r/Narcolepsy

I fall asleep everywhere, In the matter of minutes. It’s so annoying sometimes, I’ve fallen asleep on tables, at school. Everywhere !

I’ve done a lot of research and I’m 90% sure I have narcolepsy - disclaimer I’m chronically ill already - my doctors recommended I get a sleep study done.

I refused because if I do have narcolepsy I won’t be able to become a teacher, which has been my dream job since I was 4.

As if you have narcolepsy you can’t be trusted to watch children without falling asleep.

I need some advice.

I thought maybe if I get a therapist they can help me navigate life a bit better and give me some pointers on how to deal with some things and help me manage a bit better!

According to this therapist , I am my own problem because I make the choice to be tired and focus on being tired.

That I am making decisions based on feeling! That I’m too focused on the fact that I have narcolepsy. That I just need to stop focusing on how tired I am, because when the body needs rest, it will rest.

Also she added, there are loads of people who only get 3 to 4 hours of sleep a night and the are perfectly healthy and fine, they push through it.

Apparently there’s no therapist or drug that is going to help my depression because I am making the choice to continue to be depressed, those were the closing remarks made by the therapist to me.

I had my MSLT done at the beginning of the month & got my results back (didn’t enter REM but had 7.2 sleep latency = hypersomnia). Before this I was on Clomipramine, and would lose muscle control when I yawned/ laughed. I stopped taking Clomipramine and it went away for a bit, but then after my MSLT it came back full force (fully folding at the hip bc of laughter). They did the genetic test for Narcolepsy (HLA DQ for narcolepsy), and I just got my results back as negative. I’m so confused 😭.

I have had my fair share of doctors not believing anything I say or blaming it on anxiety, and I’m so worried that because now im losing muscle control but it’s NOT narcolepsy, I’m going to have to fight again to figure it out. If I wasnt starting college this fall I wouldn’t be nearly as stressed about this. I already have a 504 so I can rope in some accommodations for the sleep stuff with that. And I don’t have any energy to keep advocating that something is wrong with me if no doctors will listen. Idk if any of you have had similar experiences and how you went about them? I don’t know what to do, I’m so done

I have a follow up with my doctor at the end of the month so there is a medical process going on for the hypersomnia bit, I was just really banking on having a positive test and having all my diagnostic problems with this solved.

* NOT ASKING FOR A DIAGNOSIS just so so confused & tired

I have narcolepsy type 2. I’m currently on Wakix, Sunosi, and started Xywav a couple months ago (still on the lowest dose of that). My fatigue and sleep attacks are improving. However, my brain function is worsening. I have derealization which i’m is common with narcolepsy; it’s been constant (like 24/7, not in episodes) for YEARS now. It’s gotten worse as my narcolepsy has progressed. The derealization and narcolepsy seem to feed off of each other and make everyday life hard. My memory is horrible, I can’t keep up in conversations, I regularly mix up dreams with reality (ie I think a text conversation really happened when it was only a vivid narcolepsy dream), and NOTHING feels real.

At first, it was just funny or quirky. But now it’s getting really serious. I had to leave a job back in December because I couldn’t keep up. I moved back to my home town so I could work with my doctors. I got a new job, and totally misunderstood my onboarding instructions that were sent to me via email. Today was supposed to be my first day, but I thought it was tomorrow. Woke up to a phone call from my boss asking where I was… I think I had a couple dreams about receiving emails with a different date on them, which led to the confusion.

A year ago, it was nowhere near this bad. I used to be great at memorizing information quickly and I was a fast learner, but now anymore. Every year that goes by, I can feel my brain deteriorate. I’m so scared for the future. Idk how I’m ever supposed to hold a job or have a proper future. Any words of encouragement or advice? Cause I’m feeling really low

Each day I get several overwhelming urges to nap but I never do, as when I was younger my parents discouraged/forbid me to nap so I associate it with bad vibe. I almost always get sleep paralysis whenever I take naps, which I don't like!

I have to use will power to not nap and I have bad anxiety which keeps me awake also. Sometimes I feel like I rely on my anxiety to remain awake. However my understanding is that most people with narcolepsy don’t HAVE willpower and just fall asleep wherever they are regardless. Whats your experience?

(Yes I am scheduling a sleep study soon!!)

I've noticed that dealing with constant tiredness, brain fog, and uncertainty has made me feel less capable and dependable. While I'm trying my best, I can't help but think about the times I fail or contrast myself with others who seem to have endless energy. Those who have been through this longer, how did you keep or regain your confidence? What helped you stop thinking that your self-worth depended on how much you got done or how much energy you had?

I’m starting lumryz soon I just started sunosi as well. I’m having lots of anxiety about the lumryz because of all the health warnings and papers I had to sign. Can anyone who’s on it explain how strong it feels for you? Or just how it feels in general? They also told me that I can skip it for the night if I want to have a drink. Does anyone have any experience with doing that? (I’m 22 lol) Thank you!

Hey everyone,

A long time ago (~10 years) I took my first psg+mslt test. Back then, I was diagnosed with IH and was treated with Modafinil + adderall. Since then I moved and changed health insurance, and my new sleep doctor recommended repeat the test.

I did it today (yesterday for the overnight psg, and today the mslt). I was instructed to stop my meds for two weeks prior the test, which was hard.

They stopped the test after the 4th nap, saying they have enough information. I am a bit confused because both on my 1st and 4th nap, they woke me up after 30 minutes instead of 20, which suggests (as far as I understand) that I fell asleep “late”. I was told that on the psg overnight I slept for 9 hours, and that I did fall asleep during the naps, but they didn’t want to tell me when and told me to wait until the meeting with the dr.

My doctor is pretty busy and it might take a while. I guess I am a bit worried the test came conclusive towards the “all good” side - since I am truly very tired and the meds help me a lot, and stopping them would mean going back to sleeping 17 hours a day which was really bad for me. From your experience, what does stopping after the 4th nap usually mean? I was told I was dreaming during some of the naps. I didn’t feel like I was sleeping in all of them but reading here I could see something you can’t trust your feelings on that.

Thanks!

I’m a wife, a mother of an almost 3 year old, I have a masters degree and currently working on my PhD in neuroscience. I prioritize my work-life balance and enjoy going out with friends when possible. This would make ANYONE tired. Therefore, my family thinks “of course you’re tired, you do so much”. They think I need more sleep (more sleep makes me more sleepy 😓) and heavily imply that my narcolepsy doesn’t really matter if what I’m doing is already tiring. Idk how to handle this. I almost feel gaslit. What I experience on the daily is painful in my muscles and bones. I nap so much whenever I can. And I dread my long sleep attacks so much because they interfere with me being present for my son. How do yall handle family who kind of just dismiss you?

I’m always happy to answer anyone’s questions about narcolepsy, including this one. However, out of all the questions I get, trying to explain what the sleepiness feels like is incredibly challenging to describe. Anyone out there a pro when they’re asked this and has a good response?

I had a very long day yesterday; the kind of day that even someone without a sleeping disorder would find exhausting. By night time I was yawning constantly. At that point I had the thought that despite being sleepy nearly constantly, I don’t really yawn that much. Even though yawning is associated with sleepiness, I really only yawn when I’m tired in a fatigued way.

So do the rest of you yawn throughout your day, or are you just zombie dead tired but no yawning?

Even though I take medicine, I still crash badly every afternoon and can't think straight for hours. No matter how busy I was earlier in the day, I can't seem to keep my mind on the task at hand, stay motivated, or think straight. I've tried pushing through, changing how much sleep I get, and moving around my jobs, but the afternoons are still hard for me. How did people who live with narcolepsy change their daily lives to deal with these falls? What changes did you make that actually helped you work better instead of fighting your body all the time?

I have tried everything to wake up on the morning—both multiple alarm times and multiple alarm types. I’ve tried rumble alarms, flashing alarms, sound alarms, nature alarms, sunrise alarms, and human alarms. I’ve tried getting up the minute you hear the alarm, I’ve tried setting them at odd times, I’ve tried setting my clock earlier to trick my brain, and I’ve tried placing my alarm far from my bed…

nothing works.

And this is with falling asleep at the earliest or latest hour. Either way, im so miserable in the morning and chronically in a stressful rush. Im missing so much stuff in life and the consequences are starting to mount on each other. I pack my afternoons and evenings bc I have to avoid mornings like the plague unless I want to be eternally judged and berated for not being able to wake up.

please… something… anything!

Its hard enough not being able to stay awake, but not being able to wake up in the mornings is ruining my credibility and poisoning my respectability and reputation😭

Hi all,

Those of you on >9g / night of Xywav - did insurance give you a hard time getting it approved? My doctor increased my dose but now I’m on bridge shipments until it gets approved by insurance. I would’ve thought a quantity change is not a big deal …

I’m curious as to how other people get around. How do you manage to stay awake behind the wheel? I know this condition is not easy to deal with but how do you know when it’s coming to prevent yourself from getting into a bad accident?

My physician suggested not taking my meds on the weekends. I quickly learned that wasn’t doable so decided to just try to not take them on sundays when I’m not doing much. I sleep ALL DAY. I’m talking only wake up to use the bathroom. I’m utterly useless and don’t feel taking the day off is helping with tolerance at all. It barely works to begin with but I’ll take a couple naps a day over sleeping all day. Does anyone actually feel like it’s helping or more beneficial to take them continuously? It’s super depressing essentially losing an entire day I’m actually off work each week.

I’ve been taking either lisdexamfetamine or dexamfetamine for probably around three years now to tackle both my Narcolepsy and ADHD, it certainly helps with my daytime sleepiness and provides at least some marginal level of assistance with my executive functions on the ADHD side of things.

However my cataplexy is still untreated. This is because when I heard that they would want me to take antidepressants I was very much put off by the idea.

It’s taken me a long time but I have been coming around to the idea as time goes on.

Until I stumbled upon an article called something like "Medications that should never be combined with Vyvanse" and one of the drugs it listed was literally just "Antidepressants" as in like all of them, full stop.

It said that it can cause something called Serotonin Syndrome, which has just completely put me off the idea again. I was just wondering if anyone who knew more about this in a practical sense could shed some light on it at all?

basically i was hypomanic for weeks, and it was getting real bad. but obviously i had no clue. i just thought i was super passionate about my new projects and newfound plan to go back to grad school suddenly! and thought all the insomnia was because im narcoleptic, obviously

well i started Xyrem last saturday night and let me tell you.

it was night and day. within the week i was back at baseline and looking back at the last few weeks like, "what the fuck was that?"

i'd heard that springtime can trigger hypo/mania, so i looked into it and made an emergency appointment with my psychiatrist.

lo and behold! i have bipolar 2!

how are we treating it? the med i was already on for depression and XYREM! apparently that's how crucial sleep is for stability in mood disorders. so she just wants me to keep at it and report back in next month.

thanks, xyrem. probably saved my life in more ways than one