Does anyone have narcolepsy, autism spectrum, or ADHD? I'm about to go crazy in this diagnostic soup. My MSLT and polysomnography tests will be performed on Thursday. Do you have any suggestions?

Twenty minutes ago I woke up half awake to bugs all over the place. Big and small, crawling on the walls and crawling on me. I don't think I ever screamed so hard in my life and it wasn't short either. I screamed at the top of my lungs for at least 15 seconds. My boyfriend was right next to me on the phone and his friend on the other line thought I was being murdered. I even gave myself a Charley horse in my calf which proceeded to make me die in pain. Why the heck do my hypnopompic hallucinations always have to be bugs?! Why not a yummy donut or something?

I took my first dose of modafinil 200 mg this morning and fell asleep again and I’m still so tired 5 hours later. Has this happened to anyone else? Does it take a couple doses for it to feel like it’s working?!

So I was off my meds for a month because of insurance issues. Currently taking Xywav 2.75 x2 a night and 40mg vyvanse in the AM.

I’ve been hearing these 4 voices in my head and they’ve always been there. But now they’re getting really loud. Twice since I’ve gotten back on my meds I have these like idk “panic attacks” because the voices get too loud and then they sit on my bed and watch me. They say my name over and over (I hate repetition) or the fourth says like mean stuff insults I never even knew existed or tells me to say things like a little devil on my shoulder. Both cases happened when I was getting rdy for bed. I’ve brought the hallucinations and voices to my doctors attention but he keeps saying oh it’ll go away keep taking the meds. or it’s because u were off for a while.

Any advice ? Should I get a second opinion from a neurologist, i currently see a pulmonologist.

The medication work well for me and ive tried everything else already But I dont like this stuff I feel like im going nuts

Please help :(

Hello all. Firstly, I hope all of you are doing amazing. Feeling pretty flat today myself. Narcolepsy is so fn bigger than the ten letters it takes to make the word. Bipolar follows the same lead. As far as my limited research tells me, the comorbidity of the two is statistically rare. I once had a group of friends that I hung with that did a little RPG. I would joke with them that my superpowers never manifested. Seriously for the amount of demerits I took, where did my credits go?? Next, treating said disorders. Well, before I get into that, have we noticed a lack of a "Bipolar Narcoleptic" community? Back to treating the disorders. So many of the antidepressants, and/or antipsychotics have impact on wakefulness, or alertness. I have better days, where the different exercises in mindfulness really help. I also have days where the only thing I feel mindful of, is the fact that antidepressants also shave the top off of my emotional spectrum. Alright, rant concluded.

Not diagnosed yet.

I have an accommodation on my working from home days where I get an hour long break instead of a half an hour long break and usually in this time I take a 20-30 minute long nap and I wake up feeling pretty refreshed. By the time my break rolls around I’m usually tired, eye lids drooping and in a bit of a bad mood.

However, today my boyfriend and my housemate decided to have a really loud conversation in the kitchen including erratically making random noises and I kept waking.

So now I haven’t slept and I’m wondering if it could still be narcolepsy? Surely I would just sleep regardless if it was?

Also; with regards to ‘types’ of sleep, does anyone get sleep that feels like a trance-like state, or just being really deep in thought? I’ve been thinking about micro-sleep attacks and seeing if that’s something that fits my experiences, and I do frequently find myself completely lost ‘somewhere’, but I’ve always assumed it was just me thinking.

Just curious if you guys experience your EDS / Sleep attacks daily, or if there are some good days and not-so-good days, even with treatment.

Mine are everyday at the same times if the day.

I am starting xyrem soon and I have a few questions for current users. Any advice would be great

I tested for mild sleep apnea last year, my score was a 6.7. I hadn't previously had it, but I did gain about 40+ lbs since the last testing. I went through the cpap process, made me way worse with added synptoms...anyway, both my sleep specialists that know this have not been insistent on me using one, at all. Current doctor briefly mentioned getting fitted for a mouth piece if I was interested at initial visit and hasn't said a word since. Does anyone have a similar situation as me? And what did you do? Should I go through the extra huge hassel of acquiring a mouthpiece before starting Xyrem just to be safe?

Another question...what kinds of medications did you guys have to either stop or take way early in the day or change from extended release to instant? I've looked at all the "serious" drug interactions with Xyrem and im on 3 of those meds...but there's also alot of meds I'm on that can cause "serious" interactions and my doctors are cool with it and nothing bad has ever happened. Input please and thanks!

I feel like parts of my body “fall asleep” or go numb much more often and more easily lately. Just propping my arm up on a table, my fingers/hand will lose feeling.

I’m a teacher. On Monday I had a moment that lasted a second or two where I continued teaching, but it was almost like I was in the backseat, watching things happen. Very strange. I was able to quickly pull myself back, dropped out again for a second or two, pulled myself back again, and I was fine after that.

My outward self continued speaking, not missing a beat, but it was like I was a spectator. A quick Google search led me to the term dissociation. Not sure if that’s the right thing or not, though. Need to do some more reading.

I’ve never experienced anything like that ever in my life. Diagnosed as N2. Is this something that could be related to narcolepsy and/or possibly cataplexy? I was also coming down with something at the same time. I was losing my voice, sore throat, etc. Might be allergies, or some kind of virus. Went to the doc today, though, and tested negative for influenza B, covid, and strep.

I don’t know what’s going on, but those few moments were completely new for me.

I did see my PCP today for the cold/flu symptoms, but I didn’t bring it up. Still trying to formulate my thoughts on the whole experience first. I see a separate neurologist for narcolepsy treatment.

I consider myself fully treated on Xywav, but I do take Vyvanse for my comorbid ADHD. It helps a little as a mood stabilizer but provides no wakefulness. Also on Qelbree for ADHD, which is an SNRI.

I’ve asked this same question on the ADHD sub. Just trying to cover my bases.

Anyone ever have a similar experience?

My experience is purely anecdotal and not based on any research. I just got diagnosed last week with severe sleep apnea after a PSG and N2 after an MSLT. At the moment, I’m just waiting for my cpap machine and medications to come in. I smoke marijuana recreationally during the day but the past few days I’ve been smoking at night and going to sleep high since I’m studying during the day for the MCAT. In the past, I’ve been exhausted during the day even though I sleep for 14 hours. After these past few days, I’ve noticed that I feel more awake when I go to sleep high despite only getting 5 hours of sleep. It makes it harder for me to get out of bed in the morning and I still have excessive daytime sleepiness but a lot less compared to when I don’t go to bed high. Chat GPT told me that I could be feeling more refreshed because marijuana delays REM since my results from my MSLT showed that I go into REM almost instantly after I fall asleep. Does anyone have any similar experiences?

Edit: The replies are super interesting. What I noticed is that it looks like it only reduces excessive daytime sleepiness for some people. However, I’m surprised based on the replies that a common side effect is that it reduces the amount of realistic dreams or maybe it prevents them from being remembered. Now that yall are mentioning it, I realized I’ve been having less realistic dreams too. Maybe if THC doesn’t help someone’s excessive daytime sleepiness, it can at least suppress vivid dreams? 🤔

I followed project sleep after the post about Snow White but can’t find many more creators who discuss sleeping disorders. Was wondering if anyone followed any creators or platforms that discuss narcolepsy that you’d recommend.

Getting out of bed in the morning has always been the absolute most challenging part about narcolepsy for me. I have so many alarms (truly, if I only have 1, I turn it off immediately). Every time I get woken up, it’s like a strong magnet is pulling me back down to bed. Then a huge wave of relief when I close my eyes again because it’s all I want in that moment.

I’m currently on Lumryz 9 every night then a stimulant during the day (need to switch stimulants though, it doesn’t do much). The first few months on lumryz were incredible, I was naturally waking up and feeling instantly awake. It feels like I’m back to my baseline now though.

Ok so basically… I fell and hit my head on Saturday. After I had the worst headache but I just went to sleep and didn’t think much of it. Sunday I slept all day mostly but I just brushed it off as being lazy. Then Sunday night I couldn’t sleep which I attributed to oversleeping the night before. Monday, I was exhausted but I just figured it was cuz I didn’t sleep well. That night I got great sleep but Tuesday I still felt awful. I was like… uh oh maybe my modafinil isn’t working. I skipped a meeting and went to bed at 8pm that night. Yesterday I was still so so tired and I had a headache. At this point I was like oh this isn’t normal for me to feel like this while I’m taking my medication. My roommate made a joke like “oh haha fatigue is a sign of a concussion” so I went to the urgent care just in case… it was a concussion. I wonder if I would have gone to the Dr sooner if I didn’t have narcolepsy. It feels so similar to how I feel when I don’t take my medication I just figured my meds stopped working… lol oops! All is well now tho

This is mostly a vent post, but also curious if any of you have run into this issue.

I've been trying to get my Wellbutrin script refilled and Express Scripts is acting like it's going to kill me because my neurologist recently increased my Wakix dose. I've been taking Wakix for over 6 months and Wellbutrin for over 3 years. I know there can be potentially serious reactions between these two drugs, but per my doctors' instructions, I check my blood pressure and heart rate weekly to evaluate risk and everything has stayed within normal range. It's just really frustrating that a fucking pharma company wants to override the decisions that my medical team has made.

Anyone else on this combo? Have you had issues getting your prescriptions filled?

Hey guys!

So last night we had 4 tornadoes touch down in our town. My phone went off, my Alexa and Google home went off, and there were sirens. I slept through all of it. I even slept through all 3 of my normal morning alarms for work.

Thankfully the tornadoes all missed us but as my friends are sharing some photos of the damage, I’m realizing just how dangerous this is. I’m a single mom and live alone with my 10 year old.

How do you make sure you wake up when you need to?

Also what do you do for severe weather alerts in the middle of the night?

Any advice is appreciated! TYIA!

I've seen some people mention it on here before that when they experience strong constant emotions their symptoms are worse.

My dog is really sick. Honestly I think we're going to have to put her down soon. She kept me going when I was severely depressed and wanted to die. She's been there as I've healed and she's been a wonderful friend to my young daughters as well. I really don't want her to go but I also don't want her to be in pain.

I feel like my sleep attacks and general day time sleepiness have increased. Or maybe I'm just depressed? Or both? Idfk. I just know I have shit I need to do but I've been constantly battling exhaustion and sleep attacks. I'm a mom, I need to take my oldest to preschool, have the energy to play, make food, etc. I can't just be sad and constantly tired or asleep next to my dog. I understand being sad will make me more tired but it's been constant.

Does anyone treat narcolepsy with L carnitine? (Not L citrulline) my doctor said there has been success in Brazil with treating narcolepsy with L carnitine instead of Ritalin. If so, how much? When do you take it? And advice?

In a weird situation. My doctor (pulmonologist) says that the neurologist doctor doesn’t want to test me for narcolepsy until I show that 3 stimulants don’t work for me. 2 of them conflict with my bi-polar and the 3rd conflicts with my IUD. So they said I need my psychiatrist to say I can take them. Or my OBGYN to switch me off of my IUD…. All just to be TESTED!?!? They said my bi-polar medicine wouldn’t pair with the test anyways and that I’d need to stop taking them for when I do get it. But I feel like that’s not safe for me.

Is this normal?? Do I need to see someone else? Is there a way I can fast-track a spinal tap test since my other disorders affect everything else so much?

Does anyone have a cute and safe way of storing their medicine? I have cats so I need to make sure the medicine isn't accessible to them. My first night of xywav is tonight!

Hey everyone, after a long battle with constant exhaustion I have finally been diagnosed with narcolepsy type 2. I have tried modofinal and sunosi, with no luck. So now we are moving to wakix. After hearing it is only brand name and only available from specialty pharmacy’s, I am terrified of what it is going to cost. Wakix support has assured me it’s not going to be but I also know how healthcare and insurance work. If you’ve taken wakix and don’t mind sharing what it costs you I would greatly appreciate it!

So I am on day 4 of Xyrem for N1. Very low dose 1.25g and titrating up. I don’t have an appointment until over a month into the medication but I have woken up more during the nights and felt more tired since I started taking the sodium oxybate.

I have also woken up from pain and numbness in both arms twice already and it wasn’t due to my sleeping position as I was on my back one of those times. The pain was so bad it woke me up and today it has persisted with weakness.

I am diagnosed with autonomic neuropathy and POTS so only take the Xyrem due to stimulants being awful for my other symptoms.

Has anyone else experienced this? Should I contact my doctor or wait it out?

So first off sorry if this post has been made by others but I do need some help. So I’m a junior in high school and I can’t get up in the morning at all. Me and my mom have tried nearly everything including an old fashioned alarm clock, that one shock bracelet(idk what it was called) which those things did work for about a month before my brain leaned to tune out the sensation and sound, and waking up an hour early to take my meds. Nothing is really working for me anymore and my poor mother is ready to skin me alive because the school is breathing down her neck. I have a few accommodations with my school(I don’t have my 504 set up yet due to me not making it to school) which are I have first and last hour off and for a bit that was working but now it’s not. I do my best to go to sleep regularly at 10pm every night(I take generic sleep meds like equate and my phone charges across the room face down) but according to my watch I don’t fall asleep until 1 am. I haven’t been to school all week because by the time I wake up it’s half way through my third hour and I’ll fall asleep in my living room or car before I even make it to school. So I’m kinda stuck.

Hey all, I(F20) wanted to know if anybody who was diagnosed with narcolepsy had believed they were dealing with a circadian rhythm disorder, or vice versa? Reposting on multiple threads to get more opinions 😅

Currently in the formal diagnosis process. I haven’t got my sleep studies done, but they are scheduled for May. Now I’m playing the waiting game, and of course, have been doing research on various sleeping disorders.

For some context:

I’ve always struggled to go to sleep at a reasonable hour. I’ve had vivid memories of being up late in elementary, crying because I couldn’t sleep. I would toss, turn, lay upside down, lay on the ground. Oh how I hated sitting in a dark room four hours trying to sleep.

Fast forward to middle and high school years, I absolutely struggled to get out of bed. Though, know during adolescence many teens sleep in a delayed sleep phase. So, I didn’t think much of it and believed I’d grow out of it because every other teenager loved to sleep. At this time, I was extremely hard to wake up. I would wake up, but not have full consciousness. As a result, I was always late to school. I would consistently fall asleep in class, and some days I would pretend I was feeling ill to just sleep. I would always take naps after school, resulting in me not being able to sleep until late.

Now, in my third year of college, my symptoms have persisted, and i have yet to “grow out” of my delayed sleep phase at 20 years old. With being able to choose my own schedule, I was able to let my sleep schedule exist. I got quite sick my second year. Since then, I’ve especially struggled with sleep issues.

Now for my symptoms: - Excessive Daytime Sleepiness, almost always feeling like I could take a nap. Long drives were my worst enemy. I will nap in a very random place in an uncomfortable position. - Sleep rarely felt refreshing. When it did , I needed 9-10 hrs. Even then, I would also have to have little sleep debt accrued. - Inconsistent bedtimes ranging from 3am-6:30am. - I’m always SO SLEEPY. - Simultaneously being an extremely light, yet heavy sleeper. - Sleep paralysis sometimes with taking naps; dreaming of being awake but then realizing I’m dreaming, then the cycle continues. - Grogginess/brain fog dragging far into the afternoon, gaining more energy at night. - Always having greatly vivid (and sometimes disturbing) dreams. - Sleep hygiene does not make an impact on going to sleep on an 11pm-7am schedule

I feel that I have symptoms that may definitely align with N24, DSPD, N2, or IH. I know that extreme/prolonged sleep deprivation can possibly cause similar results of narcolepsy on a sleep study. Definitely not asking for a diagnosis, but wanted to give some background for anybody who may have related.

With all that said, had anybody had the experience of being so sleep deprived from living off their circadian rhythm, that they appear to have N2? Oppositely, has anybody’s N2 symptoms appeared as a circadian rhythm disorder due to EDS and insomnia at night?

Doc thinks I have Narcolepsy type one given my presentation, symptoms, and cataplexy. MSLT said idiopathic hypersomnia. What should I do?