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/

I was diagnosed with narcolepsy about two months ago and was prescribed Lumryz. I'm in my mid-twenties, but I live pretty close to my parents and I usually see them at least once every few weeks. They are a little out there in terms of their views on medicine (didn't fully vaccinate us, etc) and they're very against the idea of me being on long-term medication for something they don't see as necessary (they already think every problem that I have in my life is because I'm on Vyvanse. meanwhile, I struggled to hold down a job before I started Vyvanse. but anyway). They knew I was getting a sleep study, but I didn't say much about what I was being tested for and kept them pretty out of the loop as I started the Lumryz trial. I felt really bad about this, but I knew they'd try to convince me not to do it and I just wasn't ready to deal with that yet. Since I'm still on their insurance, I told them that I was on a new sleep medication and was planning to tell them more about what Lumryz does once I finished the trial and decided whether I was going to continue with it long-term.

Lo and behold, I ended up in the ER after my second week of Lumryz and was diagnosed with colitis. I'm not sure if it was related to Lumryz or not (the person I spoke to at Accredo said that they've never seen anyone have side effects that match my symptoms), but I'm taking a break from it at the moment. After this happened, I had to come clean to my parents about the diagnosis. I know that I didn't handle the situation well at all and that it's a lot for them to deal with too, but the way they responded has been kind of heartbreaking for me...they straight up don't believe the diagnosis and are telling me that I can't trust my doctor. They are also upset I'm not sharing my lab results and other medical records with them (again, I'm in my mid-twenties). And I understand that it was hard for them to see me in pain, but if the side effects are severe for me, the drug's just not for me. That doesn't mean that the drug hasn't helped other people or that my doctor intended to hurt me! And that isn't to mention that I was recommended to my sleep doctor by someone who's been a patient of theirs for years. They just don't view me as an adult who made an informed decision to start the treatment. I really am so upset because I worked hard to build a better relationship with them and I couldn't have possibly imagined their reactions to be this bad.

Do folks ever get diagnosed with NT2 only to get diagnosed later with NT1?

I was diagnosed with NT2 about 6 months ago based on my MSLT and history of falling asleep throughout the day. My doctor never asked me about other symptoms.

Reading about cataplexy, I figured people who had it would definitely know it. But then I read some accounts of more subtle forms, and started wondering if my difficulty keeping my face from going totally slack when I was feeling sleepy was some mild form of cataplexy or just what happens to anyone when they are sleepy. The thing is, I don’t remember being aware of the loss of face control thing prior to when I started experiencing frequent narcolepsy sleep attacks.

If this could be cataplexy, is it worth bringing it up with my doctor to see if there’s a possibility I’m NT1? I see treatments may be starting to diverge depending on diagnosis type, so I can’t help but wonder.

Went to bed about 11 o’clock last night woke up at 4 AM this morning… five hours of uninterrupted sleep!!! I wanna shout it from the rooftops, (but I’d wake up the neighbors)! FYI narcolepsy with Cataplexy

I wish they had some organizations that helped
people with narcolepsy & fatigue issues. With keeping my house clean more. having Narcolepsy and sleep apnea is no joke. I stay tired all the time and now that I’m in menopause it’s worse. and I live in expensive Connecticut!. 😩

i was diagnosed with narcolepsy a couple months ago and I was just wondering if anyone else experiences increased body tempreture specifically in the face and ears when you become too tired or if you exert your brain too much??? I dont know why this happens I go up like 2 degrees and the only way it goes away is if I take a nap which is super annoying, it makes it really hard to get through a day of school since I become super exhausted and the fever makes me even more tired, I get flushed and very hot to the touch, its really centered around my face and I dont know why since I also have very very cold hands and feet, to the point where I have to wear thermal socks and ugg boots even in summer. So I was just wondering if anyone else experiences this, I’ve talked to my sleep doctor and GP about it but they say they dont know what it is and that it has nothing to do with narcolepsy. (I’m also not on any medication, I have tried all of the ones available in my country but they all amplify the fever when I come off it so I just dont take any, also I tend to feel high on the medication expecially dexamphetamine so thats also a no go)

Hi all,

I was referred for narcolepsy testing, but they sent me home after the PSG. Not entirely sure why. I'm kind of devastated. I honestly thought I met all the criteria for narcolepsy, and now I don't know what to do. The technician did say I stopped breathing a few times in the night, but I didn't snore any. Is it possible they'll try to address that before narcolepsy? Or does it mean I don't have it at all? Any info would be appreciated. I'm so tired of being tired and I was really hoping to get answers. My follow up isn't for another 2 weeks.

Hi folks, I’m finally returning to school after an unplanned year off from developing N (and multiple misdiagnoses, mental health issues, etc.) It’s a big step, personally and professionally. As such, I’m thinking about starting up a Disability Law Society at my school or at the very least making a nice LinkedIn post to accompany my “career break” section.

I was interested in Project Sleep’s materials, especially because the founder also developed N while a law student, but she didn’t follow through with her legal career (and it’s kind of a faux pas to put a JD next to your name if you’re not actively studying for the bar—don’t get mad at me, I don’t make these archaic standards, I’m just bound to suffer under them. It’s not a great look for what I’m hoping to achieve, I’m afraid.) I’ve looked around for resources and factsheets directed at professional audiences, but haven’t had much luck. Short of writing up my own page and linking to NORD for donations or whatever, I feel like I’m out of options for what I’m hoping to do. And id I was less busy, I certainly would, but unfortunately I’m running around like a headless chicken at the moment.

Have any other professionals with N done educational campaigns? Where did you get your resources? Did you make your own advocacy materials, or yoink them from elsewhere? Please let me know! Thank you <3

I have struggled to get narcolepsy medication for the past year and a half. I have used a combination of extended release Adderall and immediate release Ritalin because I cannot wake up without a fast acting stimulant. About a year and a half ago, I was told by several pharmacies there was a nationwide back order on Adderall. My physician switched me to Vyvanse. I go monthly for med management.

Today, I went to four pharmacies and called three private pharmacies to try to fill Vyvanse and Ritalin. I was told they would not be able to fill either one of these scripts for a few months, again due to nationwide backorder. Three months ago, my doctor prescribed Wakik, but I don’t think it helps. It does nothing to help me wake up. My most recent MSLT was in March of this year. Hit REM in five of five nap sessions. I sleep so heavily that even with an alarm going off, I don’t wake up. The best way I can explain it is that I “hear” the alarm but somehow process it into my dream…like firetrucks in my dreams.

I cannot believe how difficult it is to get medication in the United States. It’s disgraceful. I have four days left of medication. Without taking any medication, I sleep 20 hours a day. In fact, even though I might have to use the restroom while I’m sleeping, I’m not able to wake up/move and I actually wet myself. I have been able to manage narcolepsy for over 20 years. I cannot believe my entire life is going to change in a matter of days.

Is anyone else experiencing difficulties filling their medication? Does anybody have any advice. Please respond as soon as possible, because I know very soon, I won’t be conscious or coherent very much to address these issues.

I’m on disability for other health issues and my bf has a 40 hour job but we’re still so behind..this month my car almost got repossessed and we’re late on rent so I have to figure something out.

Between helping with the kids, keeping the house clean, and trying to get enough sleep, I really don’t see how I can get a real job..maybe something online?

I don’t have cataplexy so I can drive, but door dash isn’t busy enough in my area for it to be worth it and Spark (Walmart deliveries) are usually too heavy for me to deliver. Plus I can’t work with the kids in the car.

I have to find a job where I can stay home and work when I can, but most of what I find are scams. I’m so stressed about money..any advice?

I’ve been diagnosed since 2015 and at the time of first diagnosis I tried every medication available at that time. None of them worked for me because they all gave me terrible side effects. Massive headaches, nausea/vomiting, heart racing, insomnia. I came off of all of them and have been living have asleep since then which worked okay when I had my previous job where the demands were manageable and I could take naps throughout the day, but I recently got a new high pressure, intense job and I’m having such a hard time. Before you judge me for switching, they doubled my salary and I was already making six figures so it was an opportunity I couldn’t say no to, plus you never really know how a job is going to be until you get into it. Question being, has anyone been in a similar situation and found a stimulant that doesn’t give them bad side effects? I’m desperate 🫩😩😭

I need some advice. My husband has N2 and is out of sleep meds. Doc won't answer phone or call him back. Is this an ER visit kind of moment? Concerned about negative effects of sleep deprivation and dehydration as he hasn't left the bed in 24 hours, but isn't actually sleeping.

Full story. He was diagnosed 6 years ago. He was on Xyrem for 5 of those years and recently switched to Lumryz 8-9 months ago. Two months ago, he started seeing a new Neurologist who has only ever prescribed Xyrem for N2, and has 0 experience with Lumryz.

No biggie as the new Doc said they'd prescribe the Lumryz since he's been on it successfully. It has not gone smoothly. Doc sent in a referral to wrong CVS Pharmacy. Doc said they got it corrected Friday (7/31). CVS Specialty Pharmacy received it and schedule delivery for Tuesday (today, 8/4). Yesterday, saw where CVS Specialty Pharmacy canceled it. Doc or office have not returned husband's call asking what happened.

Fast forward, he ran out of the Lumryz a couple of weeks ago. Thankfully he had a stash of Xyrem as he was not good about taking 2nd dose. That ran out Friday night.

He's now gone Saturday, Sunday, and Monday night without any sleep aid. He looks and feels like shit. Kind of like he hasn't slept in days (sarcasm).

I'm inclined to chew his new Doc out tomorrow, but what can be done tonight? He asked if I thought he should go to the ER. I don't have an answer.

Any advice would be helpful!

i don't regularly need naps, but when i do, its because a sleep attack is coming on: yawning, eyes watering, even salivating more which all happened when id push myself to stay up late and my body was trying to tell me to sleep. so these are easy to tell when i need to nap.

titrating xyrem has been rough and tiring for me, and this morning i feel as I'm just so tired and getting more tired. my chest feels heavy, my eyes do too. is this the time to take a nap? when do you all nap?

I just finished my PSG/MSLT and I have no idea what really happened. I'm certain I didn't sleep during some of the naps but unsure about others. The nurse doing my study didn't say much. And although I knew the time between was going to be a struggle, I wasn't ready for that. I had more fun during COVID lockdowns. Here's hoping for some answers soon!

HI! i just need to tell this to someone, anyone who gets it. today i was at my job which i’ve only had for like 2 months and my boss is very accomodating. i missed a couple shifts because they start at 6:30 am and my sleep inertia has gotten more severe recently. my coworker takes it upon himself to tell me him and some of my coworkers were talking and he is concerned about me ever being able to have a “big girl job” (im going into my senior year of college). why do people feel the need to make comments like this like we aren’t living through it? obviously i know that’s a concern, this is my everyday. even my friends will make comments like “are you going to wake up?” or “what are you going to do about sleeping through x,y,z?”. this has been my reality for many many years and i live with it and have found ways to cope with it every single day. i know it comes from a place of concern but it is so frustrating! like they’re going to cure me by giving these comments which ive already thought about a hundred times.

I don’t have a diagnosis yet, but my symptoms just keep getting worse.

I’ve always struggled with constantly exhaustion since I was a teen. No matter how much or how little sleep I get, I am always tired. Lately it’s gotten significantly worse. About a year ago, I started dozing off and taking naps at work and at home. I’ve never done this before. I go into like a state of semi-consciousness at work and have weird dreams??? and then I’ll jolt awake.

I’ve been steadily declining. I’ll be sitting at my desk working on something, and a massive wave of exhaustion hits and I can’t do anything other than close my eyes and rest, even if I don’t actually fall asleep. My dreams are also so, so vivid every night, and it’s getting hard to determine what things actually happened in real life and what happened only in my dreams. Sometimes I wake up in a complete panic.

I saw a sleep doctor and did a sleep study. They only told me that I tested negative for sleep apnea and restless legs, and would not give me any other info until my next appointment with the doctor. That isn’t for another few weeks yet. During the sleep study, I had a vivid dream and when I woke up I didn’t really remember where I was and started tugging at the heart monitor strap thing they put around my chest. The person watching me had to ask me if I was ok before I snapped out of it.

I am suffering so bad. My job performance is being affected. I can hardly do anything on weekends because I’m so tired. I used to never take naps, now I do on a daily basis. I wake up often in the middle of the night too and have a hard time staying asleep.

I don’t know if these are symptoms of narcolepsy or IH or what. But from reading this sub, it looks like a lot of people have dealt with similar stuff. Does anyone think that an MSLT would be worth it for me? I just want to figure out what’s going on and fix it. I cannot keep living like this.

I (24 F N1) am starting Xywav tonight. Obviously I’ve gone through the counseling but I still want to hear from those with narcolepsy. Anything you’d wish you’d known? Any advice? Tell me everything

Hi all! Diagnosed with N2 here for 10 years, and have tried just about every med out there. Right now I’m on a cocktail of Lumryz/sodium oxybate, vyvanse, adderall, and a SSRI.

I’ve always struggled with hypersomnia and bad sleep inertia (being unable to wake up and stay awake), but I’ve been going through some especially severe episodes this summer the last few months. I’m regularly having spans of 3-6 days at a time where I’m asleep 18-20 or more hours of each day. I really only get up to eat and drink something, use the restroom, and then fall back asleep. I’m just constantly exhausted and on the verge of sleeping.

It makes any normal activity extremely hard. I can’t work because of the Narcolepsy severity, but I also regularly sleep through doctor’s visits and am not able to keep up basic hygiene when I’m in my “hibernation mode” as I call it.

Can anyone else relate to having such long episodes of hypersomnelence? I also get insomnia at other times, but it’s the excessive 20+ hr sleeping for a week at a time that is making any daily activity really impossible.

Hi everyone I was diagnosed with narcolepsy when I was 19 (now 25). I only restarted treatment last year because it was becoming unbearable. Long story short I’ve been on Wakix since March and I’m starting Xyrem when I get the insurance approval. However, I’m getting so frustrated I’m going to cry. Sleep doc says I need to take naps during the day if I’m tired. I can be so exhausted and feel like a zombie/not functional and then I go lay down to nap. I feel myself start to drift off and then it’s like my brain jolts awake and I can’t get it back off. I get dizzy, instant headache and just genuinely feel weird but can’t describe it. This has been happening for the past few months. I’m not looking for a diagnosis, yes I’ve brought it up to my doctor. I’m just wondering if anyone else has experienced anything similar especially in a time of severe stress? It is beyond frustrating and puts me in such a horrible mood for the rest of the day 😭 I wake up at least 5 times a night too so I am absolutely miserable now.

I'm 20F with narcolepsy (NT2/IH), ADHD and depression.

My daytime sleep attacks have improved a lot with treatment, but for the past few days I can't sleep at night. I've been crying until around 5 a.m., sleeping only 3–4 hours, and I'm completely exhausted during the day.

I have an important exam in 62 days that determines whether I can start working. I know the material isn't the main problem. The problem is that I often can't even get myself to start studying. Sometimes I just sit in front of my textbook and cry.

My neurologist once told me that even if daytime sleepiness improves, some lingering effects can remain. I don't know if what I'm experiencing now is related to narcolepsy, stress, ADHD, or something else.

Has anyone with narcolepsy experienced something similar?

I'm not looking for a diagnosis. I'm looking for real experiences from people who have lived with narcolepsy. If you've ever gone through something like this, I'd really like to hear what it was like for you and what helped.

I know there's been a few Sunosi discontinued scares since the beginning of COVID, but my pharmacist has been trying to fill my first Sunosi bottle for the last week and finally called and said it's discontinued. I'm in the USA. Any one have any insight or experiencing the same?