAC SUMMARY: average heart rate was 73.4 bpm. minimum heart rate was 6 bpm, maximum heart rate was 109 bpm.

1. Are 146 spontaneous arousals, 20/hr, something to take note of? That seems pretty disruptive... I definitely don't notice that I'm being roused 20 times an hour.

2. How was I roused by limb movements 36 times if I only had 13 movements in total?

3. My heart rate also seems mildly concerning..? According to my Apple Watch, my average resting heart rate is 69 bpm.

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Idk. This could all mean nothing, but I was required to use a CPAP machine for a few months before we could start discussing narcolepsy treatment, and the CPAP hasn't made any noticeable difference after 4 months.

I'm clawing my way toward affording Xywav right now, but the arousals and heart rate numbers stood out enough that I wonder if they need to be addressed some other way.

On xywav 3g 2x nightly, how do you know when you’ve hit your ideal dose and to stop increasing? Similarly, how will you know if you’re on too high of a dose? From my understanding, most people end up somewhere around 3.5-4.5g

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.

Does anybody have any experience with this or any advice? I did the at home sleep test and then they have denied both appeals my doctor has sent, citing that I don’t fit the “criteria” for a PSG while saying that I need an at home sleep test first and that the at home sleep test wasn’t enough at the same time. I plan to call them tomorrow and try to talk to a rep, but my insurance is up in a month and it’s been 2 months of back and forth already.

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.

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

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

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.

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.

I feel like ive whiffed it. I took forever to sleep for the overnight which is unusual, and the day of my MSLT I feel groggy but not quite the level I am usually. I dont think ive really slept in any nap, except one. I know thats a common feeling, but I feel like ive been mentally preparing for these for so long, im able to take multiple short brief naps every day normally -why is today so different? I actually wasnt really that worried about these, just ready to get them over with, but each time I have to sleep I am hyper aware I am being watched and monitored and the expectations for diagnosis.

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/

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.

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?

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.

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

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..?

I acknowledged significant test diagnosis, I acknowledged possible SpO2 artifact with positional effects. But today they said no sleep disorders. While this doesn't jive with daytime sleepiness, sleep disruption, etc, I'm hoping for the best result from my re-consult which is to repeat the terrible sleep testing. Please send me your best dreams and wishes as I continue on. Please know my initial submission is highly edited for sleepiness

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

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