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 7h ago

Rant/Rave Got Fired.

27 Upvotes

I recently got a second job working part time at a small business that’s managed by someone I know. I loved it! I let them know I have Type 1 Narcolepsy and may struggle getting in on time because of hypersomnia and miss some shifts or be late to them. They were really understanding but this week I missed a shift, was an hour late, and today ran late as well. Overall a bad week for me. Today they talked to me and said that they know my absences and tardiness are not my fault and there’s no hard feelings, but they had to let me go. They said they’re not hiring anyone new for the position and that I’m on probation and to contact them in the fall. Just basically said it wasn’t a good fit for me right now kind of thing. I am also worried that by fall and I contact them back they won’t hire me again despite saying it’s just a probation period…..I’m really distraught over this, I thought I could do it. I also feel like they didn’t like me?

I’ve been prescribed Lumryze, but I’m terrified to take it because of side effects. I’m also a 20 year old online college student and don’t want any more of my life and “normal” experiences taken away from me. This condition has turned me into an unreliable, irresponsible, stupid, and unpleasant person. The brain fog is so intense there’s just static most days, I used to be brilliant.

Should I try and contact them in the fall or are they for sure just done with me? Is it time to give Lumryze a try? Have I destroyed a friendship and other new relationships because I got fired?

Thank you for reading my unorganized rant.


r/Narcolepsy 11h ago

Health and Fitness Naps make me worse

17 Upvotes

I see so many posts about napping to get through the day and it makes me wonder why naps don’t help me.

While I fight daytime drowsiness most of the day (Sunosi gives me a few good hours in the morning), if I take a nap I am worse the rest of the day - groggy, disoriented, unfocused, don’t feel safe to drive. Often, I also wake up with a headache after a nap.


r/Narcolepsy 7h ago

Rant/Rave So Tired of This

4 Upvotes

I (48F) am so tired of being tired. Meds are minimal help. I don't really have family or friends to rely on. My husband is supportive but he travels for work and is gone a lot. Every day I wake up overwhelmed because of all the things on my ToDo list. I make it a point to try to do some of the things I need to but I just get further and further behind. My anxiety is crippling, due to the overwhelm. Currently, my joints ache and I've had to help my elderly mother and have had minimal sleep this past week. The day to day stuff is so taxing that I can't get to the stuff that has been slowly getting out of hand for the past several years. Some days are better than others but I feel like I'm on a steady decline. The good days aren't as good as they used to be. I used to have hobbies and friends and interests but I don't anymore. My executive function is also getting worse. Really, I could probably use some encouragement. The next couple of weeks are going to be really overwhelming and I just don't have the energy to prepare for them.


r/Narcolepsy 20m ago

Medication Questions 16 yr old son diagnosed with Narcolepsy and now prescribed Nuvigil

Upvotes

Hi all- I am new to the community but happy to find it. My 16 yr old has had sleep issues since about 7 and after multiple sleep studies and many doctors the neurologist diagnosed him with narcolepsy and prescribed him with Nuvigil last week. My biggest fear are side effects such as anxiety,depression, and suicidal ideation. He was so excited to hear from the dr there was a medicine that could keep him up during class, it broke my heart he has been struggling for so long. Are there any other parents here that have kids on Nuvigil? just want to hear thoughts. or anyone currently using Nuvigil any thoughts or suggestions that you think would be helpful I am all ears. Thanks!


r/Narcolepsy 11h ago

Rant/Rave How do you respond to those situations? Do you persevere or give in and take a break?

7 Upvotes

When your body simply quits up, do you know what it is? My day is going well one minute, and then all of a sudden, I'm forcing myself to function. I feel like I've run out of energy and have nothing more to offer.

I have to push past this when it occurs in public. I crumble when it occurs at home. In any case, I never know when it will happen, which is annoying.


r/Narcolepsy 1d ago

Diagnosis/Testing why do doctors still push "sleep hygiene" on narcolepsy patients

208 Upvotes

I've been given pamphlets and papers on "sleep hygiene" before and it feels like a cruel joke. It basically can be summarized as "just go to sleep earlier bro" and "dont drink coffee at night bro" as if we have not tried simply going to sleep earlier or not drinking coffee at night. It feels like one of those clickbait articles about "one small hack to fix X problem"

Do these doctors actually think we would be going to their practices for narcolepsy if "just going to sleep earlier bro" worked? We are clearly not normal patients and we have a problem that is beyond leaving our fucking TV on at night or some stupid shit that can be solved by an "easy hack" like that

It's like telling someone with OCD to "just stop doing the ritual bro" or someone with a broken leg to "just stand up and walk bro"


r/Narcolepsy 2h ago

Advice Request Should I sleep if I’m tired or push through for sleep diary/actigraphy

1 Upvotes

Hello everyone! So I’m on the second day of my actigraphy/sleep diary and I’m curious if I should be sleeping if I am tired, or if I should take caffeine and push through? I’m asking this because I often do this during the midday after school or work if I want to force myself to go to the gym to stick to my routine as it’s either chug the pre workout and go right away, or end up in a 2-6 hour nap 😭. I really do love going to the gym, but would this skew my actigraphy results? It’s not everyday that I do this, it’s only the days where I have other stuff going on and it’s either a nap or gym and there is no other time to push the gym.


r/Narcolepsy 10h ago

Medication Questions Xywav personality changes

5 Upvotes

Have been in Xywav for a month and 1/2 now. Not enjoying the experience. So anxious. And where I am usually a pretty confident person, feel lots of self doubt. I am catching myself fretting on things I said or did waaaaaay too much. Skittery- nervous all the time. Will this stop or get better? Still not feeling the miraculous benefits I have heard from others.


r/Narcolepsy 2h ago

Diagnosis/Testing Almost diagnosed

0 Upvotes

Hi all-

I have yet to be officially diagnosed till my sleep study later this month. My dr thinks I have narcolepsy type 1 with full body cataplexy episodes.

Few questions I’m researching if y’all could share your experiences (yes, I’m also reading through posts to find answers)

  1. Daytime exhaustion but when I lay down I can’t sleep but I’m too exhausted to do anything. No stimulants or caffeine. Is this common?

  2. Even with my adhd meds (adderall) and an energy drink I want to curl up and sleep, like my body is just so tired. Im looking forward if there’s medication that helps this, any suggestions for non medication approach? I have things to do 😂

  3. Full drop cataplexy episodes describe what I experienced to a T! Yay. But the episodes have happened when I’m driving or chilling on the couch, so unknown triggers and they only happen once every few months. Does the sleep study put me through things to try to trigger it for them? I think it’s stress that triggers them. Never happened when I’m excited or laughing.

  4. Can my drivers license be taken away for N1?

Tysvm!! I really appreciate any responses.


r/Narcolepsy 6h ago

Medication Questions Started Xyrem last night 1.5mg x2

1 Upvotes

This is mostly a stream of consciousness about my feelings on starting Xyrem, but if anyone has any advice, that would be super appreciated. I’m a 23F with type 2 Narcolepsy and I work from home full time, which I think is all the info that could be relevant. Medication-wise: my insurance denied Xywav and SUNOSI as “not medically necessary” (make it make sense🙄) and I’m on 60mg of Ritalin for the narcolepsy as well. Also, I’m located in the U.S., though having insurance deny narcolepsy medications to a narcoleptic as “not medically necessary” probably gave that away…

Obviously Xyrem requires titration up to the full dose, but nothing felt different about last night other than having to wake up at 4am to take a small cup of disgusting, room temp, salt water. I’m thinking about trying a strategy I saw someone else post about filling your mouth with water and then squirting the syringe in and swallowing and then drinking some more water to wash it down because I was gagging and it took me several minutes both times to take the dose.

I couldn’t even finish the 4am dose (just a tiny bit left in the bottom I couldn’t bring myself to finish) and the whole ordeal of dragging my eyes open and myself up into a sitting position and then taking the dose itself took me 30 minutes and by the end I was wide awake and incredible cranky.

I’m already not happy about this approach because I hate having to limit my life even more than the narcolepsy does. I know that’s a little irrational because this medication could also improve my life, but I just am having a hard time accepting the fact that there are even more limits to what I can do. I’m only 23 and have only felt like I am my age and living my life for the past year and a half or so because I was diagnosed in college and, by the time I graduated, I had found a treatment that worked pretty well for me. Things got even better when my employer’s insurance covered SUNOSI which was life changing for me. Then I changed jobs and lost the SUNOSI and my quality of life went down significantly, but I still felt more in control of things and like I had more of a say.

I guess the bright side is that Xyrem has a short half life and doses can be skipped without suffering significant consequences like with lots of other medications. That gives me some autonomy I guess. I’ve heard that if you skip a dose you wake up groggy and are tired the next day, which makes me laugh because that’s literally every day of my life. Who knows, maybe this medication will be so life changing it will open doors I never knew were even there because I’ve been so tired and I won’t worry about doors that are a little harder to open.

Another thing I’m anxious about is having no control over myself when I’m asleep because of the medication. I trust my partner totally, but I worry about if there was an emergency or I was alone or something. How much does this drug knock the average person out?


r/Narcolepsy 11h ago

Idiopathic Hypersomnia Dr recommendations in Chicago?

1 Upvotes

My current Dr has said treating me is "beyond her expertise" at this point as I have not responded well to Xywav and Modafinil/ Sunosi. I was wondering if anyone has any recommendations for drs in Chicago/ IL? She can give up but as i'm sure you will all understand, I can't!


r/Narcolepsy 1d ago

Rant/Rave apartment lost my Modafinil, blaming it on me

28 Upvotes

i guess the title is self explanatory, but this is crazy to me. my apartment lost my (N2) medication delivery and reported it as being picked up. they are trying to say i picked it up. i told them theres no way because if i had picked it up, i’d have my medication. i’m so mad. i have to reorder the Modafinil, probably out of pocket. i’m not sure when i’ll be getting it. i think it’s more likely they lost it rather than it being given to someone else.

regardless, i’m buying sour candy so i can stay awake during my meeting. already fighting a sleep attack because i’m unmedicated and just ate lunch. i can’t believe i used to live like this and i hate having to do it again.

any tips on how to deal with being unmedicated?

UPDATE: they found it. i’m still annoyed with how quick they were to blame me. it doesn’t matter anymore because i have my medicine thank god!!!


r/Narcolepsy 21h ago

Advice Request Anyone else struggle to keep hobbies? Any tips?

7 Upvotes

I have n2, I was diagnosed almost 2 years ago, and I’ve struggled w keeping my hobbies ever since my symptoms started getting bad in late middle school. I do have ADHD as well, which contributes to short hyperfixations, but before my sleepiness and energy levels were super low I was a big time artist and writer in my free time, along with gaming. However, as time went on, I stopped creating and gaming and nowadays, even when I have the urge to create, I have no energy to do much of anything besides school (in college full time) and work (part time).

I’m on meds but I have to delegate that time to school and work, so when the meds wear off I’m too exhausted to do anything besides doom scroll and watch youtube/tv. Anyone have any tips for getting hobbies to stick and reserving energy for them? Is this a problem other people have experienced? I’m just sad that the things that I love to do seem to not have a space in my life anymore, and not because of anything other than no energy to do them. I miss playing guitar, drawing fan art, writing stories, playing video games. If anyone has any advice I’d appreciate it. Thank you! <3


r/Narcolepsy 1d ago

Diagnosis/Testing Thank you for sharing your MSLT experiences

18 Upvotes

I’m doing my MSLT today (2/5 naps in) and I haven’t been able to tell if I was asleep or not during the naps. Reading previous posts on MSLT experiences (and the fact that lots of you felt like you didn’t sleep) is keeping me sane. I would definitely be freaking out right now without this sub.

This process sucks and I am SO exhausted already. But thank you for sharing your experiences. It’s very validating.


r/Narcolepsy 1d ago

Health and Fitness What clues you into a sleep attack?

13 Upvotes

I am considering trying to make a device (prototype- I'm in engineering) that senses changes in my heart rate and applies an unexpected pressure to 'shock' me awake (not literally, I mean scare me a bit). But I am not sure if my heart rate slows enough for this to work- are there some cues that you notice your body giving when you start to have an attack?


r/Narcolepsy 1d ago

Rant/Rave MSLT not conclusive. Feeling defeated.

15 Upvotes

I slept through 3 out of the 4 naps. Wasn't sure I did but they told me I did sleep through each, except the last one.

He said it is likely some kind of Hypersomnia, a mild one compared to extreme cases he's seen.

Today doctor called, told me the MSLT did not mark positive. Will schedule an HLA for me. Says he will give me a report after the HLA is done. I already was in talks to get another MSLT from another doctor, will get it.

I feel frustrated and defeated. Lost my last job due to a sleep attack, and I'm having a hard time searching for the next thing knowing it will just happen again as it happened before and before.

Holding on to the hope of getting some diagnosis and getting readmitted with it. I've slept at every job and every school I've been to.

I appreciate the work this sleep doctor is doing for me and I understand that he is not entertaining my rants nor reassuring me beyond his duties.

I am thinking about going to therapy but I don't want a therapist dismissing me for not understanding my condition or situation. I am postponing getting any kind of antidepressants so as not to interfere with tests.

Thanks, I just needed to rant a bit.


r/Narcolepsy 1d ago

Advice Request How do I develop better sleep hygiene?

3 Upvotes

I don’t know where to start. I sleep at around 10pm and wake up for work at 7am. Do I maintain this on the weekends too? Can I sleep in? What do you guys do?


r/Narcolepsy 19h ago

Diagnosis/Testing Awaiting mlst…

0 Upvotes

I just finished an overnight sleep study/daytime mlst. What a torturous 24 hours! I was told by the sleep tech that they got “really good data” and that I should be getting a diagnosis from the sleep neurologist next week.

I really have no idea what to expect. All I know is that I slept during all 5 naps. I am pretty sure I fell into REM during all 5 naps, but honestly I only remember 4 dreams. Of those, only 1-2 were super vivid. Normally I have better dream recall, but it truly felt like the second I slipped into sleep, and began dreaming, they came and woke me up! (Is that by design???)

That’s why it felt torturous … I developed a severe headache midday and took some advil. (I had a triptan at the ready in case I developed a migraine, but thankfully my headache remained a caffeine withdrawal situation.)

The first nap was only 20 mins. The fifth was closer toto 40/45.

I’m so nervous for the results! I hope the data is conclusive. I am on 30mg Duloxotine SNRI; I had been on 90 for 4 years and could only safely taper down town to 30. I hope that despite my medication, my mslt will render a diagnosis. I don’t want to have to go through that again.

I’m so glad I found this subreddit today — so many of your posts helped calm me anxiety throughout the day!


r/Narcolepsy 1d ago

News/Research Video on Hypnagogic/Hypnopompic Hallucinations

Thumbnail youtu.be
4 Upvotes

This is the 5th video in the 'Talking Narcolepsy & the Symptoms of Sleep Disorders.'
To come next will be a video on Sleep Paralysis, then a video on Cataplexy.


r/Narcolepsy 1d ago

Diagnosis/Testing My actiwatch sleep diary is a disaster. Did anyone else mess this up?

2 Upvotes

I’m off all my meds for a two week actiwatch study, which requires me to also document my activities on a paper form.

I need to record when I go to bed, when I get up, each time I fall asleep and wake, and any noises, alarms, or times I get up to use the toilet etc.

Sounds simple enough, right?

But I just cannot do it!

I don’t know when I’m going to fall asleep! It just happens to me! And when I wake up, because I’m off my meds it’s always a groggy blur that leaves me completely incapable of filing in the complex table on the form for at least a couple of hours.

Today I slept from 2am-8pm, waking occasionally when my daughter made noise or I needed the toilet. I tried to take screenshots of the time whenever I woke, but now I’m so sleepy again and I just have all these random times and no recollection of what they all signify.

Did anyone else struggle this much with their sleep diary? Does anyone have any tips?

I swear im not usually an idiot, but this combination is making me feel like I am 😭


r/Narcolepsy 1d ago

Rant/Rave Does anyone wish they had an ON/OFF button for medication?

2 Upvotes

Instead of medication slowly wearing off and losing effectiveness into the early evening like 1-3 hours before bedtime.

I have trouble with alertness and focus later in the day so I take my last dose late afternoon and sometimes my brain won’t shut off because of it.


r/Narcolepsy 1d ago

Medication Questions Xywav: husband couldn't wake me up

11 Upvotes

I have called my doctor and left a message but I'm freaked out and wondering if anyone else has experienced this.

I take 4g of Xywav just once a night and have for about a month (was previously on 3 and 3, then dropped to one dose and titrated slowly up to 4.) It's always been fine and I wake up if I have to go to the bathroom, or if a disturbance happens like a thunderstorm or my dog puking. Last night I took it around 1am, and I guess around 2 I started snoring heavily. I have asked my husband to wake me up and make me roll over when I snore. He says this time he absolutely could not despite shaking me firmly and yelling my name in my face.

When I woke up this morning I remembered none of this. Felt like a normal Xywav sleep. I'm horrified and now afraid I'm going to die in my sleep or something. I had a slightly smaller dinner than normal, but no other alcohol, drugs, or different behavior that could explain it. I wasn't hungry when I went to bed or anything.


r/Narcolepsy 22h ago

Advice Request I felt like I was going to cry and then couldn’t?? Followed by not being able to talk??

0 Upvotes

Edit:Can there be a tag added that says in the process of undergoing diagnosis or something? I get there’s things yall don’t wanna do etc, but for the love of fuck having to spend a whole ass paragraph to explain you’re going through the process for each post or comment can be quite a hassle. I understand why most users don’t even use them. But oh well.

Anyways, I’m in the process of getting one. Sleep specialist I’m working with says and suspects narcolepsy. Stupid insurance is being a complete ass giving me the run around and denying me a sleep study/MSLT. So sleep specialist prescribes Modafinil to go along with my already prescribed Adderall to help manage my EDS and hopefully help me with my sleep inertia. Im on the brink of losing my job, as well as my marriage over this. I don’t know what to do anymore. If I go to the hospital, I’ll be really screwed considering March 1st was the day our insurance’s deductible reset.

Apologies about not giving more detail. It’s been 3 whole weeks of weird ass symptoms day in and day out, and I’m exhausted. I barely remember typing the original post. Have a good weekend if anyone else responds or happens to see this.

Original: Hey, sort of what the title says. I was getting stressed at work and sort of confused, and I was just so frustrated that I couldn’t do this thing that I’d done 100 times before. I felt the pressure of tears build up behind my eyes like I was going to cry, but then my head/brain started getting these like…cold electrical tingles and that was followed by my jaw getting super tight??? Like I was going to talk, but then I couldn’t?? I really wished in that moment that I knew how to use sign language. I tried SO HARD to fight through it, but it just made my jaw clamp harder?? Any ideas??


r/Narcolepsy 1d ago

Medication Questions About to be a first time dad

2 Upvotes

We’re expecting our first in a couple months, and I’m (M33) a little nervous about being able to pull my weight at the beginning with the newborn due to lack of sleep compounding my N symptoms. I’d love to be able to get up throughout the night and help my wife out but don’t know if it’s going to be realistic.

Currently taking modafinil 2x daily (when I wake up and around noon), but I’m not sure if I should/how to alter that schedule when dealing with being up all night, sleeplessness, etc… Will be booking an appointment with my doctor for formal advice but if anyone can share their experience entering into this phase I’d love to hear it!


r/Narcolepsy 1d ago

Humor Public sleeping

1 Upvotes

In many videogames where you must eat, drink and also sleep, sleeping is often possible only under specific conditions, like in a bed or in a tent. This always felt a bit inaccurate from my experience, as I can fall asleep in many unusual places when the urge to sleep hits.

Today during mid-day stroll through a public park, a sat on a bench and a felt the urge to sleep incoming. So I laid down, put a handbag under my head and just fell asleep.

People were walking around me, chatting, possibly staring at me, and I just slept unaffected.

A few days back I was in the library studying a book. Even though I was on stimulant, dire sleepiness started to affect my cognition. I tried to fight back against sleepiness, but I couldn't focus on the book when I was basically half asleep already.

So I crossed my arms on the table and put my head inside, falling asleep instantly. Later I regaing consciousness, did some more reading, encountered another sleep urge and took another nap. I was just napping - studying. Students next to me kept changing and again, it didn't affect my sleep.

One time when waiting on a bus, I fell asleep on a bench and when I woke up, some lady was sitting next to me with her ass next to my head.

Recently bumped (lightly) into a girl next to me, as I fell asleep sitting in a circle with people around.

Loud noises, screams, stomping, alarm, I sleep through every loud event that happens around.

I struggle with public speaking but ace public sleeping.

It's nothing to be envied but it's at least a bit funny.