Hi there! I was recently diagnosed with narcolepsy and with the diagnosis, I’m beginning to realize how my cataplexy manifests. My eyes are always droopy and my mouth is always partially open. It’s hard for me to laugh or smile because it takes so much energy. I drop stuff frequently and have noticed that I cut myself when I’m cooking because of my cataplexy! Are there any minor bits of cataplexy you notice in your life, aside from collapsing or having weak legs?

Hello all. I am a 48f with N1. I have to have a colonoscopy 😖 next week and cannot take Xywav 24 hours prior and after the procedure. It is scheduled in the middle of the week, so I am wondering if anyone has experience with this? Should I just assume I am taking 3 days off or will ambien atleast prevent me from insomnia without Xywav

I was on 10mg of adderall for a while, and taking 300mg of caffeine. Recently I've been increasing my adderall dosage and now I'm on 25mg ER and 5-10mg IR. But I've actually been getting more sleepy during the day, it's not lasting longer, and my sleeping has increased. I used to be okay with 10hrs of sleep but now I keep sleeping 14+ hrs until someone physically wakes me up. I don't know if it's the increase in adderall that's causing this or if it's getting worse in general. Has anyone also experienced this? I was reluctant to try oxybates but now it's looking like I have to.

While I was at the store, I came across a supplement called Maizinol, which claims to increase deep sleep. I researched and found that a study showed " Participants who received UP165 showed a statistically significant and dose-correlated reduction in salivary cortisol (up to 36%); an increase in deep sleep time (up to 30 minutes); increased total sleep time (up to 10%); an improvement in sleep quality (up to 49%), and an enhanced POMS (36–58%). Participants in the UP165 group showed a sevenfold increase in deep sleep time and a 10-fold increase in PSQI sleep quality improvement compared to placebo. Collectively, UP165 is a safe nutritional supplement clinically proven for a 24-hour support with better quality and efficiency of sleep at night and an improved mood state and overall well-being during the day. " Studies on this seem recent, but there are a couple.

It seems like it would be great for narcolepsy. I am currently on 30mg of adderall and sleeping 14+ hours a day, so something has to change. I am going to start trying this supplement, and if it doesn't work I'll try oxybates. No amount of sleep is restorative for me, so I'm really hoping this works. Has anyone else with N tried this supplement?

Just kinda feel frustrated and depressed right now. I stopped the medications I was told to quit (need to stop them for 2 weeks before the sleep study) and it just really sucks.

Not sure if I’m using this word correctly but I feel like I’m “spiraling.” I’m starting to feel more and more alone by the day, more and more depressed and hopeless, which is something I feel like I haven’t felt this strongly in a long time. I’ve been pretty happy! I’d get sad for no reason every once in a while but it’d pass pretty quick.. now it won’t go away.

I guess I’m just ranting a little about having to stop my medication for 2 weeks. Can’t wait to be able to go back on them, really feels like they just help me pull my life together.

So my doctor wants me to dial back on the Adderall, which I'm taking twice a day, down to one eventually. In the meantime while waiting for my Lumryz prescription he wants to tritate me up from my 4.5 Xywav dose to 6 before my sleep study on March 9. So far I was up to 5 and it felt manageable so I thought I could go straight up to 6 last night.

BIG MISTAKE. I woke up and the room was spinning and I was lucky enough to find a plastic bag. I puked for the first half hour of consciousness and it fucking burned.

So yeah.... Don't do what I did. Please titrate slowly lol.

I recently went up to 4g on Xywav for both doses, and I’m starting to feel mental clarity when I wake up and just lighter overall? Is that something ya’ll experienced, titrating up?

Oohf I’ve had a rough week! Hope everyone is doing better than I am and can enjoy their weekend with the best health possible. Cheers!

When I'm procrastinating and doomscrolling, I keep telling myself I need to get up, but it feels like my legs just can't manage it. I know that my legs are fully capable of getting off the couch, but it feels like it would take every ounce of energy in my body. The voice of my mother is in the back of my mind saying I'm just lazy. But this is normal (for PWN), right?

My psychiatric nurse practitioner and I recently discussed having me go back on a stimulant drug to treat my ADHD. But, she’s not a doctor, so she’ll need someone else in her clinic who can prescribe controlled substances to send it in for me. She asked that I get a letter from my sleep specialist stating that he’s okay with me taking a stimulant in addition to Lumryz (I have Type-1 Narcolepsy), because she said that the doctor in her clinic is going to see that I’m on another controlled substance, not recognize it, and more than likely automatically refuse to prescribe the stimulant because of it.

But when I talked to my sleep specialist (who previously had no issues with me being on a wakefulness promoting medication to treat my narcolepsy, he even prescribed them) he said that I’d have to come off of the Lumryz if I wanted to start a stimulant and offered no further explanation. (I understand that there are some differences between the wakefulness promoters and stimulants, but both can be used to treat narcolepsy.) Has anyone else had any issues getting ADHD meds while taking sodium oxybate?

Employment is being affected by both chronic fatigue and symptoms of narcolepsy. Sleep clinic tests all done, but have to wait another 4 months for results and appointment with the neurologist.

I've been working from home 9-5. Too much sickness absence now means this job is at risk. Occupational health assessment was a joke. Although I get to sit down all day (usually in bed) I am exhausted from the emotional toll of speaking to people who have significant problems.

My Symptoms: chronic fatigue, sleeping 12 hours per night, without having to work I can easily sleep during the day also. I feel most alert after being awake for too long also resulting in occasional insomnia where I don't sleep at all. If I could work from home at night it would be most ideal but there isn't a role like this - my job involves speaking to customers.

I've thought about working night shifts outside of the home but the driving and physical work would make fatigue worse.

I could leave a secure job and do locum work at night but this is not very dependable. But I could do 2 nights per week spread out and sleep inbetween, if I got lucky.

I can reduce my hours and start later which so far seems my best option, but concentrating, pressure, talking, is still exhausting and all I want to do is sleep all the time. Chronic fatigue is getting worse instead of better.

Do I need to stop working altogether and survive somehow on benefits? That would be its own kind of stress and don't think I can do it.

I've contacted my neurologist saying I need some meds but idk if I'll get any help prior to my results being processed which I'm told takes 3 months. I've barely been in work the past 2 months, and I'm so stressed out about what I should do employment wise. I'm too tired to even read the sickness absence policy this weekend. Maybe I will cope better on reduced hours and a later start but all I see is my ongoing suffering. Primary care doctor had no advice.

What would you do?

Hey!
I am a Computer Science student and I am currently working on a project on improving speech recognition for people with speech impairments caused by neurological disorders.
It would be great help if some of you could share some problems you face or someone you know faces with products like voice assistants or any speech to text platforms.Hey!
I am a Computer Science student and I am currently working on a project on improving speech recognition for people with speech impairments caused by neurological disorders.
It would be great help if some of you could share some problems you face or someone you know faces with products like voice assistants or any speech to text platforms.

One of the hardest things about living with narcolepsy is how misunderstood it is. People think it’s just about being “a little tired,” but it’s so much more than that. They don’t see the sleep attacks, the brain fog, or the cataplexy that makes you feel like your body isn’t even your own.

I’ve had friends roll their eyes when I cancel plans, coworkers act like I’m just making excuses, and even family members tell me to “just drink more coffee.” If only it were that simple. The worst part is when people assume I don’t want to try like I’m okay with living like this.

It’s exhausting having to explain over and over again what narcolepsy actually is. Some days, I just give up and stay quiet because it feels like no one really listens anyway. But other days, I wish I could make people understand, just for a moment, how much it impacts my life.

For anyone else feeling misunderstood, how do you deal with it? Do you educate people or just let it go?

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Hey everyone i just wanted to know about your experiences on solriamfetol and did you ever experience some negative like , sexual side effects etc thatnks everyone!

So before anyone writes me off that genetic testing isn’t diagnostic, I already know. I already have an MSLT test that shows positive for N2.

Here’s my question. Should I get genetic testing for my children’s knowledge? I have N2 based solely on an MSLT. I’ve never done the bloodwork for the marker or a lumbar puncture or anything else. I was diagnosed with N2 after my son was born. I knew I had N2 when I had my daughter, but I was still young, had baby fever, and, as an only child, always wanted at least 2 children.

Now, however, as my children grow, I worry about their future and the possibility of them wanting children. I’ve never had concerns about my son having narcolepsy as he he could probably function on just an hour of sleep a day (pretty significant ADHD). My daughter, however, did an MSLT in 2023 at the wonderful age of 8 (multiple factors that led to that). While she wasn’t diagnosed with narcolepsy and her blood work didn’t show the marker, the MSLT didn’t exactly show “normal” results. The doctor prescribed her singulair and flonose in the hopes that allergies were causing less than ideal sleep quality. Flonase was a battle to get her to take (she’s always been strong willed toward things she doesn’t like) and singulair was stopped after roughly 6 weeks (partly my fault as I didn’t have my N2 well managed and started forgetting to give it to her, thankfully). She seems to be doing ok, although some things are still questionable for her age (sleeping 12 hours when given the chance, extra moody when tired).

Since my daughter didn’t have the marker in her blood work, I’ve questioned if I should get genetically tested for narcolepsy, just for information purposes. With Google alone, it’s difficult to tell if actual genetic testing would be any different than the blood work. If there isn’t any difference in the blood work and genetic testing, does it reason to stand that I don’t have a genetic marker to pass on to my kids? Or is the test different and should I get it so I have the knowledge and when my kids are older, I can let them know if there is a possibility of their kids having narcolepsy? I know how I feel and I feel awful for myself and everyone who struggles with this. But the thought of knowing that I could be reason that someone I love suffers this too is painful. At least if I knew I could pass it to my kids and they not get it but could pass it to their kids, they could make a better, informed decision. And if they chose to still have kids, they would be more knowledgeable of the signs and symptoms to advocate for their children sooner.

Sorry for the long post, feeling very emotional right now.

(F 20) I have been taking adderall XR for about 3 years now for ADHD and recently got diagnosed with N2 in October. My pulmonologist put me on modafinil with the adderall and I tried it for 4 weeks and it worked great for a week and then stopped. The only thing it felt like it did was make my heart beat out of my chest. Since November I’ve been on sunosi and I am on the 150 mg daily. I will admit I feel better than I have in a long time but I’m still SO exhausted during the day. I guess I was under the impression that treatment would fix it but it’s really only helped about 30% of how I feel. Is this as good as it gets??? I mean I’ll take it, anything is better than nothing but if Its possible to feel better than this, then I want to.

I recently had an MSLT on a Friday and the clinic head technician called Tuesday and advised my test results were leaning towards Narcolepsy but she couldn’t give me the official diagnosis. She said I slept during all 5 naps and didn’t have any apneas happen though.

My cousin, who’s my nurse, texted and said “the sleep study showed a concern for narcolepsy” but I wasn’t sure if that is a narcolepsy diagnosis so I reached out to my doctor through our portal.

My doctor messaged me through the portal and said “I reviewed your sleep study and they high suspect narcolepsy. I am going to refer you to neurology.”

What I want to know is how were you diagnosed? Is what I’m getting a certain diagnosis or do I need to see neurology first?

Thanks for the info!

I understand this is counter to most evidence out there. I’m curious if anyone else with narcolepsy experiences this. It reminds me of how stimulants “slow down” or “have the opposite effect” on those with ADHD.

When I do THC/CBD, I can really tune in to a situation or what someone is saying to me. I can respond better. I solve problems easier. My boyfriend and most of my friends seem like it has the opposite effect on them.

This of course could be, probably is, totally unrelated to narcolepsy, but just thought I’d share. I’m super interested if anyone has any knowledge or thoughts on this.

I just got my sleep study results back (I was being tested for sleep apnea), and the doctor believes I have narcolepsy or idiopathic hypersomnia based on how quickly I get into REM sleep. I now go to the clinic in March for the in-person study with the napping.

My question: did a diagnosis change quality of life for you? Did medication significantly improve things? I’d love to hear some experiences!

I got sent home after 4naps from MLST and just curious on what that means. I don’t get to know my results until Feb 24th 😭

On the upside I could take all my meds the doctor didn't tell me to stop any of them. On the downside it's boring af. I brought my switch but without my Adderall I can't focus on it (I didn't want to be awake today for obvious reasons so I didn't bring it). 1 nap every 1-2 hours. I was tired before but a bitch can't turn down free food so now I've had McDonald's hash browns and tropical smoothie, causing my energy to go up a little. I feel like I probably didn't sleep so far in my naps. Maybe I did. Idk. The tech said he can't tell me because it's based on how I feel. Well idk how I feel 🙃. I feel like I'm hoping I didn't throw $1,000 into a volcano.

I’ve been calling multiple times a day for over a week and get the same thing “leave a voicemail and the next representative will return your call.”

No returned calls, nothing.

I just called the Harmony Biosciences hotline and talked to someone there. She put me on hold to call them herself, and back a few minutes later and also said she couldn’t get through.

Anyone else experiencing this? Any ideas on how else to contact them?

UPDATE: Calling the Harmony Biosciences hotline (800-833-7460) and asking them for help was the only thing that worked. They finally returned my call shortly after I did that.

Based in the UK and not sure if anyone else has had anything similar whilst trying to get some kind of diagnosis, but here we go.

Been signed off work now since May last year when I started randomly collapsing when experiencing strong emotions (mostly laughing).

Since then it’s been a journey to get some form of diagnosis. After bouncing around between different doctors, I finally had an appointment with a sleep specialist who highly suspects T1 narcolepsy. Cue the long waiting for a sleep study…

So I was originally told it would be about a 3 month wait. 3 months go by… nothing. Finally in October last year I get a date in March for my sleep study. Until halfway through January where I’m phoned to see if I can come in earlier in February. Thought that would be the end of it -Nope! 30 mins later I get a phone call to cancel the earlier appointment and move it back to March.

Since then I heard nothing only to have another phone call today to say that they have to cancel my March appointment because there’s just too many people. Now I’m not being seen until May. I’m just so fed up with being messed around with all of this. I fully get the wait but I just want a date that’ll actually stay the same!!

Whilst this has all been going on all my symptoms just keep getting worse, particularly after a pretty nasty sinus infection over Christmas that just won’t seem to shift. Been averaging a couple of hours here and there where I’m functioning and the rest of the time I’m just falling asleep anywhere and everywhere! I tried to make a cake the other week and ended up asleep on the kitchen floor instead 😑

Don’t know what I’m meant to do any more. Basically just don’t leave the house at all now for fear of falling asleep or having a cataplexy attack.

TL:DR It’s taking so long to get anywhere with my sleep study and I’m sick of this

unrelated to my last question, has anyone seen any research/ tried anything to increase orexin naturally? I read somewhere that eating fermented foods help, but I'm out on sauerkraut. I just want to know if I should really be trying to eat this many pickles, or if this is a waste.

weird question- does anyone get like a weird mouth feeling near the end of the day? And maybe throughout, but I notice most it most at the end of the day. it's not like cottonmouth, but I can't quite put a finger on it. like every night I go, am I thirsty? Am I craving sugar? it's like restless legs... but for my mouth 😂

I take 200 mg of modafinil twice a day, and conserta 36 mg in the morning. I'm wondering if it's medication related? or maybe I'm really coming unglued?

Hope springs eternal…

I know no one with Narcolepsy around me. If it wasn't for this subreddit I wouldn't have any advice, questionable knowledge, and I'd feel insanely alone. Reading comments and posts on here makes me feel so understood and that feeling is an absolute blessing when you don't get that in your day to day life. I've always been extremely shy so I never thought I'd consider an online forum a community where I belong/feel comfortable in but now I do. I can't imagine how much I would be struggling without this place and all the amazing advice I've gotten. So again thank you all.

Is there a site with accurate up to date info about symptoms? Maybe one where they have a search for trusted Narcolepsy doctors around America?

My daughter has Cystic Fibrosis and they have such a wonderful informational site. I can find doctors, look up gene mutations, read informational articles, all that stuff. So basically is there a site like that for Narcolepsy?

From my last post I'm unfortunately discovering I probably need to find a new/more knowledgeable sleep neurologist. I like mine but he just doesn't know enough about Narcolepsy. He prescribes me provigil and will go to wakix if he thinks I need it but I think he can only do so much with his knowledge. He's told me people with Narcolepsy only experience visual hallucinations and that cataplexy is only full or half body collapses. My last appointment was to ask him what's happening when I can't get out of bed in the morning because I wake up, can't move but stay aware, fall asleep and it happens all over again for over an hour. He wasn't sure so he ordered me an ambulatory EEG and possibly another stay in the EMU. He also told me that if my symptoms continue to get worse and I want sodium oxybates he would need to refer me elsewhere. He has two places in mind but if there's a site I can check as well that'd be wonderful. It takes so long to get specialist appointments. I'd really rather not have this happen again.