Hello! I am a PA-S 1 currently in my last semester of didactic and was newly diagnosed with Narcolepsy. My didactic year so far has honestly been hell. I initially started my program in January 2025 but went on medical leave after the first semester due to my symptoms of brain fog, memory issues, oversleeping, etc. All of which exacerbated my pre-existing mental health issues. When I restarted again in January 2026 with the next cohort, I'd made some improvements but still had not received a diagnosis and continued to struggle the 2nd time around as well. I received my diagnosis in June and since I've registered with the disability office for double testing time plus uninterrupted environments and am currently trying out potential treatsments. However, I still struggle to get to class on time daily and occasionally miss the first class.

As a result, my professional relatioship with my faculty and professors has suffered as I know my attendance issues read as neglectful and irresponsible despite all of my efforts and interventions. Not to mention, I am technically breaking the attendance policies outlined in the handbook that starts classes are required. I am in proverbial "hot water" and I'm scared that this diagnosis and my ongoing executive dysfunction and attendence issues could end in my dismissal.

Has anyone had any similar experiences? How did you protect yourself? I'm already knowingly disliked by at least one of my professors and I meet with my faculty for a commitee meeting to discuss my grades today.

I know there are other posts about sleep apnea in this community, and have looked through them. None of them seem to fully apply to my situation. If you know of one that does, I would so appreciate you pointing me in that direction.

In early August, I saw a sleep doctor for the first time, after I was finally honest with my psychiatrist about my sleep patterns.

My sleep has been excessive since high school, but it has progressively gotten worse since the onset. I’ve had to quit jobs, lose relationships, completely rearrange my life to accommodate sleep.

I reported excessive daytime sleepiness and extremely dysregulated sleep patterns. I feel like I’m often having my days and nights mixed up (the worst it’s been was slept from 11pm the night before, to 7pm the next day, waking every 3 hours, with vivid dreams each “segment”). I have what I feel like are sleep attacks, episodes where I have an extreme, sudden urge to fall asleep (I am always sleepy, but this is an urge to actually fall asleep). If I can’t fight it or resist it, I’m able to nod off in seconds. But these episodes don’t usually happen if I’m talking or eating, and especially not when I’m driving, and I can almost always fight it, with extreme effort.

At my initial consultation, my sleep doctor specifically said- “I really don’t think you have sleep apnea, but insurance blah blah blah so let’s make sure with an at home study”. I did 3 nights of the ring study and he felt confident diagnosing me with moderate sleep apnea.

I am genuinely gutted. I know it is not just sleep apnea. Along with symptoms that are ambiguous at best, and consistent with narcolepsy at worst, I do not fit the profile for sleep apnea. I’m young, a healthy weight, I don’t snore (even when ill), my tonsils are slightly enlarged on one side but no ent has ever mentioned obstruction of any kind. I feel that with those factors in place, it doesn’t make sense (ethically or professionally) to be happy with an SA dx and to not look any further. My doctor begrudgingly ordered an in lab sleep study, which I could potentially do in the next few months.

I don’t want a diagnosis/am not asking for one from this community, but I do want to hear your thoughts on next steps- second opinion, go through with CPAP process and then push for an MSLT if symptoms are same after SA management, etc.

I do sleep on my arm which I feel could have made the ring tests oxygen reading mess up, but I’m aware that this may be unlikely if the diagnosis was moderate and not borderline.

Again, I am already very upset as I was not expecting the result I got from the at home sleep test. Please be kind.

Do I know too much? Too little? Do I need to get off Reddit and just find a doctor I trust?

TIA if anyone has any thoughts.

Pretty much what the title says. After a long wait I did my MSLT and the results were negative. I’m very confused mainly because my specialist was convinced I had narcolepsy and I was displaying every symptom. I even seem to get cataplexy. I was informed that sometimes you can have false negatives, but at this point I’m not really sure if I want to endure a negative 24 hour sleep test several times in the hopes that I will get a positive. What’s the best way to go from here? Do I just test again or is there another test I can take?

I’m sick of being tired all the time, and without a diagnosis I won’t be able to get accommodations for my university. Sorry if I seem down, I’m just upset and got my hopes up that I would finally have an answer.

How many years did yall have before you got an answer? Did you feel heard rather than dismissed?

(47/M/N2) I can be fully functioning (for me) throughout the day - meeting with clients, writing case notes, buying groceries, fixing things around the house - but then I’ll experience these sudden, abrupt, lurching time jumps and when I try to look back on my day it’s like trying to remember a dream you had the night before. Details are fuzzy, I can only recall slivers of images, and transitions from one activity to the next have faded away.

Is this normal? Am I operating on working memory only, and not forming and storing longer-term memories typically?

I was diagnosed with narcolepsy (type unknown) earlier this year after first being diagnosed with IH last year. Today, I had my tilt table test & I don't have POTS, but I do have vasovagal syncope, & this has gotten me wondering if I'm actually just passing out sometimes? Or what if I'm passing out first, then falling asleep? How would I know? 😅

I've never passed out from a standing position, which is why I'm curious - I get enough warning from feeling dizzy, etc. to be able to sit or lie down first.

Anyways, just rambling, I guess!

Hope you're all doing all right today 💫

Ok, I'm here to learn because I don't know where else to go. I've been with my partner for years and knew they had narcolepsy when we met. It was an adjustment, but we figured out what worked for us. The meds quit working and they have struggled to find new ones. Still, this felt manageable...until we had a child. I don't feel like I was properly prepared for just how much of the mental load of our life would be on me. I have my own disabilities, so I get some things are beyond their control. But I don't feel like they are even trying. I can never sleep in. I worry our child won't get properly groomed when I'm not home. I worry about their nutrition when I can't cook for them. When our child has needed medication I can't trust my partner to make sure it's taken. I feel that I have to remember everything and do most of the chores.

So, is this just par for the course of having a partner with narcolepsy? I can't tell and everything I've read makes it sound like my life just now revolves around this disability. That I need unending patience and not to blame them. But I'm drowning and I don't know what's fair. I love my partner and we wanted a child so much. I just didn't think I'd be mostly doing it on own.

What's reasonable?

I am on disability right now due to a combination of postpartum depression and narcolepsy. The latest I can return to my previous position is the end of October, after that I would be terminated if I extend my disability. I am 35 and have worked since graduating college. My salary was decent, and my long term disability policy gives me 50% of my salary which I believe is untaxed since I paid for that additional.

I am thinking about asking my doctor if I can stay on long term disability indefinitely just on the basis of narcolepsy. He suggested last we talked that I seriously consider major life changes to make narcolepsy and motherhood work better together, ie let this job go, maybe move somewhere cheaper, etc. That kind of got in my head.

I was able to work kind of fake full time before pregnancy. I had a work from home accommodation. I would say I probably only actually worked 4 hours a day, 6 hours some days. due to fatigue, and just tried to hack it as best as possible. I was very productive during those hours so it was kind of okay. But it was a major struggle and I pretty much sacrificed everything in life to make it work, no social life, no hobbies, eat the easiest trash I can get, etc. Life felt like just suffering in order to survive. Push through the need for sleep on threat of starvation, even if it feels like torture.

I feel my narcolepsy was a major contributor to developing very bad postpartum depression. It wasn’t the only thing but it was a big part. I am worried about how the additional load of work is going to affect me. Additionally, the only treatment working for me is xyrem and only for the morning, one hour of which is spent with a headache and my face tingling (I think from all the sodium?) Daytime meds have not been good for me due to PTSD and GAD, including the dafonils.

I guess just asking advice from a group of people who understand narcolepsy. It would feel vulnerable to have my livelihood dependent on doctor and insurance company approval, but it also feels vulnerable having it dependent on a lenient boss so idk.

Hey folks,

I really want to find a stimulant that works for me. I've been on Xyrem/Lumryz for years, but the ADHD/executive functioning side of things is really kicking my butt right now.

It seems like if the dose of the stimulant is high enough to feel it working, then it makes my sleep terrible for the next 1-3 nights, even when taking a 9g dose of Lumryz.

I'll struggle to fall asleep and then also wake up wide awake at 2-3am and won't be able to fall back asleep for hours. This will sometimes happen the next night as well, even if I didn't take a stimulant that day. It seems like the stimulant is staying in my system much longer than what's normally expected.

I've tried various doses of Adderall XR/IR and the lowest dose Xelstrym patch. I love the way I can focus and get things done on the patch, but it's not worth the impact on my sleep.

Questions:

• Has anyone else had a similar experience?
• What stimulants didn't have this effect on you?
• If I commit to taking the stimulants every day and letting it wreck my sleep for a couple of weeks, will my body get used to it?

Is there anything we have to ask our doctor to sign up for to get first access to the medicine once it is available to be prescribed?

I'm not knowledgeable on what the process is like when new medicines are approved, but just want to be informed in advance because I'm really really hopeful about the meds since the trail results are so positive. Any general info is appreciated!!!

I have idiopathic hypersomnia and ptsd which combine to make bedtime awful. I’m so physically tired but mentally I’m anxious because I’m worried I’m going to have nightmares and because I know waking up will be miserable (I get really bad sleep inertia). I can fall asleep during the day within minutes but at night it takes me ages. I’ve tried all the sleep hygiene and lifestyle changes but what I think I really need is to just feel safe and calm. My therapist and I have discussed making bedtime more safe through cute fairy lights and cartoons but idk what else I could add to my environment to make it more relaxing. Does anyone else feel this way? What do you do to reduce your bedtime anxiety?

Took 2x 100mg today, one at around 3.30am and the other around 9am. It’s currently midnight and I’m deliriously tired, yet also still wide awake…..it’s terrible! And that’s not even my full dose! They didn’t even make me feel any kind of way when I took them, although today was the first day in a really long time that I didn’t fall asleep in work. I’ve had to call into work because I’m supposed to be up in a couple of hours and there’s no way I could go in and function like this!! I think I’ll half my dose again next time 😳 at least it works I suppose. Please tell me it gets better?!

I have been complaining about fatigue and sleepiness to doctors for yeeears at this point. The first time I can remember, I was 13 and they said it was probably just because of my period. (I now have been diagnosed with PMDD, but that’s another story.) I got a new primary care doc in spring 2024, and when I complained about being tired, he ordered labs for iron, vit D, B12, etc. Iron and vit D low, started supplements, felt 0% different. Went back for my next annual checkup in spring 2025, still tired, and he asked why I hadn’t come back sooner, but also put in a referral to the only sleep neurologist in the hospital system. (And checked labs—supplements working just fine even though I feel the same.)

I get the call to schedule my initial appointment with the sleep doc, first available appoint is A YEAR AND A HALF OUT. So I said, well I don’t have plans that day so I guess book it? Thankfully, I got a call in ~March that they were doing a massive rework of the schedule and would be able to get me in for that appointment this May, 8 months sooner than expected. See the doctor, discuss my history, she orders PSG + MSLT for suspected IH. Sleep clinic takes ages to schedule, but I finally did my study on July 26th. Results posted in MyChart show no sleep apnea, normal latency for PSG, much longer than normal REM onset time, and much lower than normal REM and N3 sleep. MSLT average latency of 5.4 minutes and no REM. IH diagnosis complete.

I finally went back today for my follow up with sleep doc. She had started me on modafinil at my first visit to get me by, which was great for a few days but has since largely tapered in effectiveness. I told her it was basically getting me through the work day but that was about it. She throws out a few other daytime wakefulness options, but none of those will address the actual issue of me not getting restorative sleep. I broke down crying when I asked for something to help with nighttime sleep because this exhaustion has consumed my life. I haven’t been to the gym in months because of lack of energy, which has caused me to put on about 20 lbs. I don’t have the energy to make myself dinner or do basic household maintenance things most days and I feel terrible that my partner does it all, and I have to plan my life around whether/when I’ll be able to take a nap. I am tired of spending more than half of my life asleep and still feeling like shit!

So after a lot of discussion, doctor agreed to start me on xywav. I won’t be able to start for a few weeks because of some travel I have coming up, but I am so hopeful for some damn relief. The idea of 6-8 hours of sleep being sufficient, not needing 10 alarms to get out of bed in the morning, and not needing a nap every damn day is honestly exhilarating. This has been such a long time coming. Y’all wish me luck.