Narcolepsy

Before reading this, please read:

(we have a WIKI) This post is more casual...

​

I’ve seen a heavy influx of “I know you can’t diagnose me but can you diagnose me” posts on here lately and I wanted to reiterate that this sub is not a medical resource, it’s a support community.

The answer 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.

​

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 significannt low or non existant measuremant of hypocretin

N2: Narcolepsy Type 2 does not have cataplexy.

Type 2 Narcoleptics do not like a clinically significant absense 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.

​

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 the course of a day, every two hours. They measure how fast you fall asleep and whether or not 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 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 interchangably.

​

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 are 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 course of 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. I received my results after 5 days, others might wait 3+ months.

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.

​

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 doctor makes 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 or not 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.

​

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, its a manifestation of the same lack of muscle control that everybody gets when they go to sleep. It is not paralysis, 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 effect 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 rediagnosed 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 always 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 (ie, it is not like epilepsy with flashing lights).

​

This cannot be answered. There is no way for strangers to gauge whether or not your symptoms are severe enough to see a doctor. Chances are if you’re inquiring about it, it's probably significant, maybe its not narcolepsy but you should definitely see a doctor. Strangers cannot tell you whether or not 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 or not your exhaustion warrants further medical inquiry. 

Ok I get it, r/narcolepsy 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 really all you can do. Wristwatch sleep trackers (apple watch, Fitbit, etc) do not work, the data is relatively useless. Don't waste your money.
• If you've had genetic testing done, see in you have the (HLA) DQB1*06:02 gene. This is the most commonly 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

People. Seriously? The # of posts the mod team have to remove because they break the FIRST rule are insane lately. The % of those that dm and argue they "weren't asking for a diagnosis just...x/y/z" when we all know what you meant when you asked vague questions about your sleep hygiene and if you should see a doc or not.. it's all gone way out of proportion. Please READ the resources, the rules, and respect each other. I'd like to assume we're all adults here, but lately it's hard to do so.

For those of you reporting the posts that break the rules, thank you!!! It's very helpful!

When I get really stressed, sad, and or cry a bunch about something I get so incredibly exhausted and can barely, if at all, stay awake. It's not immediate, it's sort of a build up. And thankfully getting so emotionally stressed doesn't happen too often but when it does I'm guaranteed to slow down physically and feel like I'm going to pass out and or fall asleep. I can fight it and feel stuck in one spot not able to move, or I can give in and sleep, which can last hours.

I've always assumed it's anxiety or something but since I've been diagnosed with narcolepsy I thought I'd ask.

It's currently happening because I've had to deal with a plethora of stressful emotions today. I need to get stuff done but I'm just sitting, feeling if I move I'll fall asleep.

I will try to keep my frustrations to a minimum since I want this to be more about what to do next, but I’ll first give a summary of the appointment.

I had an at-home sleep study for sleep apnea on Thursday and it showed me having very mild sleep apnea (from memory, 5 dips and my lowest O2 was 87%). The doc seemed to suggest that it wasn’t really a big deal but just that it would get worse if I put on weight - I’m currently losing weight.

We talked about my symptoms and he eventually asked for a questionnaire I had to fill out about them. I included a list of things that I’ve flagged as potential cataplexy symptoms (still not entirely sure, but I put everything I could think of in case anything raised a flag) and he asked a little bit about what happens when I laugh. I told him and he asked if my limbs get weak, so I said no (when I laugh, it’s mostly in my head - still unsure if it’s cataplexy or POTS, but again, wanted to include everything). He also asked about whether I fall asleep randomly, so I said that I get intense urges to sleep, but I don’t suddenly fall asleep. I brought up the possibility of narcolepsy or IH and asked whether a sleep study would help, but he turned the idea of me having either disorder down. He said people with IH sleep 16-20 hours a day, and people with narcolepsy fall asleep suddenly and collapse when they laugh (I wish I was exaggerating).

He ended the appointment saying that he isn’t ruling either out, but that I am not getting a sleep study yet. I have to wait 3-6 months to redo the apnea test and then maybe I’ll get a sleep study.

As you can imagine, I really wasn’t satisfied at all with this - he went based on the most extreme, outdated stereotype for how both of these issues present. From my research, I know a lot of people with N don’t just suddenly fall asleep and those with type 2 don’t get cataplexy, but he spoke like everyone with N has cataplexy and falls asleep.

Anyways, I am currently working on writing up all of my symptoms in more details and providing credible resources about symptoms to hopefully persuade the doc to test me.

Anyone have any resources I could include? (For example, to show that narcolepsy isn’t just suddenly falling asleep.) Alternatively, any advice on what to do to prepare for the next appointment or what to do/say when I next chat to the doc? (I’m not sure if it’ll be the same doc or his colleague since he mentioned something about consulting with someone else about my case.)

Any advice or even reassurance is appreciated. I’m beginning to feel like I’m being dramatic, especially cuz people irl aren’t very understanding either.

TLDR - Doctor didn’t refer me for a sleep study because he believes outdated stereotypes about both IH and narcolepsy. Need advice about what to do before/during my next appointment in 3-6 months to not be dismissed.

Sleep specialist said presumptive IH or N2, just waiting for my study.

I took Ritalin at the start of the parade. Crashed 2 hours later, took another Ritalin didn’t matter, had to close my eyes in the middle of a massively loud parade and I’m so embarrassed. I’m here with my friend and I’m trying to be friendly with her other friends but I just had to excuse myself.

They obviously have no idea. I’m just so embarrassed.

Does this really have any potential to get better? I’m on psychiatric meds and I’m terrified they will keep me from top of the line treatment.

I slept 12 hours and yesterday I took a 5 hour nap.

I’m just so miserable.

I just moved to a new town last month and wasn't due for my Xywav refill until a few days ago. I lived in my old apartment for 4 years, and it was extremely rare that I ever had a problem with a delivery.

My current apartment building has a keypad code that you need to use in order to get into it. Unfortunately we have no callboxes so someone wouldn't be able to press a button connected to my unit and I can buzz them in.

However, there's a little thing attached to it that from what I was told, all major shipment companies have a device that they can use to override the code and get in. So far, I've had no problems with Amazon and UPS being able to get into the building to deliver my stuff, and I have seen FedEx get into the building by themselves to deliver packages to other tenants.

So I was supposed to get my Xywav on Thursday. At around 4pm I get a notification saying that there was a delay and that it would be delivered on the 31st. Okay, weird, but fine. Friday comes and I'm waiting, and then again, around 4pm I get another notification saying it's delayed until June 3rd. I click into the tracker for more details again and now it claims that there was no adult present to sign for it. I work from home and left my office door open so I could hear the knock and I heard NOTHING. I opened my door to see whether they put one of those "we missed you" tags on my door. Nothing. Zilch.

My wife got home from work later that night and gave me a "we missed you" slip from FedEx. I asked where she found this and she said that it was on the door of the main entrance of the building. As far as I'm aware they should have been able to access the building entrance on their own, so idk wtf was going on with that. On top of this, I'd already run out of Xywav on Thursday. Thank god I still had a very old bottle of Xyrem that I kept after I switched drugs just in case, but only have enough to last until tomorrow - and all the salt is making my muscles crampy.

I didn't want to risk it being shipped back to ESSDS so I sent a reroute request to have it delivered to the nearest FedEx facility that would take it... which is 10 miles away. Needless to say I'm miffed. I really wish I could just have this drug filled at Rite Aid like or something I do with my other ones because it's quite literally a 4 minute walk from my apartment. I get why they have to fill it at a centralized pharmacy but damn, it's so freaking inconvenient when the delivery gets screwed up.

If you made it to the end of this, thanks for listening to my rant. This is just annoying beyond belief.

I apologize if this is really long, but here’s my story.

Back in October of 2020 I remember taking a new medication after seeing my doctor for something unrelated, which is allergies and eczema. A day later I was doing exercises for PE class on zoom and I remember I suddenly felt extremely tired, heard heart palpitations and got extremely dizzy for a little while, so I sat down for maybe 20-30 seconds or so and the dizziness went away. I thought I had a panic attack, or that the medication I was given had really bad side effects, so I stopped taking the medication and thought I’d be fine. A few weeks later, I started to have very bad daytime fatigue including reoccurring episodes of sleep paralysis whenever I laid down. In addition to this, I would get dizzy after standing up too quickly, so usually I had to get up slowly or sit down after getting up temporarily to start walking again. Fast forward to around 2021 when I had just began highschool. I went to a doctor’s checkup and my blood pressure was really high for some reason. I was really nervous that day, but they retook it like 4 times at 2 sequential check-ups and eventually my doctor got worried and told me that I need to take a 24 hour blood monitor test to check my blood pressure levels throughout the day in order to figure out the root cause behind my symptoms. My blood pressure was mostly fine throughout the day, but I constantly woke up at night because the constant squeezing of my arm and the beeping that happened every single hour made me nervous. My results came back normal, but not normal enough because of that. Eventually, I started getting other symptoms like occasional constipation and a tingling sensation on one of my feet, so my doctor order blood tests and checked my blood sugar levels but everything was normal aside from my Vitamin D levels, so I was referred to a Nephrologist. I told him my symptoms, and he made me take several tests like CT, MRI, ECG, and again EVERYTHING came out normal. I also got a liver and kidney ultrasound and they found out that I had a benign liver lesion but aside from that nothing. My blood pressure was taken again, and it was still high (like 133/83 but I don’t remember exactly what). For 3-4 months, I began to change my diet a little, and get more exercise. My blood pressure dropped back down to about 118 systolic and to 106 at some point when my nephrologist retook my blood pressure in the room. Despite this, my symptoms haven’t gone away. My doctor referred me to a gastroenterologist, and told me if she can’t find anything else, she’ll have to refer me to a mental health specialist. A few weeks ago, I saw my gastroenterologist and told her my symptoms. I know she had good intentions, but she usually just looked at me and then asked me questions along the lines of, “you seem nervous,” “did you get any sleep?” etc. She told me that my weight has decreased a few pounds since my last visit which is slightly concerning. She also told me she would request that I get blood work done for like the 4th time and when I asked her what specifically I was getting blood work done on she looked at me as if I was paranoid and she just laughed at me and asked me why I would I ask such a weird question. Honestly, I’m just really pissed off with the healthcare system rn. I know they’re have good intentions, but why is it so difficult to get to the root cause of my issues? I know for sure it isn’t just anxiety, and maybe I even sound crazy to whoever else bothered to read this post, but I don’t know who else to explain this to, or even how to explain my symptoms in a way that’s comprehensible enough for a doctor to understand because I can’t even fully understand them myself.

My current symptoms: - Excessive Daytime Sleepiness, sometimes I’d get sleep paralysis and begin to hear noises whenever I fell asleep during the daytime that would eventually go away. However, these episodes have never occurred to me overnight. Sleeping also doesn’t help my fatigue it makes it much worse. - Dizziness when standing up too quickly after laying down for a long time. Also a constant urge to sit or lie down for some reason - Tingling in my right foot whenever not in motion - Brain fog, extreme difficulty concentrating on my school work and difficulty getting on task again whenever I took a break. I had to work for extended periods of time to actually get anything done or else I’d end up procrastinating again because I just couldn’t focus. - Difficulty remembering things, constantly having to set alarms on my phone for important reminders because I can’t trust myself to remember it on my own - Muscle weakness, specifically whenever I’m doing exercises for endurance - Heart palpitations - Constipation, not sure if it’s normal or if it’s IBS/SIBO - Appetite is usually normal, but lately it’s been less than usual - Anxiety, but not much worse or better than usual honestly

I’d appreciate some advice or at the very least some natural remedies because I don’t know what to do at this point. Even when I try to open up to my parents about my issues they either think I’m insane and need to stop searching through the internet because it messes up my head, but I can’t really find any other explanation for my symptoms. It’s impacted my ability to do well in school, to socialize with other people, and while it seems to be invisible to everyone else I don’t know how long I can ignore it anymore.

Looking for advice and just wanted to get some things out there since I don’t really have anyone who understands. 3 years ago I was diagnosed with sleep apnea and then a year and a half later narcolepsy. I have been married 8 years and have 2 kids. Prior to getting married and having kids it wasn’t too bad but my symptoms have gotten worse which lead me to seeing a doctor and getting diagnosed. This may be related to being less active in gen I used to be and not working out.

My wife is aware of this, as well as my anxiety and depression and a long list of other issues but she does not seem to understand. I get criticism for needing to take naps and not waking up early on the weekends when our kids wake up because I don’t wake up to the noise. I have explained this to her and even told her she can just wake me up and I’ll get up and she can sleep in. This isn’t a good enough solution for her and essentially I’m a bad parent because of this she says because of the extra sleep I need. I clean, cook, watch our kids and do the majority of the stuff around the house but she is up with them and watching them more often during the weekends.

Looking for any recommendations on how to handle the situation or try to improve things. As far as medications I take adderal which helps somewhat and haven’t had any luck with any of the other medications I have tried.

Any one have an alert idea or purchasable item for sleep attacks? I would love a service dog but at $18,000 that’s not in my future. I was hoping there was a way to have my Apple Watch or other brand alert me but I don’t see a consistent way or a way without many false alarms.

Anyone find a solution? Even if it’s after the attack comes on, but can help keep you awake (ie. continuous buzzing).

Thanks!

I've seen people talk about slurred speach but not as much about stuttering.

On a regular basis I barely ever stutter. If I do it's usually when forget a word or say the wrong word by accident so it's mostly just me saying "uh uh uh uh" or "the the the the" while thinking.

When I'm having a conversation where I'm extremely scared and I have really bad anxiety about talking, sharing, whatever, I will stutter bad. Usually I'll also be crying while trying to talk and be in sever emotional destress because of fear and I'll just get stuck saying the first letter of the word over and over and over again. Like some kind of broken record. If it's "I" then I'll just get stuck saying "I I I I I I I I I I I I I I I I I" until I can break out of it or the person I'm talking to breaks me out of it. I can more other parts of my body because my hands are usually aggressively fidgeting while it's happening. In fact when I turn into a broken record the fidgeting get more and more aggressive.

Does that sound familiar to anyone? Or is that just a me/anxiety thing? I've mentioned it to my doc before but I wasn't able to explain it very well back then probably because of anxiety.

I’ve posted on here about the same thing before but I just want to get some feedback from you guys again. I’m aware you aren’t doctors. I’m 15 y/o male and have epilepsy/ Anxiety. I talked about my terrible daytime sleepiness which has been present for a few years with my neurologist a few months ago and he recommended me to a sleep doctor. I never feel rested ever. Even with 12-14 hours of sleep I find myself needing long naps throughout the day/ sleeping in half my classes taking a toll on my grades. Thyroid is good, all vitamins in check/ minerals. Medicine induced tiredness is ruled out. I talk with a therapist who works with sleep disorder patients and he suspects narcolepsy. Some parents say it’s nothing to worry about cuz “teens are tired” I have an appointment tomorrow to schedule a sleep study. Have any of you guys went to a pediatric appointment? What happened with you guys?

I took my MSLT yesterday and I'm worried that I actually didn't fall asleep for most of my naps. I know that it's common to feel that way if you have narcolepsy, but I'm still concerned because of the time that she woke me up since she said she would wake me up after 20 minutes if I didn't fall asleep. The only thing that's giving me hope is that I know for sure that I fell asleep, reached rem sleep, then woke myself up from my nightmare all within a 20 minute period during one of my naps. So either I didn't sleep for most of my naps, or I reached rem so quickly during my naps that she woke me up early because she had the info she needed. Please tell me this is a common experience because I am so worried.

I have IH and just found out that my doctor is prescribing me 1x dose/night, instead of 2x doses

i know 1x dose/night has worked for people with IH, but I genuinely think I would be better off with 2x dose - I wake up a lot during the night (and align more with N2 in that regard) - I think it would be easier to switch from 2 to 1 in terms of supply/prescription - I’m also worried about starting with 3g 1x, instead of 2.25g 2x as I want to experience less side effects

do any of you have advice on how I can effectively push/convince my doctor to make it 2x doses/night + do a slow titration schedule?

Does anyone here have any experience with dealing with ICBC after their diagnosis?

I assume I need to report my diagnosis but has anyone successfully made a case to have their license returned early. I have been successfully treated for 6 months.

Hey guys I'm narcoleptic/cataplexy just had a question for those of you who may have experienced this, so I work away from home 12 hours a day in aviation, I just ran out of my modafinil and will not be able to get refill for 5 days, for those of you who may have experience with suddenly stopping the medication what could I expect from your own experiences ( not looking for medical advice) just wondering.

Omg I took 100 mg today and it put me to sleep onto coma for like two hours 😭 is this normal? I literally dont feel a thing from it..

do you just sit around and kill time? is there anything you can't do because it will mess with results, like use screens or exercise?

Can anyone who has ever been on Wakix share their experiences with changes in mood, specifically irritability? I have bipolar type 1 and have many struggles with anger, and I think Wakix is making it worse. I'm calling my doctor on Monday.

I was diagnosed with type 1 last year and while it does affect my life, I feel like my case is a lot less severe than it could be. I’m unmedicated right now and I take 2-3 naps per day usually, my cataplexy is really mild, and I don’t wake up during the night. The doctor said my overnight sleep looked perfect. I know the PSG is just one night and doesn’t give an accurate picture of everything, but still.

What I’m worried about is my narcolepsy getting worse. It started with just sleepiness and then the other symptoms started later. And it’s been the same ever since. But, could some event happen and make it permanently worse than it is right now? Like a viral illness, stress, hormonal shift, etc. Type 1 is caused by an autoimmune reaction but I’m not sure how those can change over time. I can drive fairly well but I’m worried my cataplexy will go from being mild to full collapse and I won’t be able to drive anymore.

Sorry if this is a stupid question, I’d like to learn if anybody has an explanation/research!

I got a letter from my insurance last week letting me know that they're not going to cover Xyrem anymore (starting July 1 😱) and I'll be switched to Lumryz. I messaged my neurologist to figure out the logistics, and she's trying to fit me in in June to get the paperwork filled out. I'm wondering how long getting enrolled with the pharmacy took, what your experiences were like switching from twice-nightly to once-nightly dosing, and how worried I should be about running out of meds before I get set up with Lumryz.

I'm lucky that my shipments have been coming towards the end of the month, so I have a bit of buffer time, but I am worried about the Lumryz REMS & pharmacy being dysfunctional based on what I've heard from others. I really need my meds to function because I have to write my whole PhD dissertation proposal this summer!! Any advice you have to speed the process up would be much appreciated.

Hi guys. I’m currently still waiting for my diagnosis of narcolepsy, in the meantime I’m on modafinil but I’m still struggling to stay awake most days.

I went on leave for a while because everything got really crazy with work and I just couldn’t handle it, and now i’m in my phased return and I’m realising I can’t go back to full-time work. I’m currently only working 9-1 and i’m still exhausted after, and my brain fog is terrible. I currently work in publishing and I’m thinking I probably have to give this up, as editing through brain fog/tiredness is next to impossible.

What jobs does everyone do? And how did you cope with essentially giving up a career you really wanted?

I’m considering working for a charity as they’re more likely to offer part-time work. I just hope I can find something that pays well enough to live lol.

Are any of you in r/sleepparalysis? I see posts ALL the time there asking how someone can “achieve sleep paralysis” … Like what the fuck?? It isn’t something to achieve, it’s a negative symptom of our disorder (amongst others). Why is this something someone WANTS to have happen? It’s so annoying to see people acting like it’s a cool or fun thing to happen. It’s scary, confusing, mentally painful, contributes to even MORE sleep problems, and the list goes on.

TLDR; People are fucking annoying.

I returned to my pychiatrist with the sleep study in hand, and it was almost as if he did not want to investigate further for a diagnosis. I pointed out some inconsistencies in the sleep study (elevated REM, low rem latency) and asked if he could prescribe the nap study.

He went "whatever for? Wasn't one sleep study enough for you?"

Then proceeded to tell me cataplexy and sleep attacks were a normal thing because everyone gets tired and anxious from time to time. And I probably should just get a better night of sleep, and keep taking my SSRIs and the daytime tiredness I have been feeling all my life would eventually wear out. Proceeded to prescribe me Ambien "to help me sleep better"... despite Ambien being a trigger to hallucinations and sleep paralisis for me.

Also. Apparently, according to him, Narcolepsy is mostly diagnosed in men and I am a woman.

I closed the appointment saying "Is it mostly diagnosed in men because women being tired has been widely normalised in society? Or is it because you are used to downplaying women's symptoms in your practice?"

He went "I am the doctor here, ma'am. You are not."

Now I am scheduled with a neurologist and need to find a new psychiatrist. Hooray! FML.

Hi all, basically what the title says. Has anyone else here on Ritalin felt like it has affected your menstrual cycle? I’m on the pill so my periods tend to be pretty regular, the only change is that I started Ritalin about a week ago. Just wondering if there’s a connection there, or if I just have bad luck! Thanks.

Hey guys what are some coping mechanisms You stopped with medication? . I saw a post about not needing music, or sound 24/7 which is something I currently do.

About two weeks ago I started taking Effexor 37.5 for cataplexy (mild cataplexy) and it actually worked really well, however I started getting tingles at first it was just random scalp tingling and sometimes other parts of my body then I woke up the other morning and was having tingling in my pinky/ring finger I didn’t think to much of it as I’ve had tingling there plenty of times, then I started getting tingling in my feet, legs and even on my tongue. I panicked and went to ED to get checked out they said it’s most like the Effexor unfortunately for me since my labs have came back fine (just have to do thyroid tests) but I’m sure they’ll be fine, if it’s doesn’t go away now I’m stopping it and my bloods come back fine then they want to send me for a EMG I’m just hoping it is in fact the Effexor that’s causing this, has anyone else experienced anything like this with taking Effexor? It’s been 3 days and the tingling still hasn’t stopped.

What other options for medication for cataplexy is there in Australia?