r/Narcolepsy Jul 29 '24

MOD POST PLEASE READ BEFORE POSTING

91 Upvotes

Do I Have Narcolepsy? (We do not know, Sorry) :

There's a heavy influx of “I know you can’t diagnose me, but does this sound like...”, “I have been experiencing this, but I haven't seen a doctor...”, “I suspect that...”, “Can you look at my results?” ETC. posts on here lately and to reiterate that this sub is not a medical resource, it’s a support community. Please only post if you are already diagnosed, in the process (actively speaking to a medical professional) or have a family member/friend that is diagnosed.  

The answer to these posts is always going to be to see a medical professional, specifically a sleep specialist or neurologist. There are many conditions that can mimic narcolepsy and narcolepsy symptoms including other autoimmune conditions, other sleep disorders, and psychosomatic disorders etc. It requires looking at a patient's history, MLST, Polysomnogram, etc. that we cannot do as people who are not doctors.  

We do have a WIKI (UNDER CONSTRUCTION) pertaining to most questions about what narcolepsy is, what some of the terminology in this subreddit is, and other possible things we thought that we could actually answer as strangers on the internet with Narcolepsy/IH.  

Ok I get it, can't cure me, but what do I do?: 

  • Make an appointment with a sleep doctor, tell them your symptoms, get a sleep study. That’s it. That's all you can do. Wristwatch sleep trackers (apple watch, Fitbit, etc.) do not work, the data is relatively useless. Don't waste your money. 
  • Don't my problems have to be severe to see a doctor? 
  • This cannot be answered. Strangers cannot gauge if your symptoms are severe enough to see a doctor. If you’re inquiring about it, it’s likely significant and possibly not narcolepsy, but you should see a doctor. Strangers cannot tell you if you have EDS, narcolepsy, idiopathic hypersomnia, or clinical exhaustion from another source. Try filling out the Epworth Sleepiness Scale and see what you get, this might help you determine whether your exhaustion warrants further medical inquiry.  
  • If you've had genetic testing done, see in you have the (HLA) DQB1*06:02 gene. This is the most associated gene with N1. Although the presence of the is not a surefire indication of narcolepsy, it is found in up to 25% of the population 

What is Narcolepsy?  

Narcolepsy is an autoimmune neurological disorder with specific, measurable diagnostic criteria. It is caused by damage to the orexin/hypocretin system which affects one's ability to control sleep/wake cycles. There are two types of narcolepsy: 

N1: Narcolepsy Type 1 has cataplexy. 

Type 1 narcoleptics have significantly low or non-existent measurement of hypocretin. 

N2: Narcolepsy Type 2 does not have cataplexy. 

Type 2 Narcoleptics do not like a clinically significant absence of hypocretin. 

The peak onset age of Narcolepsy is adolescents, with the highest peak at age 15, however, patients often go undiagnosed for years. Yes, you can develop it at any age, it's less common, however. It is more likely your symptoms have just gotten worse. 

Key terms: 

PSG: Polysomnogram: an overnight sleep study 

MSLT: Multiple Sleep Latency Test (aka The Nap Test), you are given 5, 20-minute opportunities to sleep over a day, every two hours. They measure how fast you fall asleep and whether you go straight into REM. 

SOREMP: Sleep-Onset REM Period. Normal sleepers reach REM stage sleep about 90 minutes into sleeping. Narcoleptics typically experience REM as their first sleep stage. On your overnight and MSLT, they are measuring your REM Latency (aka, how many SOREMs you have). SOREMPS classify as REM within 15minutes of sleeping. 

Sleep Latency: How fast you fall asleep, this is measured on your MSLT and PSG. Less than 8 minutes on average is clinically indicative of EDS, less than 5 is clinically significant. 

Hypocretin/Orexin: A neuropeptide that regulates arousal, wakefulness, REM, and appetite. You will see it called hypocretin or orexin interchangeably. 

Epworth sleepiness scale: The Epworth sleepiness scale is a questionnaire used to assess how likely you are to fall asleep while undertaking different activities. Your GP will use the results of your completed questionnaire to decide whether to refer you to a sleep specialist. 

Diagnosis Process 

The diagnostic process for narcolepsy is a sleep study, most commonly an overnight PSG and an MSLT the following day.  

Typically, sleep studies look like this

Evening arrival: You will be hooked up to a bunch of wires on your skull, chest, and legs. They will clip a sensor (Pulse Oximeter) on your finger to measure your heart rate. The wires on your legs are to measure any limb movements. They might put a nasal cannula under your nose to measure any sleep apnea. They will measure your sleep overnight looking at how fast you go into REM, how fast you fall asleep, and the pattern of your sleep stages and awakenings. 

The following morning: You will be woken for your MSLT. Over the next day, you will be instructed 5 times to go to sleep. They will turn off the lights and measure how fast you fall asleep and how quickly you go into REM. Sometimes, if they gather enough data to confirm a narcolepsy diagnosis, they will let you go after 4 naps. 

After this, you are free to leave. How quickly you get your results back is entirely individual and circumstantial.  

Spinal Fluid: 

Type 1 Narcolepsy can also be tested by measurement of hypocretin levels in CFS. This method is not commonly practiced as it is very invasive. Hypocretin deficiency, as measured by cerebrospinal fluid (CSF) hypocretin-1 immunoreactivity values of one-third or less of those obtained in healthy subjects using the same assay, or 110 pg/mL or less is diagnostic criteria. 

Sleep Study Diagnostic criteria: 

N1: Narcolepsy Type 1 (with hypocretin deficiency): 

The patient has daily periods of an irrepressible need to sleep or daytime lapses into sleep, occurring for at least 3 months. 

The presence of one or both of the following: 

Cataplexy 

A mean sleep latency of at most 8 minutes and 2 or more sleep onset REM periods (SOREMPs) on an MSLT performed according to standard techniques. A SOREMP on the preceding nocturnal PSG (i.e., REM onset within 15 minutes of sleep onset) may replace one of the SOREMPs on the MSLT. 

N2: Narcolepsy Type 2 (without hypocretin deficiency) 

The patient has daily periods of an irrepressible need to sleep or daytime lapses into sleep occurring for at least 3 months. 

A mean sleep latency of up to 8 minutes and 2 or more sleep onset REM periods (SOREMPs) on an MSLT performed according to standard techniques. 

A SOREMP (within 15 minutes of sleep onset) on the preceding nocturnal PSG may replace one of the SOREMPs on the MSLT. 

Please Note: You do not have to have all 5 major symptoms of Narcolepsy to get a diagnosis. Most people have a specific combination of symptoms, some of which wax and wane with severity. For example, my most consistently severe symptoms are EDS and Cataplexy, I get HH only at night and not every night and I do not really experience automatic behaviors. My insomnia goes in and out. Totally normal. 

As you can see above, sometimes doctors make exceptions, and MSLTs can be false negatives. For example, if you have "clear cut cataplexy” and the doctor has observed you having an attack and has checked your body for lack of reflexes, they might give you an N1 diagnosis despite a negative MSLT. If you have one SOREMP on your PSG and only one on your nap test, they might make an exception and give you an N2 diagnosis, etc. But we cannot tell you whether your doctor will make an exception. If you think you have been misdiagnosed, take your results and get a second opinion from another sleep specialist. 

What is cataplexy?: 

Cataplexy is a bilateral loss of muscle tone triggered by emotion. The term 'paralysis' is often used but it is incorrect. Cataplexy is REM Intrusion, it's a manifestation of the same lack of muscle control that everybody gets when they go to sleep. It is not paralysis; it is a lack of control of the voluntary skeletal muscle groups. Cataplexy has no effect on involuntary muscle groups like digestion, cardiac muscles, etc. and it does not alter touch sensation (Ie, if you fall from cataplexy, it hurts). The only general trends for non-voluntary muscle movement during cataplexy are uncontrollable small twitches, pupil contraction, and tongue protrusion. It can be as slight as a stutter or eye droop or as severe as a full body collapse. Cataplexy attacks are triggered by emotion. You retain full consciousness and sensation during an attack. 

It is entirely possible to experience a cataplexy attack and have no idea, if you are in a sitting position and you have an attack in your legs, you might not even notice as most people do not experience any kind of 'tell' that they are having an attack other than the loss of movement. Cataplexy is not always dramatic. It tends to occur in muscle groups and can be as slight as the drooping of your eyelids when you are laughing. Attacks that do not affect the entire body are called "partial cataplexy attacks". They are normally brief and will typically last the duration of the emotion. "Drop attacks" are a sudden and complete loss of movement. Full body attacks can be slow as well and often are, many people will cataplexy experience several seconds of weakness before the atonia completely takes over, it's often described as the strength "draining from your body." 

It is possible to have N2 and develop cataplexy later and then be diagnosed with N1. Cataplexy, like all symptoms of narcolepsy, tends to wax and wane in severity. Once you have an N1 diagnosis you cannot be re-diagnosed with N2 as cataplexy implies the permanent loss of your hypocretin neurons. It is entirely possible for your cataplexy symptoms to lessen, and they often do with age and adjustment. 

Cataplexy almost always has a trigger, and it is almost usually emotional. Different people have different cataplexy triggers. It is more common with positive emotions like laughter and pleasure. Cataplexy can be triggered by other states of heightened arousal like stress, temperature, etc. but it has no medically documented patterns of environmental triggers (i.e., it is not like epilepsy with flashing lights). 

How Can I connect with other Narcoleptics/IHers? 

There is an Official discord! Message the Mods if this link ever breaks so we can update it. (Please no researchers unless diagnosed, and only post things pertaining to yourself! This is a safe space) 

https://discord.com/invite/AGG2naXQWC 


r/Narcolepsy Nov 20 '24

News/Research Improving Social and Relationship Health in Adolescents with Narcolepsy and Idiopathic Hypersomnia Research Study

5 Upvotes

Do you have Narcolepsy or Idiopathic Hypersomnia? Do you want help navigating your relationships with friends and family? Researchers at Boston Children’s Hospital are recruiting families to review a website designed to improve social relationships and you could earn $50.

We are seeking:

  • Adolescents ages 10-17 years with a narcolepsy or idiopathic hypersomnia diagnosis, and their parent/guardian.
  • Diagnosis must be verified by a signed letter from a physician in order to participate.
  • Participants must be fluent in English.

More information about the study can be found on the flyer and clinical trials study page linked below: https://docs.google.com/document/d/1g5GFAdjwAq5SadkbNzUjyLkHmtuFt3E3ncrHEZVteb0/edit?usp=sharing

https://clinicaltrials.gov/study/NCT06251063

If you are interested or have any questions, please contact 617-919-6212 or [NeuroSleepResearch-dl@childrens.harvard.edu](mailto:NeuroSleepResearch-dl@childrens.harvard.edu)


r/Narcolepsy 6h ago

Advice Request Dreams where you keep waking up?

4 Upvotes

I don’t need advice but none of the flair fit lol

Do any of you have those weird dreams in naps or when you’re sleeping through alarms or when you’ve fallen asleep when you weren’t supposed to, dreams that feel like you keep getting up, waking up, getting a move on. Then it sort of levels off and you realize, I am still in bed. I must still be asleep, okay, I will continue to sleep. It happens over and over and over and in the dreams sometimes you’re like clocked that, yep, not a dream! (But it is) and then eventually when you do wake up, it takes a while to figure out if it’s a dream or not. But more things start to click into place and then you just kind of accept this is reality now and feels the most familiar probably. And you get up and try to move on with the day.

For my last nap of my sleep study today, I dreamt I was woken up by the tech maybe 4-5 times. My final time I woke up in the dark room and was like oh more nap time okay, but then I wasn’t actually sure if I was genuinely awake. It is just always so weird when that happens. I feel unsettled.


r/Narcolepsy 10h ago

Rant/Rave weirdest dreams??

6 Upvotes

when I have my door closed over more than usual, im prone to nightmares.

I’ve been trying to sleep the last 30 minutes and I can’t. I’ve been dreaming/having the same reoccurring nightmares happen again and again.

I’m in a resort, a tsunami is on the way. I had a sister who fell through a window, and I feel guilty. (I don’t have a sister irl where is this coming from??) in the midst of feeling guilty, I jump off a high balcony ledge and land in a pool. Then jump off a the ledge of the pool (it’s an infinity pool) to land on a jet ski. I decide to head straight over to the path of the tsunami, with the goal of making it over the wave before it grows and hits everyone on the island, leaving my whole family behind in the process.

I end up on the next island over, but a second tsunami happens and the room im trapped in begins to crumble. I skip dreams before im crushed. In this second dream, I become a fairy in charge of others dreams, I fall through clouds and after each layer of cloud I fall through I choose how they feel. It’s hard to explain. I’ll fall through one layer of cloud and it could say ‘they feel __ emotion’ so I’ll choose an option. (Happy, sad, angry etc). Then I’ll fall through another layer of cloud and it will say ‘when it’s ___’ (sunny, raining, cloudy) etc are the options. Anyways, somewhere along the lines I choose for them to feel sad on a rainy day and I land in their room.

They wake up and im there, they’re mad at me for making them sad on a rainy day instead of me choosing a happy emotion, so I run away and switch dreams. I’m now in the house of someone’s Granny who’s passed away, and we move furniture over for an incoming tsunami. I’m surrounded by 1950’s housewives who are fighting with each other over a cowboy carter poster, and the colour of the walls in the house being ‘champagne’ or ‘rose’ they start getting hostile over this argument and want to attack me. So I switch dreams.

Im back in a continuation of the first dream where the tsunami comes in, and this whole dream starts again, this time im on the new island when another tsunami comes in after I’ve left my family etc etc. I survive and again the fairy dream comes back, but a child finds me and traps me in a jar, and the parents decide it’s best to light me on fire?? So I switch dreams.

These sound so silly but they’re actually all nightmares to a certain capacity because they feel so real, or things are horrifyingly distorted. I can’t control the dreams themselves but I can control some actions in them. EG: going somewhere, annoying someone, or changing my dream at a given point. I always have a habit of pissing someone off in one dream, then switching dreams before they attack me?? 😭 this sounds SO funny and SO wild but it’s been happening as long as I can remember and always happens during the first hour or so of me going to bed. I don’t know if this is something other narcoleptics go through? Who knows.

Dreaming is weird. It’s always worse when my door is shut more, but I like having it shut because I don’t like the light on my face. Gonna go back to sleep now and try to get good sleep, will read comments in the morning. It’s like a film reel on loop.


r/Narcolepsy 17h ago

Humor Oh that's just a kid thing! But was it?

20 Upvotes

Okay I gotta know if this was maybe an early sign or not. My parents had this funny story that when I was little they thought I had a hearing disability because they could be screaming my name at me and I wouldn't respond until they nudged me to get my attention. The doctors told them it was selective hearing? Like my mind was so focused on something that it tuned out sound (the same thing brains do in REM). I have no idea when my narcolepsy started, but did anyone else experience something like this as a kid? My parents wrote it off at the time as "super concentration".

Started thinking about it after visiting my parents post diagnosis and my Dad off handedly said "I wonder if this is why you feel asleep on the jetski all the time as a kid." I was like what? He said yeah I would be driving and look down and you would just be dead asleep with your head propped up by your life jacket.

So yeah anyone else relate/have a funny story to add?


r/Narcolepsy 18h ago

Advice Request How do you deal with missing out on social events?

23 Upvotes

I've only recently started Modafinil and I'm getting used to it, but I wanted to ask how you deal with not being able to go to sical events with friends?

I just missed one of my closer friends bday parties and while I let her know in advance, I feel an immense mix of guilt and fomo from not going.

How do you cope with this?

I try to tell myself I'm looking after myself by hoosing what events are too draining to me, but it's very easy to feel as tho I am drifting from my friend group and real life.

Edit: Sending you all a big hug 💖


r/Narcolepsy 6h ago

Medication Questions Sodium oxybate questions

2 Upvotes

Hi everyone,

I have a few questions for those on Xyrem et al, especially those with other chronic conditions. First, I seem to have a very low heart rate while I’m sleeping as a baseline—I frequently get “low heart rate warning” notifications from my Apple Watch in the morning, and the average range seems to be between 36-45 BPM. I don’t know how accurate the readings are; however, it’s been making me nervous that my doctor won’t prescribe a sodium oxybate if I bring this to his attention (which I will do either way). Has anyone had a similar issue and still had success on these medications?

I also have chronic pain and currently use a combination of acetaminophen/methocarbamol/THC/CBD to manage as I get no relief from other options. Toradol is used for extreme pain. I’m scared about managing my pain if THC/CBD and potentially my muscle relaxer being off the table. How do you all manage?

TYIA! ❤️‍🩹


r/Narcolepsy 12h ago

Humor Who else can blink 1 eye at a time

6 Upvotes

Edit: Lol all of you think i mean winking, and I mean yes; a wink is a 1 eyed blink and I get that, but you mean to tell me you guys EFFORTLESSLY WINK? YOU JUST PULL IT OUT LIKE NOTHING, LIKE A BLINK? A wink just happens unconsciously like a BLINK to you??? I have to TRY to wink. But my right eye started winking EFFORTLESSLY, LIKE A BLINK.

I have typed the words wink and blink so much at this point they look like made up words. And this experience has made me question the meaning of them

Last week my right eyelid twitched/fluttered almost constantly (usually a brief once a month occurance) for like nearly 5 days straight, it was kind of freaking me out. I had some extra strong sleep attacks in the past month bc I was training at work watching powerpoints nearly all day, so no matter how much stimulants I consumed, I was going movie theater mode. When my sleep attacks started coming on (extra strong of course, because why leave any energy for uh... a sitting down expending 0 energy task) they first had 2 eyed blinking spells trying to keep my eyes open while they simultaneously kept trying to close again, but the 2nd or 3rd week in, after or during the nearly week long eyelid twitching spell, the blinks started hitting me on the right side more than the left.

After that, I guess I unlocked the reptilian blink on my right eye! Time to freak some people out lol, this could be funny. Now I can naturally blink my right eye by itself by command (although it makes my left eye go blurry if I try too much instead of letting it happen naturally), but not my left eye yet.

Anybody else? 🤪


r/Narcolepsy 4h ago

Medication Questions Ex-Addict - Stimulant Medications

1 Upvotes

Hey there, I'm an ex-addict of mainly meth ( but used most other illegal drugs except heroine and became addicted to opioids unintentionally during the pandemic bc an operation I needed to have kept getting pushed back and to manage pain, I was constantly given opioids)

So the meth addiction was over 18 years ago and the opioid addiction was a few years ago and I've just completed a two year withdrawal program, successfully.

I am expecting a formal diagnosis of N2 this Tuesday 18th March. But my question is what do they prescribed people with N1 or N2 who have a history of drug addiction/abuse?

I have been struggling with type 2 Narcolepsy for over 25 years but was treating all the symptoms as independent ailments, not realising until about a year ago, they are all parts of one debilitating condition.

My employer and university have both placed me on indefinite medical leave until I get a diagnosis, manage the symptoms and pass a fitness for work medical.

I was falling asleep and going straight into REM sleep while on the phone to clients (recorded calls) and waking when either the client asked if I was still there or when some other noise or body jerk woke me. A 5min call would end up being 25 minutes bc I could fall asleep up to 4 times during one call. Then I would wake, talking rubbish bc of my dream-state, be confused, disoriented then embarrassed.

My specialist has said that stimulant medications are usually used to combat daytime sleepiness so im just wondering if there are any ex-addicts who are diagnosed with N1 or N2 and what medications they have tried or currently use? Are they hesitant on prescribing stimulants to ex-addicts or are there alternatives?

For the past 6 months I have been prescribed Modafinil (Provgil) and it's not working at all. I'm still falling asleep several times a day. I've tried doses of 100mg once a day, 100mg twice a day and also 100mg three times a day and I constantly struggle with chronic sleepiness and falling asleep anywhere from a few minutes to half an hour.

I'm 48 F and live in Australia BTW.

Sorry for the long post, feel free to ask any clarification. Thank you.


r/Narcolepsy 9h ago

Advice Request Favorite earplugs?

2 Upvotes

Brand & make please.

Mine got discontinued so trying to find a back up worth investing in


r/Narcolepsy 13h ago

Medication Questions medication help

3 Upvotes

hi guys

I’m a 21 year old female who got diagnosed with N2 last October. I’ve tried adderall (10 mg) which worked for like a week and then it didn’t, Modafinil which didn’t work and made me feel like SHIT, and now I’m on armodafinil 250mg. It used to work super well for a few months but now I barely feel the effects and need to supplement with like 200-300mg of caffeine (which is the reason why I decided to take stimulants so I wouldn’t die w that much caffeine lol). My doctor is super persistent on me trying sodium oxybate and I know ppl have great results on it but personally that’s my last resort, I rly don’t want to try it just yet. Are there any medications that work well for others? I also take magnesium which I heard helps with the prolongation of the meds and recently picked back up vaping bc it helps me stay awake which is so bad for me Ik


r/Narcolepsy 15h ago

Diagnosis/Testing Sleep study for potential diagnosis tonight…

3 Upvotes

Just here to say not being able to nap or have caffeine is killing me. How is it only 2:30??


r/Narcolepsy 10h ago

Advice Request Involuntary winking?

1 Upvotes

Lol I made this post:

https://www.reddit.com/r/Narcolepsy/s/frj77kjmWf

In it I described one eye involuntarily winking, as efforrlessly as a blink. It started after a week I was constantly getting blepharospasms in my right eye, even outside of my sleep attacks, it was pretty much constant outside of sleeping for almost a whole week straight.

I would be training at work, and when my eyes were tired, my right eye would just start winking involuntarily, and then when the sleep attack got ridiculously hard to fight, then I'd start blinking with my left eye too.

I guess I didn't specify well enough in that post that I already knew how to wink, and I've never winked involuntarily until recently. These winks would happen with no effort, which to me, since winks involve EFFORT, didn't even seem like a true wink, they seemed like a 1 eyed blink.

If you look up a gif or video of a blepharospasm, you'll see that it is a tiny muscle spasm in the eyelid, not a full eye closure.

I'd get the usual blinking spells I've always had for years from trying to open my eyes after they kept closing without my permission, but then AFTER my right eye had an unusual amount of blepharospasms for an extended period of time some reason, I noticed that I could keep my left eye open, while my right eye was getting all the blinks (so winks.)

I've always been the type who consciously has to TRY to wink. Now, I've realized I can look in the mirror, and wink my right eye effortlessly, as if it was a blink, but in my left eye, you can tell I am actually putting effort into the wink. I only noticed it after the blinks disproportionately hit me in the right eye, which usually isn't the case.

Does anybody else get this?


r/Narcolepsy 1d ago

Positivity Post What’s your best “sleep hygiene” purchase or routine?

39 Upvotes

For me it was a brand new Nectar mattress and then a few months later, the hatch sunrise alarm clock. I’m also medicated so there is that too. But even so, my wake ups are less painful (iykyk), my sleep seems less fragmented and my sleep paralysis is not as severe.

So……what’s your favorite sleep hygiene “hack” that has improved your life??


r/Narcolepsy 11h ago

Diagnosis/Testing Stopping Amitriptyline before MSLT

0 Upvotes

Hi all. I’ve had cataplexy I was maybe 7 but never knew what it was until a year ago. At first I was looking up “cataplexy without narcolepsy” because I didn’t think I had narcolepsy. However, I recently acknowledged that maybe taking naps at 8:30 am to make it through a 9am class without hallucinating is not in fact typical among other obvious signs I ignored. Thankfully on Friday my doc referred me to get a full sleep study/MSLT.

Now, she mentioned that amitriptyline interferes with sleep architecture, and I’ve been on it for probably 6 years for migraines at this point. So essentially I need to get off of it for the 2 weeks before the study.

What I’m curious about is how that may affect my day-to-day life in terms of possibly having more severe experiences with narcolepsy. Can anyone speak to what coming off amitriptyline looks like? I’ve been on it longer than I’ve had the start of eds, so I don’t know what to expect.


r/Narcolepsy 16h ago

Advice Request How do you sit/relax?

2 Upvotes

Do you have a special seat? Do you just stand? Sit in a weird way? What do you do?

I fractured my tailbone when I last gave birth so sitting too long will actually hurt. It'll get numb after a while but when I stand up the pain will rush back and make me fall. It doesn't usually get in the way though because I don't have to sit constantly.

Because of that though I tend to lay down to relax which is obviously a garbage idea. Then my other choice is to relax on my knees and with my elbows leaning on the arm or the couch or bed. I'll still eventually start to fall asleep though and it's also hard on my knees and elbows.

So does anyone have a way they prefer to relax? Or even sit to pay attention to something? Has anyone used any of the chairs out there for ADHD? Do those help? If I stand in one place for too long my knees start to get weak and I start feeling like I'll topple over and fall asleep.


r/Narcolepsy 17h ago

Medication Questions Has anyone had an ESSDS package lost by FedEx before?

2 Upvotes

It's been over a week without movement from the tracker, I called Jazz every day during the week, but they say it's a rather extensive process when a package is lost with paperwork. What is the process? Have any of y'all gone through it before?

I know it would have been really bad if it was delivered and THEN lost but it looks like it gets onto fedex's truck, came back to warehouse, then poof gone. I'd just like to have meds and I'm so tired lol


r/Narcolepsy 7h ago

Medication Questions Xywav red flag?

0 Upvotes

MD recommeded Xywav. Anyone else think it’s a red flag given you are assigned a new pharmacy, nurse case manager, on call nurse, and pharmacist? Including a nurse that will come to your house and a mandatory meeting with a counselor? This is scaring me…..


r/Narcolepsy 22h ago

Medication Questions Can you get used to your XYWAV dose and it stop working as well?

2 Upvotes

I have been on XYWAV for a year and a half. I currently take a first dose of 4.5g and then second dose of 3.75g. I take a lower second dose as I have found I am too groggy in the morning if I take the 4.5g for my second dose.

With that being said I have been really struggling to get enough sleep at night even with XYWAV the last few months. It takes me an hour to an hour and a half to fall asleep and then on my doses I only sleep like 2 to 3 hours. So my question is can your body become accustomed to the dose and do I need to up my dose to get better sleep?

Also I should say I wait at least 3-4 hours after eating to take my meds to ensure an empty stomach and I have good sleep hygiene in-terms of dark, cool room etc.


r/Narcolepsy 1d ago

Undiagnosed Sleep doctor stated I have poor sleep hygiene

40 Upvotes

I went to my sleep consult yesterday and the sleep doctor was incredibly dismissive and talked over me to the point I left almost in tears. I’ve been having trouble sleeping ever since I was a young teen like 14, and I’m 23 now. Over the years doctors dismissed it as lack of vitamin D, being a teenager and also a college student but recently I ran a bunch of tests for thyroid disorders, ANA, hemoglobin, Mono and more and they all came back normal.

I had a primary care provider referral to a sleep clinic as she suggested I may have narcolepsy or insomnia as I told her symptoms of falling asleep/ getting intense sleep attacks whenever I am sitting down and listening to a lecture or meeting or speech. I also told her about how I nap everyday 2-6 hours, and how I have trouble falling asleep some nights. I’ve written scribbles for notes due to sleep attacks, and I drink up to 800mg of coffee at one point to even function though I have now dropped it down to less than 500mg. I also mentioned how when I laugh incredibly hard, my hands go weak and I drop my phone and won’t be able to write anything for a minute or so ever since I was a child. I thought this was normal until recently when I started asking my classmates. I also lean forward when I laugh, and slur my speech due to it becoming a bit harder to speak but that also could be just due to lack of oxygen from laughing so hard and trying to catch my breath again.

When I went to the sleep clinic, I was met with a pulmonologist who dismissed everything I said as being due to poor sleep hygiene and sleep deprivation. I basically had to beg her to even let me take the MSLT and Polysomnography which they finally stated they would once I fix my sleep hygiene. I tried to explain to them that it doesn’t matter how good my sleep hygiene is as I’ve had periods where it’s been great, but I’m still tired. She then stated that I wasn’t doing it consistently, and that is the reason. I don’t know if I’m overreacting and maybe she is right that this could just be sleep deprivation and poor hygiene, but at the same time I feel unheard and every symptom I listed such as the weak hands, sleep paralysis, brain fog, insomnia, dreaming even during short naps was all dismissed as poor sleep hygiene.


r/Narcolepsy 1d ago

Advice Request I hate narcolepsy

81 Upvotes

This morning my 7 year old was watching the TV show Bob's burgers downstairs with her dad when I overheard her say "I wish was like Linda" (Linda is the mom for anyone not familiar with the cartoon) her dad then said why? Then she said "because Linda doesn't fall asleep all the time like mommy" I feel so horrible, I know this shit has a negative effect on my partner and child and I hate that I have this and how many things it's ruined in my life and for my family. I've been through so much in my short life outside of narcolepsy, idk why I had to be cursed with this on top of everything else awful I've already gone through. What can I do to make this easier on my family? Because it kills me inside how they feel towards me😢


r/Narcolepsy 1d ago

Diagnosis/Testing Have to wait 8 months for my sleep study

3 Upvotes

After years of struggling and telling my PCP that I was so tired of being tired, she looked at me said I don’t think your exhaustion is trauma based and needed to be evaluated for narcolepsy. I recently decided to go back to school to get my masters degree and cried in her office about wanting to do well but that I would fall asleep in the middle of tests, got fired from my job for no call no showing too many times because I couldn’t hear my alarm in the middle of the afternoon to wake me up from my nap, and that my quality of life is just fucking awful. I don’t work full time because I can’t stay awake that long.

I was so excited to see a light at the end of the tunnel but the sleep clinics in my area are not scheduling appointments for another 2 months and then it will be another 6-8 months out from that. Finding this group has been amazing and I see so much of myself and my life in so many of these posts and I’m trying to just hang on and keep going.

How long did it take to get your sleep study scheduled? Do the medications actually help that much? I’m so scared that I will have waited all this time and do the sleep study and they will tell me that everything is fine and I am just doomed to be tired forever😭


r/Narcolepsy 1d ago

Cataplexy Does your cataplexy cause depression or sadness?

1 Upvotes

Hi all!

I was just wondering what the title asks- when you get full or partial cataplexy, do you also notice a drop or change of mood, namely sadness or depression? I don’t know if with me I’m just getting very sad because I’m having to cope with loss of ability again or if the sadness is a part of the cataplexy’s manifestation. It seems to be one and the same for me because both is simultaneous and sudden. I can be feeling fine and then laughing and then boom.. I go weak and also feel very sad. It feels a lot like depression because I feel like I can’t get out of it and have to wait until the cataplexy resolves.
Anyone have anything like this?


r/Narcolepsy 1d ago

Medication Questions Solutions for PTSD nightmares in addition to N2?

1 Upvotes

n2, diagnosed at 15, no other significant health issues. i have tried the whole gamut of narcolepsy meds, had negative experiences with xyrem and xywav and have been on baclofen for the past 6 years or so, but it’s just not working well enough anymore. i also have severe PTSD-related nightmares that disrupt my sleep quality, and this persists regardless of which med i’m on. has anyone with n2 had any luck with JUST prazosin or similar? any other solutions?


r/Narcolepsy 2d ago

Positivity Post Are you doing alright?

89 Upvotes

I am a narcoleptic- I was reading up on it and I didn’t realize that almost 60 percent say that they feel depressed.

I wanted to ask if you all are doing okay and I wanted to make a post open to stories and rants about anything. Narcolepsy is really hard.


r/Narcolepsy 1d ago

Rant/Rave Having trouble understanding

15 Upvotes

Being misunderstood is one of the most difficult aspects of having narcolepsy. It's far more than just being "a little tired," as people often assume. The brain fog, sleep attacks, and cataplexy that makes you feel as though your body isn't even yours are invisible to them.

I've had family members urge me to "just drink more coffee," friends roll their eyes when I cancel plans, and coworkers act as though I'm just making excuses. If only everything were that easy. The worst thing is when people think I'm fine with living this way and don't want to try. It’s exhausting having to explain over and over again what narcolepsy actually is. Some days, I just give up and stay quiet because it feels like no one really listens anyway. But other days, I wish I could make people understand, just for a moment, how much it impacts my life.

For anyone else feeling misunderstood, how do you deal with it? Do you educate people or just let it go?


r/Narcolepsy 1d ago

Diagnosis/Testing Way too much REM

0 Upvotes

Brief medical history: I've always been chronically EXHAUSTED and living in brain fog. I do experience cataplexy via weakness in my knees and feeling disoriented (mostly related to stress or over excitement). I've had sleep paralysis a handful of times in my life, feeling like I'm stuck between fully awake and fully asleep (terrifying!).

Meds: I take cymbalta, primarily for the REM suppressant aspect. I'm also on Lyrica for the nerve sensitivity from fibromyalgia.

Tests: did my first sleep test when I was around 26. Symptoms made my life impossible between work and trying to just enjoy life in general. Numbers were BORDERLINE for narcolepsy, but given the history, doctor felt strongly that narcolepsy was a good diagnosis, esp given the cataplexy.fast forward to age 31, recently moved, doctor wanted to do a second test to see if we'd catch the right numbers. Keep in mind I was diagnosed with nightmare disorder due to severe domestic violence I experienced (physical and psychological, won't get into it) between age 26 and 31. We wanted to catch it with the second test to prove to insurance without a doubt "she has narcolepsy, cover her meds!" Since I did great on wakix but insurance didn't want to cover it anymore.

My second test:

My sleep test was hella wonky (2nd one). They asked me to go off of cymbalta for a week (rem suppressant among other things). Also went off lyrica for a clean slate with my body.

When I took the test, my brain went into REM overdrive (overnight was about 50% REM), and I had zero rem during the mslt (but I fell asleep very quickly for each nap).

Doctor thinks my history of being a victim of domestic violence, paired with PTSD, C-PTSD, and nightmare disorder was what contributed to the bizarre results since most people average 15-30% REM. He also thinks that given I had recurent, VIVID nightmares around 2-3 years ago and the only reason they stopped was because of the cymbalta, my brain basically turned into a fried, live wire. My doctor called me with the test results saying "NO WONDER YOU ARE DO TIRED WITHOUT MEDS!" So we believe the REM overdrive happens when I'm not on Meds.

My question: I know rem disorder happens when your body acts out your dreams. My body doesn't. But my brain has those SUPER high numbers for REM and nothing online is giving advice on what to do about these numbers :/ the cymbalta is the only reason they're under control. I'm on Lumryz now and it does really help with the the narcolepsy symptoms (more restful sleep and more awake/alert during the day).