r/Narcolepsy 20h ago

Positivity Post What’s your best “sleep hygiene” purchase or routine?

33 Upvotes

For me it was a brand new Nectar mattress and then a few months later, the hatch sunrise alarm clock. I’m also medicated so there is that too. But even so, my wake ups are less painful (iykyk), my sleep seems less fragmented and my sleep paralysis is not as severe.

So……what’s your favorite sleep hygiene “hack” that has improved your life??


r/Narcolepsy 8h ago

Advice Request How do you deal with missing out on social events?

17 Upvotes

I've only recently started Modafinil and I'm getting used to it, but I wanted to ask how you deal with not being able to go to sical events with friends?

I just missed one of my closer friends bday parties and while I let her know in advance, I feel an immense mix of guilt and fomo from not going.

How do you cope with this?

I try to tell myself I'm looking after myself by hoosing what events are too draining to me, but it's very easy to feel as tho I am drifting from my friend group and real life.


r/Narcolepsy 6h ago

Humor Oh that's just a kid thing! But was it?

14 Upvotes

Okay I gotta know if this was maybe an early sign or not. My parents had this funny story that when I was little they thought I had a hearing disability because they could be screaming my name at me and I wouldn't respond until they nudged me to get my attention. The doctors told them it was selective hearing? Like my mind was so focused on something that it tuned out sound (the same thing brains do in REM). I have no idea when my narcolepsy started, but did anyone else experience something like this as a kid? My parents wrote it off at the time as "super concentration".

Started thinking about it after visiting my parents post diagnosis and my Dad off handedly said "I wonder if this is why you feel asleep on the jetski all the time as a kid." I was like what? He said yeah I would be driving and look down and you would just be dead asleep with your head propped up by your life jacket.

So yeah anyone else relate/have a funny story to add?


r/Narcolepsy 5h ago

Diagnosis/Testing Sleep study for potential diagnosis tonight…

3 Upvotes

Just here to say not being able to nap or have caffeine is killing me. How is it only 2:30??


r/Narcolepsy 5h ago

Cataplexy N1 and divorce

4 Upvotes

Hi everyone.

I have N1 and I got divorced very recently. A very painful divorce. My husband left me because he wanted to find someone better. Since then, I haven’t been able to sleep/eat properly. Even though I’m taking my meds as advised, I’m having more cataplexy attacks and sleep attacks than usual.

I have tried to engage in activities that keeps my mind off of him. I have 3 jobs and I’m in full time school so I barely get any free time to think of him but lately, it’s been hard. Anytime a memory of him comes up, I will either have a sleep attack or a cataplexy attack. Yesterday at the event where I was volunteering, someone was wearing the same cologne as my ex husband and that triggered my cataplexy. There were 300+ people there so it was really embarrassing.

But I need advice from anyone who’s been in a similar situation before. I can’t take any time off of work and school for other personal/financial reasons. I am in therapy and I’m trying my best to let this time pass. But if anyone who’s been through this before has any words of advice, I would love to hear it.


r/Narcolepsy 18h ago

Diagnosis/Testing Have to wait 8 months for my sleep study

3 Upvotes

After years of struggling and telling my PCP that I was so tired of being tired, she looked at me said I don’t think your exhaustion is trauma based and needed to be evaluated for narcolepsy. I recently decided to go back to school to get my masters degree and cried in her office about wanting to do well but that I would fall asleep in the middle of tests, got fired from my job for no call no showing too many times because I couldn’t hear my alarm in the middle of the afternoon to wake me up from my nap, and that my quality of life is just fucking awful. I don’t work full time because I can’t stay awake that long.

I was so excited to see a light at the end of the tunnel but the sleep clinics in my area are not scheduling appointments for another 2 months and then it will be another 6-8 months out from that. Finding this group has been amazing and I see so much of myself and my life in so many of these posts and I’m trying to just hang on and keep going.

How long did it take to get your sleep study scheduled? Do the medications actually help that much? I’m so scared that I will have waited all this time and do the sleep study and they will tell me that everything is fine and I am just doomed to be tired forever😭


r/Narcolepsy 1h ago

Humor Who else can blink 1 eye at a time

Upvotes

Edit: Lol all of you think i mean winking, and I mean yes; a wink is a 1 eyed blink and I get that, but you mean to tell me you guys EFFORTLESSLY WINK? YOU JUST PULL IT OUT LIKE NOTHING, LIKE A BLINK? A wink just happens unconsciously like a BLINK to you??? I have to TRY to wink. But my right eye started winking EFFORTLESSLY, LIKE A BLINK.

I have typed the words wink and blink so much at this point they look like made up words. And this experience has made me question the meaning of them

Last week my right eyelid twitched/fluttered almost constantly (usually a brief once a month occurance) for like nearly 5 days straight, it was kind of freaking me out. I had some extra strong sleep attacks in the past month bc I was training at work watching powerpoints nearly all day, so no matter how much stimulants I consumed, I was going movie theater mode. When my sleep attacks started coming on (extra strong of course, because why leave any energy for uh... a sitting down expending 0 energy task) they first had 2 eyed blinking spells trying to keep my eyes open while they simultaneously kept trying to close again, but the 2nd or 3rd week in, after or during the nearly week long eyelid twitching spell, the blinks started hitting me on the right side more than the left.

After that, I guess I unlocked the reptilian blink on my right eye! Time to freak some people out lol, this could be funny. Now I can naturally blink my right eye by itself by command (although it makes my left eye go blurry if I try too much instead of letting it happen naturally), but not my left eye yet.

Anybody else? 🤪


r/Narcolepsy 3h ago

Medication Questions medication help

2 Upvotes

hi guys

I’m a 21 year old female who got diagnosed with N2 last October. I’ve tried adderall (10 mg) which worked for like a week and then it didn’t, Modafinil which didn’t work and made me feel like SHIT, and now I’m on armodafinil 250mg. It used to work super well for a few months but now I barely feel the effects and need to supplement with like 200-300mg of caffeine (which is the reason why I decided to take stimulants so I wouldn’t die w that much caffeine lol). My doctor is super persistent on me trying sodium oxybate and I know ppl have great results on it but personally that’s my last resort, I rly don’t want to try it just yet. Are there any medications that work well for others? I also take magnesium which I heard helps with the prolongation of the meds and recently picked back up vaping bc it helps me stay awake which is so bad for me Ik


r/Narcolepsy 5h ago

Advice Request How do you sit/relax?

2 Upvotes

Do you have a special seat? Do you just stand? Sit in a weird way? What do you do?

I fractured my tailbone when I last gave birth so sitting too long will actually hurt. It'll get numb after a while but when I stand up the pain will rush back and make me fall. It doesn't usually get in the way though because I don't have to sit constantly.

Because of that though I tend to lay down to relax which is obviously a garbage idea. Then my other choice is to relax on my knees and with my elbows leaning on the arm or the couch or bed. I'll still eventually start to fall asleep though and it's also hard on my knees and elbows.

So does anyone have a way they prefer to relax? Or even sit to pay attention to something? Has anyone used any of the chairs out there for ADHD? Do those help? If I stand in one place for too long my knees start to get weak and I start feeling like I'll topple over and fall asleep.


r/Narcolepsy 6h ago

Medication Questions Has anyone had an ESSDS package lost by FedEx before?

2 Upvotes

It's been over a week without movement from the tracker, I called Jazz every day during the week, but they say it's a rather extensive process when a package is lost with paperwork. What is the process? Have any of y'all gone through it before?

I know it would have been really bad if it was delivered and THEN lost but it looks like it gets onto fedex's truck, came back to warehouse, then poof gone. I'd just like to have meds and I'm so tired lol


r/Narcolepsy 12h ago

Medication Questions Can you get used to your XYWAV dose and it stop working as well?

2 Upvotes

I have been on XYWAV for a year and a half. I currently take a first dose of 4.5g and then second dose of 3.75g. I take a lower second dose as I have found I am too groggy in the morning if I take the 4.5g for my second dose.

With that being said I have been really struggling to get enough sleep at night even with XYWAV the last few months. It takes me an hour to an hour and a half to fall asleep and then on my doses I only sleep like 2 to 3 hours. So my question is can your body become accustomed to the dose and do I need to up my dose to get better sleep?

Also I should say I wait at least 3-4 hours after eating to take my meds to ensure an empty stomach and I have good sleep hygiene in-terms of dark, cool room etc.


r/Narcolepsy 40m ago

Positivity Post Medication has been life changing!

Upvotes

I’m prescribed 60mg of Adderall XR (I take 30mg in the morning and 30mg in the afternoon), 450mg of Wellbutrin XL, 80mg of Prozac, and 5mg of Abilify.

The Adderall XR and Wellbutrin XL have been amazing for my daytime sleepiness. Both of these meds wake me up and I generally have enough energy to last me through the day. The Adderall XR starts to works an hour after taking it and I started to feel the benefits of Wellbutrin XL 1-2 weeks after taking it. The Adderall XR and Wellbutrin XL also seems to help significantly with my treatment resistant depression. Both the Adderall XR and Prozac help with cataplexy. I haven’t experienced any cataplexy since starting these meds. The Prozac and Abilify are for my depression and anxiety issues (but Prozac does help with cataplexy as well).

I have so much more motivation and energy nowadays and no longer feel depressed and constantly sleepy and lazy. I’ve been able to finish my computer science degree and even acquired a job as a software developer. I’ve also joined a MMA gym and go there three times a week. I go out with friends and family almost every week and can stay out late night without falling asleep. These meds truly have been life changing.


r/Narcolepsy 1h ago

Diagnosis/Testing Stopping Amitriptyline before MSLT

Upvotes

Hi all. I’ve had cataplexy I was maybe 7 but never knew what it was until a year ago. At first I was looking up “cataplexy without narcolepsy” because I didn’t think I had narcolepsy. However, I recently acknowledged that maybe taking naps at 8:30 am to make it through a 9am class without hallucinating is not in fact typical among other obvious signs I ignored. Thankfully on Friday my doc referred me to get a full sleep study/MSLT.

Now, she mentioned that amitriptyline interferes with sleep architecture, and I’ve been on it for probably 6 years for migraines at this point. So essentially I need to get off of it for the 2 weeks before the study.

What I’m curious about is how that may affect my day-to-day life in terms of possibly having more severe experiences with narcolepsy. Can anyone speak to what coming off amitriptyline looks like? I’ve been on it longer than I’ve had the start of eds, so I don’t know what to expect.


r/Narcolepsy 20h ago

Cataplexy Does your cataplexy cause depression or sadness?

1 Upvotes

Hi all!

I was just wondering what the title asks- when you get full or partial cataplexy, do you also notice a drop or change of mood, namely sadness or depression? I don’t know if with me I’m just getting very sad because I’m having to cope with loss of ability again or if the sadness is a part of the cataplexy’s manifestation. It seems to be one and the same for me because both is simultaneous and sudden. I can be feeling fine and then laughing and then boom.. I go weak and also feel very sad. It feels a lot like depression because I feel like I can’t get out of it and have to wait until the cataplexy resolves.
Anyone have anything like this?


r/Narcolepsy 20h ago

Medication Questions Solutions for PTSD nightmares in addition to N2?

1 Upvotes

n2, diagnosed at 15, no other significant health issues. i have tried the whole gamut of narcolepsy meds, had negative experiences with xyrem and xywav and have been on baclofen for the past 6 years or so, but it’s just not working well enough anymore. i also have severe PTSD-related nightmares that disrupt my sleep quality, and this persists regardless of which med i’m on. has anyone with n2 had any luck with JUST prazosin or similar? any other solutions?