Hi everyone! I was diagnosed with Narcolepsy post high dose flu shot and Covid in 2020. TL;DR: how do you deal with loss of friendships and people not believing you?

I had been on xyrem but went off of it due to it increasing my anxiety and depression, but I was able to work and be awake and think clearly again.

In October I found out I was pregnant, and have had to be off all meds for narcolepsy since then…and for awhile I was okay/seemed to not have narcolepsy symptoms…but then as time went on I was too exhausted to do more than take my kids to school, cook food, and sleep. I even had to stop working part time due to brain fog.

Now in my third trimester, after getting Covid again my narcolepsy symptoms are back. I’ve lost so many friends because they cannot believe I need to sleep as much as I do and cannot drive very far. Plus my I feel like my intelligence is gone-maybe due ti lack of sleep.

Prior to narcolepsy diagnosis, I was an emotional mess and basically going crazy from lack of sleep so that didn’t help me maintain any friendships.

I guess I’m just venting and asking how do you all maintain friendship/ relationships?

Narcolepsy plus other autoimmune issues (MCTD/Lupus and suspected immune system deficiency) I deal with has been incredibly isolating and lonely.

I did not cross the threshold for a diagnosis, though I was close and obviously something is wrong. Has anyone had success getting narcolepsy medication without a diagnosis? And for those of you on stimulants is there a different simulate besides methylphenidate? I was on it for ADHD and it made me feel sick. So I gave up. Plus not sure that’s what I had.

I have type 2 narcolepsy and am not on my usual meds (modafinil) due to pregnancy at the moment. The last couple months i have noticed that i am loosing my grip way more frequently meaning: i am holding a random object and it just slips out of my hands. Luckily it was mostly things that didn’t break but im starting to get really annoyed with myself that i cannot control my grip properly at the moment and i have no clue why this is or if its even N related?

My only other experience with muscle weakness is in the morning or evening where i simply cannot move my body, even though i am trying…

Kinda sad that when I laugh now I don’t genuinely feel humored. I feel like it’s just a bodily conditioned response. It’s just oh my body is laughing now. Like it’s just nothing. Same with other emotions too. I don’t get joy a lot so I dunno about that but anger or sadness is very very fleeting and I don’t get my body reactions to those things which usually helped me be able to regulate myself. Truly my first line of defense was feeling my body and being able to recognize oh that made me angry or sad or whatever it is. I mean obviously I should work on other ways to identify it but dang it’s rough. Am currently a volcano of emotions I can’t touch or feel or anything. No reaction but I know it’s there too. Only know it’s there because I finally got to such a point I was irritable and I’m generally not an irritable person but I could feel very lightly that there was a crap pile in the back of unfelt and not dealt with messes.

Overall ssri’s numbing kinda sucks. I mean I’m glad I don’t nearly bust my face from laughing or pass out from feeling grief but still 😅

Also I’m on Effexor ER 🐝

I’m curious what everyone’s cataplexy looks like.. my family member has severe textbook cataplexy and I believe I have it too but it presents so much differently. My doctor says because I don’t fall down when laughing, I don’t have cataplexy… but I disagree.

When I laugh hard (which is not often) my legs get weak and knees start to buckle but don’t make me totally collapse to the ground. My (possible) cataplexy mainly presents when I’m upset, or stressed out.. It mostly affects my upper body, I can feel my arms and hands losing muscle tone and getting weak, causing me to drop things and just feel like jello. I have had one situation that I KNOW was cataplexy for sure, I lost complete control of any muscle movement in one of my legs when I was under immense stress, it was as if it fell asleep and wouldn’t wake up for about 2 minutes, the other leg was weak but with it and the counter I was leaning on I was able to stay upright.

At the onset of a sleep attack, I feel what can only be described as loss of muscle tone in my chest and it seems harder to take deep breaths (almost like it takes more effort). My neck will get weak and my head will feel like a boulder that I’m trying to balance. My eyes will be droopy. My speech will start to slur, and I also get the symptoms mentioned in the paragraph above. I’ve been told & read that cataplexy can only be due to high emotion so I believe these things are just from narcolepsy but I’m really not positive.

If you’ve read this far I appreciate it so very much, I didn’t mean to ramble but really struggling with this and deciding what it’s related to whether just narcolepsy or possibly cataplexy as well.

I read a good amount of people on here have found xyrem or another sodium oxybate really helpful, but when I searched it up the price of it is insane.

What is your experience with getting it covered by an insurance and what was the total out of pocket? I know it would be different based on insurance and insurance coverage. I just want to get a general idea before I bring it up to my sleep specialist. incase I just can't afford it even with insurance.

Curious is any of you have found relief with either medical cannabis or CBD. I was just looking at the “sleep” drops from 1906.

I’ve tried some other CBD oils in the past to no avail, and I’m in MS ~ we have medical cannabis here however neither narcolepsy/insomnia/sleep disorders will qualify. I have some pretty stellar insomnia that not even Xywav helps with anymore.

Hey all,

I was put on Modafinil 2 weeks ago for my EDS and the first few days were wonderful. I was able to stay awake all day without any naps. After that I started to feel my anxiety start creeping back in which I had in a good, not great spot. It has slowly kept building as I have decreased the dosage.

I want to switch to Sunosi which I have already been prescribed to see if that works any better but my doctor hasn’t gotten back to me with what he advises. I don’t know how many more days of the Modafinil I can take.

Has anyone ever made the change from Modafinil to Sunosi? Were you able to start immediately after stopping the Modafinil?

I think I’m going to just switch to the Sunosi and test my luck tomorrow unless there is a reason I need to wait a few days.

Hi everyone! I’m new to this page and am trying to get more insight on this topic.

My symptoms started in 8th grade when I was falling asleep in class. I was diagnosed with ADD and put on stimulants. I have been on stimulants for about 15 years now, and regardless of how much I take, my tolerance remains very high. I got off of adderall a few years ago when I transitioned over to Phentermine (weight loss stimulant), and just recently got back on Adderall. My tolerance is already so high. I will take upwards of 60 IR a day, average about 40. Additionally, I run on about two energy drinks a day (400mg+ caffeine), sometimes up to 3 or 4. I am ALWAYS tired. I never nap because I am always on some sort of stimulant, but I am always exhausted. On the rare occasion when I do not take any stimulants or intake any caffeine, I will fall asleep very easily. I fall asleep watching TV, movies. I can sleep for 8 + hours and still not feel well rested. I genuinely don’t know what it’s like to feel rested, as I cannot remember a day I’ve ever felt that way! I sometimes wake up to my alarm and jump out of bed in the morning, but I think that’s because I’m a high performer and just like to get my things done. I recently underwent a sleep study after my boyfriend told me I’m snoring a lot, and it was normal aside from the doctor telling me I fell asleep in 1 minute! He also said my brain waves looked very “clean” considering I take Adderall, Wellbutrin, and Zoloft. He mentioned possibly testing for narcolepsy in the future if I can get off the Adderall and Wellbutrin for a month or so. I don’t think the Wellbutrin has been helping me, so I’m ok with getting off that one. But I can’t imagine not having a stimulant for that long! I genuinely don’t know how I would function.

Has anyone else been in this predicament? I’d appreciate all insights! Thank you!!🙏🏼

Hey everyone! So I have a question, does anyone else notice they get very cold after experiencing cataplexy? I’ve noticed that lately that when I’m experiencing any kind of strong emotion I’ll get mild cataplexy (thank goodness for Xyrem!) and then for hours afterwards I am freezing cold. I talking shivering that doesn’t get better no matter what temperature it is, or how many blankets/layers I put on.

I also get extremely tired and feel like I need to sleep. Xyrem has made it easier to fight the sleepiness, but I’m more curious about the getting cold part: does this happen to anyone else?

Hi! I’ve been on adderall for a few months and my doctor just prescribed mydayis to take in the AM and a lower dose of adderall for the afternoon. Bc I always forget to take my adderall and he thinks this could help since I only have to take Mydayis once. Has anyone tried the generic? How does it compare to adderall IR generic? Thanks in advance!

My (25nb) bf (24m) has narcolepsy and I wanna get better to support him and understand more. It has taken a toll on our relationship but we are trying to get past it. The most it has affected is when we do plans and dates it seems to hit him right we when do that and I do get some what upset. But I wanna be better and learn what I can do to help. He does wanna get medicated if that’s a thing for him not to fall asleep. Any advice would be greatly appreciated. And again I am trying my best to be better and less upset when it does hit him.

Hello everyone,

I'm curious to learn about your journeys to getting diagnosed with narcolepsy. What were the signs or incidents that finally prompted you to seek a diagnosis? Looking back, are there any experiences or symptoms that you now recognize as early indicators of narcolepsy?

Additionally, I'm interested in hearing about how your life has changed since receiving your diagnosis. How long did it take to find the right diagnosis, and did you encounter any misdiagnoses along the way?

I appreciate you sharing your stories, as it helps build understanding and support within our community.

Thank you!

I have narcolepsy type 2 w/o catalepsy I am just starting my job search. I am looking for something low hours like 4-6 a day around the same time each day (nothing super early or late) and something where I am constantly talking or being on my feet. so I don't think my narcolepsy will effect my ability to work other than some bouts of sleepiness I can shrug off as bad sleep the night before (often the case anyway). I can drive as long as I am not too tired. Should I disclose my narcolepsy even if I don't expect it to impact my work?

I just finished my 4th nap of my MSLT and I don’t think the technician was supposed to tell me this, but she says she didn’t detect any sleep in 2 of the naps. So I have to stay for the 5th. But I had full-body sleep paralysis the entire time in all of them, and I remember dreaming in 2 of them and dream-like thoughts in the other two. I also have cataplexy.

I know I shouldn’t be upset cause the doctor still has to read the results, but how does that even happen? Ugh, I’m still so sleepy after all these naps and sleeping all night :(

I’m headed back to school this fall to get an MBA and received my diagnosis (N1 with severe cataplexy) roughly 3 years after graduating undergrad. Was curious if anyone is aware of scholarships outside of the basic google search I should look into?

Also I was able to navigate explaining the disease to my current employer, but I’d love to hear others experience when explaining it in the school setting and to a professor…. I can just imagine dosing off during a lecture lol

Hi fellow sleepyheads,

Well, the stars have aligned in my favor I guess and I was calling around for a sleep neurologist. Lo’ and behold someone in-network has availability tomorrow so I’m biting the bullet.

My psychiatrist has been working with me to treat depression, anxiety, and suspect narcolepsy (excessive daytime sleepiness) but since quitting nicotine my symptoms have rapidly started changing.

The last time I saw a sleep specialist I felt so invalidated that now I have imposter syndrome. He just shrugged everything off as “meh everyone is tired” which excuse the F me I’m fine if we disprove narcolepsy but how about validate my very real symptoms before telling me I’m wrong? I remember literally crying in his office.

So, I am years into treatment and my psyche and I know I need to get a Sleep Latency Test done. My imposter syndrome is INTENSE especially because a recent attack of what I believe was Cataplexy was dismissed by yet another doctor because I was “awake” (but they were an ER doctor and took “seizure” literally when I was calling it a narcoleptic seizure/cataplexy.

For those of you with confirmed cataplexy, I was hoping for input to see if this sounds like a mild version of what you have.

• Sudden weakness of limbs when overwhelmed (usually when I’m stressed in public, I feel like I can’t walk, lose strength).

• “Possessed” eyes - so my partner actually pointed this out to me. The first time he saw me falling asleep unexpectantly he said he wasn’t sure if I was having a seizure or possessed because of how my eyes were moving. If he tried to talk to me my speech was slurred, I usually have some cognition of my surroundings (sometimes mixed with dream-like experiences that mesh what’s actually happening with a dream). Sometimes I can recover after a minute and sometimes I go to sleep.

• Rapid eye movement when awake - accompanied with sudden drowsiness, feeling weak. I’ve genuinely tested this by forcing myself to try to write when this is happening just to prove I wasn’t asleep.

Anyways, it’s not exhaustive but these are the things that stick out to me. They became particularly apparent, like I mentioned, when I stopped vaping. My psyche has me on Modafinil (which gets me to like 80% awareness), and started fluoxetine both for my anxiety and because it inhibits REM and while I still nap a lot and dream a lot, I don’t feel I’ve had another cataplexy event (unless I was full on laying down watching TV, but that could be normal fighting-sleep).

Also - No I’m not asking for a diagnosis. I’ve mentioned several times that I have a psychiatrist who has been treating my symptoms, and I consult with a specialist tomorrow. I just don’t want to walk in and panic about talking about this and even if it’s not cataplexy I want to see if this does SOUND like cataplexy.

I've been experiencing this debilitating crash every day for months now. I've described it to my neurologist a lot of times about how it feels like my face is melting and I'm being burnt alive. She was really surprised because medication crashes shouldn't be that severe. I've tried everything from taking lower/higher dosages, different times of the day, with/without food, etc. I've tried Adderall, Vyvanse, and am now on Dexedrine.

Recently I've been piecing together though that I think the problem is Armodafinil plus these amphetamines. My crash always happens when the amphetamines should be peaking. When I'm taking Vyvanse the crash is at the 5 hour mark. When I'm taking Dexedrine it's at the 2 hour mark. Yet I can still feel them keeping me stimulated. I feel the need to lie down and sleep but either cannot sleep or not for very long. This entire situation has driven me absolutely mad but I think I may have figured it out.

Does anyone else take Modafinil/Armodafinil + Amphetamines? What's your experience?

Hey everyone, I just called to get an appointment with a narcolepsy specialist and expected to wait like 6+ months but it sounded like they had a cancellation or something, and my appointment is on Wednesday. I’m super excited but have a very short amount of time to prepare!

I know I won’t think of everything that I want to ask between now and then, so I thought some crowd sourcing might spark some questions that I know I have. I’ve been diagnosed for just over a year and have tried all daytime medications, and have landed on adderall and just started wakix last week. I don’t feel like my EDS is very controlled, and I’m not sleeping well at night. I’m also planning to start a family as soon as this is more controlled, but have concerns about meds and pregnancy. Also when my sleep docs gave me my diagnosis, they didn’t explain narcolepsy whatsoever, so everything I know is from my own independent research. So that’s where I’m at.

If you were preparing for an appointment like this, what are all the things you would ask? It’s a new patient appointment so it’ll last an hour. Thanks for all your thoughts 🙏🏻

I have depression (medicated and mostly under control) and N2 (diagnosed July last year after I realized my depression/sadness was better but my "symptoms" of sleepiness/fatigue etc were not).

I realized that I have immense trouble differentiating between my symptoms of both.

Am I sad/depressed? Am I tired? Am I tired because I'm sad? Am I sad because I'm tired??!

I started xywav this month and it's been giving me physical energy most days, which is amazing, but I still have crazy sleepiness and moments of intense physical exhaustion and even sadness. I guess I'm just worried xywav is making the depression worse, even though I have a lot going on Irl that could also explain the worsening the symptoms, so it's not really conclusive.

Ultimately I'm kind of hoping things are actually getting better but I can't really tell because I have so much trouble separating what's what.

If you have/had depression and narcolepsy, how do you tell your symptoms apart??

Tia ❤️‍🩹

I’ve done blood testing, had my thyroid checked, my annual physical is normal, etc.

I have been sleeping heavy like this for going on two years with zero answers. I was basically told, “you’re tests came back normal, he’s some tips on getting better with your sleep hygiene.”

What other tests can I do? My doctor is supportive, but hasn’t recommended anything past the sleep study and blood work. I’ve gotten to the point where I’ve just accepted it, and I’m started to get to where I am not worried that it’s something major, and I’m putting it off.

I received a brain MRI for anisicoria (different pupil size) that started two ish years ago, and everything there was normal as well.

I have just started listening to Theta waves while sleeping at night for a week, and I feel like my sleep quality improved quite a bit ( or maybe it just blocked out noises from outside disturbing lol). Do you guys find any audio helps you sleep at night?

I had also tried ASMR B4 but after few months it feel less effective.

It's hard to tell what's going on since I recently started Wellbutrin XL 150 mg daily too. However, I don't remember Wellbutrin causing this when I took it in the past, so I think it must be the Nuvigil. It also causes me a lot of physical anxiety symptoms, moreso than the highest doses of adderall did.

Hey all, I started Xywav officially back in 2019 and have been on it ever since. At first it worked fantastically for me, I was getting 6/8 hours of sleep a night and all was right with the world. That effectiveness started to wane, and now I’m lucky if I get 5 or even 4 hours. It’s been discussed with my doctor ~ all she’ll consider is Xywav and stimulants (I can NOT take stimulants, they make me feel worse than no stimulant at all).

This past year, I have noticed an overall worsening of my general wellbeing. I never have a day where I feel “good” even remotely. I’m exhausted, crabby because I’m exhausted, frequently ill (at least a couple times a month if not more), i still have regular cycles but they have changed drastically ~ they are very light, whereas they were more moderate before, and I now get the “period flu” the week before my cycle where I never used to even have a pinch of PMS prior.

Is there any chance Xywav has affected my hormones or something in some way?? I’m sure maybe it’s also got something to do with me not sleeping even close to normal ~ has anyone else experienced it just not really working anymore??

I know I need to consult a doctor but I’m going to have to find a new one and I plan to but I’m also curious if anyone else has experienced this.

A few months ago, I spoke with my doctor about these moments of intense drowsiness that I get. I can't keep my eyes open, I stop moving, my breathing slows, and if I give in, I fall asleep in a minute or less. It's happened in class, on the couch, and even behind the wheel.

She suggested getting a sleep study done and referred me to a sleep center, but I never went. I was too scared. Maybe in denial? My biggest fear is that I do the study, multiple if necessary, and they don't find anything.

Has anyone else dealt with this fear? Does anyone else have these symptoms? Could it be narcolespy even if it doesn't happen regularly?

I (36f) have had narcolepsy for about 15 years now.

I’ve been lucky that I had a job for ten years that allowed me to sleep as much as I wanted. It was amazing. Sadly the person I was caring for died and I lost my job.

I’m trying to find another job but most jobs require you to be there in the morning.

I would rather DIE than wake up in the morning. How do you get used to it? Will it get easier? On mornings I have to get up early I usually spend the day throwing up. I do take meds but they do not help in the mornings and it’s hard driving.

I’m scared of the future. I need a job.

Freshly 23F here. I am a 3rd grade teacher in the town over from where I live, and I have been on a daily dose of 250mg Armodafinil each morning for just over 4 years now. The dose not being strong enough has affected me for years, especially when occasionally commuting to and from my college that was 2 hours away from my home for four years, but it is becoming a much more persisting issue now that I have 29 kids under my supervision and I then have a 30 minute drive home each day (more like night.. first year teacher here lol).

I MUST caffeinate when I take my medicine in the morning and be done recaffeinating again no later than 1:00pm at the LATEST if I will make it through the last hours of the day without “sleep teaching” (as I call it). “Sleep teaching” is when I continue engaging in automatic behaviors while my brain literally halfway shuts off for a few minutes. I can still speak (typically clearly), move around the room, teach things and do work on the board accurately, but when I snap out of it again, I have no idea what just happened. It’s a total blackout when this happens. The first time, I literally ended up on the opposite side of the room when I snapped out of it and was horrified because I had no memory of getting there.

This also sometimes occurs without warning when driving home after a long day at school. Last week, I was almost home and had taken the highway. I was entering town and got in the right lane to turn and stopped at the red light. Someone honked at me, and I snapped out of it. I was to the RIGHT of the right turn lane on the shoulder of the road😭 My eyes and ears and basic reflexes work while I’m blacking out, but it’s like everything is so fuzzy and unclear when I try to immediately think back on what just happened after I snap out of it. **Please note, I do not begin driving if I do not feel fully awake. I nap at my desk after school before leaving, I stop and get a pop before beginning the drive if I feel iffy on making it home without another dose of caffeine, and I have people on standby more or less that always answer my calls if I need to talk to someone on the drive home. Sometimes, the sleepiness comes out of nowhere, though, and when I recognize it, attempting to call someone becomes more dangerous than just keeping my attention on the road and doing the best I can. I hate it. Functioning day-to-day like a normal person is impossible and feels so defeating.

I was hired in a strange situation at this school. Long story short, their teacher left in October, I began transitioning in November, and the room was mine when we returned from Christmas break. It’s strange because the school has literally zero information on me. They didn’t even know it was my birthday on my birthday, so they definitely don’t know my medical history. The year is almost over so I’m ready to tough it out the rest of the way, but it is so. Hard. To get through each day.

Does anyone know of any alternative medications I could try? Modafinil won’t cut it for me, and I began this journey on Adderall XR which ended up almost literally killing me due to developing a heart condition that caused me to pass out while driving in high school. I literally don’t know what other options I have. I’m on the highest dose of Armodafinil that is produced.

Recently diagnosed with sleep apnea and narcolepsy (n2) through a sleep study. After using the CPAP, and not seeing much of a difference, I was then able to start medication to treat the narcolepsy.

Still using the CPAP, and started modafinil (100 mg) almost 2 weeks ago. I know it’s relatively early but I feel like there’s zero improvement.

Some context: 27, female, I’m currently not working/looking for a job. The narcolepsy is severely impactful to my life and is one of the reasons I left my former job because at the time I was not diagnosed. I’m also getting other diagnoses, such as POTS, so still figuring out what all is going on with my health.

So here’s my question: I’ve seen people that feel like medication has helped them have a huge improvement, saying it’s been a 180 for them. Is this a reasonable expectation to have? I feel like I’m looking for a huge improvement but now wondering if I’m setting myself up for failure for thinking this way.
(Adding this ahead of time - I know everyone’s experience is different. Just looking for a general feel of how everyone’s medication journey went/is going.)

I have been taking my Xywav prescription for 3 weeks, and it made a huge difference in the first couple weeks, despite being sick with a bad cold. In fact, it made me realize how much I have been struggling with my symptoms and how negatively it has impacted my well-being.

However, I have noticed a change during this third week. I noticed the mild return of my daily symptoms. This has continued to be the case and the medicine seems to becoming less and less effective.

Also, since I started taking it, I find that I wake up like 3 hours after the does wide awake, which has made it difficult to get more than 6/7 hours of sleep. I wonder if I am metabolizing it quickly.

I am still on the starting dose, so I wonder if the problem is that I need to go up, but I also fear that this will continue to happen at higher doses too. It terrifies me because it seemed like I got my life back, but now its slipping away again.

What are your experiences like?

I always see articles about how sleep quality and dementia are related so it got me wondering.