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

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.

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.

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…

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.

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)

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?

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?

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.

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?

24f. narcolepsy type 1 since childhood, diagnosed at 18 after 4-5 years talking to sleep specialists.

been waiting so long for these oxybates alone (a year and a half at least)—-through appointments with different specialists who dgaf, don’t know anything about N, or refuse to prescribe anything—-before finally getting a prescription recently.

i’m miserable. i’m already obese and anxious beyond reason. i desperately need real sleep. i cant think i cant remember. i want to cry . im dysregulated beyond measure. and then everyone here says how terrible oxybates can be for one reason or another, side effects-wise. i cannot afford to be gaining more weight or being more anxious.

i just want these orexin agonists so bad too. diagnosed via spinal tap ~2019. orexin levels are next to none. and apparently orexin is pivotal to regulating like 900 different things in the body. every day i don’t receive treatment i suffer more and i feel like i’m going to lose it. i feel like im at the edge of it all but cannot wait any longer.

for context, i’m on max dosage stimulants and antidepressants, and didn’t wanna try anything new while in college bc i didnt wanna throw a spanner in the works while getting my degree, esp bc i wanted to study abroad and didnt wanna deal with the logistics of going abroad with oxybates.

now that i have a degree and a low-key part time job with accommodations, about to start a new therapy, i feel like i’m in the best place i could be in, but i also feel like I’m at my breaking point. even now, all i can do is work.

i used to go to the gym after work for abt 30 mins doing light cardio. that lasted 8-10 months and it was great for me, but it also made me more prone to becoming drowsy on the drive home and i found myself having to pull over, so i quit. i can’t even go out with my partner 90% of the time because im anxious and angry and overstimulated by everything because i wake up like 100 times a night.

every day my body is running on like 2 hours of rem sleep and prayers. it’s like i can’t have anything at all. this disorder has just ruined everything. i don’t want to live like this

tl;dr: lord give me strength

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’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!

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?

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

*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?

Ok so I was diagnosed about 2 years ago and lost my insurance shortly after. I was only on xywav for a month (i got a free 1 month supply while waiting on insurance approval but like i said i lost my insurance) so i haven’t been receiving treatment. At this point not being treated is having a severe impact on me physically especially with the extreme stress i have been under with my GF being hospitalized most of the last 1.5 yrs and being on a ventilator and a few months ago becoming her 24/7 caregiver with virtually no help… I am truly starting to fall apart.

Does anyone have any resources that could help me with seeing a DR/being treated? (Texas) I know the company for xywav has this assistance option for people struggling financially to get it for “as little as $5 a month” which is great but i cannot afford to see a sleep doctor to obtain said prescription as i have been out of work to care for my GF. It’s a mess. So please any help/resources would be beyond appreciated!!

Long story short: I got diagnosed with IH and suspected narcolepsy but they can’t do the narcolepsy test because I take Effexor and apparently that cancels something out?

I’m struggling so much right now with the exhaustion I feel like I’m constantly moving through mud and it’s so hard in my mental heath. I want to try meds but I’m nervous to feel better and be stuck on them forever.. I guess I’m looking for someone to tell me there’s a light at the end of the tunnel or my quality of life could change for the better if I try them.

Update: thank you to everyone for reminding me that trying meds might just change my life and being on meds isn’t that big of a deal if I can have a better life.

I know I’ve already posted a similar question but does anyone have any last minute packing recs or tips (or snack suggestions to grab)?

It is open enrollment for health insurance at my company and I am wondering if I should go to the highest / most expensive tier in hopes they will cover specialty medications such as orzeyful. Does anyone have any insight into if this is necessary or if they are considering doing the same? I also don’t know if the drug will be in available through insurance in the next calendar year but want to try it as soon as it becomes available. Thoughts?

I apologize for such a lengthy post. My most important questions are at the bottom.

I am on my second sleep doctor and it seems like I need to see a third. I have seen so many specialists and have been cleared of any other reason, including psychiatric. Both sleep doctors I have seen were neurologists. First sleep doctor only did a PSG and sent me away after no sleep apnea or PLMD. This test was done while I was on REM suppressing meds (which I have taken 6+ years daily) so my REM sleep was at 3%. I had an arousal index of 18.1/hr as well as “abnormal K-complexes” and he said this was likely due to severe, chronic parasomnias. Second doctor was certain I have narcolepsy after actually asking me questions about my life. He told me I am experiencing hypnogogic hallucinations and cataplexy. He also told me my strange nighttime behavior is NOT random and further indicates narcolepsy (lifelong history of sleep walking, talking, intense nightmares, acting out dreams, confusional arousals, etc).

I felt really validated and so happy I was going to get help. I tapered off the REM suppressing meds for a month and a half. Then I did the tests at his clinic and it all went downhill. PSG went well and I was comfortable and calm. Then during the MSLT I had intense anxiety related to PTSD (environment/context of being prompted to “lay down for a nap” was very similar to CSA I experienced). My watch captured my heart rate at upwards of 115-120 during times when I was supposed to be napping and my rate during the PSG was 50-60s. I felt my body rip me awake as soon as I drifted off and then I would sit there the rest of the nap trying not to cry or panic more (which is very unlike my naps in real life obviously). I mentioned this to the tech but he didn’t seem to leave a note. I was deeply affected after the experience and I spent the rest of the week hysterical whenever I thought about it. This is very uncharacteristic for me because I have done extensive therapy.

On top of the anxiety piece, I felt physically unwell and the environment was loud and overstimulating. They did not offer food so I went the whole day hungry as well. Overall it was just horrible in many ways and I feel like the doctor took all of these things as an excuse as to why I failed.

During my follow up, the doctor essentially said I am lying about being tired. He was very confusing because he said my diary showed excessive sleep + IH and my MSLT report said possible IH as well. But then at the same time, he said there is zero evidence that I am tired. He also claimed I did not sleep for any naps (???) but my report showed I slept in 4/4 naps (somehow). My avg sleep latency was 10.75 mins for the MSLT (12, 10, 11, 10) and 4.5 mins for the PSG. No REM on the MSLT. The report didn’t have any info on REM latency for the PSG so I have no idea if I entered it quickly, but it was still low at 14%.

I am now left feeling like maybe I was wrong. I am not sure what my next move should be because clearly I cannot handle another MSLT without significant accommodations. I don’t know if anyone has a situation like mine, but if you do, I would really appreciate any insight. Has anyone else had to go through several doctors? Was anyone diagnosed or treated despite negative testing? Did anxiety affect your results significantly? Did you do better during repeat tests? Is there something you said that helped your case? Also am I wrong to believe that a normal person wouldn’t sleep all 4 naps?? Anything helps.