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 2h ago

Advice Request anyone successfully working an office/desk job?

9 Upvotes

my current job is sat at a desk in an office all day. i plan to become an accountant which will also be office work... i can barely reach the 30 hour mark per week because of my narcolepsy. i end up leaving early because i'm falling asleep at my desk every day and at times i lose control and doze off anyway. i know if i didn't work for family friends, i'd be fired already.

is there any narcoleptic out there managing to work these kind of jobs? i want to be able to work full time... is that even possible for people like us?


r/Narcolepsy 21h ago

Humor New shirt!

Post image
184 Upvotes

Thought you guys would appreciate 😂


r/Narcolepsy 2h ago

Medication Questions Sleep study question

5 Upvotes

Helllooo. I have a sleep study scheduled mid september. I was on wellbutrin, prozac, and abilify as well as being a daily 🍃smoker. I weaned off of my prozac and abilify under the advice of my sleep doctor. He says that wellbutrin should be fine. I wanted to stop smoking 2 weeks before the test as well, since I know it affects sleep. I realized im a couple days past the date that i wanted to stop. Does anyone know how long you need to quit before the sleep study to make it accurate?


r/Narcolepsy 1h ago

Diagnosis/Testing Doctors keep saying it sounds just like narcolepsy… but apparently it’s not

Upvotes

Over the past year or so I’ve seen so many doctors trying to track down why I’m so sleepy to the point where I hate driving anymore. I just got back from my appointment with the long covid specialist, who says my condition doesn’t sound typical for long covid, but that the pattern of my sleepiness/fatigue sounds exactly in line with narcolepsy without cataplexy… but I had a normal sleep study + MSLT, so he’s mystified.

My psychiatrist and PCP have said almost the exact same words to me. The rheumatologist (who has discharged me) mentioned she suspected some kind of sleep disorder as well. The endocrinologist just made sure my hormone labs came back right and discharged me with a “keep looking!” The sleep specialist discharged me after the results of my sleep study.

My PSG came back 24 mins sleep latency, 79 mins REM latency, 0 AHI, 93% sleep efficiency. MSLT sleep latency 5-20 minutes, mean 16 minutes. No SOMREPs. I really thought I’d fallen asleep for more of the naps, but I was so anxious and excited at the idea of finally having an answer, maybe I messed up the test?

The next specialty my PCP recommended I see is neurology. But I’m so tired, I’m tired of seeing doctors who can’t help, I’m tired of paying copays, I’m tired of missing work for doctors appointments, I’m tired of hearing “wow that sounds like narcolepsy!”

I guess I’m mostly just venting. This has been so hard. I’m half ready to just give up and accept that nothing is wrong with me, I’m just different, that I just need sleep more often and I’ll never get as much time in a day as normal people get. If anyone here has a similar story, I’d love to hear about it. Or if no one here has a story like this - if it truly seems like I don't have narcolepsy - that would be reassuring at this point, too.


r/Narcolepsy 7h ago

Pregnancy / Parenting I’m considering trying for baby

10 Upvotes

Hi everyone, I’m considering trying for a baby in the near future, and I was wondering if there are any moms here with narcolepsy who could share how they managed pregnancy. I’m a bit worried about what to expect and would really appreciate any advice or personal experiences you can share.


r/Narcolepsy 15h ago

News/Research Narcolepsy causes

18 Upvotes

Just a personal survey of triggers that may be linked to developing narcolepsy. I was diagnosed with narcolepsy type 1 around age 23 as I was graduating undergrad and heading to grad school for a medical degree.

Please comment if you either had swine flu (or the vaccination) or frequency strep throat as a child/adult!

I’m specifically interested if anyone else was a confirmed case of the swine flu in 2009 (or had the vaccine in limited countries that had them) or has had chronic strep throat.

Thanks for any comments ahead of time and I hope this leads to a better understanding of the development/biologic triggers of narcolepsy!


r/Narcolepsy 4h ago

Diagnosis/Testing Confusing sleep study follow up

2 Upvotes

I had an appointment this morning to go over my Narcolepsy diagnosis with another sleep disorder specialist just to make sure all bases were covered. They said I don't TECHNICALLY have Narcolepsy, and that Narcolepsy is part of the "Hypersomnia spectrum" but I lean closer to the Narcolepsy side of that spectrum.

I'm so confused, I've never heard of this before, is Hypersomnia spectrum an actual thing that Narcolepsy is a part of?


r/Narcolepsy 14h ago

Advice Request How good is good? Who's done all the meds?

12 Upvotes

Hey all,

Sorry for the super long post. My initial goal was to get opinions on what level of functionality I should settle for at this point in time with the available medications for someone diagnosed with n1. I know there's at least a handful of people on here who have went down the stimulant rabbit hole.

How many drugs did you try until you landed on the best drugs for you? What level of functionality have you settled for?

Some background,

I was diagnosed at 27 when my symptoms became a lot more severe. I was always a sleepy kid though. I would fall asleep in class in highschool/college, but teachers didn't care because I still had decent grades.

Now at 31 I currently take xywav for sleep and Adderall in both xl and instant release form about 20-30mg total a day.

I can kind of function?

I have a remote job, which I feel helps and hurts. I know I'm saving a lot of time by not commuting and the extra time is really valuable, but at the same time I'm a zombie/robot a lot of the time. Also, I feel like I put in a Herculean amount of effort just to be a below average employee.

I rarely hang out with friends anymore or go out to socialize unless my band is playing or I'm invited out, which I usually decline unless it's a really good day and I know I have at least 2 full days of nothing going on to recover.

I can still drive places, but I'd put my driving quality at about the level of a 68-70 year old as a 31m on some days.

I play music and I sometimes feel like my dash of autism/adhd is the only thing letting me function as I constantly jump back and forth between my job, music, audiobooks, and video/card/board games.

In social situations I've become pretty awkward. It takes a lot of effort to micromanage my expressions. I'm constantly trying to remind myself to smile with my eyes, because I know it makes me look more normal in the mirror instead of looking like someone who is haunted by the crippling pain of never truly feeling rested, so looking like myself I guess haha.

Tldr: on Adderall and xywav I can hang onto my job with 90% of my daily effort(although precariously sometimes). My social life and hobbies are difficult to engage in/enjoy and friendships are difficult to maintain.

Was anyone at this point and tried a bunch of things and it became better than walking a tightrope or should I settle for hanging on for now?

Thanks!


r/Narcolepsy 3h ago

Medication Questions Eliminating Brain Fog Success Stories?

1 Upvotes

Hi! I (22F) was diagnosed with N2 back in February. I've tried a few medications, but none of them did anything for my brain fog and weren't viable for my sleepiness for reasons unrelated to the point of this post. I've tried modafinil, Sunosi, and an experimental orexin agonist.

Brain fog is what I suffer most from and the one I care most about being treated. Especially since I want to get a PhD after undergrad (and I'm a senior). To know what it felt like for my brain to work and to no longer feel it at the ripe age of 22 is beyond devastating. I'm starting stimulants later on this week and hopefully that'll open the door for insurance to ~oh so graciously~ approve my sodium oxybate request. I'm just afraid that I have too high of hopes for the sodium oxybates. I've been banking on those "fixing" or alleviating this brain fog, but I'm terrified that they won't and I'll be stuck like this. My brain was my greatest asset. I used to love school, now it feels like a battle to get anything done and it's so much more difficult to learn things let alone retain whatever I learn. I know that's natural to an extent as you age, but I have no doubt that I've been experiencing cognitive decline (I made a whole post about it if you wanna read that rant lol).

So that brings me to my question: is it possible for the brain fog to be alleviated by medication? If a medication has succeeded for you, to what extent did it alleviate the fog? How long did it take for you to notice that it'd been helping? All of our bodies metabolize drugs differently so I don't expect any specific medications that worked for you to work for me, but just knowing that it IS alleviate-able would go a long way to quiet my brain down with some reassurance that my brain isn't permanently screwed.

Thank you for reading this far if you have!


r/Narcolepsy 1d ago

Rant/Rave Will I ever “get over” having narcolepsy? It has been 31 years since diagnosis…

97 Upvotes

So today I saw a “sleep psychiatrist” to discuss changing my medication (modafinil for 24 years) and was told that I must have a new sleep study in order to have a different prescription. I’m from the US but live in Switzerland and this is apparently necessary for insurance.

I don’t want to do that. I just don’t want to put myself through all that for something that may or may not be better for me than modafinil. I’m doing fine I guess, and the doctor asked why would I want to change? I was kind of horrified to realise that I was holding out hope that sunosi or wakix or whatever would change my life. I objectively know it will not.

I’ll be 49 soon and I thought I had made peace with this. But right now I feel quite depressed, and have no one to share with who would understand. (My teenage son, in a rare bad mood, told me to “just get over it”. I don’t think that’s going to happen.)


r/Narcolepsy 9h ago

Medication Questions Early shipment of xywav

1 Upvotes

I am currently on the bridge program and my next shipment date isn’t until Wednesday. I will be on vacation in Mexico next week starting Saturday. Because it’s bridge, they only give 14-day supplies. I just started the bridge and had timed the delivery not to be the same time as my vacation. Has anyone ever gotten an early shipment? And how to go about doing so.


r/Narcolepsy 7h ago

Positivity Post Removed Post

0 Upvotes

The mods removed my last post for sales promotion for medication, etc. I didn't have any links to medication, or anything else, so if you're reading this, please tell me why my post was removed. I hope was done by a human & not by a robot.


r/Narcolepsy 20h ago

Advice Request New to Narcolepsy

3 Upvotes

Hi there, I'm 21 years old and recently got diagnosed with Narcolepsy type 2. I've been doing research into treatments and supports and was hoping that this group would be good. I also had a question about how those of you who were able to get service dogs went about that process. I am on medication but still struggling especially towards late morning and late afternoon. Thanks so much!


r/Narcolepsy 18h ago

Medication Questions Looking to import medicine to india

2 Upvotes

I’m on Armodafinil 200 mg right now, but it just doesn’t seem to be working for me anymore. I can’t tell if it’s because I’ve built up tolerance or just get a bad/counterfeit (I only have access to Waklert here). Even increasing the dose slightly (like 25 mg) makes things worse. My sleep gets fragmented and I end up waking almost every hour at night.

Most days I get about 10 hours of broken sleep across 2-3 naps, but with sleep inertia and extra naps, it feels more like 12-15 hours.

I spoke to my psychiatrist about trying Methylphenidate or something similar, but he keeps saying we will consider it on next visit. Last time he at least wrote the name down, maybe to research it, but still no prescription. I’ve got an appointment with my sleep specialist next week and I’ll bring it up again. In India though, options are really limited. it’s pretty much just Modafinil/Armodafinil or Methylphenidate.

I’ve been looking into importing meds from outside India. My mind is set on Sodium Oxybate as some of you have said in my previous post that it is best for sleep fragmentation and, the idea of taking something at bedtime, falling asleep in 10 minutes, and actually waking up refreshed sounds freaking awesome.

Can you share what medicine and dose is working for you or what dose generally works? Based on it I want to esitmate what my montly cost will be for this. I’m unemployed right now, so I’ll be paying out of pocket and need to figure out what the most affordable options might be.


r/Narcolepsy 19h ago

Rant/Rave Dreams dreams dreams never not dreaming

2 Upvotes

SSRIs? Didn’t stop me from going into REM on my MSLT. so much for inhibiting REM. Weed? Stopped smoking 2 months ago after years of regularly smoking before bed and other times of the day. No difference in the amount or vividness of my dreams before or after. So much for delaying the onset of REM. Xyrem? Dreaming. Lumryz? DREAMING. At this point I’m in my dreams, fighting off the urge to fall sleep AS MY DREAM SELF, waking up 3, 6, 9 hours into my dose and going right back into REM the second I close my eyes. Still taking multiple naps a day, 2+ hours (I don’t even set an alarm for my nap when I get home from work anymore I just take as much as I can get), still waking up exhausted every morning, naps feel a little more restorative than sleep at night but not enough to keep me from feeling like I’d rather go right back to sleep than get up and be a person. Does anyone else have this experience??? Absolutely nothing seems to affect the amount I dream or how lucid I am. I’ve been this way my whole life (hence getting diagnosed with narcolepsy a year ago) but now I’ve literally tried everything available (currently on Sunosi and concerta for daytime) and no matter what, I’m going into REM sleep for what feels like days on end (but is really only a few hours!) and not getting restorative sleep. So another day begins, and my eyes burn and my body aches and all I want to do is lay down and take a goddamn nap.


r/Narcolepsy 1d ago

Self Diagnosed narcopsy and third world countries

4 Upvotes

Hello! This is going to be written in Spanish, so I don't know if it will be understood well.

I don't have a medical diagnosis, but I know for a fact that I have narcolepsy type 1. Let me explain:

I have depression diagnosed by a psychiatrist, and at first I assumed that my desire to sleep all the time was due to depression, which was something that could be cured by "loving life" and that's it.

Then the hallucinations appeared. I remember being asleep and hearing a gunshot, and the next day asking my dad if he heard it and him telling me "I was awake and I didn't hear anything." Once I dreamed that my mother was fighting with a neighbor at the door of the house and I woke up ready to go defend her, until I got to the door of the house and it was empty and only then did I remember that my mother is dead. And things like that happen to me all the time, particularly when I sleep in the afternoon/night. Screaming in dreams, hitting things, having your eyes open alone (? and ending in sleep paralysis, etc.

Again, I assumed it was from depression. That it was something that was going to go away once I got my life in order. Until the cataplexy appeared.

Suddenly I can't laugh. If I'm standing and something makes me laugh, I end up sitting on the floor because my leg muscles get "weak." If I'm sitting and laughing, my head falls into the air in a very strange position, because my neck muscles apparently stop responding.

It doesn't just happen when I laugh, it also happens when I get angry, even my tone of voice stops being "strong" and I don't know how to control it.

It started happening to me last year, I related it to a lack of strength resulting from a sedentary life (?

Until I self-prescribed antidepressant pills (don't do it at home, please). The antidepressants completely eliminated my hallucinations and paralysis and my screaming/hitting/eyes open in sleep. It didn't last long because then I started having difficulty getting the pills on my own without a prescription, and the symptoms came back 10 times worse. That's when I started to find out about the topic and ended up here.

I repeat again: I am Latin American. There are not as many neurologists as in the first world. And the studies are practically inaccessible. The question is, is it worth using the little energy I have left to make an appointment with the neurologist, do the tests, get a diagnosis and resort to the corresponding medication? Or do I just continue to self-prescribe antidepressants that help with everything (except depression, apparently)?

I read them, I hope someone understands me, I tried to speak as neutral as possible

I still hope that when I get out of depression my desire to sleep all the time will go away and so will my strange actions at bedtime.

EDIT: I remembered more things. The first is to be in class and fall asleep but continue writing and when I wake up my handwriting looks like a letter written in Latin and not in Spanish. The second is traveling by bus and falling asleep and talking in my sleep/screaming/talking to the passenger next to me (also asleep, and then when I wake up having to apologize, because I remember the things I do in my sleep, I just can't control myself at the moment. Poor man, he didn't understand anything that was happening, his only mistake was that I fell asleep next to him). and also night terrors, which always include vibrations in the body that wake me up and I end up hearing voices in my head to the point that sometimes I don't know how I ended up praying ASLEEP because I think I'm being possessed by an evil spirit or something (my mom had schizophrenia, I was convinced that I have it too and the symptoms only manifested when I was sleeping, until the word narcolepsy came up on Google and I was glad I didn't have schizophrenia, that would be it too much for my poor brain)


r/Narcolepsy 20h ago

Rant/Rave I used to have dreams

2 Upvotes

when does it ends?

I used to want to be a doctor now I have to take online classes in a major that is not my first choice, have to fight to stay awake and feel fatigued throughout the whole day to the point where my body aches. My work is needed a lot of extra hours which I can't take because I'm always tired. However: more work = more money = getting out of my abusive house. But I can't work more hours because I'M TIRED. I'm always tired. It got to a point where I deny to sleep because I don't wanna sleep my life away. Since I'm always tired, at least I'll go out with my friends and try to have fun.

But at the end of the day, I'm tired and no one believes me. I wanted to be a doctor.


r/Narcolepsy 1d ago

Medication Questions A medication pet peeve

8 Upvotes

I take Xywav and Sunosi. I take Sunosi in two 75mg doses (morning and noon) so that it lasts all day and doesn’t hit me all at once. Xywav kills my morning appetite, and Sunosi kills it for the rest of the day. Want to know when I do feel hungry? When the Sunosi wears off, about two hours before I need to take my Xywav again.


r/Narcolepsy 1d ago

Undiagnosed This is ruining my life

16 Upvotes

Being undiagnosed and waiting for the test results of the daytime study is ruining my life. How did y'all cope with working while waiting for results?! I work from home and have such a hard time staying awake between tasks. I slept 9 hours last night almost straight through, and took an hour nap yesterday a long with resting laying down for a while.

I just feel this unquenchable thirst for sleep and rest. 😭


r/Narcolepsy 17h ago

Rant/Rave Screwed up

1 Upvotes

My N1 is not well controlled, I have such a hard time with Xywav getting both doses in. Lumryz gave me sleep paralysis. Daytime, I’m on Modafinil and Sunosi. I’ve also tried Waxik before, too. Anyways… second day on the job and I’m almost an hour late because my alarm didn’t go off and I slept and slept. I apologized to my boss— my phone died and the goddamn alarm didn’t go off. My fault for not having backups (and I do, I just collapsed into a deep sleep before I could even set them, literally fell asleep sitting up). And then at the end of the day, boss’ boss pulls me into her office and pretty much puts me on notice. 😭


r/Narcolepsy 1d ago

Medication Questions Just got diagnosed

3 Upvotes

So after 4 years of struggling I have been diagnosed with narcolepsy accompanied with cataplexy the doctor has prescribed me modafinil ( 100 MG each morning but said if I don't think it's enough i can take a second one at noon) for now I only take one in the morning and venlafaxine (37,5 MG also each morning) the doctor suggested I start with minimal doses and getting a more organized life style a stable sleep schedule and taking 2 power naps ( 15 min no more ) . Lately I have been struggling with really bad headaches and dizziness but I don't know is it normal since my doctor is on vacation . So is it normal for me to experience this knowing that I have been taking the medication for 2 months or is it a side effect of my messy lifestyle since I am on vacation so I am all over the place and forget to take the power naps plus I really struggle to sleep at night specially that I notice I started to have a breakable sleep cycle ( I sleep for some time wakes up do random things until I fall asleep again 3 times to 4 times ) . I would really appreciate your advices ( diet or lifestyle) to make things more bearable since college is starting again.


r/Narcolepsy 1d ago

Medication Questions Diet and sodium oxybate

3 Upvotes

Hey, I just started sodium oxybate. The first month was shit, I couldn’t eat. This seems to be wearing off. This is my second month on, and I’ve been starting to experience excessive sweating. My hands, feet and armpits. Also I’m having some joint pain and have been experiencing more muscle cramps. I’ve been reading some past posts about these symptoms, and I think I’m experiencing elektrolytes imbalance. I got a calcium/magnesium/zinc supplement. And I’m drinking lots of water. My main question. How should I be adjusting my diet. I’m not eating anything with excessive sodium (since im struggling to eat anyway, I haven’t eaten anything like chips or whatever could have a lot of sodium in it). I’m still on the lowest dosis. So I think the little salt that might sometimes be in my meals should not be that big of a deal. But do I up any elektrolytes? Where do I find good sources to read up on this? If you guys take supplements do you take this in the morning or right before going to bed? I’m just looking for some advice. College will start next week, and I really don’t wish to be sweating this much in class.


r/Narcolepsy 1d ago

Diagnosis/Testing Sleep Study ✅

11 Upvotes

Halfway done! The overnight sleep study is completed, the tech woke me… Another 10-12 hours for the MSLT, plus then another hour’s plus drive home in heavy traffic through two metro areas… I got through the night! Not sure how I sleep. Certainly less interruptions than while sleeping at home.

I had slept terrible the night prior, lots of stuff happening at home, I was grateful for a quiet night’s sleep.

Hope I can stay awake till 8:00 🙏🏼

She told me to watch tv, hahaha… I said no! Then I’d really be asleep 😴


r/Narcolepsy 1d ago

Medication Questions Falling Asleep on Xywav taking longer than usual

3 Upvotes

Hi,

I've remained strict on not eating 2-3 hours before bedtime (I notice for me that sometimes I need 4+ hours), but there are nights where I just don't feel loopy like I should and wait and wait to fall asleep but can't (sometimes it's 2 hours or 3 hours, and I just decided to take my second dose). I don't want to increase my dosage from 3.75g because I have a difficult time managing my anxiety.

Does anyone notice that falling asleep while on Xywav takes much longer at times?

Any suggestions on things to change?

Has anyone noticed bad batches of Xywav?

And lastly, I don't wash out my plastic bottle--I can taste the stale old residue but I don't think this should affect how a fresh dosage works right?


r/Narcolepsy 1d ago

Undiagnosed Please help me

2 Upvotes

Hello. I am not diagnosed with any condition but have had sleep problems my entire life. Insomnia, vivid dreams, lucid dreams, and waking up exhausted started when I hit puberty. However around 18/19 years old my sleep became way more disturbing with sleep paralysis, hallucinations while falling asleep, and false awakening loops happening very frequently.

Now I am 25 and I'm experiencing something almost nightly that is ruining my sleep and making me terrified to go to bed. When I lay down to try to sleep, I am suddenly hit with this heavy feeling. My eyes are unable to stay open and as soon as they close I start to feel this vibration sensation throughout my whole body but most intensely in my head. This starts literally 5 seconds after my eyes close. The vibration feeling quickly becomes more and more intense and I notice my body feels very heavy, almost entirely paralyzed. As this is happening I start hearing voices, laughing, screaming, singing, etc. It scares the shit out of me so I try my hardest to open my eyes and then it all stops. However, as soon as my eyes are open I am hit with this same heavy eyelid feeling and am unable to keep them open. Once again as soon as my eyes close everything repeats. This will usually loop for 1-3 hours until I am finally able to get myself up and walk around. After walking around I can usually go to sleep normally but sometimes it just repeats.

I'm exhausted and terrified. I dread going to bed and just want to sleep normally. This happens both at night and when I nap during the day. Has anyone else experienced this? Is there a name for it? Is there any way to make it stop? I have an initial sleep study appointment 1 month from now but I don't know when my actual sleep study will be. I feel like I need relief in the meantime and am desperate for a solution. I'm sorry if this is the wrong place to post this but I don't know where else to go.