Over the past year or so I’ve seen so many doctors trying to track down why I’m so sleepy to the point where I hate driving anymore. I just got back from my appointment with the long covid specialist, who says my condition doesn’t sound typical for long covid, but that the pattern of my sleepiness/fatigue sounds exactly in line with narcolepsy without cataplexy… but I had a normal sleep study + MSLT, so he’s mystified.

My psychiatrist and PCP have said almost the exact same words to me. The rheumatologist (who has discharged me) mentioned she suspected some kind of sleep disorder as well. The endocrinologist just made sure my hormone labs came back right and discharged me with a “keep looking!” The sleep specialist discharged me after the results of my sleep study.

My PSG came back 24 mins sleep latency, 79 mins REM latency, 0 AHI, 93% sleep efficiency. MSLT sleep latency 5-20 minutes, mean 16 minutes. No SOMREPs. I really thought I’d fallen asleep for more of the naps, but I was so anxious and excited at the idea of finally having an answer, maybe I messed up the test?

The next specialty my PCP recommended I see is neurology. But I’m so tired, I’m tired of seeing doctors who can’t help, I’m tired of paying copays, I’m tired of missing work for doctors appointments, I’m tired of hearing “wow that sounds like narcolepsy!”

I guess I’m mostly just venting. This has been so hard. I’m half ready to just give up and accept that nothing is wrong with me, I’m just different, that I just need sleep more often and I’ll never get as much time in a day as normal people get. If anyone here has a similar story, I’d love to hear about it. Or if no one here has a story like this - if it truly seems like I don't have narcolepsy - that would be reassuring at this point, too.

This is flagged as a positivity post because I think it’s inspiring, but it is of course also sad, especially the bullet point below. But anyway, I recently learned that historians speculate that Harriet Tubman might have had Narcolepsy, possibly in conjunction with epilepsy.

— When Tubman was about 12, an overseer threw a heavy metal weight that struck her in the head. She was unconscious for a long time, and never fully recovered. (We know that head trauma can cause both N and epilepsy.)

— Afterward, she experienced a lifelong pattern of sudden sleep episodes, visions, and vivid religious experiences.

— Both Tubman and her contemporaries reported that she would fall into “sleeping spells” at unexpected times, sometimes in the middle of a conversation or journey. She also reported powerful visions and religious “trances” during these episodes.

So: some historians and neurologists think these were complex partial seizures or temporal lobe epilepsy triggered by her head trauma. But others suggest narcolepsy, because of the sudden, overwhelming sleep attacks she described. And of course a third possibility is that she experienced both epileptic seizures and narcoleptic symptoms; head injuries can sometimes cause overlapping sleep and seizure disorders.

Impact: Tubman interpreted these episodes as spiritual guidance, and they became part of her courage and conviction in leading enslaved people to freedom. So they were important to her personally, even if I’m sure they were also draining.

As the title says, I fucking hate being sleepy. Got recently diagnosed with hypersomnia (on SSRIs and that can affect your eye movement). Doctor called me for my results and said “dude you’re sleepy af”. I fell asleep less than a minute every time during my daytime test.

I’m so angry because I’ve been living with this for at least 15 years. I always fought off the sleepiness (usually unsuccessful) but I tried really hard and I could function at least to become a doctor.

Now I’m finally on modifinil and the sleep attacks are less dramatic. I can stay awake more easily. Thought I could just use this at work but I can’t. I struggle even more now when I don’t take the meds daily. Even with the meds I’m still fucking sleepy just awake and sleepy? Do others find the same issue? Do I just need to accept that this is now a daily med for me?

I try to get 8-9 hours of sleep a night. I’m discovering that when I get up before my alarm goes off (maybe around 7 hours of sleep or so) I’m more alert for the day and I’m in a better mood. Stimulants work better as well. If I go back to sleep and get the full 8 then I wake up so sleepy and foggy the whole day. It’s like my body can’t wake up from the deep sleep. I wonder if this is because if I try and go back to sleep for an hour my body goes back into REM and it’s making me more tired.

A couple of weeks ago I had a hysterectomy. From the time I was given versed to when I was finally fully awake was about 8.5 hours but I was only under general anesthesia for about 2.5-3.5 hours. I’m just adding this info in case it helps with any advice. Since the surgery, my sleep schedule and reactions to medications now have been baffling to say the least. I haven’t had a surgery since 2012 and when I was on the pain medication, it knocked me out within minutes of taking. This time though, I could take it and still be awake hours after. Since finishing the pain medication, I waited a few days before starting my Xyrem again just to be extra safe and cautious, but when I started back, it had minimal effect. I’m on a pretty low dose anyway, but my first dose would have me out within 30 minutes of taking it. I’m also naturally a night owl, but I’m going back to work next week and since Sunday I’ve been trying to get back on my sleep schedule with no luck. Has anyone experienced anything like this? I see my neurologist next week as well and will obviously discuss this with her, but I appreciate any advice or insight in the meantime!

Raise both hands if you have one almost every day 🙆🏻‍♀️

Heya all (25M). After a few months of finnally having suspicions, I got my tests done and a positive N1 diagnosis. I'm still learning what are symtptoms and what aren't and it's almost been oddly fascinating to discover. I got a score of a mean sleep latency of 5'03" and all 4 naps had SOREM periods. From what my doctor said, "That's a home run!" in terms of having easily conclusive results. I'm not entirely sure the "severity" scale of that mean time, he sounded like it was pretty solidly aggressive, but it's been curious to soon start to parse apart what's actually mental illness and what's the physiological effects if narcolepsy, as it is treated. It seems everyone has similar but also vastly different symptoms of their own too, it's so hard to seperate what's normal, and what isnt.

I'm like everyone else, at the mercy of the insurance companies, who have the reigns in terms of the order and specifics of the meds I can try. Round one is Modafinil. I have historically been hypersensitive to majority of stimulants, for ADHD treatment years in the past.

The hardest part of this entire thing is honestly how it's going to impact my marriage to adjust chores, outings and events, and frustrations that ensue from change. Ex: Dishes are my enemy. It got so bad recently I vidily remembered washing my bowl before bed, to a pinpoint accurate degree, to only have my wife discover they were never done at all! I laugh, we laugh, but things like that compound wear on her. I know she can't fully understand how it feels to always be exhausted, and I don't fully understand what it's like to not be exhausted every second either. What are tips, ideas, advice, anything really of navigating marriage through especially the next few months of begninning treatment? And also, has anyone else experienced memories like I stated above that litterally just never happened, complete fairytales?

So i was recently diagnosed with ADHD. Met with provider to check in the other day. I was describing my symptoms when I am taking my meds and coming off of them which mostly includes extreme exhaustion.

We started talking a bit more and he started asking if when I had been off stimulants how my energy and sleep were. And my response was that I was always tired (even if I get a full 7-8 hours). I could drink coffee and feel it but once my body got used to it I would get sleepy again until I loaded up more which I tried to not do. I used to nap in the afternoon and this could be for 1-2 hours easily when not on stimulants.

He asked about my dreams and I do on occasion get very vivid dreams that feel like I am there like all my senses are firing. Ive had sleep paralysis in the past and usually dream more when detoxing from caffine. When I start falling asleep I am still awake but images of random shit come I to view with my eyes closed and I sometimes hear what I like to describe as radio chatter.

His reason for asking me is because he is telling me what I described is what he has heard others in his practice tell him who have a full diagnoses. He told me to research and let him know if I want to do a sleep study.

Thoughts???

*wanted to add that even while on my stimulants the effectiveness fluctuates and I have periods of extreme exhaustion and wakefullness. Ive always felt like im in a fog.

I have been asking for a sleep study for 2 years. I was first sent to a place (when the referral was just for them to perform, but they decided I needed a consultation visit before performing it). The "sleep doctor" said he knows I don't have sleep apnea by looking at me, and can tell I just need to lose weight and cut all sugar out to fix my "insomnia". I did not go back there. I asked for a new referral, and it took a while to find another sleep medicine clinic in my insurance. I was sent there for an appointment, and the NP said "I think you may have Narcolepsy." I was a bit blindsided, but had previously thought about the possibility after falling asleep in many random and varied places. She said it would take 2 weeks then the clinic would call to schedule the PSG and MSLT. I didn't hear from them, so I called after 2 weeks. I got set up for a date at the end of June. 1 week before I got a call that they canceled it due to the clinic only doing this kind of study on Thursday/ Fridays. They rescheduled me for the first week of Sept. They called me this week to cancel that one, saying my insurance denied the study. I called my insurance, and they said they did not deny it. It was due to the referral only covering until August 6th. I called the sleep clinic and they kept insisting that it was denied. They then told me they couldn't schedule me again until they had a new procedure referral/prior authorization from my PCP... I know they are scheduling months in advance. I have no idea if I will even get one this year. I am just tired of fighting, as I have fought with many other health issues already. Now I guess it is time to call my PCP again.

I was reviewing my 10 year old PSG + MSLT report that was the basis for my N2 diagnosis and I was surprised to see there were no SOREMP numbers listed anywhere on the chart (attached) or the report.

On the report conclusion it does state "number of SOREMPS are supportive of a clinical diagnosis of narcolepsy in appropriate setting"

Admittedly I'm still learning to interpret how and what everything means so I was wondering if my fellow sleepy friends here would assist me in figuring this out.

Did someone fall asleep while compiling this and forgot to include it in there or is it just me and my limited knowledge where I'm missing something..

I’ve been diagnosed with type 2 narcolepsy, but I’m wondering if certain symptoms suggest mild cataplexy. I really try to avoid yelling at my kids, but when they push me over the edge and I yell, I feel like I have to go lie down immediately. I definitely wouldn’t collapse, but any overwhelming frustration results in me needing to go to my room and lie down. I feel totally drained of all my energy. Is it cataplexy or is this just how I cope?

Hello I’m a 22F who just got diagnosed with narcolepsy type 2, I knew for the last two years this was a possibility (especially because my dad and lil brother are both narcoleptic). Finding out this diagnosis has made me have to sit and think today, I’m currently in college to be a firefighter and an EMT however, I now have some fears about doing that. I was hoping by making this post today I would be able to interact with other people who are first responders with narcolepsy.

I’m just hoping to see if there’s anyone else out there who struggles with narcolepsy type two or one and is a first responder as this is a career choice that I am very dedicated to and I would do anything to be able to work in this career field.

Sorry if this post is bad, I don’t really know where to start with this or really even talking about this….

Hopefully starting lumryz soon. My insurance finally approved the prior authorization for lumryz starter pack. Does anyone know if that is its own prescription? I currently have individual prescriptions for everything that’s in the starter pack, just need to know if I need to message my doctor and get a script for the starter pack itself?

Anyone else feel like a worthless, heaping pile of garbage for the first 4-6 hours of being awake regardless of stimulants?

I set an alarm for an hour before I have to be awake, take my adderall / provigil and go back to sleep for an hour while the meds kick in. I STILL feel like I’m raising from the dead even once the meds have kicked in. If I don’t take it & let it kick in, it’s so much worse. The brain fog sets off my OCD & I’m just obsessing over my fatigue and why I’m so tired and what I can do to help it and when I can take meds again, etc etc.

I genuinely feel like I can’t be bothered to carry my heavy bag of bones around until I’ve been awake for 4-6 hours, sometimes longer. I’m counting down every single second until I can get back in the bed and close my eyes and then BAM! I’m finally awake and feel somewhat ok & guess what?! It’s bed time 🙃

Not diagnosed but awaiting all the tests. I can't stay awake longer than about an hour and there's severe catalepsy. Not sure why, not even going to guess. So for the severe memory loss, I have a whiteboard in my hallway I write everything on which has been a life saver. I've just been using discord timestamps to have an idea of how often/how long these episodes are occurring, but I'm sure you guys know a better way? Or does it even matter? If I had a smart watch that tracks sleep would it be able to know?

I'm not driving or leaving the house unsupervised for safety reasons until we get things figured out more. The other issue is I stumble around and fall over trying to make it to the bedroom, which ends in me just sleeping on the floor half the time. My only idea is to buy a big beanbag chair and aim myself in that direction when I go down. I'm just trying to get by for the time being. Any tips at all would be greatly appreciated. I feel so stuck and helpless right now, but trying to stay positive.

Who has experience with Wakix? At $5000 a month cash price I feel you should never need sleep again and shit gold bricks. I’m afraid to try it

I made a post yesterday that was removed, because I asked whether my PSG results leaned more towards Narcolepsy or Idiopathic Hypersomnia. I understand why it was removed, and I apologize for asking a medical question in this forum; that was my mistake.

I just got my MSLT results back, and I am diagnosed with Narcolepsy. I have a lot of new questions for my doctor now, because the only question I had before was “why am I so tired?” And I know now, but now I have so many more questions.

I’m a bit shocked, if I’m being honest. I convinced myself I was lazy; I’m not that tired. But I’m not lazy, and I am that tired! It’s just all very shocking, confusing, worrying, but validating and relieving to hear I’m not crazy, or lazy.

I don’t really know how to feel. I keep bouncing between feeling relieved, to feeling alone and scared, to feeling upset, to feeling validated, back to relieved, and my feelings are just all over the place. I feel sick to my stomach and my heart is pounding. I thought I was crazy, that I was being a hypochondriac. I thought I would be brushed aside and ignored again. But instead, I was listened to and taken into consideration, and found out I’m not crazy or a hypochondriac.

I’m scared though. I don’t know what’s next. I don’t know how to feel about an actual diagnosis. I don’t know whether relief is an appropriate feeling. I don’t really know anything, except that I have a diagnosis of Narcolepsy now which answered my one question, but gave me hundreds more.

I’m sorry for the long tangent. Thank you for reading if you did. Any advice is welcome.

Hello all! So, in reference to my last post, my appointment went well and I was referred for a sleep study. My doctor took me seriously for narcolepsy, and even gave me a brief rundown on treatment once confirmed. So that brings me to another question

• is sleep talking “normal” in narcolepsy? Everything I’ve found says it’s prevalent among narcoleptic patients, but not caused by narcolepsy. Do I bring it up? I have recorded myself saying “no” repeatedly, mumbling, I’ve even been told I have full conversations while I sleep (none of which I remember). I’m afraid of it being RBD, and want to know if I should bring it up to my sleep specialist. I don’t act out my dreams physically, but I have snapped awake while crying out before.

I’ve been seeing a psychiatrist for many many years for a variety of issues, including adhd. They know about my extreme fatigue, and they’ve prescribed me several medications over the years for my insomnia

I got diagnosed with narcolepsy by the sleep specialist a couple weeks ago, and they advised that my psychiatrist take care of narcolepsy medications so that all of my meds are in accordance with each other

I don’t know how knowledgeable my psych is about this sort of thing, maybe she’ll surprise me?? I’m wondering if I should maybe suggest certain meds to get on the right track. She’s usually pretty receptive to my suggestions. Did anyone else have success with starting this journey with a psych and not the provider that diagnosed them?

I was diagnosed with N1 earlier this year, but parts of it didn't make sense. My sleep latency was 8.3 minutes and I never hit REM during my sleep test. But I hadn't done a proper SSRI washout, so I figured that was why I didn't hit REM. I had a CSF orexin test and my levels were over 400. But I had what I thought was cataplexy (random bouts of muscle weakness sometimes brought on by stress sometimes unpredictable), as well as excessive daytime sleepiness, sleep hallucinations and paralysis, and very fragmented sleep. I'd wake up after an hour of sleep feeling extreme fear. Sometimes I didn't know who I was or where I was. Sometimes I'd kick or punch the bed. After a few minutes I'd wear myself out and go back to sleep but this happened many times a night.

I recently started taking Xywav. I've gotten amazing sleep on it. But I have been having episodes multiple times a day where I get this whooshing noise in my ears. I have this head rush feeling. Then I get sort of....stalled out. I don't register what's around me or understand people if they're speaking to me. I can't really move or speak. I just repeat the same thing in my head over and over again. Usually a song is playing in my head at the same time as this is happening. It always feels like a familiar sensation. Then I snap out of the song. There's a ringing in my ears and I feel confused and tired. Sometimes I feel like I'm not in my body. I usually find I was fidgeting in some dumb way with my fingers or touching my tongue to part of my mouth over and over.

According to Google these are symptoms of temporal lobe epilepsy, which can also cause sleep disruptions and hallucinations. My symptoms line up weirdly closely with it. I've had these episdoes all my life but never so often as with Xywav. Wondering if I've been misdiagnosed and my sleepiness is caused by nocturnal seizures. Anyone been through anything like this?

Has anyone else noticed that having someone pinch or squeeze your forearms can short circuit a cataplexy attack?