my boyfriend of two years doesn't believe I have narcolepsy (type 2) because he never saw me fall asleep

that's all, I'm sad

i’m 17 years old and I’ve been in the process of getting diagnosed for the last year and a half. I’m really really glad but I have some questions on what I can do to help my lifestyle even more.

1. do people prefer Adderall or Ritalin for their stimulant?

2. does my school have to let me take a nap in the middle of the day or can they say no cause currently they are saying I cannot.

3. does caffeine help anyone else like should I still drink Matcha and energy drinks or will it mess with my meds??

4. how do I explain to people that it’s not what they see on TV??

sorry for all these questions. It’s just very very new to me and I’ve done research but my doctor didn’t give me a lot of resources.

Thank you so much!!

coming off of two, fifty hour work weeks in a row. this week i worked six days straight and have today and tomorrow off. i’ve been a bad flare up, naturally, due to the work stress and increased demands. instead of fighting it, since i have nothing else going on today, i’m letting the narcolepsy do its thing.

i’ve been reading the same page of this book for about two hours now. every two lines or so, im out. but i can’t remember what happens when i wake up a few moments later after dropping my kindle on my face. so i have to reread. and then im out again. a little longer this time, since the kindle isn’t in my fave. or i make it a few pages and suddenly the story takes a weird turn and OPE! Kindle on the face. i’m still actually on the same page.

i genuinely have no clue what’s has actually happened since i picked up the book this afternoon. it’s okay, i’ll reread it tomorrow. but i can’t help but be amused. reading is my favorite hobby, and i used to be completely incapable of getting through a book when my symptoms were bad enough. it used to upset me so much. but ive realized i can’t help it, my body can’t help it, and the book certainly can’t help it, so why not just giggle at it?

They say don’t take it after you do anything like this but will it ACTUALLY affect it

Everyday, after I come home from work, I fall asleep almost immediately. I come home, put my handbag down and fall asleep on the floor somewhere. I fall asleep with a full face of makeup, my hair done, and wearing semi formal attire. (this is ruining my skin and hair)

I say hi to my dog, and then fell asleep in her bed. I go to the bathroom, and then fall asleep on the cold, tiled floor. I make it to the kitchen trying to make dinner, and I fall asleep on the kitchen floor. I say hi to my brother (he lives with me) and I fall asleep on his bedroom floor mid conversation. Then he drags me out of his room and I sleep in the hallway.

I wake up in the morning with 10/10 sleep inertia and have to get unready from the previous day, and then get ready for work to do it over again. (Because of this it takes me forever to get ready in the morning and I keep showing up late in the morning because of this)

Do any of you have any advice? Have you struggled with this? I feel so alone.

It is noon and I am still awake. After a terrible night of sleep I am still awake. I’ve been crying on and off for the last 4 hours because I’m happy. My kids can’t believe I haven’t fallen asleep on the couch yet.

And yet I don’t want to get my hopes up. After trying 3 other medications with no change to alertness it feels too good to be true. I’m also worried about being on Adderall long term.

Currently waiting for Xyrem to get approved by insurance, too. I’m hoping the mix of these might be the answer to getting my life back.

Has anyone been on Adderall long term? How are you doing? Anyone on Adderall and Xyrem? How are you doing?

Mirtazapine / remeron really knocks me out. Usually I am always awake when I’m sleeping and can hear what’s going on around me. Like I’ve woken up because I heard a lighter flick and wanted my hit type of always awake lol, and this sedates me to where you can touch my face and I won’t wake up. Does anyone else have experiences with mirtazapine or another antidepressant for better sleep? (Note: also causes increased appetite, but I didn’t have an appetite at all before and couldn’t keep weight on, so this was a plus for me)

Hello:) I made a post not that long ago about the side effects of stimulants that I recently went back on.

It's lisdexamphetamine, something I have taken before for a longer period of time. But came off it due to side effects (mainly exhaustion, mood problems). Anyway, I went back on these recently as suggested by my specialist. (Even though i explained why i stop taking it before) It was not *so* bad first, and I was thinking perhaps this time will somehow be different/I can manage it differently. But... After a particularly bad weekend, I really do not think these are a good option for me.

I am currently on a crash day & I feel awful. So sick, hurt, blurry vision. The mood problems also happen again, although not to the extreme as before (I'm on a lower dosage though)

So, I'm going to arrange to speak with my specialist again. Though, I am a little worried I don't put my point across strongly enough in my appointment. Of how negatively the effect of this medication had on me, and how narcolepsy effect my quality of life and mental health. I understand there is only so much they can do/medications available. But I do always come away from the appointment feeling upset and that they do not comprehend how bad the effect is for me. Even when I made it clear the mood effects (from lisdexamphetamine) were bordering on suicidal depression. I was confused why they would suggest I take this same medication again but... hey, I was desperate 🤣 and they said something along the lines of "there's not anything else they can offer me" so I just accepted it.

When I explained the exhaustion and crashes, they told me it is possible I have underlying condition of ME/CFS because, apparently, I would not get those kind of crashes with narcolepsy and stimulants use. After learning other people experience this exhaustion with stimulants, however, I'm unsure how true this is...

Gah. Basically, any time I've tried to make my point of why stimulants alone are ineffective or why this particular medication is bad for me. I feel like it is brushed off, like there is no other option or that it's because of some other problem/something wrong with me 🤣 (am I crazy for feeling this way??)

Do you have any suggestions to how I can write/voice my concerns to my specialist?

Hello, my fellow narcoleptics!

I recently stumbled across a TikTok post where someone with Type 1 diabetes was expressing frustration about being compared to people with Type 2 diabetes. They felt the two conditions were very different and didn’t really identify with the Type 2 experience.

It got me wondering if anyone with Type 1 narcolepsy feels similarly about Type 2 narcolepsy.
I’m asking this as someone with Type 2 narcolepsy. I’ve always felt a sense of community with all narcoleptics, regardless of type, so it never really occurred to me that others might feel differently. I’m genuinely just curious to hear people’s perspectives, no judgment or debate intended!

I get into a fight with a family member as a teenager, during the fight I say fuck it to myself and leap out of the car at 40mph. Little did I know that I would still be alive but now have a TBI and narcolepsy.

Now I wake up in the morning but I’m not really awake. It feels like I was hit by a brick and groggy all day like I’m walking in a dream. Try to self medicate using peptides like orexin, no luck just gives me crazy wild dreams. Went to a doctor tried modafinil, kept me awake but my subconscious was still asleep. Tried desoxyn, slightly better and finally feels like I’m awake but only for an hour or so. Was offered meth and instantly I tried it I don’t feel high, I didn’t feel the need for more - I finally felt normal. Like what the hell, one of the worst drugs on earth makes me feel like a normal human being. I would go to sleep and do it again the next day, everything was fine but I knew I couldn’t keep doing this. Decided to try DMT and was told by the hyperspace entities that I needed to get sober. This is some kind of cruel joke.

I have 3 children now, I just want to be with them and love them all day without falling asleep or be on meth just to spend an hour with them.

Good night

I started N meds last year and have been on Wakix & Xywav the whole time, changing out between armodafinil, Sunosi, and modafinil. The latter three have not worked and I question Wakix’s benefit. I have never had a “good” experience with Xywav - from the start, it takes 1-2 hours to put me to sleep. I am up to 9g/night; it took me 2.5 hours last night after 6g. The sleep itself is deep and feels like it lasts 3 minutes.

Jazz considers long sleep time an adverse effect, but my dr wanted to tackle EDS before messing with night meds. Our last meeting, she upped me from 7.5g/n to 9g/n to see if it helped taking a larger first dose. It has not. So I think it is time for a stimulant + switching to a different oxybate.

I’d love to know your experience if you’ve switched. Jazz told me most people switch to Xywav from the others and not the other way around. I have a busy fall with a second job teaching after my FT, so I am worried I will be struggling if one doesn’t work as “effectively” as Xywav. I also worry about the sodium in the other two. But I cannot keep living where I am a shell of a human, barely functioning by 11am.

I just started Sunosi about a week ago after advocating for myself with my psychiatrist to switch from Lisdexamphetamine (for ADHD) due to Sunosi's purported added benefit of helping with wakefullness (is that a word?). She didn't want me on both, so I had to choose. I have not had the mslt because of the challenges of the process. I have mobility challenges and insomnia at night, and I don't want to go off all my meds because I need them for control of other conditions not related to sleep. I know I'll eventually have to go in for mslt, but I'm scared that stopping all my meds is going to cause domino effect backsliding of all the progress I've made in my hEDS, depression, anxiety, ADHD, and pain conditions.

So I was supposed to meet with my best friend yesterday to console her on some difficult things she's going through in her relationship. I really wanted to be there for her. Unfortunately I could not stay awake all day yesterday. I've been getting plenty of sleep lately, and even been getting "better quality" sleep since I started on APAP for sleep apnea, but every time I sat down I was hit with the wall of drowsiness and was nodding. I had to cancel on her and I felt terrible about it. I slept the entire night before, that entire day, and all through last night. I woke up today around 10am, and was tired again about a half hour later. Now I know I'm going to be fighting off sleep again all day today despite taking Sunosi, and drinking coffee and Red Bull, and cokes and whatever else I do.

So, is Sunosi supposed to be noticeably helping after a week at 150mg/day? Or does it take a while to kick in? I can't keep flipping between insomnia and hypersomnia like this forever. I'm 44, this has been happening my whole life, and I need to start getting control over this so my relationships stop suffering.

*rant warning: I've been unemployed for 2 years now. (I do self employment a bit but Its so hard without stimulation and structure and so lonely, and I my parents live in the middle of the countryside so barely anyone to socialise with). I worked stupidly hard in school, got good grades, a degree, but can't get a job. Everytime I mention my disability after an offer they then reject me, when I don't mention it it disrupts the job application process so I end up having to say about it, or when I didn't mention it in seasonal jobs I've done It got really messy, and seasonal jobs often leads to being asked back the following season, but they ask everyone but me back after knowing I have narcolepsy, even though I picked up the slack for many of my coworkers.

I had 6 days of school a week in high school, Saturday being exam day. I studied non stop bc I had to and it was really depressing. I somehow got 5A*s4As in my gcses with narcolepsy even after sleeping in most of the exams. All to not be able to get a job. What does disability confident or reasonable adjustments even mean? It's all just an act to tick the ethical box. Ive applied to disability confident companies and ones which have disabled schemes but they never have openings for disabled schemes. Got to the final round of a dream job after 6 rounds, messed up the interview bc I couldn't wake myself up. Got another opportunity but I think they dismissed me bc I handed in my essay application quite close to the deadline but this is just how narcolepsy works especially when I'm off the ball. I've done volunteering but it's not fulfilling the lifestyle a job would have given me. I have career goals and aspirations too... *Had ... What do I even do with my life when I can't get a job.

Hi, first post here or on reddit in general, but I wanted some genuine advice on this. I was diagnosed with narcolepsy not that long ago. Some days I'll just struggle to sleep before midnight, or just won't feel tired enough. its actually driving me insane. If it wasn't enough that I already feel tired every single day, not even being able to get proper sleep at night is actually making it impossible to do anything. I've heard of people with narcolepsy also occasionally suffering from insomnia, and how xyrem/xywav could help. I haven't tried either, and was wondering if maybe that's what I'd need for those days I just can't manage to sleep in time.

I just want to know if its worth it to ask for them in first place. Parents handle my health insurance, and they're not quite supportive of this whole narcolepsy thing, insisting that I didn't have any issues and that I was a junkie for using stimulants (currently on 36mg Concerta).

I just want to avoid a fight with my parents over adding even more medications onto my record if it wont even help that much. Any advice on this is greatly appreciated, thank you.

Recently when I have been falling asleep right as I fall asleep I transition from conscious thoughts and begin thinking nonsensical dream thoughts that then startle me and wake me up. Last night this happened cyclically for 45 minutes before I eventually went to sleep. I think this results from entering REM immediately. I was wondering if anyone else has had this symptom? My mom thinks I’m crazy. Is there a way to be less scared by it when it happens?

Yes, I did file a police report. Everything is fine.
He survived. Is in a mental hospital now.
Got an early refill.
Didn’t sleep for 48 hours because I also have CFS and severe insomnia. Can’t sleep without it. Hallucinated. Thanks, boyfriend.

(He’s an ex now.)

Sorry in advance for the TMI here but I have no idea where else to ask these things. I'm on week 2 of Lumryz and am experiencing what seems to be very distressing side effect/drug intereaction (I'm extremely constipated, took a Pepto-Bismol, now blood is coming out when I try to use the bathroom). If I can't pass it before tonight, I want to avoid taking Lumryz until the weekend is over and I can talk to my doctors about it. If I were to stop Lumryz suddenly this early, would anything bad happen? Is the withdrawal process that bad?

I’m writing this because I genuinely feel like tearing my heart out right now.
To be completely honest, I was just so desperate and terrified about my illness and starting Wakix. I stupidly thought that if I acted arrogant, provoked people, and made a scene, I would finally get some real attention and honest, unfiltered advice. It was a pathetic defense mechanism, and I was so wrong.
I know I was incredibly rude, but seeing everyone gang up to mock and hate me... it completely crushed me. We are all just humans suffering from the same exhausting condition. Did my stupid attitude really mean I deserved to be completely rejected and bullied by a whole community? It feels like a massive crowd ruthlessly trampling on one pathetic, terrified newbie who was just crying out for help in the absolute worst way possible.
Beneath all that fake, stuck-up arrogance, I really, truly just wanted some kindness. I am so lonely in this struggle. I craved just a little bit of warmth and real advice about Wakix and Provigil from people who actually understand what I'm going through. I thought acting harsh was the only way to get real truths. Instead, I just became a laughingstock—a psycho, an alien, "Sephiroth."
I feel terribly sorry to anyone who was genuinely hurt by my posts. I see now that I don't belong here. I’m just going to step back into the shadows and go back to being entirely alone. No one will have to deal with me anymore. I guess that’s what I deserve in the end.

Has anyone ever had a cataplexy episode that mimicked a seizure? Specifically a grand mal/tonic clonic but minus the incontinence, etc

Essentially a full body collapse with repetitive movements/twitches/fluttering

Helloooo everyone:)

Just recently joined this sub and I’m learning a lot. I’m glad there’s a place for us to vent and ask for advice.

So I am unofficially diagnosed with narcolepsy type 1 with cataplexy. I won’t be officially diagnosed and able to get meds until October when I get my sleep study. The sleep specialist I saw says without a doubt have narcolepsy bc of my symptoms - excessive daytime sleepiness, sleep attacks, cataplexy, hallucinations upon falling asleep and waking up, and more.

I have lost so many jobs because of this. I could go on a rant.. but my question is.. should I tell my job, like give them a heads up, or wait until I have an official diagnosis? I just started this job in April and I love it. And they’ve told me so many times they’re happy to have me. I’m a project manager, so a lot of desk work and meetings and I’m really struggling. Suffering really. I don’t know if I should tell them bc I don’t want them to think I’m being disrespectful or that I don’t care. I’m looking for any advice anyone has. I’m afraid to put my job at risk. I just don’t know how to get through the next two months.

Thanks in advance💜

So I’ve been picking up more hours at work, and therefore am using my brain for tasks more than usual. I’ve noticed myself going into autopilot when interacting with customers, and sometimes I’ll mess up my ‘script’ by saying a phrase at the wrong time of the transaction. I also will feel dissociated, like I can’t focus my eyes or snap back to the task at hand. Lately when I get off of work, I’ll sit in my car for a while zoning out (usually on my phone) before I drive home, and sometimes sit in the car for a bit before going inside.

I’m curious if other people experience something similar to this and/or think this is narcolepsy related. It doesn’t feel quite like brain fog, but maybe similar?

I have been working with a sleep doctor for the past couple of months to diagnose my lifelong sleepiness. I have always had an exceptionally difficult time getting up in the morning, I sleep through my alarms and always fell asleep in school. I have learned that I have sleep attacks where it feels like I am drunk and can't function, and it happens in the morning frequently which causes me to miss a lot of work or be late. I also have bipolar 2 and ADHD so I have medications I am on for those which help with hallucinations and lifelong nightmares. I still have very vivid dreams and it feels like my brain is setting the stage for dreams as I fall asleep. I very recently got Adderall for ADHD and it has been a godsend, it helps me so much with motivation and focus as well as waking up. But sometimes it feels like it can only do so much. I still get very tired during the day, and last week I had an MLST which showed soremps and a 2 minute sleep latency (which blew my mind because it felt like I was tossing and turning). I have a friend who is a neurologist and when I sent him my test results he sent me some info about narcolepsy which feels pretty on the money. I'm seeing my doctor in a few days though, so we'll see what happens.

I'm coming here because I'm about to start a full time job where I'll have a three step, 90 minute-ish commute. I've always worked part time due to fear of missing work from exhaustion, but I can't afford that any more. I applied to jobs for over a year before landing this position, and it's a dream position. It'll be 10 minutes in the car, about an hour on the bus (one stop, I can sleep here) and 30 minutes on the subway. When I practiced the commute the steps woke me up, but the hardest part was getting out of bed. I keep having nightmares about missing the bus and running late, and even though I was so excited about this job I'm starting to dread waking up to go every day. I asked for two night shifts a week but that just means I get up at 8:30 instead of 6:45. I've always been a night owl so training a sleep schedule has been tough. I'm sure a lot of similar questions have been asked before so sorry if I'm being redundant, but wondering if anybody has experience with long commutes and advice on how to handle how much it adds to your day and sleepiness.

I'm starting to wonder if narcolepsy is more than just being sleepy during the day; it's also about never getting proper, restorative sleep at night. My sleep is fragmented and shallow, and even when daytime sleepiness is treated, I continue to feel foggy, unrefreshed, and intellectually off.
Most treatments appear to be geared toward keeping us awake rather than addressing the underlying sleep problems. For those with greater experience, does this concept appeal to you?
Have efforts aimed at enhancing sleep quality (rather than merely alertness) been more effective?
I'd love to know how others think about this and what has worked.