r/Narcolepsy

Hey guys!
Im on sunosi für about 3,5 weeks.
On low dosis i has no effect and no side effect.
With 112,5 I felt the first effect and side effect, same as with 150. I only took more when the side effects went away.
With 150 I also had decising side effects.
Now I got sick and all of it together prolly wasnt good for my tummy at all.

Question: How long did u guys had side effect? I read online it can be up to 2 weeks before it gets better.
For the people with tummy issues or IBS: were u able to take sunosi? Or did u had to stop the medication bc of it?

I have an appointment on wednesday to talk to my doctor. I really want to try everything because the positive effect for me is huge!

Recently diagnosed. Currently taking 200mg Modafinil 2x per day. I rapidly see my body adjusting to this dosage and the effectiveness of the medication dwindling very rapidly.

My caffeine consumption has risen in conjunction. I’m up to 1,000-1,500mg caffeine per day, along with the Modafinil, to function and live.

It’s far too much… but not enough for me to function.

I have a follow up with my doctor tomorrow and I need some guidance on how to proceed.

This is literally and figuratively exhausting. Any input from anyone with experience is greatly appreciated.

Thank you in advance.

I’ve been on xywav for four months now and still really struggling with morning nausea. I have lowered the dose many times to the point where its hard to sleep now (on 2.75/2.0)but the nausea persists every morning. Its helping otherwise so I don’t want to give up but I am at my wits end with it- have tried eating some crackers after my first dose/ when I wake up and all the anti nausea meds. I just have no idea what is causing it to hang around for this long and not sure I can go down any lower on dose.

It usually lasts a few hours in the morning and then goes away but it can be longer when it’s really bad. Has anyone managed to troubleshoot this?

Like I'm sure most of us experience from time to time, but I struggled to sleep last night. It was like my drugs were a fluke. For any normal person, one rough night sucks. In media, this is often portrayed as someone with 5'o'clock shadow, frazzled hair, falling asleep during a meeting or cab ride, and consuming comedically grandiose quantities of black coffee.

That may be how some feel missing one quality night of sleep. We obviously don't get that luxury because we already feel this regardless of sleep. But what normal people often don't realize is, just because we are used to poor sleep and not feeling rested, doesn't mean these aren't extremely difficult days for us as well.

So last night, after multiple hours of hoping I'll fall asleep soon, I started doing some work-work and then got distracted and watched a YouTube video about modafinil. I thought it was going to help explain the drug to me a little better (the more you know, you know). But it was actually a video about modafinil being this "smart drug" like Adderall or Ritalin and people have been using it to improve their performance at work, athletically, and just in life in general. I would need to see if I can find it again because the video seemed like it was telling people how to "safely that a prescription drug that they have no script for" which is pretty horrid.

But it got me thinking about how I'm going to pop my modafinil tomorrow, and I'm going to pop a second midmorning, and all I'm really going to experience is not being able to get a quality nap in. I won't be more effective at work today. I won't be more efficient at packing. I'm won't be hitting the treadmill or the weight room or much of anything besides the hay a few times today as I try to continue this charade of being human.

So the medicine I need just so I don't fall asleep during a meeting in not a theatrically comedic way that catches the attention of the boss who tells me to take more vacation leading to me somehow leading this year's Hallmark classic, but in the way that is just making life harder, that medicine is a pill that normal people can take to improve their cognitive function and allow them to actually create and work and focus? How is that fair?!

I finally tried Adderall about a year ago to see if it would help along with or instead of modafinil. It only made me sleepy! It just feels very frustrating that the meds that simply prevent me from crashing out for 3-6 hours in the middle of the day, not that make me feel alive and refreshed, let other people alive and refreshed!

To make matters worse and to add the final blow with my early morning rant, guess who gets to enjoy the fun task of not only existing but also packing up a 2 bed townhouse I've lived in for nearly 11 years now within 2 weeks alone? Me of course. I spent about 3 hours in one room last night, going through donations and packing up, and that's what I could tolerate. This is going to take me forever. I took off 3 days from work over next weekend to hopefully give me more time.

This is going to be one of those days. I'll have a 2 hour call this early morning for work, I'll try to sneak a nap (but I took 200mg of modafinil with my morning meds so I likely won't be able to get the quality of nap I really need), go to therapy, try to nap again, give up and pack until I'm too tired to do anything else but watch Working Moms before calling it and then charge 8 hours to the office, begrudgingly crawling back into the sheets of disappointment, and the cycle starts over again.

I have my sleep test followed immediately by a nap test in Aug. Today my dr ordered a drug test. Is this normal? I told her (and my regular dr knows) that I use marijuana for CPTSD.

I am a 16 year old type 1 Narcoleptic in high school.
Where I live, school starts at 7:15 AM, but due to timing with my parent’s jobs, I have to wake up before 6 AM to get to school on time.

I have recently learned that teenagers have proven to get tired at 11 PM consistently in research. which only gives me around 7 hours of sleep.
Not to mention the insomnia I get as a symptom of my Narcolepsy and it gets almost impossible to function at school without sleeping through MULTIPLE classes.
I see so many people around me who don’t have sleep disorders and are still too tired to function, sleep is so unbelievably important and people ignore it way too goddamn much.

If you google any symptoms, the first recommendation you see online is to get more sleep.
But I’m just stuck living through what feels like literal torture because for some reason sleep has been made out to be a sign of weakness or laziness in our culture.
I don’t know how much longer I can take it…

Thoughts??

I have diagnosed type 1 narcolepsy. By its definition it is described as a chronic neurological disorder. But would it also by classes and a disability and or category of neurodivergence? As the google definition of neurodivergence is ‘’having a brain that processes, learns, and behaves differently from what is considered typical’’. I ask this because I always experience executive dysfunction and other ADHD like symptoms.

In honor of the 250th birth of our nation here in the US I would like I have a fun little post, Things I have fallen asleep during or slept through. Please comment and let me know what you have slept through or fallen asleep during. Lets keep this cheeky ;)

I live in the Midwest and have numerous times sleep right through Tornado warnings and a couple of Tornados that have come close to my house. When I was 16? my dad came running in my room trying to wake me during one of these bad storms and when he got me awake enough to understand what he was saying, my response was to the effect of, "Cool let me know if the storm kills me" :)

I have fallen asleep during 6 firework displays one of which I was less than 100 yards away from the explosions!

I had a teacher in high school, who would walk up to kids who had fallen asleep and drop a book on a nearby desk or yell out of his spirit cone..... Well sadly one day I fell asleep in class. I guess he tried both and to no effect, I doubt this, so when I did wake up I guess he and the class decided to make it awkward and all pretend to be sleeping and snoring.

I’ve had severe fatigue for years now. For a long time, I chalked it up to uncontrolled depression, but my depression has been well controlled for about a year and the fatigue has never improved. I’m still exhausted 24/7.
I can easily sleep 10–13 hours at night, wake up, and still feel like I barely slept. On weekends or days off, I’ll often take two naps that are 2+ hours each, and I still don’t feel refreshed.

It’s gotten to the point where it’s becoming difficult to function. I don’t have the energy to do housework or much of anything outside of work. My routine is basically: wake up, go to work, struggle to make it through the day, come home, lie down, go to bed, and repeat.

My lab work has been essentially normal, and I’ve recently switched PCPs because my previous doctor seemed to attribute everything to my depression. My new PCP agrees that something else may be going on and has referred me to neurology for evaluation for possible narcolepsy.

I’ve also noticed that caffeine has absolutely no effect on me, and I was previously prescribed Adipex (phentermine) for weight loss. Even while taking that, it didn’t improve my fatigue or daytime sleepiness at all, which surprised me.

What was your experience like prior to being diagnosed with narcolepsy?

Hi all ! I (F20) recently had a PSG + MSLT a couple of days ago and felt like I got terrible sleep for the overnight test with all the MET calls and lights in the room! Also felt like I didn’t fall asleep fast enough for my naps and got sent home after my 4th nap (was meant to do 5). Now I feel like I’ve gaslighted myself into thinking there was something wrong me/my sleep.🫠

A bit of background I fall asleep almost everywhere lol, inside swimming pools, while driving, being a passenger in a car for more than 15 minutes, etc but suddenly the experience I had at my sleep study are making me question if it’s actually serious or I’m just lazy 😭😩

One of the irritating things about daily life is not being able to stay awake while reading a book, even one I find interesting.
My dr asked if I ever listened to audiobooks in the car. I started listening to them using the Libby app last fall and listened to a lot of books although some of them are terrible and I sometimes still fall asleep listening to them if I’m just on the couch at home. They do have sleep function that stops at the end of each chapter so it’s easier to pick up where I left off when I remember to use the setting.

Then please do not respond suggesting a possible diagnosis or confirmation of symptoms even if they have test results and haven’t spoken to their doctor yet. Rule 1 is in place for a reason. We are a support community, and not doctors, so should not be suggesting answers when we don't have the complete picture. Thank you

Sorry, recent diagnosis so I’m sorry if this question is regular I’m just trying to understand my experience I guess.
One of the worst parts of my day/being alive is waking up in the morning or really anytime immediately after I’ve been asleep.

I’ve coped well before being diagnosed by telling family and partners that “I’m not a morning person” and “I don’t like waking up” but sometimes it can take 30-40 minutes before I’m even able to respond to conversation or willing to let someone touch me.

Anyone relate to this? Happy or hear any other related experiences as this is all very new for me

Hi everyone. After a long time, I was diagnosed with Narcolepsy Type I last week. I am relieved that I finally have a diagnosis but overwhelmed with insurance approvals and staying on top of things. I guess I wanted to see if anyone would be willing to share advice or ideas for someone newly diagnosed.

Thanks in advance!

So I'm pretty recently diagnosed with Narcolepsy T2 yayy!! I'm on modafinil 200mg once a day now and it's been helping, I've also made different lifestyle changes to help mediate my symptoms.

I've done research before and after getting diagnosed and I've seen that diet changes can help. I know most people feel more tired after they eat carbs, so the keto diet is recommended. But for me I've noticed that I get more tired when I eat protein, specifically heavier meat protein like chicken, beef, pork etc. (Not Seafood tho?? For some reason?)

Weirdly it's mostly only meat protein that affects me, stuff like protein bars/drinks or other meals with the same amount of protein in them like eggs or cottage cheese what have you, don't affect me like that. Does anyone else have this experience?? My sister tells me it's probably because it takes more energy for your body to break it down?? I'm not entirely sure.

On the diet thing, I've thought about going vegan for a while but I can't do NO animal products (cause of other health and financial reasons) so I was thinking about pivoting my diet to a more "plant based" Pescetarian, especially cause I'm gonna be moving for college soon and I will have the ability to make that diet change.

Rambling aside, I wanted to know if anyone else with N2 or N1 has tried vegetarian/pescetarian and if it's helped at all?? What's your experience?? My ESS is so severe it causes cognitive impairment so litterally any lifestyle changes that would help with that would be so amazing.

Vyvanse use to keep me awake during day and help me sleep at night but it hasn't worked in 6months. Its the only thing that help me feel normal and hate that its gone and im back to sleeping all day or feeling exhausted. Is this normal for it to just stop working suddenly?

I’m still trying to figure out what’s happening with my symptoms and was hoping for some input.
I was out shopping on a hot day. I already felt tired before I left, but went out anyway. When I got home and started unloading the car, I suddenly had what I can only describe as a “brain shift.” It was a strange, disorienting, slightly dizzy wave that almost felt intoxicating. Are those sleep waves hitting?

After that, everything became harder. I felt slow, completely drained, and like my whole body was getting heavier. People kept asking if I was okay, and even answering them felt difficult.
I sat at the kitchen table, and someone handed me a glass of water. I remember having to really concentrate just to lift it and take a sip because my arm felt so heavy. Then, getting from the kitchen table to a lounge chair only about 8 feet away felt like an enormous task, but I managed it.
Once I closed my eyes, I had strange visual experiences that seemed to blend with the TV commercials playing in the background. I’m not sure if I actually fell asleep, but I noticed tiny muscle twitches. After whatever happened, I felt noticeably more rested. But I definitely don’t think I slept deeply.
Does this sound like a sleep attack? Partial cataplexy? Something else?
I’ve read on thermoregulation- and have been noticing some weirder things lately with the heat… (first summer with this).
I’m still trying to understand all of this, so I’d really appreciate hearing from anyone who’s experienced something similar. Thanks!