Hi I'm looking for some advice on mornings. I'm 24F and I have narcolepsy type 2 and just can't seem to wake up or get up. This has been an issue my entire life like since childhood but I feel like it's getting worse. I'm a pretty happy person but when I wake up I have the apathy of a severely depressed person. Like I wake up and all I want to do is go back to sleep. I know this is normal but I've started to miss work as well as a huge presentation, hangouts, and other things that are so important to me/I would be so excited about any other time of day. Half the time getting up isn't even an issue I just don't even wake up at all. I know that sometimes I do wake up and I just don't remember. I know I turn alarms off and sometimes even convince my roommate or boyfriend that I don't need to get up. But then I barely remember these talks and have huge regrets about not being able to wake up. I'm also a heavy sleeper so sometimes the alarms just go off for an hour and I just adjust to it. I've tried the really loud alarm for hearing impaired people that vibrates the bed and that didn't seem to matter. I've done where you have to get up and take a picture of something in another room but that has also led to me falling asleep on the kitchen tiles and still missing stuff. The big lights which I hate turn on full brightness before my alarms even go off which doesn't help at all. I even had my boyfriend give me my meds before I need to get up but I swear I fall asleep before he even leaves the room and today I slept for 3 more hours after that on accident, through alarms. I am on a decently high dose of my daytime meds and I don't think those need to change. I don't take anything for sleep at night because my sleep study results showed that I slept super well overnight. These issues happen whether I sleep 7 hours or 16. I just need any ideas you guys have or any ideas that work for you. I don't care how crazy they sound I'm completely out of ideas and worrying that I won't ever be able to have a successful career or be able to take care of kids if this continues.

I went to get a second opinion from another sleep specialist a few weeks ago and ended up switching to over to his care. When I was there for my second opinion, I mentioned that my other doctor has diagnosed me as NT1 after my PSG/MSLT, but I didn't have emotionally-triggered cataplexy symptoms at all, so I thought I had NT2. He said he would help me figure that out and went through my history thoroughly with me for over 30 minutes.

He then gave me a questionnaire called the Ullanlinna Narcolepsy Scale and told me to fill it out by answering how many times those things happen to me (they didn't have to be emotionally triggered even though the questionnaire stated they did). I told him I don't have my mouth dropping open during the day, but my mouth won't stay closed at all when I sleep. He said to include that whether it happens during the day or night. I'm so happy he understands that cataplexy can occur without being emotionally triggered (not many doctors know that).

I scored 24, and 14 is the minimum for a narcolepsy diagnosis. He reviewed my answers and told me I do have cataplexy. To be clear, I was already diagnosed with narcolepsy due to my MSLT results in August, so having narcolepsy wasn't in question. I wanted to know about the cataplexy and other things, which he clarified and confirmed.

I haven't seen anyone here mention this questionnaire, so I wanted to share it with you in case it helps in any way. Here is the information on the questionnaire's accuracy and the questionnaire itself in case you were curious about it:

https://www.med.upenn.edu/cbti/assets/user-content/documents/Ullanlinna%20Narcolepsy%20Scale%20(UNS).pdf.pdf)

TLDR: I literally thought I had a stroke. 😐 Had an MRI and everything. Doctors couldn't find anything wrong in my brain and just didn't have any explanation for me. Thinking back now, it's possible it was cataplexy.

I was lying in bed one night trying to fall asleep. My body started feeling heavy mostly on the left side (which I was laying on) to the point I felt like I couldn't move. At the same time, the whole left side of my face drooped so severely I could feel it without seeing it. Then my body started convulsing.

My husband held me and tried to comfort me until it was over a few minutes later. I thought I had a stroke followed by a seizure but I wasn't sure because I was conscious the entire time and have no history of either. I think I was 29 at the time too, so young to be having a stroke. My face also stopped drooping immediately after, which to my understanding doesn't go away if caused by a stroke.

I have a history of panic attacks with muscle convulsions so the first thing I tried to do was to figure out if that's what it was. But I hadn't been anxious at all, if anything I think I was thinking happy thoughts. Also with my panic attacks, generally the convulsions are localized and if I focus really hard on stopping them, I can but they will move to another part of my body. This was all over and no matter how hard I focused, there was no stopping it.

Saw my doctor, saw a neurologist, had an MRI. They couldn't find any evidence of a stroke or seizure. They had no explanation. I think they assumed it was a panic attack and I was just being dramatic.

Looking back now, I wonder if the droop and feeling heavy/like I couldn't move was cataplexy.

I keep thinking about the past and finding all these events that could have been signs I had narcolepsy but I never knew to consider it. Neither did my family. And either the doctors didn't know or just didn't put two and two together.

I don't blame anyone for how long it took for me to get these answers. It seems, unfortunately, very common for this community. And there were so many other things that could have explained or written off my symptoms. But dang, is it frustrating looking back and realizing how many signs there actually were. 😓

Hi! I had my MLST today and failed the latency component but had soremp in 2 naps plus an overnight soremp at 4 minutes.

I was falling asleep multiple times during the test but between naps and had to stay awake. When the sleep wave passed or I did something stimulating to wake myself up, which included the sleep tech coming in and doing stuff and talking to me, I just couldn't fall asleep on demand. At home I fall asleep straight away when I get an attack and I can no longer drive because I have fallen asleep multiple times.

The tech said he's never seen anyone with this picture. I am on no medications, have no other comorbidities and usually sleep 8 hours a night and generally feel fine in the morning and for most of the day except when hit by a sleep attack.

Edited to add...what happens about driving if the diagnostic process is protracted? It is simply not feasible to not drive indefinitely.

I was just diagnosed with T1N today after probably 15 years of memorable symptoms and a multitude of doctors and two PSGs/MSLTs. I'm so happy so have answers but nervous to discuss treatment options. Just curious what everyone else's experience has been? Are there certain medications you noticed have helped you more than others? What did your doctors have you on in the beginning and how did it work for you if it all? How was insurance regarding the whole thing?

Thanks in advance guys!

I’ve been relying on Pavlok for like 7 years now, I will never not recommend them! But I was only tested because my doctor asked how I feel in the morning. “Dead.” “Do you ever feel rested?” “Pfft, nobody ever feels rested!” “Yes they do. So what do you do next?” “Hope I can stay awake long enough to drag myself out of my grave to the energy drink by my bed”

Ps. Reminder to the person who needs it that if they message me online they’ll be held in contempt of court and could face prison time. Don’t love that I have to say it but I’ve been really afraid to use this account, but more afraid of revealing my new account

Anyone else bombarded by Modafinil ads suddenly?!

Idk how everyone else feels, but personally it worries me to see Modafinil suddenly popularized as an “energy supplement” and not as the sleep disorder medication that it is.

TLDR: I’m on 200mg of mod. For a year but recently my energy/productivity has plummeted and I’m back to long naps and I don’t know what to do as I try hard not to spiral thinking about regressing back to my old routine.

I hope it’s ok that I post here cause I’m not sure if there’s another reddit thread that would have as much modafinil experience. I don’t have a narcolepsy diagnosis (I was supposed to get tested but without my knowledge they tested for sleep apnea and slapped me with a 4K bill and now i can’t afford to redo the test) but before i used to sleep 8 hours at night and take 5 hours naps daily and still be tired and i was so miserable for it. I’ve tried a handful of different medications since 2024 and when I finally tried mod. It was like a literal miracle I cried. Living life on 8 hours of sleep with no need for a nap AND without brain fog I didn’t know it was possible.

Well recently I feel my “old self” slowly creeping back. My brain fog and productivity is truly terrible and I’m taking naps again. Not as many for as long but it’s like 3 times a week now for 2 hours and it’s making me so upset. My hair has started shedding in large amounts which wasn’t an issue before (but was a big issue when I was on aderall) and I literally want to cry over the idea of this not working anymore and having to go back on the miserable path of being a zombie as I test new medications out. I’m already on 200 and I’m prone to headaches so I’m nervous to up my dose for that reason and the hair shedding. Though i honestly really might be willing to go bald if it meant being awake and productive again.

Really looking for anything from advice, comfort, suggestions, or a reality check 🫠

Ive been reading up/hearing stories about the side effects of oxybates (severe anxiety, depression, etc). And they all kind of just sound like me right now. Has anyone who has had the symptoms prior to going on medication had them go away? Or, above all, have these actually done good for anyone? I want to know if there is actually hope or this is all just downhill lmk 😭

I’ve accepted my limitations and grieved every version of life Ive hoped to live. I don’t cry over everything narcolepsy has taken from me as much as I once did and I no longer force myself to keep hoping for a cure. I can’t be a successful student and I can’t hold down a job. I can’t afford more, what kind of life is this to live? Ive honestly gotten to the point where it feels like narcolepsy is trying to kill me and I’m ready to let it.

after i got to about 6g a night on xywav, i started noticing tingling in my left arm in certain positions. i thought it might be the xywav so i gradually reduced the dose, saw some improvement, but the tingling never totally went away.

after some investigations and an MRI, its clear some mild bulging in a disc in my neck could be causing it so i went back to higher xywav doses. as I got back to 6g, i noticed the symptoms getting worse.

can xywav amplify the sensations from a physical issue like a bulging disc in the spine? so while there is an underlying physical issue, xywav makes me much more sensitive to it. have you heard of this?

I’m diagnosed with NT1. I’m a MS1. My school is giving me a hard time saying that I’ll have difficulty getting into clinicals and actually meeting the standards of clinical year because of the drugs I’m on and the drug testing requirements and the harsh demands of clinical year. They’ve been forcing me to take an LOA since the day I started. I have been doing my best to schedule appointments after class but I was recently admitted to the hospital and found out I have a Cavernoma of the brainstem and had to miss 1 day of classes. I signed AMA the next day to attend my group presentations because i didn’t wanna miss those. Other than that, I’ve turned in my assignments on time except maybe 2. And made up any missed tests or quizzes the very next day. I’ve contributed to all group work, done well on exams (passed them all 85%+) I admit I have missed numerous classes but they gave me an accommodation letter stating that there’s no max number of classes I can miss. (Meaning I have Unlimited absences) but now when I told them about missing classes yesterday and the Cavernoma and asking them for a schedule in advance so I can schedule my doc appointments and leave 15 mins early (ONE DAY) to attend my 4:45 pm appointment. They’re pushing a leave of absence on me and potentially talking about dropping me from the program because I’ve missed too many classes and labs. I’ve already spent way too much money into this. Changed countries, took out huge loans for tuition and everything. I don’t want to be dropped just because of my condition.

Can someone please help on what to do or what to say on my advisor appointment Friday?

PS: I’m on Lumryz, wakix, adderall and armodafinil

So I’m in the process of applying for disability (not specifically for this disorder) and I’m grabbing all of my paperwork just to find out I was told I have Narcolepsy Type 2/IH over a Telehealth call (I’m very confused which one I actually have because those aren’t even the same, but this doctor just used them interchangeably), but in writing it all just says Hypersomnia.

I’ve been fighting to get any records from the MLST and overnight sleep study that can support my case that I have a sleeping disorder. But I’m getting anything but every time I request a record from this guy. I’m getting my self attested questionnaires, drug tests, just anything but the lab results or anything that could point me to what he did during the sleep study. I even was put on meds for a bit, they made me nauseous, then got dumped off to my nurse practitioner because of my ADHD diagnosis, said it’d be better to just overlap the “hypersomnia”treatment with my ADHD treatment apparently.

On my appointment notes he at least added that my psg/mslt: mean onset latency was 2.8 minutes and I had rem onset 2 x out of the 5 studies. Can I work with that?

So I just got done with my overnight sleep study and MSLT. I was able to sleep on and off overnight, but they had me leave the MSLT after 4 nap attempts and I couldn’t fall asleep for any of them.

I’d never considered that I might have narcolepsy until it got brought up in my first sleep consultation last month. I’ve been chronically exhausted since elementary school to the point I’d fall asleep at the worst times, even while driving. I’ve also been struggling with constant sleep paralysis since I was 14, which I didn’t know could also be related to narcolepsy. But now that I’ve looked into the symptoms it was like I finally had an explanation for what was wrong with me.

I’m still skeptical about the results because they didn’t want me to go off my medications for the study. I’m on an antipsychotic and an antidepressant which I read can suppress REM, which explains why I have less dreams and paralysis episodes whenever I’m actually taking my meds consistently. Could that have affected the results of my sleep study and MSLT?

I also take a stimulant for my ADHD which helps with the fatigue to an extent, but they had me stop taking that for a couple days before the test.

Well last week I also found out I have iron deficiency anemia which could explain the fatigue, although I’m hesitant to believe that’s the only cause since I’ve been so tired for so long. I do have ARFID which means it’s possible that I’ve always had low ferritin/iron levels but still I’m not sure. I guess once I get iron infusions I’ll see how much of the problem that actually fixes.

I’m just feeling really down now because it felt like I finally found an explanation for what was wrong with me and now I just failed the MSLT. I haven’t met with my sleep doctors yet to go over the results of the overnight study but I’m assuming I won’t be getting a narcolepsy diagnosis considering how the MSLT went and the fact that my meds prevented me from even dreaming during the overnight portion.

What do you guys think? Is it possible that my iron deficiency is the cause of everything, even the sleep paralysis? Or should I advocate for another test where I’m not taking all of my REM-suppressing medications? I’m just not sure what to think at this point.

Anxious, hopeful, helpless, desperate, angry.

My doctor prescribed Xyrem yesterday. She said it’s usually a night and day difference for most patients. If it doesn’t help, she said she’s comfortable letting me try the new orexin agonists because she’s witnessed some of the clinical trials and trusts it. Everything could change. My sleep, my energy, my mood, my metabolism. The concept of having the energy to work out and go full work days, and of not having to do triple the work to lose half the weight, and of not randomly snapping at people it’s because I missed a nap. I’m so, so hopeful.

And then there’s the realization that this is only the start of the journey. After 5 years of telling people it’s autoimmune, it was vindicating to be diagnosed N1, and now it’s time to figure out what treatment helps it. My doctor said I can’t drive because I fell asleep at the wheel last weekend. Our follow up is in 4 months, so I likely won’t be able to drive for most of the entirety of that time. I have to work. I can barely stay away at work as-is and have accommodations to go to the back to take naps. It’s 20 minutes away, and I can’t drive, and I can’t Uber because I don’t even make enough money to cover anything other than my rent. Not my car insurance (which I guess won’t matter?), nor my phone bill, not utilities, let alone groceries. Disability is a pain, and the process will take about a year to start paying out, and by then my symptoms might very well be under control.

And then I carry this frustration that nobody listened except my doctors. While my doctors said, “We believe you that something is wrong, we just haven’t figured it out yet,” my mom is saying diet, diet, diet. I eat the same as my skinny friends. My diet is fine. I could drink more water, that’s it. And then it’s lazy, lazy, lazy. Our suffering is invisible and people can’t fathom the weight we carry from the smallest tasks feeling like they take everything out of us. I’ve consistently held down jobs despite coming home exhausted and feeling like my weekend isn’t enough to rest. I did a week-long inpatient EEG and they struggled to induce seizures because I had no stress, as I was receiving a break for once. But no, it’s my diet, and I never learned how to work hard, and I always play victim, and I’m napping to dissociate, and I’m saying I think I have an autoimmune condition to justify my weight. The saddest part is that I’m not even big. I’m a little chunky but I’m proportionate and never look out of place. But I was adopted into a family of people who think looks are everything. So if I’m overweight, it must be my diet. Surely it’s not because I can’t sleep or metabolize food and never have the energy to work out. Surely not. Fuck you.

My friends and people from my parish/churcha nd my priest are so understanding and accommodating in the most valuable and precious way possible, and for that, I’m appreciative. There are a number of people who, upon being told yesterday I had my driving restricted, discussed together who would drive me where and when. These are just my friends, my regular old friends who have shared mutual love and support with me for years. I say, “I don’t know how I’m gonna get to work. I can only drive in emergencies.” My mom says, “Don’t you think that’s an emergency?” A coworker who lives an hour away says, “I will talk to our manager about picking you up. I’ll get there super early because I live so far.” The difference is astounding and it enrages me. Albeit I think it cuts deeper because my adoptive mom has been emotionally abusive for years and when I finally told her it was narcolepsy and I was right that it was autoimmune, it’s, “I’m pleased for you to have some answers. You need to drive to work.” She thinks it’s being an adult and pulling myself up by the boot straps and getting shit done. No, being an adult is knowing my limitations. Struggling for a time while I invest in working towards something that could potentially alleviate the struggle completely is sucky, but completely necessary.

She grew up in a two parent household and her parents had a healthy marriage, she never struggled with money except for briefly during Covid, and hasn’t worked for 30 years. They paid for all of my brothers’ Bachelor’s degrees out of pocket, and then spent tens of thousands on my siblings’ weddings. I received help from my roommate on rent one time in 2024 and then she gets in my face and screams at the top of her lungs about all of the “free handouts.” And of course, they won’t help because, “If you give a man a fish for a day, he eats for a day. Teach a man to fish, he eats for life…” Fuck you. I don’t even eat seafood.

My family would block me from the couch, say “don’t fall asleep.” I fell asleep at parties, on floors, park benches, in the shower, in chairs, in cars, at church, at work and was poked fun at. It didn’t bother me when friends did it because they truly were just teasing, but with my parents it was just hostility masked as a joke.

I’m so exhausted, I’m so excited. I can’t drive, and I’m processing how it felt during the years of invalidation and mockery while I silently suffered, but I’m seeing a light at the end of the tunnel even if I don’t know how long that tunnel will be. That has to be my focus, the little light at the end of the tunnel.

I’m looking for recommendations for a sleep specialist in the Kansas City area who has experience with narcolepsy and more complicated sleep disorders, especially when psychiatric medications are involved.

I was diagnosed with narcolepsy around 2012, but I’ve had severe sleep disturbances since I was a little kid. I scream, yell, swear, cry, kick, and punch in my sleep, sometimes without even knowing it’s happening. I’ve accidentally kicked or hit people sleeping next to me, and I’ve had neighbors complain about how loud I am at night. Sometimes I remember really vivid, disturbing dreams, but other times I only know what happened because someone tells me or I hear recordings.

Previous specialists have suspected REM sleep behavior disorder (RBD), periodic limb movement disorder, and nightmare disorder, but I’ve never gotten a clear answer.

The daytime sleepiness is also debilitating. I can sleep 10 to 12 hours at night, take another 2 to 4 hour nap during the day, and still feel exhausted. Some days I only have about three hours where I feel functional. I’m currently taking Vyvanse 70 mg and Provigil 200 mg, and I’m still struggling. I’ve also tried Wakix, Sunosi, Adderall, and other medications over the years.

I recently saw a sleep neurologist who basically told me that I needed to come off my psychiatric medications to get accurate sleep testing and that we were already near the limits of what could be done for my daytime sleepiness. The problem is that discontinuing medications that help keep me psychiatrically stable isn’t a realistic or safe option for me. So I left that appointment without any testing scheduled or much of a plan moving forward.

I understand that medications can interfere with sleep studies, and I’m not opposed to doing more testing. I just need someone who’s willing to work with my existing providers and figure out what CAN be done instead of telling me what can’t.

I’ve also tried several medications for the nighttime behaviors, including prazosin, gabapentin, clonazepam, and melatonin, without much success or with side effects I couldn’t tolerate. I’m currently taking Lyrica for chronic nerve pain, but the episodes are still happening. Xywav has also been suggested multiple times, but I’m really hesitant about it because of the warnings and potential side effects.

I’m exhausted from dealing with all of this and would really like to find someone who can help me figure out what’s actually happening while I’m sleeping, rather than just adding another medication or telling me there’s nothing else to do.

Has anyone had a good experience with a sleep neurologist or specialist in KC who actually takes the time to work through complicated cases? Especially someone familiar with narcolepsy, REM sleep behavior disorder, or severe daytime sleepiness?

I’d really appreciate any recommendations!

Diagnosed severe sleep apnea and narcolepsy about 6 months ago: after years: I’m talking decades of extreme fatigue. With about 4-5 years extreme fatigue with falling asleep while driving etc.. doc has me on modafinil 200 mgs. I’ve taken it for about a month: and I still fall asleep randomly. Still have brain fog, exhaustion, etc… 4 years ago my mom passed away and I got hooked on opiates. I’ve been clean for 2 years. My sleep doc was worried about my recovery and modafinil. But I feel like I’m in a good place and I just need help with my quality of life. The modafinil barely does anything. I feel “more awake” for line 3-4 hours a day. Still need naps and fall asleep. Is anyone here on adderall and in recovery from opiates?

So I’ve been diagnosed with NT1 for about a month or so now and I was given Adderall 10mg twice a day, and lately it’s just not working for me at first it was good it helped i was awake and alert not feeling tired it was great. I don’t know what I am doing wrong or how I could have possibly built a tolerance so quickly because I don’t take it all the time just the days that I actually got something going on like work, or school. Sometimes I have short days so I only take it once since I will be home in the afternoon. Right now I’m trying to do doordash to make some money because my job situation sucks and i’ve recently have took on another job that I start this week but yk my pay wont come in for awhile since they are biweekly. I just don’t know what to do genuinely makes me feel like just giving up because I want to be productive so badly but it’s just such a wave of exhaustion that hits me and I can’t quite focus things the way I want too. I don’t know, I just needed to be able to write down how i’m feeling today and just need someone who can relate I’m sick of feeling this way, does it ever get better?

school... the bane of my existence. it was terrible even before my symptoms got worse (though to be fair, i was also unmedicated adhd during that time :') ) but its only gone downhill!!

everybody is alright with your disability until it actually starts to disable you, and when it does and you ask for a little grace because of it, youre "making up excuses." its so tiring being blamed for something i cannot control or predict, because trust me, if i could work, i would!

"just get more sleep! maybe its cause you stay up so late." as if i havent been trying to do those things for ages. as if i dont sleep more than enough, and even then, "enough" wont be able to keep me awake through the entire day.

im a responsible student. i really try to be. i turn in my things on time, i participate, but god forbid i dont do one of those things FOR ONE DAY!

i wish people didnt think i want to be disabled. i don't, and there's nothing that hurts more than knowing that even at my best, im still not enough.

I know I’m in the minority here, and most people do not have these side effects. I started Xyrem thinking “this is going to fix me!” and was so full of hope…

…but this medication SERIOUSLY changed my sense of inner happiness, my confidence being an adult in the world, my contentedness with alone time.

It’s been at least two months since stopping the medication, and the sense of feeling sad and lost isn’t going away.

While on them, I was debilitatingly anxious, to the point where I couldn’t leave the house without someone to be “attached” to. I couldn’t be left alone, either, without breaking down crying. I lost all interest in food: eating and cooking, which used to be one of my passions.

My job is being a science influencer, and now I am nervous to even put myself out there, in case I’m negatively judged. I NEVER felt like this before this medication. I miss how confident and extroverted I used to feel.

Has anyone fully recovered from this? My love of food came back, but I’m still waiting on the rest to fully return…

Just want to hear success stories and what you did to treat it.

Anyone else get what I have just coined as narcolepsy migraines? For me it happens when an alarm, or a person wakes me up during rem sleep. It is a recipe for disaster for me and why I can no longer use an alarm. Luckily for me, xywav keeps my wake up times pretty predictable depending on when I take it so I can play with different timing based on my wake up needs. Every once in a while I’ll get woken up by my “last minute” alarm which ends up being useless anyway since I’ll have a migraine too bad to actually get up and make it anywhere. Not sure how I’ll deal with this issue in a relationship though (and thank god no kids)

*2.5 MILLIGRAMS

Anyone else been given an Rx this low?

For context, I was on 40 grams a day for years (ADHD) and was still falling asleep sitting up during classes, after meals, etc. I was not diagnosed with narcolepsy, and went off it due to other health issues that are now resolved.

I got diagnosed with narcolepsy and have been on Xyrem for months now. I am still falling asleep during the day and am not functional enough to work. Told my provider I cannot go without stimulants and if it is a no go I will need to file for disability. She agrees to Rx 5 mg adderall that I must cut in half. I may take one half immediately upon waking and the second half but only before noon. Otherwise it will "affect my sleep". On Xyrem.

I told her I was passing out no problem on 40 mg and she says "not while you were on Xyrem", implying the Xyrem makes stims more effective.

Anyone else successfully functioning on 2.5-5 mg adderall a day?

I am on 70 mg vyvanse 9 g total xyrem. With this I can function well and work full-time 40 hours a week. I get home from work at 5 pm and even though I'm not so tired that I can sleep- I am so tired I can't bring myself to do anything other than lay down until 8~9 pm bedtime. I pretty much only get to do the things I enjoy on Saturday and Sunday.

I know this is much better than the alternative which is being unmedicated and not being able to work much + sleeping all day. Idk though it hurts to see my friends hanging out until 11pm being active while I'm bed bound. Is anyone else like this? How do I accept this and make peace that this is my life? I am extremely envious of others and it makes me bitter.