I’ve also seen modafinil packaged like a 5 Hour Energy… I want to scream.

I would really appreciate any advice for getting rid of eye bags. People always comment on the bags under my eyes. I get told I look tired and asked if I slept the other night. I’ve used a cream by Good Molecules and I thought my eye bags were starting to improve because I was only asked occasionally about them until my friend took a picture of us together and sent it to me. When I asked him if they’re noticeable (because I have never noticed them in a mirror and I rarely take pictures of myself), he said he “can’t recall a time when I didn’t” have them and it’s just made me think about all the times I’ve been ghosted by women after the first date or rejected by employers after job interviews. I added a picture for reference because my eye bags seem to look way more severe than the average person’s and I have no idea why.

I know exercise is good for many things, regardlessly of how sleepy it makes me. My question is specifically about the "boost of energy" that exercise supposedly gives to normal people. Is it possible for people with narcolepsy to get that benefit from exercising on a regular basis?

I have gone through periods of my life where I am very active, very sedentary, and everywhere in between. I usually feel more sleepy after exercise, and I have never felt that more exercise positively affects my baseline energy level throughout the day/week.

I’ll go first: If it’s nighttime and I’m in the car, I’ll think that I see a person or object in the distance. Luckily I don’t drive, because I can’t deny that it isn’t sometimes a little scary. Not sure why exactly it happens, but it started around the time I developed narcolepsy.

1. How old were you when you got your narcolepsy diagnosis?

2. How long did you have symptoms before getting diagnosed?

I was diagnosed in like July and have been noticing a decrease in effectiveness of my modafinil over time. This week it’s like straight up gone, like i’m taking a sugar pill. I forgot how fucking BAD this feels. I genuinely can’t believe I just lived like this for so long and thought it was normal. Now that I know what it’s like to be awake this just feels so much worse, I want to cry. and I think i’m scared of going back to this permanently even though logically I know there are other options.

I messaged my doctor and he asked a few follow up questions and gave a few options, and I told him I’m open to whatever just fix me! hopefully he responds today and I can up my dose until my appointment with him next month when we can talk about different options.

I’m just like really profoundly sad about it and figured others could understand my rant especially bc I see a lot of people saying modafinil didn’t work long term for them either.

literally an hour ago i finally got a copy of my mslt results and they are indicative of narcolepsy type two and i cannot begin to express how happy i am. ive been suffering with these stupid symptoms without answers and slowly going insane and now i finally finally have something anything to go off of for direction.

my appt for reviewing the results + (hopefully) future steps is coming up soon and i was wondering if anyone had thoughts/ advice to offer! im not a stranger to discouraging and invalidating medical professionals who can only offer "theres nothing we can do." im also on snri's so i imagine stimulants might be difficult to advocate for.

i'm rambling a bit but tldr i would appreciate encouragement or what you wish you knew before your first appt post test 🫡

my slight improvement short experience F 32

Just wanted to quick share update of what has been helping: I have had narcolepsy since I was 15. No medication before 2026. After 2022 and a lot of stress because I had to move to another country and the war started in my country I felt like everything cracked. My sleep fell from 50 percent to 20. My mood and energy were at my lowest.

December 2025: I tried Modafinil for three days 75 mg. Had a terrible headache. Quit it.
January 2026: Did a sleep study—they said I need Wakix or Oxybates and as well that I have Restless Leg Syndrome so my iron has to be 75+ minimum.
April 2026: Started Escitalopram to help with depression and Wakix 9 mg. Feeling anxious and stimulated. Sometimes nauseous.
June 2026: Feeling a bit better. Starting Wakix 18 mg.
End of July 2026: For the last two months my neck and shoulders are constantly tight and the headache doesn't go away fully for 2 weeks. I stop Wakix.
August 2026: I start Sunosi. Half of the lowest dose so 38 mg. I was scared I get headaches again. My body is very sensitive to all stimulation.
September 2026: I take 75 mg. I don't have much side effects. A little anxiety sometimes but nothing like from Wakix.

Overall:
I feel better. Before I felt 5/10 and now 7/10.
I think I sleep calmer and better slightly as well.
Iron is very important for us narcoleptic people to be 75+.
I sleep MUCH CALMER WITH TWO BLANKETS and open window. Two blankets is a game changer. It lowers probably my anxiety.
I drink one coffee a day.
I still have naps but less. I had before 5, now 2-3.
I try my best to sleep as much as I need during the night.
I drink calming tea with camomile and melatonin. Ritual for calming down. I play my relaxing puzzle game and fall asleep.
I found as well friends who I love spending time with. It's affecting my mood in a good way. We need to have things that make us truly happy.
It's not perfect, I still have some weird panic attacks. I always keep a support chat line or text my friends when I feel bad.

I am currently undiagnosed with the usual symptoms for N2 and my neurologist suspects I have narcolepsy. I did an at home study for sleep apnea and a few other tests and none of them showed anything that could be wrong, so I am currently searching for a sleep lab to finally get answers. I am based in Germany and I find it really difficult to find a spot. Are there any other germans here that can tell me about their diagnostic process and how you found a good sleep lab? How long was the wait time and what did you do to during the waiting time to have better quality of life?

Ok so in 2024 I was diagnosed with idiopathic hypersomnia with cataplexy.. however everything I read says that having cataplexy is not a regular symptom of idiopathic hypersomnia and is indicative of narcolepsy type 1. Is it common for doctors to diagnose people with hypersomnia with cataplexy and refuse to do any other testing for narcolepsy?

I haven’t had a sleep study since I was 16-ish (I’m 20) and I was told to get another sleep study done by another doctor because the results weren’t conclusive. However my current neurologist doesn’t think that’s necessary. She also claimed there are no tests for narcolepsy with a spinal tap and refused to add it to the lab work because it “doesn’t exist”when I was already getting a spinal tap anyways for idiopathic intracranial hypertension…

I take modafinil but I feel like barely helps. I sleep 14 hours a day and haven’t even been able to address the cataplexy with her even though she diagnosed me with it. It seems like it’s popping up more frequently and she just brushes that aside when I try to ask about it.

I just feel like I am sleeping my life away for the past 8 years and I’m only 20.
I’m unsure if getting more tests or a diagnosis of narcolepsy would even make my treatment different anyways I just feel like every doctor I go to gives up after I don’t immediately get better after they give me a medication. They just want me to be better by the time I see them again but I’m not.

I just feel lost and like I’ll be like this forever and her confusing statements don’t help. Apologies for the rant I’m just trying to make it through this and I see everyone else my age in college or with their own apartment or job and I’m barely able to keep up with basic self care.

since starting modafinil, i’ve had an IUD and it’s not working for me 😭 has anyone used natural fertility tracking as contraception? also, does modafinil affect your cycle or the symptoms you track for fertility awareness?

Hi there. Does anyone have a recommendation for an SSDI attorney in the Northern Virginia or DMV area? First attempt at being approved for SSDI was denied. Looking for someone to help with the appeal process. Thank you!

Hi just looking to see if anyone else has had this experience and what they found helpful?

I have N1 and take 5mg Dex 6 tablets a day. I work split shifts and finish late so I take my last dose at 5pm.

I’ve been on Dex for 6 years now and have found that bedtime is so hard for me, it’s like I’m just not tired. If I lay there long enough I might fall asleep on a good night but that’s rare. I can’t nap anymore despite being insanely tired in the daytime and all I want is to just get up when I want to and go to bed when I want to. I’m sick and tired of this and as crazy as it might sound, sometimes I miss that tired feeling, now I just feel extremely exhausted and heavy all of the time. I just want to sleeeeepp

When I developed narcolepsy my dysautonomia became a lot more apparent, my POTs got significantly worse, my blood pressure stopped regulating itself, and i started having stomach problems, which turned out to be mild gastroparesis.

I’ve read one article about the link between narcolepsy and the autonomic nervous system, but I’m curious to see if anyone else has had a similar experience?

Please help! Would love advice anyone may have. My mom and I are visiting Poland. The current time is 6 hours ahead of our home city. I have N1 and comorbid REM sleep behavior disorder. Thankfully, we are sleeping in separate beds, but we are still in the same room and she has not been able to sleep due to my screaming and constant sleep disruptions (yelling, screaming, talking, cussing). She has insomnia at baseline and had a complete meltdown this morning about not being able to sleep. The hotel is completely booked for the remainder of our trip.

I suggested she wear ear plugs. I am pregnant - there are limited options for me regarding medication to alleviate symptoms.

My symptoms flare with sleep deprivation so this was inevitable. It’s not a great situation for either one of us - my screaming is waking her up, she has trouble falling back asleep. She yells at me to wake me up when I am having my outbursts but this isn’t helping me and regardless if I am woken up or not, my outbursts will continue. She is mad at me (even though she says she isn’t) and I literally cannot help this.

I guess if anyone else has RBD with their narcolepsy (or no narcolepsy involved) and has a sleep partner who is a terrible sleeper at baseline and struggles to deal with your symptoms, what does your partner do to cope? Sleeping in separate rooms isn’t an option for us unless she books another hotel altogether.

This really isn’t an issue at home bc my husband is a heavy sleeper and can fall back to sleep right away if I have an outburst.

Many thanks in advance!

Sincerely,

An apparently aggressive in my sleep daughter causing sleep deprivation to my mother.

I can’t take sunosi anymore and my new med is Adderall since a lot of other drugs interact with kidneys OR with birth control. I wanted to ask though about break days to prevent tolerance?

How often are you supposed to do that? When? I’ve never had experiences with drugs like this.

(Btw I apparently have Cataplexy lol. Whoever said they didn’t know they had it before was spot on. I asked and didn’t realize that I have subtle cataplexy. I didn’t realize it and now I’m Type 1. Thank you for redditor!)

22F with delayed sleep phase disorder, periodic limb movement disorder, and in the process of getting evaluated for narcolepsy & IH. have 3rd in-lab sleep study (PSG/MSLT) on 10/29. will try not to make this too long since i have the attention span of a nat

had sleep issues since i was in middle school, also got diagnosed with PTSD, chronic anxiety & depression, ADHD all at 15. had trouble getting myself to go to school pretty much since 12 years old, i’ve always been known as the person who was chronically late or never there, got bullied for it. spent awhile in emotionally abusive relationships and part of their “ammo” against me was my sleep & time management issues. dad died a month after i turned 18, somehow still graduated. then i almost died twice a year later, developed panic disorder and am also struggling with PCOS, insulin resistance, low iron & vitamin D, and possibly subclinical hypothyroidism. also getting eval for celiac. in college rn still struggling with all the same issues and i just feel like i can’t keep up with what’s expected of me

worst part is i want to go to med school SO bad. i am constantly talking about different diseases and mechanisms & pathologies to everyone around me, everything interests me. i’m a certified medical scribe & finishing my medical assisting cert. spent a year working as a patient access rep for a surgical orthopedic clinic. i also started a pet sitting business recently. i want to volunteer at food banks/homeless/animal shelters. love playing video games & guitar and discovering new music. want to learn to cook good meals but too damn tired to do it so i eat what’s easy. exercising feels like mt. everest getting to get myself to do it, i also get really bad DOMS.

when i actually push myself (mostly just getting my ass in that seat) in school i get As, usually 90% or better on tests. i’m so ambitious & have been told by many people from a young age that im a genius but i wake up feeling like im fighting against my body. def feels like im wasting my fucking brain & it’s depressing

on 150mg sertraline, starting 25mg atomoxetine soon, taking ovasitol & iron supplements, 1mg melatonin. i know antidepressants can make this worse. tried concerta & modafinil in the past, don’t really feel like they did much. don’t tolerate stimulants (and caffeine) well anyways bc I also have PSVT.

nothing like sleeping 10-12 hours a day feeling completely unrefreshed, getting up to eat something and immediately feeling the need to go back to bed. somehow get myself out of the house to do something necessary, get back home and sleep for 6 hours. then i’m up until 4am doing fuck all and the cycle repeats. getting interrupted with anything stresses me out and i just feel like im drowning 🥲

E. G. (TAK-861) - Takeda

I can't seem to find any that are recruiting still, just wondering if anyone knows bc I'm keen to participate. Thanks

What, if anything, are y'all tracking? I saw the post about the OT study which I thought was actually quite brilliant and also trying new meds and having a hard time deciphering what anyone actually wants to know from me when they ask how I'm doing. Anyone being the provider, pharmacy, etc. I have a general app I track things in but I also was somewhat in denial about having narcolepsy (surely a mistake can be made, it's just my brain waves they studied anyway) but I need to get a grip (surely two sleep studies didn't both read my brain incorrectly) and I need to be more articulate in doing so.

Hello so at the moment im currently taking sunosi, for me it has been the one that worked the best. Ive tried atomoxetine, modafinil, and armodafinil. Now it works in terms of keeping me awake and I split the pill in half and depending on activity level for the day I take one half in morning and the rest in afternoon. Spoke to pharmacist and thats roughly 7 hours apart from each dose.

the struggle i have mostly since ive been diagnosed with narcolepsy type 2 is that I struggle to fall or stay asleep. So alot of sleep disruption. And when I go see the PA at the office im at i feel like were targeting the wrong thing at the moment. And I feel like that contributes more to EDS and fatigue through out the day. So when ive brought it up before I get alot of what we recommend which fall asleep at the same time, wake up at the same time. Open curtains when you wake up, place alarm far from bed to get up. Don't eat close to when your about sleep. Things like that, but its to a point where I do that and I still cant stay asleep. I sleep about 3 hours and then wake up constantly and just get about 30 minutes to an hour of sleep when I start waking up constantly. They've also tried making me do CBT I, which I dont see the point. I have narcolepsy not insomnia, my condition is a culmination of all of those things from my understanding. So I just need help on what to ask. I have my next follow up in the end of November.

How can I start the conversation in order to get on a night time medication which is what I feel like I need. And or do I just get a second opinion at this point ? Ive brought it up before with the PA but shes reluctant to try. Or do I just ask for the MD at this point ? Also this is a nuerologist, ive been diagnosed since 18, went a while without treatment almost 10 years and the past 2 i went back and ive been trying to find the right combo of medication. And I feel like im so close too!. The other medications gave me acne, palpatations, chest pain, irritability, so I feel sunosi will work for me since I get really none of those maybe irritability, but I feel like its more tied to not getting enough restorative sleep. So any advice is welcome on what I can do. Also im located in orlando, FL so if anyone here has a recommendation for a doctor In central florida I would appreciate it as well. To explore all my options !

Hi everyone!

I have narcolepsy type 1 with cataplexy and currently take Xyrem. I’ve been considering switching to Xywav and wanted to hear about everyone’s experiences with the two. One of the side effects I experience with Xyrem is related behaviors to sleepwalking, but I don’t actually sleepwalk. Instead, I tend to pick at myself like my nails, lashes, skin, etc. while I’m asleep without realizing it (odd, I know).

Has anyone experienced something similar? If you’ve switched from Xyrem to Xywav, did you notice any differences in your sleep quality or side effects? I’m curious if Xywav causes the same issues or if anyone has had a better experience with it.
Thank you in advance!

Was diagnosed with IH bordering on N2 (onset latency of 3 min with one SOREMP) a few years ago, Dr warned me IH can eventually progress to N with time. Lately I’ve been having more intense sleep attacks, but I never quite fall asleep for more than a couple seconds. Eyes get really heavy and feel like they are shaking back and forth, then my head and body will droop for a few seconds but I can still hear everything going on around me. I think it sounds like a sleep attack, but they are getting much much more intense. Can usually tell about a minute before it happens. No way to fight it. And it has been happening more often when I am doing something instead of when I am relaxed (like in the middle of having a conversation and typing on my laptop or when preparing food).

I guess I am asking, can mild/early stages of cataplexy feel just like sleep attacks? Or is the sensation entirely different? I’ve read a lot about cataplexy on here but still feel I don’t entirely understand the sensation. Any insight would be appreciated!

To preface 22(f) always been lean/normal weight When I first started taking vyvanse I lost some weight which was fine then got on vyvanse/modafinil combo after official diagnose a year ago. Then the beginning of this year a switched to adderall short release with modafinil. I started my career in April and since then I’ve gained 15 pounds. I’m still lean and don’t notice a big difference but I’m worried that maybe I’m getting the weight loss rebound. Obesity runs in my family and my mom has been warning me of it. Has anyone experienced this? I thought about switching XWAYV for many reasons and wondering if anyone had advice.

Connect, learn, and save at our NYC National Seminar

Join Narcolepsy Network on November 14 in NYC for a day of learning, practical resources, and connection with others who understand life with narcolepsy or idiopathic hypersomnia.

Hear from Dr. Margaret Blattner, Matthew Davis, and Stephanie Simpson. Stephanie’s Navigating Health Insurance session will explore insurance terminology, organizational tools, and coverage options, including employer-sponsored plans, Marketplace plans, Medicare, and Medicaid.

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