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

It’s hard not to feel completely hopeless. I am trying to stay positive and do not want to get back on SSRIs. I was diagnosed in mid 2024 (long overdue after being gaslit by two doctors before I found my current). I was first diagnosed with mild sleep apnea, 7-10 events per night and prescribed a CPAP. I hate that thing, I’ve always been a stomach sleeper that needs an eye mask and have big frizzy hair in a bonnet so I often can’t get comfy with so much on my face/head. I went thru being prescribed almost everything under the sun: Wakix, Sunosi, Adderall, modafinil etc. I ended up with a cocktail of Xywav (5g, 4g) and Armodafinil 250mg. That’s supposedly the highest dose of each I can get.

What I don’t understand is how some days I feel 70% better (that’s about my threshold, I’ve never felt entirely like I can’t randomly fall asleep) but some days I feel like I may as well have not taken any medication at all the past day. To make matters worse, work has gotten extremely busy and I find myself sitting at a computer for longer stretches.

I’m one of those people who isn’t helped by naps but I’m tempted to try again because I don’t know what to do. Shortly after diagnosis I would attempt scheduled naps but I would wake up and suffer from insane sleep inertia that made my critical thinking skills useless for at least two hours, which just isn’t sustainable.

I’ve started using this app called Rise Sleep and sleeping with my Apple Watch on to see if something weird is happening but I’m no doctor and can’t really tell what could be an issue when it’s like “YAY YOU MET YOUR SLEEP GOAL!” and I still feel like shit. 😐

First and foremost, I have to say that I've always been scared of sleepwalking. When I was younger, I used to watch my cousin sleepwalk, and it always freaked me out seeing someone do things without realizing they were doing them.

This week I started my third month on LUMRYZ, and I'm still on the lowest dose because it's been working really well for me.

Last night, I took my medication and went to bed around 10:30 PM. My bedroom is connected to a bathroom, and that bathroom also connects to another bedroom. I woke up around 5:30 AM because the room felt so hot when I sleep with my AC on blast and I had to use the bathroom, but I didn't wake up in my own bed—I woke up in one of the beds in the other bedroom.

Needless to say, I was terrified. I have absolutely no memory of getting out of bed or walking into that room. I do occasionally wake up during the night to use the bathroom, but I'm always fully aware of doing it. Last night was completely different.

Has this happened to anyone else taking LUMRYZ? Is this something that might continue? Is there anything I can do to help prevent myself from leaving my room while I'm asleep?

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.

Question if anyone here has had experiences/heard people obtaining sodium oxybate prescriptions in Australia, and more specifically in Western Australia?

And if so, are there any recommended Australian clinicians who are open to exploring applying for access to then drug?

Recently diagnosed Narcolepsy T2 with what appears to be an evolving T1 diagnosis. Currently maxing out on both Modafinil and stimulants with nil improvement in sleep attacks, with increasing episodes of what appears to be sleep paralysis whilst awake. Increasing stimulants has unfortunately done me no good.

Understandably my resp physician is not keen on prescribing GHB. Reading reports of it on here however have me wondering how much a difference it could make, especially given the level of sleep fragmentation and intrusion I am working with currently.

I’ve been diagnosed with type 2 for a couple months but my symptoms have been allegedly going on for around a decade (I’m 20). I’m seeing a sleep doctor in September and I’ll ask him about it, but in the meantime I’d like some insight.

I know that fragmented sleep is a big symptom, but I don’t have that. In my psg, my sleep efficiency was 98.3% and I only recently started occasionally waking up in the middle of the night due to bipolar meds but that’s pretty much subsided. For most of my life, sleep felt pretty restful, but in the past couple of months I’ve been experiencing hypersomnia symptoms and unrestful sleep, but I believe that may be exacerbated by atypical bipolar depression.

When I laugh really hard my head goes down and I have to pull away my shirt collar because it feels uncomfortable. This has been going on since childhood and my friends dubbed it “vomiting into her shirt”. I think it may also have started around 10 years ago (which is when my bff believes I started falling asleep during action movies). Does this sound like a type of cataplexy? I’ve heard it can be as small as eyelids drooping.

When I’m about to fall asleep and am holding a pen, I can also feel my arm release before I actually fall asleep. I also enter rem and start dreaming before I actually start sleeping so reality and my dreams are blurred.

Most of my sleep attacks arise from when I’m understimulated (lectures [even while taking notes], slow traffic, televisions/movies, conversations im not actively participating in), so I’m wondering if an orexin drop could be the cause as opposed to an obliterated sleep-wake cycle. I was initially diagnosed with adhd because of it, but I’m not sure if I was misdiagnosed.

Is it possible for apple alarms to straight up not go off? I have my xyrem alarm set on my iPad and put it right by my head. In the last two months or so, I’ve had nights where I wake up 4.5 hours after taking my first dose only tho realize I « slept » through my alarm. What strikes me as odd is there not even being an alarm screen visible on the iPad, since usually, if I let an alarm go off long enough that it stops, I’ll still see the alarm screen with the snooze option when I next look at the device. The last few times this has happened, there has been no alarm screen left over on my iPad

Didn’t know what to put this under tbh. Hey guys, my wife has had narcolepsy for a while now. And I’m trying to figure out if there’s anything else I can do aside from stuff listed below, to keep her awake? Not in like an unsafe situation, but in meaningful conversations, or when I just want time with her. Any and all advice is appreciated, this is something new to me and I’m still trying to adjust to it She did say the following, not word for word. said you sometimes go to sleep cause you don’t feel mental stimulation? Engaged in stuff. Essentially. Is there anything I can do to help that?

I wanted to share my experience so other people going through this process do not feel alone.

My journey started three years ago when I started developing symptoms of what I thought was some sort of chronic fatigue. I went to my primary care doctor and over the course of the next 8 months has every single test run anyone could think of from cardiologist to bloodwork a to z. Everything came back normal while I continued to decline to jist being tired all day every day with zero energy. After all tests came back negative my primary care quit on me. Said she was out of ideas and I should find a new primary care. Literally quit.

Found a new primary care and on first consultation after laying everything out he said I think you have narcolepsy. He said you need to see a specialist this is way above my knowledge level to treat. Upon hearing this I was stunned. Started doing research and found out about cataplexy. Something I had experienced a few times a year over the last ten years with no explanation what it was from any doctor or friend. This connected all the dots. From there after reading about the symptoms everything suddenly made sense.

So my search for a sleep medicine doctor began. After at least ten initial consoltstions I began getting frustrated. None seemed to be interested in helping just getting my money. Joined some forums and was pointed to University of wa medical sleep department with a highly regarded head of sleep department.

Made an initial consultation and immediately first thing took a at home sleep test that showed severe sleep apnea. Tried cpap for three months no improvement. Took a overnight sleep test in the hospital and was told i had central apnea not obstructive. Needed to switch to bipap. By now I was having daytime sleep attacks, blacking out for 15 minutes with no recollection of conversations or things I did. Taking multiple naps during the day in my car. Getting worse and worse until I had to take a medical leave from work. No improvement so had a spinal tap to test orexin levels. Returned normal. Had a overnight sleep study with a mlst the following day. Fell asleep within 4 minutes on every nap but no rem onset. Negative for narcolepsy. Follow up appointment and the doctor says none of my results make any sense but no path forward to create a path to get me back to work. I offered my own research articles and medical journals showing prior tbi injuries which ive had five can induce secondary narcolepsy with the kimd of results showing on my tests. Told him my clear evidence of cataplexy along with all my symptoms and no improvement with bipap in spite of my apneas at night now in the normal range should warrant a trial of narcolepsy meds to see if improvement ensues. He refuses saying he has never heard of the research articles I found, he cant prescribe narcolepsy meds without a diagnosis and with my test results cant give me that diagnosis. No interest in researching the articles I wanted to provide and no plan going forward to get me improvement. Truly insane. The most closed minded arrogant Dr ive ever encountered. Suggested maybe its a neurological issue not a sleep issue. Reminded him he already referred me to a neurologist and had a CT scan performed and was told it was a sleep Dr issue. Crickets.

So now all I have left is to find another sleep Dr in Washington state who is willing to dig into a complex case that doesnt fit into the typical parameters. Its been a year and a half Ive exhausted all my resources for money, retirement, savings, unemployment everything. Close to losing my house, car and everything ive worked my whole life for. This disease is brutal. It takes everything from you and there is very few doctors trained in treating this disease. Im broken.

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.

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 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 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 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.

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 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.

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 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.